I've spent a long time reading posts - which, I must say is pretty depressing.
Is there any hope that life will be worth living ever again? It seems that no one has any positive story or comments or has anything to report that makes me optimistic. I'm hoping the reason for this is purely that the nature of a forum tends to be a place where people seek solutions to problems rather than shout about how they have come through it successfully.
I've been lucky enough to have a reasonably healthy life until the past few weeks and I'm finding it hard to accept this condition and reports of the negative effects of the condition and treatment indicates an end to life as I have known it. It's all very scary.
I am newly diagnosed and heading towards starting treatment during the next 2 weeks.
I welcome any reassurance anyone has to offer.
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I think you have answered your own question there. Don't feel too despondent, you are reading the posts where people are struggling, I am sure there are others out there who are coping well and therefore have no reason to post.
But you make a good point, perhaps those that are doing well on treatment might like to tell us their stories too, to give us all some hope. I am wondering why you aren't starting treatment now instead of 2 weeks time?
Have you been given a PMR diagnosis?
This is a brilliant forum that hopefully you will find really helpful, and perhaps answer some of your questions already.
Don't feel too disheartened. I am sure others will be along soon to say the same.
Thank god for this forum. I am nearing the end of the PMR journey of nearly 4 years. With the guidance of subscribers I am now at .5 mg and expect to be off completely by summers end. You are not alone. Stay involved with this forum.
Posters tend to be looking for solutions to current problems. We have many more members who don’t post and honestly, when these diseases depart, wouldn’t you want to disappear into the sunset?
I have had PMR that I managed in a text book way, thanks to this forum, it’s advice and support. I was able to live a full life, caring for my little grandson and travelling. After 4 years and when PMR had burned out, I unfortunately developed GCA/LVV. The forum had pointed me towards an excellent Rheumatologist who is a leader in researching and treating our conditions.
Before my diagnosis, I did fear I had something much worse. At least this can be effectively treated and it eventually goes into remission. I imagine that you will feel more positive when you are being treated. I really hope you stick with us. It has been transformative for me.
I am looking for a rheumatologist in the Essex area. I am back in a lot pain and my Gp won’t give me pred anymore as I’ve been on it for two years and pmr “only lasts tw years”. Is yours in Sheffield area
Raise a new post asking for members’ advice on a Rheumy in the area your are looking for… not everyone will see this comment in the middle of a long thread.
I am surprised that you cannot get more pred from your GP if you are still suffering from PMR, unless you tapered to 0mg over the two years. To stop taking steroids is risking adrenal crisis.
Those on the forum who are more clued up about medication will be along soon. You have posted into a thread on a non-related question.
If there is any other GP at your practice, I would try to speak to them. Yours sounds very difficult to deal with. PMR doesn’t operate in a textbook way.
our doctor is so good on the whole and we have had face to face appointments on the day through out covid! Not many people can say that . She is just so “text book “ that is the problem here. And I am labelled a worrier unfortunately which also doesn’t help 😂. Will wait and see if I get any recommendations on local rheumatologists and keep resting and pacing myself
I'm hoping the reason for this is purely that the nature of a forum tends to be a place where people seek solutions to problems rather than shout about how they have come through it successfully.
Yes it is - but here is a positive view of life after GCA & Pred - and 6 years on, I can categorically say I am still enjoying life to the full-
There are quite a few of us Zero Club members on the forum, but many leave once their illnesses are in remission... much like leaving school and not keeping in touch.
PS- agree with PMRpro, life in general and any illness is what you make of it.. we all have moments when we think “this is not what I signed up for” .. but as humans who have existed for millennia we are very resilient-and adjust to a new lifestyle for however long it takes. And PMR and GCA are not forever (unless you are very unlucky) -so find whatever positive you can every day.
As the title of Richard E Grant’s book about dealing with his late wife’s illness/death - find “a pocketful of happiness” every day… even the smallest thing can do that.
I'm on a Facebook group that seems to have the opposite problem. All it seems to be is people announcing that they're finally off pred. Not much help to me, and a bit depressing, to tell you the truth.
Find facebook is a bit like that at the best of times.....and not sure which group you are on but I doubt it's members are savvy about our illnesses as those on this forum are!
I tried a FB group and had to leave because they were a) all about not using pred, b) whining about how crappy they felt and c) rude and unhelpful to people who pointed out that corticosteroid treatment was not the end of the world. There was another group which had the potential to be very helpful but it didn't seem to garner much attention and more or less died out, but the admin had posted a couple of really useful little essays about PMR.
I do miss the old Patient group with content much like you find here, but better organized, but basically killed by poorly considered updates which made the site almost unusable. I'm grateful to be here.
The nature of a forum like this is for the people who don't know/are having problems to seek advice and for others to share their related experiences. The recovered are elsewhere, living it up post pred.
However, living with PMR/GCA is what YOU make of it. It stops me doing some things - and to adapt to how I do other things. But the greatest effect on my life in the last 18 years since PMR started has not been due to PMR. I have travelled the world, participated in international meetings and assisted in the publication of Proceedings - PMR made no difference at all. As a side effects we took holidays touring in Australia. Canada, China, Japan and S Korea. I continued to ski for a long time, only giving up due to injuries and other illness, PMR meant I went about getting going for the new season fairly slowly but I was up the mountain 2 or 3 times a week all season. Skiing isn't only bashing hell out of black runs.
There are many posts about what we do despite PMR/GCA, they are posted regularly. I know, I have read every single post for the last 10 years or so. Skinnyjonny didn't do as much as usual during PMR, he started in a wheelchair, but just before Covid he nearly climbed to the top of Annapurna.
I'm new to this too . Started out last August. This group has helped a lot more then my doctor! Any worries I've just asked and they done their best to help. Yes it is scary and life has changed. But we all have to get through this the best way we can. So take heart we are all here for you. Best of luck x
Over the last 20 months since the diagnosis of PMR, I start my day with a cup of tea reading this brilliant Forum's posts. The advice, wisdom, encouragement, insight, support, reassurance have been instrumental in my positive navigation of this illness. I'm back to doing splits in my Yoga class now amongst many other things!
Thanks to Dorset Lady's DSNS slow taper, I am tomorrow starting the 5 week reduction from 7.5mg to 7mg (I started on 15mg of Pred the Wonder Drug in May 2021).
I cannot thank you and the other Wise PMR Owls (we all know who you are!) strongly enough for your commitment to this Forum that has become a life-line to so many of us.
I have made friends with PMR, and have learnt so much about the illness, myself and life, all thanks to this Forum.
Yes, I am regularly known for being full of hot air! So good to get your quick reply...I'm still in bed supping tea! Thank you for putting me right about the 5 week DSNS taper.
Don't know what's the matter with me! Some posts on this forum bring tears to my eyes: yours is one of them😍 I simply couldn't agree more with you. Thank you for expressing my thoughts, this way👍
There are some good news stories around, but obviously, as others have said, it is those looking for solutions who tend to post most. The really good news is that there is a lot of experience on here and a whole raft of helpful suggestions to help mitigate the less good aspects. It does take a while to get your head round the sensible bits of your body going awol but it is possible!
I’ve been on my scuba diving holiday and am pleased to say I was able to carry all my equipment, get in and out of the boat, walk in and out of the sea, and do 3 dives a day, about 3.5 hours underwater daily. So far I’ve been keeping well apart from OA in my right hip though it doesn’t hinder me too much.
Hi MnocI to am a diver and once during my journey did I have to get back to weight lifting to build strength for diving. All of a sudden 1 yr before covid I could feel I lost alot of muscle but got back to lifting 200 lbs.
Covid hit but I have to go back. It's the 1 sport that pmr didn't take from me.
We're about to leave to Bonaire and Curacao. We're are you diving?
I did my dive training in the Irish Sea , but as I got older it became too cold ! For the past 6 years I’ve only dived in warm water. Most recent dive trip was shore based in the Red Sea. Have been to Curacao , Saba and Bonaire and loved it. Also loved liveaboards and diving with sharks notably Grand Bahama, Red Sea and Maldives.
As a fellow scuba diver I love your post! I continued diving for 5 years after being diagnosed with PMR. My hubby and I stopped diving for a number of reasons, nothing related to PMR and we miss it so much.
Diving has been my passion for 20 years, wish I’d started earlier. My daughter did her training with me and has been a great buddy. I’ve also got a friend who’s been my holiday dive buddy for 10 years. Hope to keep going as long as my health and body allows me to.
My husband and I and our two sons, ages 8 and 10, at the time, did the pool training in 1989, just before moving to Papua New Guinea. We completed the open water dives in PNG and did over 500 dives in the 5 years we lived there. Amazing reef and wreck dives, and we've never found any place as great, even the Great Barrier Reef in Australia. The place we most enjoyed after leaving PNG was Little Cayman Island.
I’m here to give you some hope. When I was diagnosed with GCA 1 year and 7 months ago I literally wanted to go to sleep and not wake up. I had all the side effects that pred can give. I relapsed 3 months in and had to go back up. I eventually got off pred with the help of Actemra. I am very happy right now and feel I have a whole lot of life left. I’m not the same as I was before. My arthritis is worse, I now have back problems. But I’m pretty much doing all the things I used to do pre GCA. I’ll admit I’m a little paranoid. Every headache, ear pain etc I’m afraid it’s back. But right now, I often watch my grandkids, take my dog for long walks, meet with friends, take vacations etc. Life is pretty good right now and I’m happy
Thank you for the post, I’m at the point where I don’t care to wake up. I know there is always a reason to wake up, I guess. I have always been a glass half full person up til now. I am truly too tired to care anymore. But I keep coming back to read posts and maybe see something that inspires me. Thank you.
Hello. I have reduced from 15mg to 1mg in about 2 years. I am not fine but I am pretty active. Just passed my 60th Birthday. I hope to improve a lot in the next year.
I read this forum pretty much daily but rarely post anything because despite having PMR for 6 years and still on 8.5mg pred. daily, I can honestly say the PMR itself really hasn’t impacted my life much at all and the side effects of being on pred. are minimal. I guess it’s only the people who do have problems who post regularly and those of us who are lucky enough to be able to get on with normal life have no reason to. It would be interesting to know the proportion of people who aren’t too badly effected but I’m guessing it’s the majority. I do hope you are one of them.
I would say that life with PMR is what you make of it.
I don’t let PMR rule my life as I carry on as I did before. I probably am more tired but I am also older than before PMR. I walk and rest and do mostly the same as I did before, sometimes more. But then I rest for a while. It has made me lose weight as I cut my carbs and in some ways I feel better for it.
I understand the diagnosis is hard and acceptance can be harder still.If your diagnosis is new and you've only started reading posts recently you may have just been unlucky in not seeing the positive posts that often pop up and make people feel more hopeful.
There have been many people on the forum over the years whom had difficult journeys early on but got back to doing sport and even charity runs for the charity.
Obviously , those posts pop up less because people generally come to forums for advice if they are new to diagnosis , or having a flare , more often than to tell people about there good news. There will be many people whom come on the forum and just take the advice whom have mild or more straightforward cases that find the advice helpful and don't have the issues posted about whom never need to post about their experience.
There are many positives even at the beginning of your journey . You have been diagnosed and will begin a treatment that will keep that pain under control while your PMR is still active. You've found the forum and can get advice on Accepting it and using Pacing and Self Care to help reduce the chance of flares which makes your treatment smoother and speeds up your recovery. You don't ever need to feel alone in this as you can write posts like you have today and find people whom really understand how you feel to listen. You , like many people , could have a straightforward case of PMR and find you are over PMR in a few years.
I have other health issues but my GCA is in remission and I've been off steroids for some time. Despite my other health conditions , which include Ehlers Danlos Syndrome, Fibromyalgia, Chronic Migraine and Dysautonomia which restricts my ability to do activities or go out alone , I still completed the Diabetes UK One million Steps / 10,000 steps a day challenge over the Summer with my OH , even if I had to use my walking sticks to do it.
I had to give up my career as a professional Land Artist because of my ongoing illnesses but I've now found a creative outlet , and a little income stream , as a photographer. I'm working with my Physiotherapist on research about improving physical therapy for all types of Chronic Pain and training to be able to help as a local Patient Mentor for Pacing Sessions.
You may need to adapt what you do and adjust your expectations but you are still You , it's just what You do that changes , and often for the better. After learning to Pace Ourselves we often have a far better , less stress filled and more positive lifestyle because of those lessons when PMR or GCA is well in the past . So don't give up Hope there's still a lot to live for.
PMR and the side effects from Pred seems to have had such a negative effect on most people’s lives who post on here. This is what has coloured my view of this condition as a whole. I knew nothing of this horrible disease until a few days ago. I’ve received positive comments recently including yours, so thank you for that.
If you read the patient information leaflet for any drug, you will see every conceivable side effect listed [21st Century adversity to litigation laws], but that doesn’t mean you or anyone else will get all or even a few of them… and honestly all of the most common ones listed for Pred can be easily managed/controlled.
And, in the great scheme of things, PMR is not a horrible disease…it may be strange and a little frightening to you because you know nothing about it as yet….but it’s not terminal….
Find out as much as you can, good and bad about it [as you are on here]… then think rationally about it…and then take the medication and get on with your life…it may not be perfect, but then what is?
Hey, woh, woh, I replied to your earlier post in a very positive fashion. Any online forum is bound to have the problems of people looking for help, information and support.That doesn't mean that all have the same problems and get affected in the same way. We all do have a long term systemic disease, but it's not fatal, yes it may be life changing for a long/short time. However, it is something that's controlled by those little white tablets. They gave me my, relatively, normal life back. They may well do the same for you. There are always people here to help and support, at whatever time of day or night.
Thank you for responding . I guess I’m just very scared of the unknown. This is something I’ve never even heard of before and certainly I don’t know anyone who has/had it.
Well you are getting to know us all now 😃! I have been following this thread al day and it has been heartwarming to hear all the positive stories from everyone. We are all quite amazing 👏 👏 👏! Sending hugs and best wishes to you Lllbis x
When I was first diagnosed six years ago, I'd never heard of it but was so relieved to have a diagnosis of something that should eventually go into remission. Surprise as I found several acquaintances had the same diagnosis. Finished with daily pred beginning of 2022 but still on methotextrate. Apart from aches from osteo, and having difficulty getting up if I'm foolish enough to sit on the floor,, I can do what I need to and live well. I go ballroom dancing three times a week and that has kept me moving. Recently the rheumy said exercise is an important part of managing the condition.
Aw, of course you're scared of the unknown - we all are! It takes courage to admit it. Getting Pmr is not great, but once you start the treatment your pain will go and you should be able to do what you want. You will have to adapt and take things a bit easier and reflect more.
You are lucky to have found this wonderful forum. Lots of well informed people in here, and they will always be here for you.
I’m 72 and I had never heard of it either. My doctor had no idea what it was. I started with it at 68 and was on pred 3 yrs. I decided to take myself off it and it was the worst experience I had ever known but I’m off pred by one year now. I sometimes get little flares but I manage with aspirin. There’s nothing better than saying, I’m going to kick PMR’s butt., and doing it. Not saying my way is easier or better. Just saying keep positive and do what you got to do. Read these daily posts and you will learn more than the Rhumy’s do. The ladies and gentlemen on here are the best. Good luck and best wishes to you.
I had never heard of it either when I was diagnosed 3 years ago. I’m now down to 1 mg and am thankful every day for prednisone. Honestly I’d like to stay on 1 mg forever! I can pretty much do what I want. I play pickle ball, golf and I’m on a bowling league. While I am sore a couple days afterwards, it is not too much of a problem. I just bought a vibration plate and it does appear to help me stretch and with muscle soreness. Hang in there Lclmlbls. It does get better!
Thanks for you reply. I have just about got my head around the fact that I will start with the pred next week after my doctors appointment to have a chat about a few things. What can I expect from the pred?
Will the pain in my shoulder go and enable me to put on my coat normally and move easily in bed from lying to sitting?
Will I be able to walk properly (without walking like a 90 year old as I do now) , and be pain free?
Will I have to continue taking paracetamol? I can ask the doctor these questions, but I'm guessing she has no first hand experience of the effects.
Maybe have a read through this info post - and yes if you are you are on correct dose of Pred, and give the initial dose time to work you should be pain free, able to get up, dress, walk and stop other painkillers….in fact get your life back, although you will still have the underlying illness until it goes remission. But you can get it - and keep it under control.
DorsetLady thank you for sending the link. It is a very interesting article - not what I want for myself but at least I now know that basic facts and a realistic view of what to expect. I just wish I could wake up and find this was just a nightmare - it’s not though.
I’m not going to say that PMR/GCA is easy, nor that Pred is a pleasant drug, but there are a lot worse scenarios out there - I know that doesn’t mean anything much to you at the moment - but you will get through it. The human body and mind is very resilient, and there is always help on here - you are not on your own…just remember that…
That’s understandable - and like many things in life, when you ask a question [no matter how simple you think it is] you’ll get many differing answers.. just ask someone which is the best coffee shop in town!
Everybody’s experience of their illness and their reaction to the meds is slightly different - and how they portray it as well… yours won’t be exactly the same as mine, or anyone else’s on here… but as I said before you WILL get through it…🌸
Yes! Prednisone is a miracle, seriously! It should take care of all your pains if they are PMR pains and you should not need to take anything else. Please let us know how you feel after you've been on pred for a week!
Hi! There IS hope… I had this PMR illness for about 5 years, and just recently I’m feeling better and my inflammation marks Re NORMAL! I can’t even believe it. Even with Prednisone I always had CRP and ESR at least double the normal range. Out of the blue, I started feeling better and better ( from PMR symptoms, like ever present pain inside shoulder joints, hips, knees) and I clarify PMR symptoms because I also have Fibromyalgia, so they overlapped quite a bit. Now I feel mega tired in the morning but gradually feeling better by the day ends. I hope this gives you some strength in your mindset and know that it is possible, actually my new Rheumatologist (I moved to the West) says it was pretty much standard PMR, the way it developed. I saw 5 Drs. In 3 different states, and not a single one of them accepted that I had PMR. They all wanted to “convince” me that I had RA. I knew I didn’t. I even had to be on Enbrel and Humira without significant improvement. My story is very complicated, but bottom line is, there’s HOPE!
So many look down in PMR as being unworthy of their attention and how can a cheap old drug like prednisone work so well at even a low dose! Anyone would think they got a dividend for spending insurance companies' money!
You have put into words exactly how I feel, but like others have already said, those that post on here tend to be the ones that are struggling. Those that sail through it (although that sounds very simplistic I know) probably have no need to.
I really really want to be positive and believe that some people sail through this horrible condition, and I hope to be one of them. I really am trying to be a glass half full and fighting against the glass half empty syndrome!
Although it’s invaluable to have knowledge I don’t want to talk myself into, or imagine symptoms just because I’ve read someone else has them. Maybe to save my sanity I should return to the site when I’ve started my treatment and seek answers to actual problems I may be experiencing.
I’d like to thank everyone for all their help and words of encouragement. It’s comforting to know there is such a place as this to visit for support. I just hope I can find the strength that many of you have found in dealing with your many challenges.
I try to only read what might be relevant for me otherwise depression sets in! It's very hard to get your head around and accept that one week you seemed perfectly healthy and literally the next you just weren't isn't it!!
I hope you will find as I have that this forum provides you with a family of supportive friends who have various good and bad experiences of Polymyalgia Rheumatica to share. I would honestly say that this forum is one of the best things about getting the diagnosis and the rest is up to you. Yes, you have to learn to live with something you had never heard of before and don’t know anybody else with the condition but hey, you know all of us now and we are here to support you on this fairground ride. Welcome.
It depresses me too but remember there are a lot of people who get on fine with their treatment and make a good recovery - my sister in law in one - and never like some or us who might be clinging to the wreckage for a while.
please don’t feel bad. We all at some point or other feel very low no matter what illness we have been diagnosed with. I have been a PMR sufferer for six years and am now on a low dose steroid tablet which my rheumatologist is happy for me to stay on now as a coping dose (I am a (young ha ha) 76 year old and although can’t do some things the way I used to I lead a full and happy life. Yes,we do come on the forum and moan about things but I must say during my PMR journey this has helped enormously to find I am not alone and have found such encouragement from others. So take heart and know you are not alone and I wish you well on your road to better health.
Ofcourse there is hope - I found steroids acted like a miracle and I am on a low dose and reducing soon - pace yourself and don’t lose heart - there are bound to be problem cases on this forum but many questions are answered too
I’m lurking here because I was sure I had PMR but got diagnosed with RA. Strangely my onset was exactly the same as my mum and sister who have PMR but that’s another story. Anyhow, in all I know 4 people with PMR. 2 (in-laws family) were textbook and took steroids for about 2 years, lived pretty normally on steroids and PMR resolved. The other two (mum and sister) developed GCA and seem to be in a cycle of ups and downs. I think though that the worst part for them was a very long time to diagnosis as they were ‘too young’ to develop PMR and I am of the opinion that this impacts the long term outcomes.
I certainly understand where you are coming from. But, I think you are looking at things in a negative light. Without this forum, I, too, would be depressed. This forum brings hope and understanding to complicated medical concerns.I have told all my doctors about this website and they all agree that they have learned so much.
Why are you waiting 2 weeks before getting treatment?
Thanks for your reply. My doctors appointment is next week and there is something I need to do the following week (that I may not have the opportunity to do again) before starting a drug that may bring with it side effects.
I was diagnosed with GCA over Xmas with bloods being normal but biopsy positive. I hate the steroids, hate how I feel on them. I notice that a few hours after taking them each day a black cloud and anxiety creeps in. I feel that yes life has changed at the moment that each day is hopefully a step closer to being well. That’s what keeps me going. There are a lot of people out there fighting worse conditions…. That’s what I tell myself everyday. Depression and anxiety doesn’t help. That in itself is a battle. ❤️
Have you ever tried taking the pred immediately before bed? Many do for such symptoms so that they sleep through them. It is always worth a try. Or splitting the dose - sometimes 2 low doses don't trigger the same effect as one larger one.
It can be a lot harder side effects wise on the higher doses you need to take early on in treatment for GCA but this does get easier as the dose reduces.As Pro says you may benefit from taking your dose in the evening rather than the morning making sure you have the gastric resistant pills to protect the stomach and take it with some yoghurt or milk.
Some people do have more complex mental health side effects on steroids than is the norm , especially if they already had Anxiety or Depression conditions prior to needing the drug.
It's worth getting help with these side effects early on.
Keep a mood diary of how you are feeling and discuss it with your GP if it continues or is effecting your Wellbeing and thoughts in general.
You may need to take your medication in a different way .
You may benefit from taking another medication to help with Anxiety or Depression to help ease the side effect in the short term while on higher doses.
Or, if you already take medications for Mental Health issues you might benefit from an increase in that medication in the short term . Steroids can reduce how well some other medications are absorbed so it could mean a current dose isn't enough.
It is worth arranging an appointment with the GP to discuss it , and taking a friend or family member to sit in with you for support if it will make the appointment less anxious for you.
You sound very positive and strong minded despite having to go through what you are. Saying your affirmation to yourself that , " I am one step closer to being well again " is a good step. It's also helpful to write down the times you feel positive each day too, including the things you should feel proud of , no matter how little they may be or silly they may seem. Take care , Bee
Thank you lovely. I do have the enteric coated as I also am prone to ulcers. Finally cleared one in November. 🤞 It seems one hurdle is over and another begins. I have no faith in the Gp unfortunately. I actually trust this forum and you lovely people more. 😂🥰
I was diagnosed in 2021 and like many of us had lived an active life. My first thoughts were the same knee jerk reaction that you are having. However having researched as best I could and found this wonderful site my journey has hitherto been fairly smooth sailing apart from more fatigue which hasn’t hindered me too much. I use the 7 week slow taper (tried the 5 week but it didn’t suit me and I am about to transition to 4.5 mg of Pred from 15 in the beginning. I know I am very lucky that I have been able to carry on with my life (still working full time at 71 and interactive with my 9 young grandchildren) but I have also took advice from these wonderful people and swopped to an antiflammatory diet and suggested taper. So, yes there is hope. We just have to be sensible and do what is right for us which is not always what the medical ‘experts’ suggest. I wish you well on your journey.
GCA/PMR are just another problem we have to deal with as we get older…. How you deal with it is entirely up to you, I have found that this group has helped me to do just that, it’s not doom and gloom just others letting me know what can be done… I daily thank all those who have given me good advise, knowing I too can live a full life given the right treatment and attitude…. I hope you too find this xxxxx
I started on steroids in March 2021 I was a fit 75 yr old at the time. I have fought against this illness ever since, I am now down to one and a half ml a day and my aim was to come off them in two years, I will not quite do that, but I’m still positive, keep smiling you will have good days and bad days, keep doing the same things as you have done previously, you will get knocked back sometimes but you can pick yourself up again. Stay Positive.Best wishes.
I'm at 6 years with GCA/PMR. Hasn't stopped me travelling, working, being active, socialising. I changed my way of eating. I learned everything I could about the illness- majorly thanks to the wonderful people on this forum- which meant I looked at my health as something I could take control of.
In a word, take up the challenge. ( I almost wrote fun challenge: that would be a bit over the top but honestly there are much worse illnesses one could have) Wishing you the best .
3 Years in and I still do what makes me happy all be it modified. No getting away from the fact it can be depressing in the beginning. However, take it slow and steady and before you know it you will look forward to the things you can do rather than those you can't. Stay close to the forum as there are many people who can and will make time to help you....
I felt just like you when I was first diagnosed. I was actually quite shocked /alarmed at getting it because I had been blessed with good health and not been on any permanent medication for 61 years! I will be 64 in June
I started on 20mg. January 2020 and now am down to around 2.5mg. The journey has been a slow but steady improvement. Current symptoms are very manageable. Just a tiny bit achy some mornings that usually goes by lunchtime. I didn’t have to alter my life much at all, I was just more tired in the beginning , so just pace yourself and you will be fine The steroids at the right dose really do make things so much better than you feel now
Lots of people have helped me work out strategies on this forum with their posts. Everyone has a different path. I wish you a speedy improvement and early release from PMR
PMR/GCA is scary in how it comes on suddenly and changed me from a very active person to virtually housebound overnight....in the months that followed this forum where I could find information and talk when I was overwhelmed was and is indispensable. But like many others on here I don't talk about how the medications controlled and diminished the pain .. how now after two years I am very active again and more or less back to my pre PMR life and how I am going into remission. And thanks to your post it is lovely to hear positive things from others too. Good luck with everything.
My debilitating PMR was brought under control by Pred very quickly which was a huge relief. it took me nearly 3 years using a very steady and slow tapering plan to reduce the amount my body needed and I have been PMR free now for nearly 3 years. So there is hope - plenty of it! And yes, lots of people have gained immense help from the forum, their condition has left them, and they no longer log on. But I feel as though I have gained another 'family' on here and so like to read it daily!
Take control when you see your GP - it's your body and your pain. There are many, many stories on this forum of GP's who don't come across PMR often and/or maybe reluctant to put their patient on steroids and allow them to control the dosage. I hope yours is not one of those and lets you get on with it using advice from here.
Hi Dambusters...so agree with the list ticking...sense of achievement, however small. Also list the positives each day...even a snowdrop appearing...or today as we sat in a traffic queue and a young lad went past on the pavement on his scooter, making signs to offer to tow us...made me laugh.😉🤣
Hi I’m a 67-year-old female. I had PMR for awhile before being diagnosed. I was so pleased to get a diagnosis as I thought it was due to age. My chiropractor diagnosed it in the end not my doctor. However, being somebody with a high pain threshold, even the rheumatologist whom I have only ever seen once at the hospital wasn’t convinced when he made me do the exercises. Primarily I think because I’ve always kept on the move and carried on working (physical work). My diagnosis was atypical PMR!! At the time, I was probably taking ibuprofen for too long which could’ve been a problem for my kidneys. I went off the ibuprofen for a few days before having the blood test. Even my doctor was amazed at how high my inflammatory markers were. Once diagnosed I found the steroids took at least two weeks to kick in for me. I started on 15MG and I’m now down to 2MG. I really should be down to 1MG but I had a flareup at Christmas because I caught stomach flu . I only upped it to 4MG from 2MG but that helped a lot. I’m feeling pretty good at present and hoping to go down to 2MG this week from 3mg. I have to admit I felt really weak and depressed after the Christmas episode and the biggest help for me was taking B12 supplements of which I take a double dose each day.
What I also found helped me is the fact I have a dog. Even when I was really bad at Christmas I had to force myself to get up and go for a walk with my dog. He’s not a small gentle stroll down the road dog. He’s a medium sized, mad six-year-old labradoodle mix who likes nothing better than sniffing and pulling me along the grass verge. 😁
I also take Tumeric. Before joining this website, I had spotted another website which I haven’t been able to find since. I found a number of people on there who’d advocated keeping moving all the time even if it’s just a small distance. One person had managed without steroids taking only CBD oil, turmeric, walking and taking up yoga with occasional ibuprofen when it was needed. They seem to come out of it quicker and with obviously no drug side-effects. Be positive and you will come through this. Keep moving as much as you can and try supplements that are helpful in dealing with inflammation. Look at your diet. There are foods that promote inflammation and foods that fight it. Gentle regular exercise such as swimming. Since diagnosis I haven’t been back to the hospital once since my initial referral and I haven’t been back to my doctor. I research as much as possible on the website and try the useful suggestions that sound sensible. By early summer I expect and want to be off steroids completely. I’m thankful I’ve got my face back again from the moon one I had 😊
Don't believe all you read on some sites!!!! I had had PMR symptoms for 5 years before being offered pred. I was at the gym every day Mon to Fri - I did an acquafit class every day, mostly mornings. The earlier it was, the better day I had in terms of mobility and the days with Iyengha yoga or Pilates (heavily adapted) were best. But the pain was always there, day and night. I couldn't walk far because of bursitis and I could only do what I did because I could afford the monthly off-peak membership (hence no weekends) and had a car because public transport wasn't an option. I was mistakenly stopped from driving and I was immediately housebound. I managed to get to my flat here - took 2 days, bus to London, bus to Gatwick, plane to Innsbruck and train here. I went to bed for 3 days!!! But here, with no stairs to struggle up I was able to get my skis to the store at the bottom of the lift so I could walk to the ski bus. After a morning skiing I could move again - the hip action in skiing was fantastic at sorting out the pelvic girdle stiffness! But the pain didn't go until I had worked out the diagnosis and demanded action from the GP - 15mg pred from the rheumy and I had my life back for the following 6 weeks until I missed the first 5mg dose. He didn't think it was PMR but luckily other doctors did having seen the effect of pred. it is still here after 18 years and I am convinced that first 5 years is to blame.
I’m sorry you’re feeling so negative, Lclmlbls. It really isn’t all doom and gloom. As someone else has said, it is what you make of it and how you deal with it.
It’s almost 3 years since I was diagnosed with PMR & I naively thought I’d be off steroids in a few months. Ha. I’m still watching out for the pink pigs in the sky🤣
The only thing that has got to me slightly is all the other issues associated with taking Pred, I.e. high eye pressure, high blood pressure, etc, but I am almost 71 so I count myself as extremely fortunate.
I’m lucky in that my pain is definitely kept at bay, currently on 4.5mg of Pred, and I can do all the exercise classes I did before.
I can never thank this forum enough. There’s always someone to offer reassurance/help. You are never alone on here!
aaahhh how sad but I understand why you’re asking. Nearly two years in and on steroids I sometimes despair but there’s worse things to have. Once you start treatment you’ll feel a bit better. Here’s a hug 🤗
I was as despondent as you when PMR first struck, apart from the severe pain, things like difficulty getting in and out of bed, a walk that pre-pmr took me 5min was taking 20. However, with the Prednisolone I was soon pain free and have remained so. OK I suffered some of the Pred side effects on the journey but I could always do all the things I wanted to but in moderation. I'm now nearly two years in and down to just 5mg of Pred, feel good with no fatigue. There is light at the end of the tunnel so try to stay positive. No different that if you broke your leg say, you'd be laid up and incapacitated for a while but normal service would resume - slowly.
I think you have to remember that there are thousands of people who have Polymyagia and never look for help because they don't need it.
I am in my 3rd year of the condition and I have found this forum very helpful.
However....I have never seen a rheumatologist and am quite happy with my treatment.....
I have hardly changed my normal lifestyle. I constantly moan about bouts of stiffness but it has had little effect on me
when my condition is under control. I have given up yoga but continued with paddleboarding , Nordic walking and this year started ice skating. I have maintained my normal weigh of 70 kilos....so it's not all gloom and doom !
No, it’s not the end of life as you would wish it to be, so just be patient and hopeful. After 3 1/2 years of pred I eventually was able to stop taking it in June last year. Since then I have had other problems which I think had been masked by the steroids such as osteoarthritis, and a flare up of inflammation on my Achilles tendons. The rheumatologist thinks they were weakened by the pred. However on the whole I am enjoying life and walking moderate distances.
One thing I have noticed is that on some days, feeling quite my old self, I have walked too far and it was not a good idea! So be gentle with yourself as you recover. Good luck!
Hi Lclmlbls,,,, Welcome to the club, none of us really wanted to join but so much help, advice and friendship is here for the asking, no question too small to ask, I am now 18 months down the line and have so much help on here , one thing I did find particularly useful was a book - " Polymyalgia Rheumatica and Giant Cell Arteritis : a survival guide " by Kate Gilbert it sounds as if it is a very dry medical book ,but it is not, it is very easy to read as a whole book but also useful for dipping into as well to answer anything we are questioning, it is available on line from the giant River and is a very reasonable paperback . I found it very difficult trying to explain it to my children so just bought them a copy each !, Life is different yes but, not necessarily worse , it does go on, , I am now 82 years young and am still enjoying life 😀 all very best wishes .
Hello,
I think that people usually post when they are having a few problems with PMR. However, once you have learnt to manage a few side effects, (tiredness etc.) one can find one’s maintenance dose of steroids and carry on fairly normally. I get headaches on lower doses so avoid them. I grizzled a bit about this 👀. My neighbour is perfectly happy on 10mg and symptom free and I’m still OK on 7mg. It’s difficult to come off them without some problems, but some people are quite happy to coast along on a moderate dose. The Botox effect caused by a slight moon face that irons out any potential wrinkles is also a benefit to some ! When I hear what other people have to put up with, I’m thankful, that, although it’s a nuisance, I’ve only got PMR to deal with.
Hi lclmlbls sorry to read your feeling so low I've been there but it passed and will for you as well,iam in my 6th year with pmr and with the steroids lead a normal life with next to no pain ,I swim 4 times a week, walk a lot as well and love going out for fun. It's not as you say end of life as you know it you'll get your mojo back.Take care Harry x
Funny that - I think my Italian has improved a bit! I'm fluent in German as I need it everyday but the opportunities for speaking Italian in this part of Italy are a bit restricted ...
We have all been where you are at the beginning, confused, frightened. There are many positive stories in response to your posting, I could add mine as I'm pain free and almost back to my old self after 4 years of GCA and PMR, also two hip replacement ops. What really helped me cope was this wonderful forum and learning as much as I could about this strange condition. Being well-informed will help you cope not only with your PMR, Pred and its possible side effects but give you confidence when you talk to the medics who are often NOT well-informed as you have a relatively rare disease. Kate Gilbert's excellent book 'Polymyalgia and Giant Cell Arteritis: a survival guide. 2nd edition, is a must-have. You can get it on Amazon. I have gone back to it in my worst moments and felt better for its clear discussions of the drugs you might be offered and how Pred works. It is highly recommended by the folk on this forum. Take heart! It's not so bad when you get the medication sorted out and you learn to listen to your body. Be kind to yourself, rest and accept this journey that does have a positive end.
We ALL understand what you are going through in these early days of diagnosis Lclmlbls. Within 24 hours of taking Prednisolone, you may think that you have made a miraculous recovery.....it feels euphoric. I'm so glad that you have found this wonderful forum ....daily wisdom, support and understanding. We are all in it together, and I certainly feel sure that 'All Shall be Well.
If you do nothing else, stick with this forum. It has been my saving grace since being diagnosed with PMR in Jan 2022. There is always hope and many of us here who have issues crop up during our treatments, are looking for answers that doctors and rheumatologists cannot seem to give. Many, whose PMR/GCA has diminished or disappeared have no reason to post, but the success stories are many. It does not happen overnight, but sometimes over years. Hopefully, you will get treatment sooner or later, because the time before treatment is completely debilitating, discouraging and depressing. Hang in there with us and we will all walk with you throughout. Hugs!
Hi there I have just gone into remission as of January 3rd. I was on prednisone for 7.5 years. Never had a flare but did have problems with reducing at the beginning but found something that worked for me (CBD).
I did suffer with all the side effects but knew that was a possibility so delt with it.
Yes I hated that I went from super active to much much slower but it took time for me to let things go and not be such an A type personality.
I used the dead slow method and took time in-between drops and at 10 mg stayed for almost a year which I wish now I did that at 5mg.
I suffered bad with adrenal insufficiency and I can see coming out of it.
Not all is bad, I met some wonderful friends on this site and have actually met and become friends.
My advice is know the drug and disease and side effects so nothing comes as a surprise and work at minimizing the effects.
My main goal now is to get my adrenals functioning back to normal and lose the weight I gained even through I ate a low carb diet.
For many there is the other side and just don't rush. Listen to your body and this forum is great for advice and just a pep talk or a shoulder to cry on.
I would say yes, again and again there is hope. I have been hugely helped by this forum, who have given me hope as I realise I am not the only "peculiar" one who has not recovered from PMR after 2 years. There is nothing like the feeling of love and solidarity that comes from this online fellowship. In addition I have the hope that comes from my faith in God, who says "behold I make all things new". Be encouraged !!
Hi, I know how frightening it can be to suddenly be feeling extremely unwell when in the past you have been generally fit and healthy. Approximately a year ago I waited for 4 months for a diagnosis of PMR. I remember thinking how it might feel to be well enough just to go out for a cake and coffee. Once I got diagnosed and started on 20mg of prednisolone within 4 hours started to notice a difference and it was onwards and upwards from then on.
I am now down to 5 mg and although I felt quite unwell in the heat last summer (I know to avoid going out in very hot weather ) and I felt quite wobbly reducing from 7 to 6 mgs. I am considerably better and with the valuable knowledge and support of this group I intend to get there. (or as close as to there- where ever that is.)
I would say read some positive books and if you have a bit of health anxiety like me avoid reading about other possible complications- because then I usually start thinking I have got what others have also. Good luck with your journey.
You clearly feel overwhelmed by this relatively new diagnosis and it's potential impacts on a previously healthy life, understandable. The "Tsunami" you feel is however a mental creation of your own as though all the "terrible" possibilities of this illness are about to simultaneously descend upon you like the judgement of a vengeful God. You are encumbering yourself with depressing fate aclompis that are by no means as inevitable as you would imagine them. You will have to adjust, one step at a time to the challenges that come your way, what those will be and to what intensity is yet to be seen but you will help yourself by accepting the simple truth that you, like anyone else, cannot see the future so your doom-laden projection is no more valid than someone who is in complete denial. Be a friend to yourself, help yourself overcome whatever awaits you by unburdening yourself of unhelpful preconceptions, I recommend you reading the Stoics like Marcus Aurelius.
I've not much to add to what's already been said from these great people who share good and bad.. AND the best advice you'd find anywhere....other than I do hope you know everyone cares, and indeed it's a scary journey into the unknown that resembles a rollercoaster at times...but it's possible to live and adapt your life in ways that will help you see it's not the end but a little different. I wish you all the very best and send love 💐
Hi I have just been diagnosed and started on Pred last week. I’ve been amazed by how fast it has worked and how much better I feel already. Just keep going one day at a time and make the most of the small wins as it does help to focus on those rather than the setbacks. I hope your treatment will help and that your symptoms are reduced. Good luck.
I was on pred for 18 months and I hated every minute but tapered slowly and came off over a year ago try to avoid being put under pressure now by anyone .It can be done but I know I’m one of the lucky ones so KBO as Churchill used to say.I did find this forum extremely helpful even if only to confirm I wasn’t alone 🦄🦄
Hi,it is a quite depressing and worrying illness to have,not knowing if or when it will go away forever....but there will be light at the end of the tunnel eventually.
I started suffering with these horrible aches and pains about 2 years ago after being fit and active all of my life.I was eventually diagnosed, after being treat like a drama queen for a while, and commenced on 60 mgs of pred,(which I'm told is a really high dose) but i was desperate for any relief from the agony.It worked!!Yay!!
The doc really didnt understand the Prednisolone treatment, imo,and wanted me to reduce far to quickly.With help from this forum,I have successfully got down to 2.5 per day now and ,fingers crossed,all is going well.well.Gonna try 2 mgs next week and see how that goes.
So there is hope,try to find a bright side if you can,keep healthy and mobile,try to not let it stop you....being more positive really helped me,as in "You can do one PMR,you will not have the last say!"
I have had PMR for at least 20 years, GCA for at least 10. Misdiagnosed for years. Formally diagnosed at Mayo Clinic in Rochester, MN. Here is what I learned. We are strong. Success in life does not mean no pain or suffering. Success means being able to constantly reinvent one's self. Some days faith means just getting out of bed and putting on your shoes. In spite of suffering for years with PMR with no treatment, I successfully helped hubby run a cattle ranch, take care of other family members, including seeing my mother through 17 months of terminal cancer. I went back to school, struggled to exercise, thrive and succeed, without having a clue what was going on with my body. Year after year of painful tendonitis and muscle pain. I thought I was the problem. I was weak. If you have been diagnosed early in your illness, be grateful. At least you know, and if you know, and the doctors know, then a plan is made, and you work the plan. Adapt, change, reinvent yourself. I look back now and ask myself: "how the hell did I do that"? But, I did. Another thing to bear in mind is that PMR is not everything. Most/many of us are aging. There are other issues besides PMR. It is beginning to look like I may have arterial renal stenosis causing my untreatable high blood pressure. I have severe sleep apnea, newly diagnosed. One health issue plays against another. The best thing you can do is to not obsess. I know it is hard not to grieve over the person you were before you became ill, but you can't live in the past because you can't do anything there. All you can do is right now. Be kind to yourself. For years I felt guilty because I did not think I was contributing enough or doing enough. Learning I had PMR/GCA set me free to stop blaming myself for things I could not do. Embrace who you are, where you are. Embrace you. You will work through this, It is fortunate if you were diagnosed early. Many go into remission 4 to 7 years after diagnosis. The two year mark is proving to be wishful thinking, and an antiquated medical value. 4 to 7 years is more accurate. I was misdiagnosed for so many years it is doubtful I will ever be in remission. Rheumy says I will be on 5mg. pred rest of life. I am 67.
I completely understand your reaction. In fact my husband advised me not to be in this forum bc he thinks that being hyper aware of the complications experienced by many people would depress me and might become a self fulfilling prophecy. I ignored him. Ha! I was diagnosed in June of 2022 just a few weeks after the onset of symptoms. I started the prednisone and within 6 hours the pain was practically gone. I started tapering in September. I am now at 7mg per day. I saw my rheumy last week and he says that I will be off of pred in six months. He says that the PMR will burn itself out. I feel fine. I have no pain and I have had plenty of energy. I read what other people are suffering with and I feel that I am having a very mild case of PMR. The pain was excruciating last June. Prednisone has saved me. I was very healthy before PMR and I am also 71. I hope that you feel encouraged by my experience. By the way, my blood pressure did go up as a side effect of the pred. Dr added amlodipine to my BP meds and problem solved. I am also being treated for osteoporosis bc a bone scan showed a bit of bone loss. This is another side effect of prednisone. Just monitor your body as you travel the PMR road. I wish you well.
I will be delighted to hear the guy has a crystal ball that works! But at 7mg pred you can't make any predictions and he can't know if the underlying autoimmune disorder has burned out yet. It WILL burn out for 95% of patients but who knows when.
Understand completely. I am choosing to be optimistic with the understanding that it might not go as hoped. Keeping optimism and realism in a nice balance. I am grateful for your expertise and this forum is a great resource.
It's fine when you do understand but we used to spend a lot of time mopping up the tears when people had been promised it would all be over in 2 years or, even worse, the doctor was telling them they were failures or not trying hard enough to get off pred. Some even threaten to just stop the pred - and I'm sure you know how dangerous that can be.
ProcrastiBaker thank you so much for your post. This is exactly the info I was hoping to read. Your husband’s thoughts reflect mine. This really does give me hope that I will be lucky enough to get through this. I’m hoping that mine is a mild case too. If I take paracetamol regularly my symptoms are much improved and my ESR is normal and CRP is reasonably low at 8. Both hips are affected (my walking feels a bit weird) and left shoulder fluctuates between being quite painful in the mornings to not so painful at other times. Right shoulder is fine. My GP suggested starting at 15mg.
I started taking a pill pack with graduated doses every day over two weeks. After that showed great results I started on 15mg per week and tapering every month. Get started on pred asap. Good luck!
Hi Lclmlbls, it does happen, I had PMR start suddenly in Oct 2020 after a flu jab and grieving for my wife . Usual treatment of 15mg Pred. and usual 6 hour miraculous improvement with the Pred. Slowly tapered down to 1mg now with pauses around 5 covid jabs and 3 flu jabs feeling nervous after each one. I was lucky with no significant flares and just a touch of stomach acid problems which fixed itself after a month much to my surprise. I slowly increased exercise levels back to previous amounts and used PMR to justify buying an electric Mountain bike, best purchase I have ever made. Now swimming, orienteering and mountain biking as before so am well pleased. Throwing a barn dance party for 60 friends on my 80th in a few weeks time and expect to enjoy the dancing. Used Michael Mosely's eating methods to avoid serious Pred. induced weight loss which worked well.
Keep positive and do what you can to improve your general health and read up about techniques which can reduce inflammation, try to fight back when you are feeling a bit better.
My experience with PMR and subsequent treatment has been a “blip” in my life. I was diagnosed with rheumatoid arthritis in 2004 after contracting salmonella. After a few weeks of treatment with prednisone, to bring down the extreme joint swelling, I was prescribed methotrexate, which I have been taking ever since. I have blood tests every three months, to monitor liver enzymes, CRP, and sed rate. All are normal, and my RA is fully controlled. In the fall of 2021, I had unexpected pain throughout my body. I could not lift my arms at all; I thought I had dislocated my shoulders! OTC painkillers did not help; ice packs did relieve the pain. I saw my rheumatologist a few days later, and he did blood tests immediately. All my blood markers were abnormal. He also gave me several physical tests, and said “You have polymyalgia rheumatica. The treatment is prednisone. You will take it for a year, gradually tapering off.” At the time, i posted to this forum, and several responses indicated that it was quite unlikely that the scenario would be as my doctor indicated. They told me PMR was unlikely to go away in a year, and most likely I would have to take prednisone for a long time, unless I was “very lucky.” So I guess I am “very lucky”—I tapered the prednisone as directed, and I am no longer bothered by PMR. My blood indicators are back to normal healthy levels. While I was tapering the prednisone, I asked the doctor whether I would have pain. My doctor said “Of course you will! Prednisone masks all kinds of incidental pain, so having pain while tapering is not unusual. It will normalize.” It did. By the way: my year with PMR was not a “lucky” one; my beloved husband became ill and died. The emotional, mental, and physical stress was almost unbearable. Despite the horrors of that year, I was able to eliminate prednisone. This forum was helpful to me when I was seeking information about PMR. However, over time there were several red flags. Several participants repeatedly suggest that doctors are not competent, that we all “know our own bodies” better than physicians do. There have been repeated suggestions about self-adjusting prednisone dosage. I believe this to be counterproductive and perhaps dangerous. This forum is NOT a substitute for qualified medical advice and treatment.
If this is Pavarotti and Ave Maria (doesn’t seem to want to load) -
It was my late husband’s favourite and his party piece [he had a lovely tenor voice] -and was always singing it whenever he was working -not necessarily in a religious setting- and certainly not in his early army days…
And at his burial in a woodland setting - certainly no religious undertones - it was played as he made his final journey…
Have just seen this. Pavarotti singing Ave Maria in a woodland setting. How exquisite. What a beautiful memory of your husband. A lovely voice is a wonderful thing.
Thank you - yes it is -he followed in his father’s and grandfather’s footsteps [always very musical should have been a professional really] - and it still gets me every time..even after almost 10years…. son has a good voice as well, but more baritone..but then he is a much bigger lad!
Hi there: Just wanted to tell you that I had PMR for 4.5 years and have been in remission since 2017. I had a lumpectomy while I had PMR and came through that and radiation successfully. Once in remission I had to care for a husband with Dementia and he had several other issues. He passed away last year. I was expecting that PMR might come back with all that stress but so far so good. So cheer up, there is light at the end of the tunnel. Once you get on Prednisone, you will see a huge difference. I still read this blog every day and so often items on other subjects turn up that have proved helpful to me. Take care. Mary (in Canada).
Dear Leimibis,
I just wanted to say that at the start of my PMR I was worried and bemused as before it I had never had to take medicine on a daily basis and was quite proud to tell the doctor that I wasn’t on any medication. After nearly 3 months of painful muscles and stiffness, I was prescribed steroids that had a miraculous effect and I was pain free. Originally my infection level was quite high, 140, and my doctor even phoned me in the evening a few times. Balancing steroids and prednisolone is easier for some I think, but a maintenance dose can eventually be arrived at. Side effects seem to vary per person, as for any medicine. Everybody’s experience is different so it’s useless to be depressed, as you don’t know yet how you will react to PMR or the steroids, also people on Health Unlocked have a wealth of experience and reassurance about any symptoms you might have. I’ve had PMR since June 2021. Life doesn’t stop because you have it, you can still carry on with your hobbies, see friends etc.
Sorry this is short as I’m dashing out (hopefully I’m not jinxing myself by bragging🫰🫰🫰😊)
I’m on 1mg just passing my 3rd anniversary but I’ve had quite an easy ride compared to some. And as others will say, those who do well and get out quite quickly mostly disappear quite too, so it’s the long termers who are around more to share their wisdom.
I have been intermittently playing (Spanish) Padel tennis again for the last 18months - using the term ‘playing’ loosely - I attend - wave my bat around in the general direction of the ball - celebrate when I hit it and swear when I miss it - there’s more swearing than celebrating but it’s fun and everyone is very friendly - and it keeps me going - I seem to have become the club mascot 😂😂😂. A Swedish friends husband (fitness instructor) dragged me into the on site gym the other day despite my protestations and I did 10 minutes of small weights and a little bit stretching-! No ill effects so when I get back to the UK next week I might start gently doing some of that -!to surprise them all when I get back to Spain in mid May. Keep your chin up !
There is a light at the end of the tunnel - as long as there’s not a flare lurking around the corner 🫰🫰🫰
And as others will say, those who do well and get out quite quickly mostly disappear quite too, so it’s the long termers who are around more to share their wisdom.
Not necessarily. There are a few of us who aren’t necessarily long-termers, nor [in my case] had a difficult time on Pred who are still on here to offer assistance.
sorry, you’re absolutely right and I phrased that badly - only excuse,.. I was in a rush to get out … I think there was probably spelling mistakes too 🤦♀️😊. Despite it sounding otherwise, I am aware that there are those of you who have recovered and stay on to help and encourage others, and I hope to be able to do the same in the not too distant future 😊
I tried to load this song through You-Tube. It would not load. Here are lyrics instead. Song saw me through some tough times. genius.com/Billy-sprague-pr...
Hi. I have just read your post. I was diagnosed with GCA in February 2019. It was very scary, as it came out of the blue and I had never heard about it before.
With lots of help and encouragement from my family, friends, members of this forum and a super GP and also the rheumy who has not been that bad compared with others, I have managed the situation. What helped me most of all, was coming to terms with the condition, knowing that it would change my life not end it.
About two weeks ago I had a synacthen test and the results were normal so now I can continue to reduce my steroids, I am on 3mgs at the moment, until I reach zero.
There have been some very difficult times but I have stayed positive and I am hoping that everything will be ok.
Just take one day at a time, listen to your body. Rest when necessary, have little treats and let people help you.
Keep watching the forum and posting, everyone needs a rant and moan every so often. I'm sure we have all done it occassionally.
Meanwhile take care of yourself and remember you are not alone.
this is a spot for people with problems. I had GCA for 4 years. Off prednisone and actemra in July, 2022. No symptoms since. So there are many if us who read this site daily for the length of time we had drugs etc. Now we are moving on. But as you see I check in and read a bit.
hopefully you’ve seen some positives posts now? I’m now on 5mg down from 15mg in November 2021 and no real flares so far. I have to pace myself but at 52 am still working full time and supporting a large family, youngest child is 15. It’s difficult at times but hopefully when you start medication it will feel better. I usually read through the posts daily but don’t post much, only if I have anything particular to add or a question.
Hello, Lclmlbls. I felt exactly the same as you are feeling when I was first diagnosed with PMR last April. My health has been my priority for the last 20 years - exercise, healthy diet, stress management, etc, I felt so fortunate. Then this happened and, like you said, my life has changed and I realize I am now at risk for all kinds of complications and side effects and my strength and stamina have been compromised. I do feel lucky when I read a lot of other stories on this feed because I am doing better than most, but I feel I have aged several years since last April and I am fearful of what might happen next, but try not to dwell on it... I'm thankful for Prednisone, but taking prescription meds is something I have avoided, and not really needed until now, but I would not be able to tolerate the pain without it. I tried when first diagnosed, but learned quickly that wasn't going to work... That is when I was at my lowest psychologically... I feel for you and wish you the best.
Hi there Lclmlbls, I am out here in California and rarely post but read the wonderful letters and advice every day.( I was diagnosed with PMR in April 2021 and a few months later developed GCA. ) The generosity and excellent advice have been invaluable and when I think of all the things I am grateful for (and there are MANY despite this ridiculous chronic illness!) this Forum is right up there. I am also grateful that, finally, I have learned to listen to my body - at a certain point I realized - probably more slowly than most - that the disease calls the shots. Some days I have to rest, and I can even enjoy it when I think of how busy my life has been. But I also continue to be a docent at the San Francisco Fine Arts Museums and the Crocker in Sacramento. I am involved in ART RX for people in chronic pain - it is an inspiration each month to look intensely at art with people who are so filled with life and courage in the face of illnesses much more severe than my own. Hang in there - the glass is more than half full - I hope your journey is not too bad and filled with new discoveries.
Good morning. Like you l had a very active life. Riding horses, gardening. Walking and running my own business. I gradually became more unwell over time. Doctors said it was age, fibromyalgia, my personality type was even mentioned once. In 2020 not long into the first lockdown l was convinced l had GCA as a colleague and also a customer had had the same symptoms. I was going nuts with a constant headache, and low energy etc etc etc. Luckily l had an excellent doctor take bloods and the result was ESR and CRP both over a 100. Instant 60 mg of pred and within a day or two l felt instantly and miraculously better. I have had a long road with pred and the illness but it does get better. I am nothing like as able bodied as l was but things are most definitely better. I was so happy to not feel as ill that l managed to accept things as they are. My advice for what it's worth is to not fight PMR or GCA just go with it. Try and rest each day and find new aspects of the situation that are good however small and seemingly insignificant they may seem. I found l had to be firm with my family when they had expectations of me that l couldn't fulfill. Also major thing avoid stress in all forms. If people don't like it there not friends. Hope this isn't to rambling and that you feel better very soon.
Thank you for sharing your experience. When you say you've had long road with pred and the illness - what was your experience - if the pills made you feel better, did you relapse or did you have side effects from them - or was it the illness. Did you know whether it was the pills or the illness having an effect on you?
The pills made me feel better, but l had a lot of the side effects mentioned on the leaflet in the box. I felt unwell when l reduced them and didn't realise for a long time that this was just the drugs and not a return of the illness
Sorry message went to soon. The pill reduction was the thing that made me feel unwell however the illness is still there and needs looking after. I used to have a lie down and still do if needed after lunch and quite often have a sleep. I had disturbed sleep early on and found any chance to catch up was very beneficial. I did have two flares of the illness and my inflammatory markers where elevated quite significantly. I am a hundred percent convinced that it was stress related, coming from family primarily but also from some things going on with my GP.. Just another thought l am nearly three years into steroids and just about to go down to 6mg. I think l would have got there more quickly if l had realised that the symptoms l was experiences were drug related and not GCA. We all have different experiences l wish you well with yours
I've been off pred for 18 months.It was a rollercoaster ride for 5 years but I'm through the other side and well. This site helped me tremendously whereas my gps were pretty clueless at times.The best advice I can give is to very slowly reduce pred and ask questions.
Hi I started prednisone November 2022 .Changed my eating habits no sugar and flour just meat and vegetables and fruit .It was hard but I stuck to it and I started to decrease my prednisone from 40 mg to 35 mg just kept doing it gradually at Xmas I was down to 1 mg .I had a few aches but ok so I got down to 1/2 mg and then I stopped taking prednisone.So far good I am starting to go to the gym to build some muscle and I still eat the same way meat veg and fruit. I was lucky so far I only took it prednisone for 13 months my doctor said I could stay on the prednisone for the rest of my life. But I decided not to stay on prednisone . So far ok a little bit of pain but managing .So yes there is light at the end of the tunnel.
please don’t give up hope everyone is different, just that some of us are taking longer than others, I have had mine 10yrs now from 60mg and now on 4.5mg for a month. Can’t understand why your Doctor won’t give you the preds, strange, good luck x
Hello there Lclnlbls, well if you're not feeling reassured after all of these responses, you never will. What a generous and kind bunch on here, eh? I've been on the PMR/LVV journey since late 2018. I began feeling much the same as you, although I didn't wait to begin treatment, and that miraculous first dose of pred was life changing. I've had a few ups and downs along the way, but the chums on here have always picked me up, brushed me down and sent me off on the right track again. I have just come off pred, actually yesterday, with the help of Actemra, which I continue to take. Don't know how I will go but I'm feeling optimistic for now. If it all goes pear-shaped, I'll be back here seeking wisdom and support, which I know I will receive. That's all we can do. Be grateful that this condition is not terminal and feel buoyed by the little positive steps you'll take along the way. This forum can be your guide. 🫶
thanks for your response. You must be happy to have come of the steroids I’m sure. The doctor I saw last week did want to give me 15g of pred but I was so freaked out by reading what the side effects were I wasn’t ready. My pain has increased and not so easily relieved with paracetamol so I’m just about ready now and seeing the doctor again this week.
Hello! I was diagnosed last September, after struggling with what I didn't know was PMR for 4-5 months. Steroids at 15mg had an instantaneous effect! I was then reduced to 12.5mg for 2 weeks and am now slowly tapering down (lots of good posts on here about that - I've gone slower than the GP and rheumatologist suggested as a result).
I'm now on 7mg, about to start tapering to 6mg, and other than some stiffness which doesn't stop me doing anything now, and a bit of tiredness (but then I often got tired before!) I'm back to normal life. Just a bit more conscious of resting more when tired, ensuring I'm taking Calcium/Vit D/magnesium/K2/Omega 3 (which I mostly took beforehand anyway) and not being scared to tell the gym instructor that I'm not going up a weight just now because I want to take things more slowly!
I may have just been lucky to have PMR mildly - if there's such a thing - but it hasn't been all doom and gloom for me. Yes, a bit depressing sometimes when you were very fit and healthy beforehand but compared to a lot of conditions, it's at least something that can get better.
I've put on 2-3kg which seems to have stabilised at that so maybe I can lose it with a bit of effort (I'm still eating the same as I did before I started the steroids) and my face is rounder but people just keep telling me I look younger and well!
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Hi there, I'm new
Costochondritis
GCA, Prednisone and is elective surgery ok?
Any Canadian PMR/GCA sufferers out there?
