I'm new here and am really worried about taking pred. I've had the blood tests and my GP has referred me to NHS Rheumatologist. The waiting list for first visit is 25 weeks. I wake up with another painful part every day and struggle to get out of bed, lift my arms, get dressed etc. I live alone so have no help. I'm nearly 62 and already have fibromyalgia, osteoarthritis in back, neck, arms and have regular shots in my fingers.
The thing I'm most worried about is the fact that I have lived with depression and anxiety for most of my life. It runs deep in my paternal line and before the pmr symptoms started I had just come out of a 10 year depression. I spent last year losing weight and felt much better about myself.
I'm now facing weight gain and possibly sinking back into the black hole. I'm taking ibuprofen in high doses, but it barely helps. I have taken codeine for years because of my OA but it doesn't touch the pmr. I can feel my mood slowly sinking already.
I apologise if this is in the wrong place, but maybe the mods can move it to a better place.
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tazman3
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Actually depression can be part of PMR and may well lift once you start taking pred. Why has your GP not given you the one week trial of pred? This is often the final proof what you are suffering is PMR and not something else, as fairly rapid relief of most if not all symptoms at a moderate dose is key. PMR will respond to a dose like 15, sometimes 20 mg, and after a month or so can be tapered carefully down over the next year or two to a dose which still manages the symptoms but has very low risk of side effects. Nearly all side effects, including weight gain, can be managed through diet and exercise. Pred is not nearly as scary as many doctors make it out to be. I do think you should be seen within days not weeks and definitely not months. If your GP is reluctant to treat you, can you see another? Many of us are managed entirely by our GPs and never see a rheumatologist. A referral to a rheumatologist is necessary if you have GCA, but if you have a risk of that you would be seen immediately and not have to wait because of the risk to eyesight. Unfortunately delaying treatment of the PMR inflammation is not good, although many of us have delayed treatment because of no diagnosis.
I am worried about waiting that long to be seen as the pain seems to be increasing daily. My practice is huge with lots of different doctors. I see a different one every time I go. They seem to be reluctant to discuss pmr and just say I need to speak to the Rheumatologist. I was diagnosed with fibromyalgia in 2006 and just thought it was that getting worse. When I had all the blood tests they told me that I am anaemic also, but didn't prescribe or advise anything.
I have been on anti depressants for most of my adult life. Trying different ones until I found the one with the least side effects. I'm on quite a high dose and was feeling better than I had in years until this illness came along. I'm terrified that it will make me relapse. I'm struggling with the pain and stiffness and get tearful when I attempt anything like housework. Changing my bed linen is a major operation and I'm done in for the day.
I have my usual visit at the Hand Clinic on 17 May. I get shots for OA in my hands and I have carpal tunnel syndrome. My Consultant is excellent and I was hoping she might be able to help me with pushing the treatment for pmr?
Yes, ask your consultant what you can do to speed things along. The GPs leaving you for nearly half a year is simply not acceptable. One other thing, if your symptoms continue to worsen and especially if you develop headache or problems with your eyes, get to your emergency department as soon as you can. If you develop GCA this is a medical emergency as serious as a heart attack or stroke and should be treated as such. Unfortunately PMR, especially untreated, can develop into GCA. I hope you will be okay until you see the consultant, but if things seem to be getting out of hand don't wait for that appointment. In this situation it's better to be safe than sorry.
I also thought my fibromyalgia was getting worse. I was going to work for months in an awful state. Wondering where it was all going to end. My doctor totally missed my diagnosis until my husband went down for a prescription and asked could she refer me to someone as my mobility was horrendous. I had been in her office in tears as I could barely move my arms, crying, and she still didn't cop on! THEN she did blood tests and I had very raised inflammation. I don't know why your GP wouldn't even give you the week or even few days of Pred. If it's PMR it would make quite a dramatic difference. You could still be sent to the rheumy. Don't panic about your low mood. It's all part of it. I hope you get sorted sooner than later.
If they are so unsure as to be handing it all over to a Rheumy, why not pick up the phone for advice on dealing with the interim? It’s a shame that job done is ticked at the point of referral not when making sure the patient isn’t suffering inhumanly.
I wish I could phone up and talk to anyone in Rheumatology. Unfortunately, I've had 2 letters telling me that there are no appointments available and not to ring the hospital! If I do, they will only be able to repeat the above information and when an appointment becomes available they will contact me. So, I must wait 24/25 weeks for a date and that could get cancelled.
If I don't get to see a decent GP at the practice/get some better help, I will try to find the money for a private consultation. I really can't afford it, but I think another member on here did that and they were treated straightaway.
A couple of times for different issues i have gone to the gp reception. I explain i am in significant mental distress and need to see the dr to make sure i get through tbe next night ok. I might have to wait but tbey always see me. Tbey have a duty of care.
You have a history of depression and anxiety like me and another 6mths without treatment for tbe pain will push you to tbe edge. There are certain face pains called suicide pain for good reason ,-because they do push people over the edge. Take the guidelines that say a trial if pred should be given by gp. You need action now. I have been to the walk in before now and at lesst you may get triaged tbrough to a dr. Are you understanding the message i am trying to get across? Use all tbe armoury in your medical history. Dont forgot pmr pro gave you a link to the diagnosis and treatment process.
Hi, I took your advise and went to the surgery. I managed to get an appointment with a different GP, with the help of a very understanding receptionist - wow. The appointment was the same day and she really new her stuff. Couldn't understand why I had been referred to a rheumy as pmr should be initially treated by the GP. I took my first dose - 15mg - this morning. She did want to put me on twice that and I freaked out! Last night was the worst night I have had and this morning I almost fell down the stairs because of stiffness and not being able to hold on. I struggled to get out of bed and couldn't raise my arms at all. My left leg was almost useless and it's still not right. I'm sick of crying with the pain.
So, my throat no longer feels painful after months of wondering why. Of course, I don't want another morning like today, so I'm wondering how long it usually takes for 15mg to work. I really don't want to take a higher dose, but if I have to then so be it.
Some times it takes people 20mg and a few days. Dont worry about asking for 20. At least it should help clear it up more quickly. If there is a general consensus its pmr now it should be treated as such. Better 20mg for your recovery first month and it work than stay on 15mg and have to go up in a month! Keep positive and let us know what happens. You can start a new tbread for an update. People genuinely want to know your news. 🌻
Poopadoop is right. Your new GP is also mostly right - except 30mg is a bit high for starting for PMR. I responded in 6 hours to 15mg - some people need a week at 20mg, very occasionally it needs a bit more or a bit longer. Be patient. But I'd try 20mg - and if you haven't got an obvious improvement by the end of the week you need to speak to the good GP again. It is unlikely to be perfect, the bursitis often takes a fair bit longer than the muscle symptoms to resolve.
You’re in exactly the right place. Welcome (to the club you didn’t choose to join).
I do hope you’re not having to wait 25 weeks to start pred? Your GP should start you on pred if he’s sure you have PMR and then you can expect a speedy resolution of your pain.
If you lost weight last year, it shows commitment, and therefore dietary changes to prevent weight gain on pred are within your grasp: cut out carbs and enjoy everything else.
You’ve found yourself a great group of knowledgable people here, so you’re not on your own now. There’s help and advice for every step along the way.
I know the pain, stiffness and disability that PMR brings can make you feel low, and depression is often associated with the ‘before pred’ period. Hopefully your mood will improve on pred when you feel a little more in control.
Hello, sounds like you’re in the right place. I think when you start on a high enough dose of Pred, you’ll find your physical difficulties much relieved if it is PMR. A short trial would be good because you can just stop it if it isn’t the ticket. If it is, it may be a revelation. This may help your feeling down and hopefully you can avoid the risks of taking large amounts of Ibuprofen.
Doctors do seem to be very gloomy about Pred at any dose and whilst it does have its down sides, the eventual low doses to control PMR are perfectly doable. You can avoid weight gain as many of us have by cutting out plain carbs (there are plenty of posts about this), which also helps guard against diabetes. Did your GP check your vitamin D levels?
There are a few on this forum who’ve had quite severe problems with anxiety and depression and taken Pred. Some have found it has needed some input and some haven’t. As has been said, PMR can be associated with depression, so it is well worth controlling that inflammation.
Can you see another GP who knows what they’re doing? The silly thing is that if you had certain chest problems they’d whack you on 30mg without a second thought and reduce over a couple of weeks. What is the difference giving 20mg for a week or two for incapacitating pain!? If you respond well it saves the Rheumatologist time doing the same thing. You’ll get more replies and support I’m sure, so sit tight.
Welcome to the forum! Sounds like you’ve got a lot on your plate in addition to a possible diagnosis of PMR. I too was very fearful to take pred when first diagnosed, however the pain relief and reduction in inflammation it provided was so very welcome as I had 6 dark months prior to diagnosis. After one dose I felt remarkably better and it helped confirm I indeed had PMR.
You can avoid weight gain by adopting a low carb diet. I did, along with avoiding sugar, and lost 30lbs that I’ve kept off the whole time I’ve been on pred. Losing weight also resulted in lowering my blood pressure medication in half, and I’ve avoided becoming diabetic (another side effect I feared).
Not everyone gets all the side effects, and these are reduced as you slowly taper your pred dose. I’ve had a few but thus far they are manageable.
I’m overseen by my GP, some folks don't see a rheumy for months due to long wait lists depending where you live. As long as you have access to medical care/prescriptions and emergency services if GCA symptoms emerge, I believe you should be fine (I am not a Dr. though, and do not know your medical requirements). Your symptoms (and ESR CRP levels, if they are accurate), are your best guide moving forward. Many on here can suggest a slow, safe pred tapering plan.
Having a mental illness on top of the physical and chronic illnesses you describe will certainly require support along the way. I understand you are more isolated, so this forum can be very helpful in that regard. You are not alone, we “get it” because we also live with PMR//GCA.
A new diagnosis can bring with it fear, uncertainty, anger and worry, before you get to the point of accepting that this is a reality.
I wish to say that for me, things did get better over time (it will be one year next month). The fear of pred dissipated as I felt better physically, and very few side effects emerged. Yes I’ve had to make adjustments, and deal with other complicating health issues, but thus far I’ve managed ok.
Hoping you feel better soon, you’d be surprised how wonderful it feels to be pain free (re the PMR) again. Take good care of your whole being including your mental health. You know yourself and your body best, if you feel like your sinking, don’t hesitate to seek professional support. Keep us updated.
I have only just started the Pred journey even though initially I had been adamant that I didnt want to take it but I got to the stage where I would have done anything to stop the pain and stiffness wrecking my body. Luckily I have a very good GP who even though my bloods were pretty much ok decided that a 3 week trial of 15mg Pred would show whether PMR was the problem. Within hours I was pain free. I think if I had not had such a switched on GP I would have paid for an initial consultation with a Rheumatologist. I know this is not possible for everyone. I do hope you can get some help more quickly as I was getting deeply depressed about what was happening with me. If you have PMR pred will help you out of pain within a short time so keep pushing for some help.
Hello, lovely lovely lady. Yes, life can be a stinker. Good on yeah for working so well on your depression!! And your weight....Jolly marvelous work!!!🌞😉
You know that the only medication that helps the symptoms in PMR are steroids, like it or not , but these are the facts. Make Good Friends with the steroids, they are going to give you back some of your life, the other pills... you waste your time, and stomach.....face up to this, you have faced up to other, worse demons. You CAN do it, just as we do...put your faith in yourself and this site with all the support and knowledge...and take the rheumAtologist with a grain of salt, some are knowledgeable, some are a bloody nightmare. You yourself are the wisest for you, my lady, you will have sorted that one out, and keep that body moving with the help of your Friends... the prednisone..🌞😉look after you, and accept all the kindness you can get.
What a lovely post, it made me quite tearful. It is hard when there is nobody to lean on. I am a glass half empty kind of person even though I try to be optimistic. When I was young I was the opposite and thought everyone was lovely and trusted people readily. I don't do that anymore!
Its nice to know that I can come here and trust that people only want to help and don't expect something in return.
You will always find people to give you an electric hug or some good experienced advice here day or night everybody is willing to share the worst with you.
In terms of Pred , it can be trusted as a friend too , even if it is a friend that can have some bad habits. The Depression that you will feel if you don't take the one medication that quickly puts your pain to bed is far , far , worse than anything you will feel from taking your Pred , especially if you prepare yourself for any changes that might happen on the way.
Unfortunately weight gain does not most of us , but you will see that this is " medical" weight gain , it looks different than that from lifestyle , and it can be limited with changes in your diet too. If you managed to lose weight so well already you will cope with adjusting your diet for your needs so you a ahead already.
You are going to have to live a " New Normal" for the time you have and then recover from PMR with drugs and changes in lifestyle, but with the right adjustments , a balance each day between rest and activity , and preparation to adapt and be patient that " New Normal" is one you will be able to cope with , in fact , it will probably make you a stronger , more positive and calmer person at the end of the PMR road.
I don't know if you are in the UK .
If you are , and you cannot get to an appointment with the Rheumy for so long , you can be given steroids and diagnosed by the GP for PMR.
If the GP is confident with their diagnosis you need to ask for them to start you on the treatment as soon as possible because other drugs are not helping , and your are concerned on how the pain and struggle is affecting your mental health. Remind them of your past history.
If they are still reluctant , ask them to contact the Rheumatology Department themselves by phone to ask a Specialist for a call back for advice about wether they can start you on Pred now as they have a patient in alot of pain waiting for an appointment and they would like their approval .
If they won't do this , or say that's not possible ( it is possible ) ask them to refer you outside your area to one with a shorter waiting list which is your right under NHS guidelines. Any patient can request , and should be referred outside the area for the nearest available Specialist if they wait they are likely to have is unacceptable or over 18 weeks. The GP will probably be far more reluctant to do that than ask for local hospital help or put you on the right medication themselves and your treatment should start.
If not , there are other options , it's unlikely to get that far , but if it does come back and ask for help.
In the meantime , until you are treated get that GP appointment and just rest as much as you can , in a flare without medication you will be very tired indeed.
Gentle little walks to help your legs and light stretches to ease your joints is probably all you will cope with. Let anybody around you know what you have and that for awhile you will need their help . Drink alot and warm baths or showers will also help and using any techniques you have aquired over the last ten years to reduce your anxiety, like breathing and cognitive exercises , will help too , less stress means less pain in PMR. After your medication is sorted out things will get easier for you.
I would go back to your GP as mine treated me with Pred within two weeks of my first visit. The pain and worry really made me feel depressed but this actually improved once I was pain free. Information from this wonderful site is really helpful when discussing your condition with your GP . Good luck.
Hi. I have GCA therefore had to start on 60mg pred. I have always had a hearty appetite and rubbish at dieting but I only put on 2kgs and that was mostly fluid that disappeared as the dose went down. Mood wise, for me I became energetic and happy. ( a bit to enthusiastic my kind friends would say). Pred has lots of side effects but mostly they are less of a bother than being ill. Good luck
Thank you for all your kind comments and advice. I will try to get an appointment with one of the more experienced docs and try to get some more help. I didn't know I could have a trial of pred, I just hope the GP does!
Will keep in touch after I've seen the doctor. It's not easy getting an appointment and I usually spend between 20 and 30 minutes just waiting in a queue for the phone to be answered.
I can see now that I can't avoid steroids and it will be a long road. Finding this forum has really eased my worries.
Would it be possible for you to go to the surgery and request an urgent appointment? I'm thinking it's easy to put you in a queue on the telephone but a whole different matter if you're actually standing at the surgery reception desk, cluttering up the place!!??
I suffer from depression. Have had at least 3 major episodes in the last 20 years.
After my PMR diagnosis I was prescribed 30mg of Pred to start which took away at least 75% of ALL of my aches and pain. I have osteoarthritis in my knees, back, neck and shoulders as well as PMR.
I was taking Prozac at the outset but I started to feel very anxious (yes I suffer from anxiety too). I went to see my gp who changed my drug to 50mg Sertraline and added some Amitriptyline, 10mg to help. After a few weeks I felt very down, was crying all the time so I went back. Upped the Sertraline to 100mgs a day and the Amitriptyline to 50mg (to help with pain as still not the dose for depression which is much higher). Since then I have been OK. Three years in I am now on 6mg of Pred a day and the symptoms are still about 75% better.
I also do daily meditation practice which helps with the depression, anxiety and pain.
I have put on weight, I am not good at avoiding carbs but have started to lose it slowly as I am following a diet for a different problem.
I don't know if my experience will help you but as a long term sufferer of mental illness I do understand your concerns. xxx
Thank you for telling me about your mental health issues. It's not easy talking about it and your post reassured me that there are people on here like you offering support. I might be lucky and get through without too much more damage to my poorly brain!
I was depressed in the run up to my PMR diagnosis for longer than I care to remember. Once diagnosed and treated with Prednisalone everything felt better and my mood lifted as if my body was now expressing what had been wrong. Weight gain is not inevitable if you don’t allow the initial voracious appetite to take hold and avoid carbs which set up a craving pattern. Your doctor really has enough information to start treating you. Pred works quite quickly for most people. Good luck! Well done for the weight loss - it shows that you have the willpower.
I have found the CBD oil really helps with anxiety and no side effects. Hope you are able to get steroids quickly as they will seem like a miracle once you are on them. So glad you found us. This group will be a Godsend for you. Wishing you well. 💐
See - I didn't need to move your post, you did it yourself! For completeness here is what I wrote on the other thread in reply:
Why do you think you are "facing weight gain"? Weight gain with pred is not inevitable - cutting your carbs drastically will make a big difference - and many of us who didn't know that have been able to lose weight while on PMR doses of pred, I lost 35lbs and currently maintain my weight despite being on 15mg pred for a flare. Others have even LOST weight on pred without trying - some people do.
Depressive mood is also part of PMR - and is it possible the fibro is really part of the PMR? You wouldn't be the first to find that. Ibuprofen is not good for you in high doses and as you are finding it doesn't touch PMR.
And as an extra, show this paper to your GP and ask them to read it:
It was written to help GPs recognise, diagnose and manage patients with PMR without having to wait for the slow referral to a rheumatologist. No-one should be left in pain for 6 months without a VERY good reason.
Your not in the wrong place. I had fibromyalgia for 33 years, OA and RA too. But over the years I learned how to cope with it. I didn't suffer with depression like you and that must be awful for you. I was a power Walker and spent 5 months losing 20 pounds and firming up. Then I got hit with pmr/gca. The worst, uncontrollable pain in my life. There was no break from it. Even with strong muscles from walking, within weeks, I could barely walk or brush my teeth. I had 9 out of 10 symptoms. The 10th symptom I didn't have was depression. But that didn't take long to set in. My diagnosis was in January but didn't go on prednisone until 2 weeks ago. I am finally relieved of pain and know that, after everyone telling me I needed to be on prednisone, that it was the right choice! Everyone here knows about prednisone reduction (except me yet) but the medical field knows more about how to treat a patient dealing with prednisone than they did 30 or 40 years ago. I'm glad I'm on this life saving drug now.
Welcome, I'm new to this journey too now almost in my 3rd month of taking pred. I echo the thoughts of the others. You definitely should not wait 25 weeks to get help! See a different doctor and get a trial prescription of pred. It really isn't as bad as you think its going to be. The pain free existence is well worth any down side of taking the preds. Able to get out of bed and put your socks on without unbelievable discomfort, go for a walk without crying, etc. Taking Neurofen & paracetamol had no effect at all on my pain and I was taking lots, co-codamol too. I haven't taken anything at all since I started the preds. And my migraines have stopped too.
Pred side effects are a down side but you wont necessarily get all of them. You will fee so much better that any side effects you get will seem like nothing. I haven't had the hunger one but do have unquenchable thirst and then the resulting trips to the loo but I feel that is a very small price to pay for not being in pain. If you have already shed some pounds keep the same discipline you used to loose the weight in the first place and you will keep your new slimmer figure. As you feel better you can get back to some gentle exercise and maybe loose even more weight.
Try to think of taking pred as the beginning of a new 'feel better' life rather than an nasty & distasteful result of this condition we all share. I have suffered from depression at times in my life but nothing is as depressing as being in pain and unable to do even the simplest tasks for yourself.
i have bi polar so couldnt take pred but was tried on methotrexate which triggered me
Hi tazman..people have said it all really, you cant wait such a long time to get this sorted. You need to get the pain treated. I have a life long history with depression and anxiety. I have fibromyalgia, OA in same places and diabetes with hypothyroidism thrown in for good measure. You need to see your dr pronto. As others have said pmr does carry depressive issues as does any long term illness. You need to tell the dr that your mental health is not robust enough yet to deal with sitting in pain worrying. A couple of weeks on prednisolone is a better test for pmr than blood tests. You need a trial of pred now.
You dont need to panic about weight gain if you eat a low carb high fat diet (as in eating not dieting) I have lost 2 stones on pred and i have at least 2 or 3 other meds that have weight gain as a side effect.
Please try and gather yourself enough strength to tell the dr your worries and concerns and get that pain under control. Its soul destroying 🌻
Of course my surgery is closed for Easter. I will be on the doorstep on Tuesday when they open. If I can get someone to take me that is. There are no buses and I don't drive so having to rely on others, as usual.
Another worry this morning. Have been reading that jaw problems are a sign of GCA and never in pmr. I've had jaw pain for nearly 2 years and just thought it was fibro again. No other symptoms of GCA so is it right that it doesn't appear with just pmr. That's a laugh isn't it? JUST PMR!!!
you can see how the 3 versions of this vasculitis overlap. You can have problems with arteries in the chest region that lead to jaw problems but not the other signs of GCA.
Thanks for the article. It was a little over my head, but I get what you were referring to. I do actually have tenderness in my upper chest. Approximately level with my armpits or, crumpets, as my son used to call them as a child. The more I read, the more I realise a perfect storm was brewing inside me.
Another unsavoury subject: does pmr make pee smell? Mine is very strong and has an odd smell. Could it be the inflammation trying to get out any way it can? I feel much better now I've found this forum. You are all so kind and helpful which is wonderful.
I've been thinking of changing my GP practice to one that I can hop on the bus to. Now that pmr has come calling, I don't want to rock the boat. I just don't have much faith in the one I have and think I should wait until I get some help with the pain and then change.
I noticed BO that was awful when the PMR first started. And yes, it's a long time ago but I think my pee was very strong-smelling. One or two people have mentioned something similar - there are similar effects with other illnesses, why not with vasculitis?
It IS a hard read - but I post it for the picture!!!
Mine changes smell across the day but there certainly is a change, it can depend on which med i have taken prior to going to the loo. I also have a different body smell. Almost a burnt smell that can be there in the mornings. But an hour later i cant smell it - i may have got used to it by then so no choice but to chuck myself in the shower. Only for ghe smell to come back. I suppose that could be sinuses.
Yes - that is the sort of smell I used to notice. And always worse after the gym even though I had showered before. No deodorant helped. So I eventually stopped using deo and the odour improved after about 6 or 8 weeks. I haven't used deodorant since - and no, I don't smell!!!!
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