Hi, I’ve just turned 50 and for my birthday week I became newly diagnosed with PMR, the end of May, 2019 by my GP, after pain and stiffness in my upper legs since Christmas week 2018. My ESR is now 60 and my CRP is a high too. My thigh and buttock pain and stiffness have improved moderately in the past two weeks or so. About 3 weeks ago now I woke up with two ‘frozen shoulders’. My GP suspected PMR which I’d never heard of but very quickly identified with because of classic symptoms. When my ESR went up from 15 at the end of May, to 30, and then to 60 within a week my GP went from... at ESR 30... scaring me off taking steroids, by saying she didn’t want me to “end up on a psyche ward” and having psychotic episodes to now when my ESR is 60 and she feels definite about her diagnosis, she is telling me to start steroids. I feel very unsure what to do. I need to learn more and prepare my life for that eventuality. Right now, I’m adopting a wait and see approach as I learn more. I am aware of the risks of GCA. Though i can’t find definitive statistics anywhere on risks, relapse and remission rates of PMR and GCA. However, i have been reading your posts and am getting a better and better picture. I’ve been reading lots of articles on PubMed and so on, and what strikes me from the literature on PMR (going back to the 50’s) is how confusing attributing phenomena and symptoms seems to be for the researchers. So I feel it’s hard for me to get to the bottom of things. I’m concerned by the risk of GCA and other complications of unchecked inflammation and I’m also concerned about the prolonged use of corticosteroids. I don’t yet know what action to take. I’m making improvements to my diet and supplementations. I don’t have classic GCA symptoms. However, i do have aches in my neck and the my back which i gather is more like PMR rather than GCA. I don’t have headaches. But i do have a general malaise. I wake up between 3am and 5 am for a while in discomfort with pain in my shoulders and arms and upper back and neck vertebra. I feel fatigued during the day but so far I’m able to work. I can dress okay but it’s very awkward as I cant lift my arms in certain directions at all. My tongue is swollen when i wake in the mornings. I realise everyone’s course with this set of symptoms is different. I respect and am so very grateful for all your posts and sharing of your experience. I’ll keep reading and i hope it’s okay to ask a question if I find the right one for myself.
New to PMR and this forum. Thanks to you all for ... - PMRGCAuk
New to PMR and this forum. Thanks to you all for all you are sharing.
Hello! I was diagnosed yesterday, still trying to process a lot of the information I've found here and so far have only been 'lurking' and reading the various threads. I'm thankful that all the staff at my GP practice have reacted swiftly and comprehensively to me turning up a week ago at possibly the lowest ebb of my 59 years, my GP instantly suspected PMR and waited only for blood results before starting treatment, my biggest fear was not being believed I think.
So, I'm waiting for the meds to have an effect, the final confirmation of diagnosis and can't believe I'm actually hoping it is, in a weird way, at least then I have an enemy I can fight. I wish you well, it's likely the beginning of a rocky road but this is a valuable resource and I at least feel less alone in the traveling. 💕
Thank you for connecting Funnyoldworld (and it is does seem to be!). I resonate with how having a diagnosis holds a relief. I was relieved at first by getting a diagnosis, then freaked out when I started learning more... and now I’m calmer. Sometimes I feel very concerned. Quite an emotional roller coaster. I’m wishing you well too. I hope your journey begins well and you feel an effect soon. And, yes, i agree about how so less daunting this journey is when not alone. I’m so grateful for this forum and the people here who volunteer their time and experience with this wonderful charity. <3
And welcome to you too funnyoldworld! My autocorrect tried to change your name to funkylungs23 for some reason. 🤣🤣🤣
Ha Ha, my lungs are feeling pretty good, it's the rest of me that's a little funky (as in funky yuk rather than funky cool) but you made me smile all the same, for that I thank you at the end of a tough week.
I felt exactly the same. I had been back and forth for months feeling like a hypochondriac and secretly fearing I was dying. I was almost euphoric to finally have a diagnosis of something finite as well. I hope you get the Pred miracle. Welcome and rest, rest, rest.
I remember that stage too. Frequent visits to the doctor feeling like a hypochondriac before finally being diagnosed. Funny old-world, I hope Pred gives you the relief you need and this forum will give you lots of advice.
Welcome Funnyoldworld! I can relate to what you’re saying about diagnosis....at least you know what you’re dealing with. The unknown prior to diagnosis, for me, consisted of 5 “dark” months filled with worry and fearing the worst as my symptoms progressed from hips and knees, to shoulders and neck.
You’ve found the best forum for learning more about PMR/GCA as these folks have a lived experience with these conditions, and we “get it” better than most who don’t.
In the early days after diagnosis I first welcomed the pain relief that pred brought. After I caught my breath I experienced a range of emotions coming to terms with my diagnosis.
My husband, good friends, and therapist were very supportive. I had to make adjustments based on my new abilities (or lack thereof), and reduce my fear of the medication I was prescribed (pred).
After more than a year since diagnosis I am doing well. Only a few manageable side effects. I changed my diet and began eating low carb/sugar/salt and lost 30 and have kept it off. I’ve adapted to my “new normal” and am slowly incorporating activities I gave up for 1.5 years since onset of symptoms.
Lastly, do advocate for your health along the way. I’ve found most Drs don’t seem to know much about PMR, or they only have the textbook version of these conditions. Listen to your body/symptoms.
All the best moving forward. Ask anything.
Hi soulnature, welcome. I can see it's all still very raw and a bit scary at the moment. Don't be too scared of pred. It's not the monster at low dose (15-25) that people imagine. Just like people have different symptom paths we all have different pred paths. I was 55 at DX and had symptoms for about a year before that. The biggest indicators of relapse is reducing too fast. Think of it this way, your body produces equal to 7mg pred naturally (pred switches that off around 3 weeks into treatment) so I only count above 7mg as my dose. I started on 15mg so counted that as 8mg. I am now in 6mg so I am at minus 1mg! I have lost weight while reducing, my rounder face started disappearing at 10mg. Most side effects can be managed effectively if you know how. For now rest this weekend if possible and get your head around it all and as you say ask questions. 🌻
Thank you for your reply Poopadoop. Tears are coming suddenly. Thank you for your kind tone. I feel cared for and know you know. Plus you have answered questions I find myself too overwhelmed to formulate properly for myself right now. I do need to find out more about the side effects of Pred. I am worried about my appearance. It’s not just vanity. I am a therapist and i wonder what will happen to my client practice. So far I can manage, though i have to really mind myself and have to nap some days. But I wonder what will happen if I start Pred. I have to be a certain level of well to hold space for clients. I know the same difficulty is there if my symptoms were to worsen.
Thank you for explaining about the levels of Pred relative to levels of naturally occurring cortisol in the body.
You’ll barely notice any side affects. Abit hungrier and patience can feel tested at times
Thank you for sharing that info about your experience.
Hi. I was diagnosed in Jan this year and with a careful low carb diet and low salt I have lost weight not gained it. My cheeks are slightly fuller and I know it’s early days but so far have no other side effects from the pred. Perhaps I am fortunate but not everyone suffers with all the side effects of the steroids. I know how you feel. It is very bewildering when you are first diagnosed. However there is wonderful advice and support on this forum. Christine
Thank you Christine. I appreciate you sharing your experience with me. I’m finding my way... slowly. It really helps to find such understating here. Wishing you well too.
Like you said, not everyone gets side effects that they can't handle. My sister, who was on a short course, for ringing in her ears, liked them. She said they really helped her arthritis. They worked like speed on her, and she got all kinds of work done, that she normally wouldn't have. I on the other hand, had a bad time on them. I was prescribed for my COPD. I also was speeding and talking fast, which I don't like at all. I got severe headaches, and went into terrible depression, where I would break down sobbing, which is not like me at all. I went through bad withdrawal, even though weaning off. Sometimes, I wondered if it would ever end. I know it helps alot of people, but not in my case. I am now afraid to ever take prednisone again. I also had bad withdrawal coming off a steroid inhaler, which doctors act, like that's not possible, because the dose is so low, and goes into your lungs. They can think what they want. I know how I felt and what I went through. I don't know what alternative to prednisone there is. It is prescribed for many conditions. I hope to find more answers to my problem.
Thank you Invention. Ultimately we each have different responses to different drugs. I myself feel i am very sensitive to drugs. It’s just the way it is. Trust your own experience I reckon. Given that I wish you well finding what works for you. Best wishes.
Thank you, and best wishes to you too, on your path.
As far as I Know the weight gain some people experience with Pred is due to an increased appetite..I have been on 50 mgs and now down to 15 mgs and was
Very vigilant about diet and I eliminated sugar hence no weight gain . Monthly blood work for blood sugar and kidney
Function and BP check ups keeps the Pred effects in check .Actually being on Pred has made me healthier...now if I could
Just give up the nightly wine Habit I would be damn near perfect lol
Thanks Darcy. I was at a meal at my family’s gathering at the weekend and ate pasta and bread - I don’t usually eat wheat, hardly none in this past year or two. I have noticed feeling more inflammation. I had about 4 of glasses of wine over the entire weekend - could also be contributing to my body’s discomfort. For me, there’s something about thinking of alcohol is a treat, when it isn’t really.
Yes but it’s so delicious and relaxing if you don’t have too much ...won’t give up my wine ..it’s a very enjoyable 5:00 habit ..Prednisone be damned
Welcome to the forum. I will never understand the complete rubbish our gp's come out with. Pred is nearly always slated for the side effects but what people forget this is the ONLY drug that treats pmr and GCA. I would never go back to my pre pred days. Not every one gets side effects. My only side effect is my constant need to empty my fridge of food! I have not heard of anyone ending up in a psych ward for taking pred so would ask your gp if she can provide you with the evidence of this!! Scare mongering is all she is doing. You could do with a gp who knows about pmr/gca and the real side effects of pred.
You are bound to have questions and this site is where you will get answers from some very experienced people. I notice that poopadoop has already responded and there will be others like her in the morning including dorsetlady who lost the sight in one eye before she was diagnosed. Good luck with what ever decision you make and we are here when you need us. YBB
The comments here are good and should reassure you. Be aware that some doctors will initially treat "just" PMR with too high a dose, so be wary of that. The recommendation for people who have just PMR, not GCA, is only about 15-20 mg to start. Higher doses can mask other issues. But I too often hear about people who are started at 40 or more, which is the lower end of dosage for GCA and is usually not necessary. If you have visual symptoms, of course, all bets are off regarding dosage, but even then the highest prescribed dose is only maintained until symptoms are completely controlled and then the taper down to near PMR levels is proportionately faster.
The tongue discomfort could be an early symptom of GCA in which case your doctor may feel a higher starting dose is justified in order to control your high inflammation levels more rapidly. The worst "psychotic" symptom most of us get is euphoria at feeling better! Be sure to rest and take gentle exercise for a while, as though you are recovering from the flu. When you feel better appropriate exercise is very beneficial.
Let us know how you get on.
That's the other indicator of relapse too....too higher starting dose.
Ah, thanks Poopadoop.
Thank you HeronNS. I get what you are saying. Makes sense about the different dosing and seems important to understand, I’m glad to hear about the euphoria! Ha!
When you say about my swollen tongue and the possibility of it being an early symptom of GCA, i do feel some fear come up. But that has occurred to me. I notice myself wanting to go into denial. Thanks for the reality check. Best wishes to you also.
I think a number of us have unknowingly had the odd symptom of something slightly more than "just" PMR. I had a tender scalp, but not knowing any better at the time I simply changed my shampoo and, coincidentally, started pred at about the same time and of course the scalp symptom cleared up, along with the PMR pain. I only took a PMR level dose and it was much later I realized it probably had been a GCA symptom. The high levels are used to protect eyesight, but it seems if we don't have visual symptoms we are fine with a PMR dose even if we find we have symptoms also associated with GCA. So don't worry. You already have lots more knowledge than I had for months, and somehow I survived and have done well! Btw I must have had PMR for more than a year before it was diagnosed and treated. I was afraid of steroid treatment but now I know it's nothing to be afraid of. Pred is your friend, albeit a somewhat scary one!
Thank you HeronNS. I so appreciate your hearing your experience. The stress of worrying about whether it may or may not be isn’t so good for my health! Hearing your experience is helping me evaluate my situation and choices better. I feel myself I have to watch out for symptoms of GCA as I may (or may not) be borderline for GCA. So it’s good to know that if I do decide to start Pred then a PMR dose is okay until/ unless I have definite symptoms of GCA. That’s clearer for me now. Thank you.
Like heronNS and others I had gca "symptoms". A headache for days in end, and blurry vision. I was about 3 or 4 months in I think when I found the forum. I did worry because if eyes and ended up at the walk in a couple of times. But it turned out it was my blood sugar getting very high. I have had type 2 diabetes for years and it had pushed me to the next level and blurred my vision. I think my Dr had pushed me into a speedy reduction because of diabetes. A low carb diet with good carbs and a bit more waxing dealt with pred effects for me.
What were you waxing? If polishing is a side effect of Pred my housekeeping would be revolutionised! 😀
🤣🤣🤣
Thank you for sharing this info. Sometimes I do have blurry/ slightly double vision in both eyes but it’s not new, i’ve had those for many years and notice it especially after screen time. Now i’m Taking more notice of the symptom. I’m booking to see an ophthalmologist soon for an eye test and I’ll run that by them.
I’m also loving the reference to waxing by the way 
You need to cross your eyes periodically during screen time. And no I am not pulling your leg! You will start to put everything into contexts eventually. 3 years in I will read a post and think omg, that was me and realise something else was pmr too.
I’ve been crossing my eyes periodically. It really helps my vision! Thank you!
Good. It helps me but people often think I am taking the Mick. 🤣🤣🤣
It’s definitely helping my vision. I won’t overdo it and i’ll Stick to doing it gently, in case the wind changes direction suddenly!!
😂😂😂
I had a swollen face at my initial PMR- looked like I had bad botox!!also I had swollen hand and arm- initially my gP thought I had an allergy to something and prescribed Cetirizine, before all the pain and stiffness of PMR came.
Thank you bakingD... further possibility of reassurance for me. Or at least to not overly worry. While being vigilant. Thin line. I’m finding it tricky finding that line!
I really think the “psyche ward and Psychotic Episodes” remark was pretty irresponsible and actually reprehensible. We have around 8,000 members on this forum, I have checked in most days for about 40 months- nobody has mentioned a psychotic episode even on the very highest GCA doses. The trouble with this sort of irresponsible remark is that it tends to haunt you when you are at a low point.Rant over. 😡
Welcome to the forum. I am sure that you will find it to be a life saver!
Thank you SheffieldJane for your response and for your welcome. You are making me see that her comment has really unnecessarily negative consequences. I felt resistance to repeating here but it’s not good for me to be alone with it. And that’s it entirely - her comment has served to haunt me in moments when I’m feeling under particular duress. I am reassured to hear of your knowledge on this subject.
Totally agree. What on earth was she thinking???
Well I started on 63.5mg of prednisolone (GCA & PMR ) and absolutely no sign of a psychotic episode. I’ve been on prednisolone for nearly 2 years now. I’ve not heard of this happening to anyone.
Thank you Mozziebuzz. Good to hear.
Have a read of this, and please ask as many questions as you like -
healthunlocked.com/pmrgcauk...
Thank you DorsetLady. It’s a wonderful resource to have a clear overview of GCA?PMR and pred use and tapering. I very much appreciate it. I am reading it over and over to really get it. Thank you for the encouragement to ask questions. The right questions are still forming. I also read your profile and i’m sorry to hear about your misdiagnosis and subsequent loss of vision in your right eye. Thank you for sharing. Right now, I’m wishing you well with your healing journey.
Thanks YBB for your response. I agree it was scare mongering. It had that effect on me. I was shocked my GP would say that. She admitted to me that she doesn’t know enough to answer my questions and did give me a link to another website forum - can’t remember the name and it didn’t strike me as good as this one. I’ve been trying to understand what was going on for her that she would say that to me about psychosis. Twice, during my first asking her about GCAm and on the phone to boot. She had rung me - she is really good like that. At that point she said she thought I had Fibromyalgia and not PMR, never mind GCA and therefore didn’t think I’d need Pred I suppose. So I guess she was trying to scare me off self-diagnosing myself with PMR at that point. I can get it. But I don’t need scaring about anything... I can be reasoned with! I really wished she hadn’t said that as it has shaken my trust in her as an ally. And it freaked me out i must admit cos I don’t know enough. She subsequently respected my knowing I have classic symptoms of PMR, Though the ESR of 60 convinced her anyway. I guess it’s quite a responsibility to diagnose people’s health issues, there’s such a lot at stake, and I suspect there’s a tendency on the GP’s part to want to control what a patient does so that they have less anxiety. I’m seeing her next week again. I will make it clear that ultimately my health is my responsibility and the choices i make are mine. I would like to make informed choices, of course and that’s where it gets tricky and the lines get blurred. It’s helpful to talk this out, Thank you!
That’s very fair. Thank goodness you found us though! 😀
Yes, thank goodness and thank you for your welcome!
Hi
I too have a swollen tongue some mornings but no other issues I also have a underactive thyroid so this too may cause it .
However my GP is not concerned as it goes down soon have spoken to other medical professionals and thay agree that its due to inflammation caused by PMR .
Thank you Rose. That is helpful to know. Best wishes to you!
I wake around 5pm most nights and my tongue is swollen and there’s an unpleasant taste in my mouth. The taste goes when I brush my teeth and the swelling goes down quickly once I get moving. Disconcerting though!
Have you have your thyroid levels checked ?
Welcome. I had both PMR and GCA symptoms (I googled, showed my GP and she confirmed) so I was started on a high dose of pred immediately: 40mg that very afternoon and then another 40mg the following morning. After 15 days took 35mg then tapered gradually. (now after 2,5 years am at 6mg). Along with my PMR symptoms, my GCA symptoms were very tender scalp, tender temples, jaw claudication (could hardly open my jaw to eat), tooth-ache on one side and headache but I had no problem with my vision. When I took those first high doses of pred, I became euphoric (excitable, laughing, talky..) but that calmed right down very quickly with the dose tapering. You can do a lot to manage pred side effects- the good people here will advise. This forum helped me all along the way. Its important you don't stress or worry either. Pred is less scary than you think. My specialist never mentioned psychosis as a possible symptom.
Thank you FRnina for all information about your experience. Thanks for the reminder to manage my stress response to all this!
My GP today pretty much said she regrets saying that to me now as she’s worried now that she has scared me off taking pred. I agreed with her that her comment upset me in that it was a shock for me!
Take the steroids. Most GPs are reluctant to give a diagnosis and make you wait to see a Rhuemetologist and by that time the PMR Has taken hold. Perhaps if the GPs trusted their diagnosis we would be 'cured' much quicker. I had only to wait three months to see Rhuemetologist and mine isn't as severe as most. But I am coming up to 18 months on steroids and and now down to 6 mg. good luck with whatever you decide.. PS I get good care from my GP but she leaves it up to me. I rely on this forum for most help and advice .
Thanks Suffererc. I would have to wait for a year to see a rheumatologist, but I will see one in hopefully a few weeks recommenced to me by my GP and by another doctor I saw while in A&E recently (i had a dizzy spell which I don’t think was related but I got a second opinion out of that visit!). good luck with your tapering!
Hello SoulNature (love that name). In hindsight I sometimes wish I had been brave enough to resist going on steroids. I didn't want to and told my doctor so but she scared me into accepting them. They are miraculous and take away the stiffness and pain brilliantly. However, tapering off them is hard. I was diagnosed in May 2017 and am now down to 8 mgs but also on methotrexate (a steroid sparing drug to help taper the prednisone dose).
I am the sort of person who would prefer to wrap a piece of Rosemary round my head rather than take an aspirin so you can understand how I feel about being on such powerful drugs!
I would suggest that if you are still working and so need to be very functional it may be wise to accept the Prednisone BUT if you are willing to go the all natural way (which is what I wish I had done now) try looking at littleherbal-international..... Once on that site you will find the herbalist talks about her own journey with PMR. Her GP is so impressed with her approach he now sends his PMR patients to her. You will find her Anti-Inflammatory Protocol on her website. She has helped PMR patients both in New Zealand and in UK.
Either way good luck with your PMR journey.
Thanks for this link Louisa. I don’t have a lot of knowledge about herbs so this is helpful. I will be seeing a herbalist soon. Right now I’m looking at all possible options. Thanks too for sharing about your own experiences. For me there’s a difference between a reality check and scare tactics that don’t make sense. I’m sorry you felt you were scared into making your decision. Thank you for understanding my need to gather all the data and try make the most informed decision I can. Right now reading the thoughtful posts here by the volunteers shows me that taking pred is not automatically either good nor bad. It depends on what is assessed as most prudent. I’ll see what is in store for me. Your response is very valuable, thanks for what feels like your thoughtfulness towards me.
Don't mind the remark about psychotic episodes. Thats totally irresponsible of your GP. Never heard of it. I understand your reluctance to take pred. Nobody wants to be on it but if it is PMR it will just get worse, more pain and stiffness. Honestly the pain should feel so much better once you start. Let us know how you go and best wishes.
Thanks for your support and encouragement powerwalk. My GP told me today she regrets her comment and stated that she has never observed an patient of hers having a psychotic episode because of taking pred.
Welcome to the forum! There isn't much I can add to what has already been said, except when I was diagnosed last year, I felt exactly as you do now. The thought of steroids was The End of The World! My GP said I didn't have to take them if I didn't want to, but would life be worth living without them? At that point I could barely get out of bed in the morning and was struggling to work, so I decided to give them a try, but I'd also look into nutrition, supplements, etc., to work alongside the pred.
The relief when I first took pred (15mg) was almost instant - I could move again; I had my life back! I followed the excellent advice on here, and switched to a low-carb diet - I had no pred side-effects, apart from occasional 'pred-head'.
Thank you for your warm welcome and for sharing about your experience of side effects with pred. I’m getting less and less scared about pred from hearing all the okay enough experiences. I am tweaking my diet week by week as I learn more. I have eaten very little diary and no meet or fish for years and now realising the importance of the omega 3’s, DHA and EPA re inflammation. I buy an algal oil capsule. The supplements are a new extra expense but worth it.
By the way I see you have finished tapering. Best wishes to you.
Welcome, SoulNature.
I got PMR at 52 years, while I was still working as a counsellor. You say you are a therapist, so I wondered what kind? I strongly resisted cutting down my work until about a year in when I began to get all sorts of viruses and realised that working harder was not helping me at all! I cut down but remained in denial of the toll this kind of work really has on us. Looking back I realise that all my (much more limited ) energy was going on my clients and not on myself! I finally retired last year, having got to the "compassion fatigue" stage, so no regrets.
I have had a difficult journey with PMR and now OA mixed in, but I will spare you the details now.
I just want to share some of the things I have learnt along the way. The first lesson is to use this forum to inform yourself ; knowledge is power and we need this to make sure that our medical care is appropriate . I am on my 4th Rheumatologist as they don't all know much, if anything, about PMR. My current one was recommended by the good people on here and is wonderful! We need to be our own advocates and it looks as if you are already there with that.
Secondly, Prednisolone is our friend, but the kind of friend that needs watching occasionally! Any side-effects you may get can be managed- agin, ask here about them.
Thirdly, self-care is most important. I think that most of our members have been in some kind of caring role, personal or professional. Speaking for myself, I had never been anything but in the caring role and it was very hard for me to stop putting others first. I don't do that anymore. I had to learn to interpret my body- what was it telling me? I think it was telling me to stop!
Despite all the above advice, I think we all need to find our own way through this, making and learning from, mistakes on the way.
Good Luck and keep in touch!
Thanks for sharing about your own experiences Suzy. I do wonder about links between being in a caring role and acquiring this and other autoimmune/ inflammatory illnesses. A lot of women too, and traditionally they often gravitate to caring roles. I am exploring my own patterns around taking care of other before myself! I am a body-oriented talk therapist. The work is a big resource for me actually. I’m committed to my own regular therapy and I have a supervisor to keep checks on my client’s and my safety. I am finding that through my work I’m more and more living from ‘in’ my body. But, yes, i agree that there needs to be awareness of vicarious trauma. Working with trauma requires that everyone is safe enough. If my body tells me to stop I too would heed it. I don’t know what’s up ahead yet. And, all the support and experience and generosity here is a great support for me with what feels like uncertainty. Thanks for opening this aspect of things for discussion. I have a lot to consider going forwards. I appreciate hearing that this is a learning journey. And to not fear pred so much. It’s landing with me that not everyone gets all the symptoms listed and that there is a middle ground with all this - and everyone’s is different to boot.
You have to live from.in your body because you have to take it everywhere. When fit and well and uninjured, people barely think about corporeality.
Brilliantly said. I agree. I think that’s probably true for most of us. Certainly ‘corporeal’ crises in my life have been instrumental in me noticing my body. I do feel that PMR is bringing me even more into my body. So it’s not all bad!
I think you really need to consider taking pred because there is a lot of inflammation building up there and it does damage to your body too. Untreated PMR is said by some experts to be 7 times more likely to progress to GCA than if you are taking a moderate dose of pred - and as you will already know, GCA means very high doses of steroids.
I am somewhat concerned about your comment relating to your tongue as that can also be involved in GCA.
I had PMR (and probably GCA for a while judging by the symptoms) for 5 years but not on pred - I was in my early 50s so still working but luckily I could choose my hours as I was freelance and worked at home. I couldn't have done a "real" job - the pain became all consuming at times and no way could I have devoted myself to the sort of work I imagine you do. Relationships with others were hard. Less than 6 hours after my first dose of 15mg I could move again. Not everyone has that fast a response - but the relief at getting my life back is as fresh now as it was then.
Thank you for your response to me, PMRpro. I really appreciate it. It’s taken me a while to get back to responding as I’ve have been pacing myself this week. I have been reading lots or your comments on this forum and feel incredibly fortunate to have your experience and knowledge to draw on. When you say you think I need to take pred I find I sit up and listen. I am still in a “wait and see” considering phase. But I do recognise that I have symptoms i need to address, and that could likely mean starting a PMR-dose of Pred. Thanks for your advice and for sharing your experience. I hear what you are saying about work and relationships and how pain and illness may interfere with those for me. Right now I am experiencing pain and malaise at times but my work is not suffering as yet. My work is a big resource for me in my life actually. I’m committed to my own regular therapy and I have a supervisor to keep checks on my client’s and my safety. I meet regularly with peers and these groups are a huge support for me and for my client practice. If my symptoms become more severe and/ or I get definite symptoms of GCA I know I’d have little choice than to start pred, perhaps at GCA-dose. And, I realise i also have to consider what unchecked inflammation may be doing to my body, perhaps even leaving me vulnerable to developing GCA. But, the thing is I still need to take some time fo myself to tune into what need to happen next. Meanwhile, I’m educating myself, improving my diet and asking for support when and where I can. Much gratitude to you and the people on this forum for shining a light to show the way through.
Sorry to hear of your diagnosis and dilemma. I guess most of us have been there. Looked for alternatives, tried to understand the condition, resisted steroids...
You have to come to your own conclusion, but I doubt if anyone here would say otherwise...there isn’t a realistic alternative. Pred, like all meds, has side effects. But, it doesn’t mean we get all or any. My appetite increased in the early weeks but that was all. I actually lost a few pounds. If the condition is untreated, it’s likely to make your life pretty miserable for quite some time. If you take steroids, you’re likely to find yourself largely pain free and able to do and enjoy more. Good luck.
Thank you phoenix22 for your experience... i feel a lessening of fear as regards taking pred. Thanks for your encouragement.
Welcome to the forum SoulNature. So much of your story resonates with me. The timelines are exactly one year prior to yours. I started experiencing symptoms in Dec/17 but not diagnosed with PMR until May 1/18, when I started on 20mg of pred. By then I had gone through 5.5 “dark” months, filled with worry and fear.
Although I was very fearful about taking pred, I can honestly say it’s been invaluable for keeping the inflammation in check and prevents symptoms from reoccurring. Now that I’ve taken it for just over a year I have no fear whatsoever. I’ve experienced a few side effects (sweating in the early hours after my first split dose, some hair thinning that’s gotten better taking biotin, and feeling some emotional swings at times). My skin bruises easily as well. Not everyone gets all the side effects, some folks get very few.
I too worked in the helping profession as a social worker/counsellor, and had just retired early at age 55. I had just married and moved as well, and I went through a range of emotions, just like the 5 stages of grief, when PMR struck. I was mad as hell at being robbed of the retirement I had worked hard for. I could not play tennis, golf, dance, and in the early days focused on what I couldn’t do. I bargained with myself promising to change my lifestyle to make PMR go away. I even denied that I had it because I didn’t want to believe I had an auto immune disease. Finally though, after I learned more about the condition, and was supported by others, fear subsided and I came to accept my condition.
With acceptance came peace! I then focused on what I could change and I adopted a low carb/sugar/salt diet and lost 30 pounds and have kept it off a year now. I believe my condition will go into remission eventually, but also understand that I’ll likely be dealing with it for years, not months. I received ongoing support from my husband, good friends and my therapist (wondering if you have a mentor/therapist who could proved you support?). When I was experiencing mood swings, and not feeling my usual self, sometimes I would simply take some time and space to myself rather than stir up conflict with my husband. He’s now used to the tears that emerge sometimes, but most of the time they are tears of happiness and gratitude. I’m learning to deal with intense emotions if they occur, but will say I appreciate the little things in life more, and over have become even more compassionate to myself and others.
You will make it through all of this, and we will be right here with you. Finding this forum greatly enhanced my healing as it reduced some feelings of isolation, and provided me with practical info I so desperately needed, especially in the early days. Advocate for your health, learn to make your health a priority, and listen to your body/symptoms. Adjustment to a “new normal” is often required, but with patience and flexibility, you can eventually return to some of the lifestyle you used to enjoy. The past two weeks, with the help of a knee injection and golf cart, I enjoyed my first game of golf in two years. I even lobbed the tennis ball around the court with my husband for 15 minutes.
Hoping you have a smooth journey moving forward, please do ask anything, or post if you just need to vent or connect.
Leslie
Thank you PMRCanada. It's somehow comforting to hear of the parallel in our timelines with this. I've experienced lots of fear and worry and tears especially sine finding out about PMR and it's reassuring to hear about your journey with all those types of feelings too. Thank you. I am getting less and less afraid and have been accessing feelings of gratitude too. Thank goodness! I am inspired by all you have wrote and what others here are sharing too. I'm grateful for the tip about the Biotin! My hair thinned a bit already a few years ago now when I was perimenopausal. Wished I'd known then! And, its one of the (many) things I find myself worrying about in the small hours! I'm on a B complex now and my hair is nice and thick.
Anyway, I hope you are doing well and I'm wishing you well also.
Hello SoulNature....I am 51 and about 6 weeks (losing count now) into PMR diagnosis and pred.
I was very scared of taking pred long term and actually cried taking my first dose.
But 90% of the pain has gone, and I am mobile almost as before, but do get tired and very achy legs if I'm stressed or exert myself.
I'm not thrilled about taking the pred, but it is fighting in the inflammation and pain.
I'm being quite strict re diet and haven't put on weight. (lost a little)
I don't think my face has changed...possibly a bit fuller, less wrinkles.
I'm finding it hard to do less, re work, family commitments etc...and from reading this forum, feel it will catch up with me..and so I probably should try to make those changes now.
I feel far more positive now, and see this as something that will resolve, but I'll need to look after myself until then. This forum is great for info and knowing you're not going through this alone.
No obvious side effects of pred yet,
Thank you Daisyfield, I really do appreciate hearing your experience. the past couple months or so have been quite the rollercoaster with lots of fear coming up. I'm encouraged to hear of your coming to have faith in heading towards a resolution. Good luck from me.
Hello SoulNature and welcome. Like you I was diagnosed in my early 50s with PMR after 4 months of worsening hellish symptoms...all classic PMR symptons. My GP had now idea of what could be wrong and I requested a consultant which I got and who diagnosed me. By the time I got the appointment I was practically bedridden and couldn’t move without crying the pain was so extreme. I understand that as early 50’s we are described as atypical and therefore entitled to be referred to a rheumatologist anyway. I was on preds for 4.5 years and i’m Now into my second year remission. Don’t take omeprazole, line your stomach with a light breakfast first. Don’t take alendronic acid unless you’ve had a dexa scan and the results point to poor bones. Take, calcium, magnesium, vit a,d and k2. All of these supplements help reduce the worse effects of steroids. Walk daily to help with bone density. When I found out what was wrong with me I cried and cried thinking that i’D be on these horrible tablets for some time but I soon became best friends with them as they gave me back my life. Personally i think I was very lucky. Apart from 2 flares, with the happy consent of my rheumatologist I followed the dead slow anD almost stop method of reduction and didn’t suffer any extreme side effects from the condition or the medication. Good luck and if possible request a referral.
Thank you Tina-shelly. Your advice seems to tally with a lot of other good advice I'm reading here. I appreciate knowing from your experience about what to take and what not to take on steroids. I'm so glad you were able to get your life back as you say. That kind of pain is shocking especially when it comes out of the blue. All the advice here is helping me to come to terms with this state I'm in. I'm more and more accepting and less and less afraid - though it's a journey.
An update: My GP today pretty much said she regrets her comment about pred and psychosis to me now. I agreed with her that her comment upset me and that it was a shock for me! She said that she has NEVER observed a case of any patient of hers having any psychotic event while prescribed prednisolone.
I wonder why she freaked so much. Glad she 'fessed up. 🌻
Maybe one day I’ll ask her what was going on for her. I am glad she acknowledged it, it’s good for our relationship and it’s one I need right now.
Exactly. The last thing you need is a lack of trust in that relationship. There was obviously something personal underpinning it. Perhaps wait until you are well to ask😁
Thanks for your response DadCue. It sounds like euphoria is something to prepare for and be mindful of. After months of pain i imagine it’s has relief though. Best wishes to you.
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