Will PMR never go away!

Hello everyone,

I have had PMR for 9 years. Am now approaching 77 years. I have done all I can to defeat this disease. So much for medics saying it will go away after 2 years! It's been one relapse after the other. It took me 8 months to taper from 3 mg to 1 mg, then I relapsed. Back onto 10 mg and quick taper to 5 mg, because my blood sugar and cholesterol are high, so is my blood pressure. Before Prednisolone I had low blood pressure and normal bloods. Now down to 3.5 mg and for the last 10 days I have been feeling quite ill, weak, exhausted. It feels like flu. The older I get the longer it takes me to recover. Apart from PMR and Pred I have no other diseases or ailments. But a close friend who has seen me throughout this horrible condition told me last week that she thinks I am going gradually downhill. I know it, it feels like it too. I know I am getting older, but others my age are out playing golf, travelling. Were it not for PMR I would be out with the Ramblers, gardening, going on holidays. But I have been too exhausted to travel over the past 2 years. By the way, my bones are strong, no oseopenia or osteoporosis and I refuse to take bisphosphonates. I feel sorry for my husband because our retirement is blighted by my condition. If anyone else has had this disease for such a long time I would welcome your input on how you handle it.

35 Replies

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  • Hi nevagivup,

    Positive name - love it!

    I would hazard a guess that after all this time, some, if not most, of your problems may be down to your Adrenal glands. After being suppressed for such a long time, they may be very reticent to start working again.

    Have you had them tested to see if they are capable of working, and just being lazy, or something more significant. Why don't you ask your GP for a ACTH Stimulation Test - it doesn't prove your Adrenals are working, just if they are capable of doing so. So it's a starting point really.

    Only other advice I can offer - I felt very fatigued between the drop from 6mg to 3mg - even though using a slow tapering plan and only 0.5mg a time - so sometimes it's just a matter of time and patience!

    And yes, so much for 2 years! we've had many a discussion about that as you can imagine!

    Take care.

  • Hello DorsetLady, you may see from my reply to the other contributors that I am hoping the endocrinologist will be able to take this further for me. I can't tell you how many times I have been down the road of s-l-o-w tapering by .5mg. What my experience has been is that every time I am physically under stress I either relapse or go into the downward slump again. So, for example, running to catch the last train home (my husband loves an adrenaline rush, forgets I don't seem to have any!) will cause me to almost collapse, drained of every ounce of energy; or like recently with the high temperatures in a few heatwaves in London, I cannot cope with the heat. The last one is what just about finished me off. I have not recovered since then. I have always been very active, my husband's nickname for me was Duracell Bunny, because I was always busy, with incredible stamina. Now I feel like a feeble old wreck! Perhaps an increase in dose, albeit for the long term will make a difference to that..............

  • Do hope you get an answer about your adrenal glands, but as PMRpro says you may have PMR for the long haul, and disappointing as that may be, most of us as we age have something that we have to tablets for the foreseeable future.

    But if it gives you a better quality of life then I say - take the tablets (and most importantly at the level YOU need).

    Tell your hubby, the Duracell Bunny needs to recharge its batteries - so remind him to slow down.

  • I have had PMR for well over 13 years now and have been on pred for over 8 years. I have never really successfully got below 5mg - I got to 4mg for a few months but when I tried for 3.5mg I felt so awful I went back to 5mg where I was comfortable. A couple of months after that I had a quite strange flare - started with breathlessness rather than "just" PMR-type symptoms, they came later. I went back to 15mg to manage it and it took a few months to get to 12mg. Eighteen months later I am back at 5mg and fine. Below 5mg I think my adrenal function is struggling and the PMR is hovering in the background so I am perfectly happy to stick at 5mg for the foreseeable future.

    About 5% of PMR patients have what is termed refractory PMR, it never really goes away and while some of us can manage on pred doses in single figures, others need more. If you try to reduce too far the symptoms return - and if you try to force reductions then you have flares and have to go back to higher doses to manage them. If people do that too often then they often find that the next reduction is harder. In the end you take less pred if you accept the lesson when you flare at a given dose more than a couple of times - just rest there, don't fight it. There are about half a dozen people on the forums that I know of who are in the teens of years of PMR.

    I do not compromise - I take what I need to feel fairly well and function well. I have had raised BP - it is well managed with medication. We have no idea if it is due to the pred or to the atrial fibrillation that I developed along with PMR - but it too is well managed with medication. I have never had raised blood sugar levels - probably because I eat a low carb diet as the only way I can avoid the pred-induced weight gain. I put a lot on with pred - and lost 35lbs by combining the 5:2 diet and low carb. Now I just eat low carb - except for occasional treats like ice-cream and once every few months a pizza. But they have to be good ones!

    The older we are the poorer our adrenal function is likely to be - and being on long term pred adds to that. The treatment for that is supplementary corticosteroids - so it makes sense to find the pred dose that lets you feel well and if it is under about 8mg accept that may well be where you stick. It saves triggering flares and in the meantime you can relax and enjoy life rather better.

  • Thank you PMR pro. Very comprehensive description of your experience. I have been reluctantly coming to the conclusion that I may have to remain on a slightly higher dose for the foreseeable future. If it enables me to enjoy life better, so be it. I hope the endocrinologist can get me tested and then at least I can decide what is best to do.

  • Dear mrpro,

    I am interested in your breathlessness reference. I got very breathless lately my gp did not relate it to pmr but ent me to a cardiologist and I am scheduled for an angiogram. What did they attribute your breathlessness to?

  • I had this shortness of breath especially going up hill! I then had an angiogram which showed I had angina just what I needed to hear! I am now on beta blockers and another tablet at bed time if this doesn't help a stent has been mentioned.i alsohave a spray for under my tongue if I am about to tackle a hill (I haven't used it yet I hate taking medicines) so good luck with the angina and I hope good results for you. Think of me everyone on Tuesday I move from Kent into my house in Newcastle!!! I might need that spray under my tongue or even all over!! Hey ho at least I am still breathing

  • Mine at that was thought to probably be due to inflammation in the chest arteries - since increasing the pred sorted it. Pred itself can cause breathlessness in some patients. And the autoimmune part of PMR can cause other things - atrial fibrillation for example. And that can lead to breathlessness during an episode. I have a/f too due to the autoimmune disorder having damaged the electrical cells in my heart but it is well managed with medication and rarely bothers me now. It wasn't the cause of the breathlessness last year when the increased dose of pred helped.

  • Hi PMRpro and all

    I have just been with the rheumie and from the scans has diagnosed ra unsure whether it is in addition to pmr. The rhumie wants me to continue tapering while starting plaquenil which takes some months to be effective.

    This I understand is because i suffer from bronchiectisis and my immune system is badly compromised with the preds.

    The rheumatologist says that if it were not for my chest he would be tackling the ra aggressively with preds.

    Has anyone else had this experience?

    I have an additional problem having just read the plaquenil leaflet. It says that anyone with existing maculopathy of the eye will not usually e prescribed plaquenil

    I have early stage macular degeneration and I am not sure if rhumie is aware of that.

    I tried to phone and will ty again tomorrow.

    I feel I am between a rock and a hard place

  • Hmmm - I wonder why he thinks pred is worse than plaquenil for bronchiectasis. Steroids are often used in bronchiectasis - maybe it is worth getting an opinion from a pulmonary specialist.

  • I already had pneumonia at Christmas and then hospitalised again in June with bad infection, no resistance with immune system down and certainly within a week of preds being upped because of suspected gca Igot a very bad infection that was antbiotic resistant

  • You need two tests, one available at GP level, one needs a referral to an Endocrinologist via your GP.

    Synacthen test is the way to go. You need to find out if those adrenal glands are working or not going to work. If they are not going to wake up and get on with it..........then 3.5mg is no good at all so you need to see an Endocrinologist.

    GP visit is called for and soon and at the same time, ask for a Blood Test to see if your Vitamin D is low. If it is it needs correcting as soon as possible and Calichew is not going to do it for you. Vit D Deficiency cause aches and pains just like PMR.

  • I am so sorry for your struggle. I'm 56 and "view" the world through others experiences most of the time. It's a difficult disease to manage. It seems to hit people who've usually been quite active, thus the fall is far and painful. So sorry

  • Thank you. The psychological impact when one has been very active is neglected by the medics, in my view.

  • Yes I've noticed that quite a few people commenting here have previously been quite active or very active. I thought I was healthy and quite active. Enjoy gardening and walking and running after my grandchildren. I had a miserable summer holiday in pain because breathing, walking and even sitting down was sore. I maybe didn't do myself any favours either by trying to ignore it while away, thought I would stiffen up and get worse. Such a learning curve 😖

  • I've been noticing that too. This and many other autoimmune conditions never seem to hit those who have a sedentary lifestyle. I have been a competitive athlete most of my life and I'm finding it hard to get my head around the fatigue and loss of strength. Everyone on here and those I know personally have been extremely active people. Maybe we'd all have been better off being couch potatoes...nah!

  • You are so right. My sedentary husband is never ill, has normal bloods, blood pressure etc. As a couch potato he is a model of laid-back good health! Maybe we who have been so active have simply burnt out our health. Shortly before I got PMR I had project managed the gutting and refurbishment of a run down house and new landscaping we had moved to. While my husband went to work, where he was sedentary, I was run ragged with the physical demands of the project. We lived in the chaos while the work was done, but he could escape from it all day. By the time the last bit of turf was laid I had no energy at all, felt ill and knew I was burnt out. I had a niggling pain in my neck and week later my neck and shoulders were stiff and sore. I thought it was from a drafty window at night! PMR had installed itself in my strong, toned, healthy body!

  • How wonderful to be involved in a project like that, but yes, I can see how it would be completely draining. Wishing you all the best.

  • Thank you Jinasc. I did speak to my GP about this level of exhaustion about 3-4 weeks ago. Met with a shrug. I already had a pre-booked appointment to see an Endocrinologist, for the result of a thyroid needle biopsy next week. I suggested to my GP that I ask the specialist about my adrenals and she okayed it. Whether the specialist will agree to chat about it, or tell me to go back to my GP for referral regarding the adrenals, will depend on how much time is allocated to my appointment. I have only had one test for cortisol and that was 8 years ago, never been referred back to a rheumatologist since initial PMR diagnosis. My Vit D level is normal. I get the feeling that I have fallen into the NHS rationing category and at 77 with no disease apart from PMR I am rationed. The thyroid nodule was an incidental find during and MRI last year in November after I fell onto my spine in a friend's unlit garden. The radiologist is satisfied it is benign.

  • It can't be an official rationing policy because that would be contrary to the Equalities Act. But in reality we face ageism and sexism in the level of interest or lack of interest in diseases that impact mainly on older women. Make more noise nevagivup. It doesn't have to be like this. 😡

  • Hi SheffieldJane

    Not official but certainly unofficial. You may find this BBC News item helpful if you look for the author's name or the website.

    Health

    NHS 'rationing leaves patients in pain'

    By Nick Triggle

    Health correspondent

    5 July 2017

  • I have only been suffering from PMR for one year but I have suffered from chronic pain from my lower back 13 years. It is extremely discouraging to be in pain 24/7/365. And then you add to that the constant changing of your Prednisone dosage and the constant figuring of how much should you take this week. It's mind-boggling that any of us survive this. I am now 56 years old and and now confident that I will not have a fun retirement. I don't have a fun life. I'm getting closer every day to being confined to a wheelchair because I can't stand or walk for very long. I hope you don't get to that point with your PMR. And I'm sorry that your doctor lead you on to believe it would only be two years. Mine said the same thing but because of sites like this one I know better. You might do well to get some counseling. I know that a lot of people on here have talked about your adrenals and it is quite possible that your responses are due to adrenal fatigue however if you're stressed out you know it's going to cause you a flare. So it's kind of a catch-22. I hope some of this rambling makes sense to you and helps you in some way.

  • Thank you for your reply. My experience of PMR for 9 years has taught me a lot about my body.

  • Hi Nevagiveup

    So sorry to hear of your prolonged battle with PMR. I cannot give you any other advice than what our esteemed contributors have already said...but just the fact that you feel less isolated can go along way.

    I am 74 and was only diagnosed this year...it continues to be a personal battle but with the understanding of other sufferers. Stay on the 5mg if that is where you feel better...take care

  • Thank you, Camerashy! This is certainly the best forum that I have come across for PMR. One does tend to feel isolated sometimes, so it's good to hear from other people in this way. As my GP said, it is not a terminal disease, I'm able to move about when pain is controlled and because, in my case at least, Pred gives my face a flush, people think I am well. So explaining that actually today I feel like a wrung out old rag and just cannot raise the energy to go jaunting seems to others as if I am "putting in on." The last thing I want is sympathy from my family and friends, it would be nice for them to just accept that I have PMR with its problems. It must be very boring for them, so it's best not to talk about it. It bores me, too! It's taken my hubby quite a while to get it, but since he retired he has been more observant and is very understanding.

  • Hello nevergiveup ..l feel for you and agree with you entirely ..l am 71 and have had Refractory PMR for 13years ..A lot is expected of me but l try my Best to Pace myself ..after flares to my legs this year,and upper arms and shoulders l have had to go back up on the Pred to 15:05 and most of my flares come when I go below 14:05..ln 13 years with this horrible condition l have got down to 5mg pred a few times, but not having much luck with reducing at the moment.. This weekend l hope to go away to a River Lodge at Stratford-on-Avon but l haven't had the energy to pack yet..l love the wildlife but as l don't walk l can't do as much as l did when l first went there about 5 years ago ..my Partner Pete can have a week fishing as he looks after me all the time but has never ever understood Why l can't improve .l will take some books and Puzzle books and hopefully recharge my Batteries..lt was my ambition to be back down to 12:05 or 13 mg before l see Dr Hughes in October but l know this isn't going to Happen ..l get cross and Angry that Pete and l can't travel and do things that other people do and l know this holiday will take lot out of me but sometimes a change of environment is a Good Tonic. The good thing is your Bones are strong which is a real Bonus. Have you tried Bowen Therapy ..l find it helps me and will be going back for more Therapy when l return from my Hols .All the Best and l hope you feel Better soon x

  • Oh, dear, I know exactly what you go through Trish29, except I haven't had it as long as you. I have had to stop going with our "gang" of 3 couples on holidays in Europe because I just cannot keep up with them. The journey is enough to flatten me and I don't want to sit around the public lounge of a hotel on my own, which is not as comfortable as home, where everything is to hand. I'm going to look up Bowen Therapy in a few moments.

  • Hi nevagivup You have received the best information and advice from DorsetLady and PMRpro and others on this site.

    I just want to give you a 'virtual hug' and say I know how you feel (been on Pred. for 7&1/2 years now,) actually got down to 1mg and had major flares following knee replacement last year and back up to 30 then quick drop to 25 and 20, but have found it hard to get down to the 7.5mg I am currently on. I actually feel so much better this week since on 7.5mg and have been reducing by 1/4 mg every7-10 days as my rheumy wants me lower before get 2nd knee 'done' (friend who is retired pharmacist suggested I try 1/4mg drop as I seem to have little probs when trying higher reduction)

    Anyway, just wanted to let you know I have been so grateful from the support given to me by all on this site, my daughter said 'just think of yourself as a creaky old gate.... a little bit of oil and works ok for a while, then needs help again' !

    It took me a long time to follow advice re doing what you can when you feel 'good' and resting when feel you need too, I always felt 'guilty' but not now. I'm 70 and retired 3 years ago (RegNurse) so initially found it hard to say 'no' when asked to do things too. Your husband sounds supportive, he just wants you to be happy and go do things with him when you feel up to it.

    My friend also says I'm going downhill.... but in a positive way.... she knows that gets my 'back up' and ( tho' I feel like continuing on being a giant sloth!) I have started going to local indoor pool to just walk in the pool, as with other probs. find it hard to walk any distance.

    I'm sorry to ramble on for so long, but you will have good days when you feel like you can go do things, but on the days you don't feel up to it, say so and be kind to yourself and rest

    My GP asked me if I was 'depressed' and 'needed something'..... I said yes, have times when feel flat and depressed, but nothing that chocolate won't fix! The look on his face made me feel so much better for an entire week!! Wishing you all the best, you aren't alone xD

  • Thank you, thank your for the "hugs" AussiePolyDee, one can't get enough of those! You are right, this site is very comforting and supportive and I am grateful for all the advice and shared stories. You are lucky to see a Rheumy. I saw one once, at the beginning, who diagnosed PMR, never seen one since. GP's at my local practice wont refer if they can help it and these days all referrals have to go to a Referrals Panel who will decide if the patient can see a specialist, based solely on what the GP writes. They don't get all your notes, or see you or examine you. People are being refused referrals all the time. As far as I know suspect cancer cases are referred directly. My GP also asked me about depression and I replied no, but I am crossthat I can't just use willpower to get rid of PMR. I was asked if maybe I am very wound up and I replied no, I'm too tired to be wound up! I like your daughter's creaky gate description, but let's all leave out the word "old." I know I have been guilty of referring to myself as old. Of course I'm not, being just on 77. When 90 arrives, maybe just maybe, it will be time to call ourselves "Old."

  • So sorry I am in the same situation now for 5 yrs . I am 72. I too look at other people my age and envy their vigor. I forgot what it’s like to have a pain free day and not suffer from exhaustion. Currently taking 12 mg but feel sick break out with sweats and have no energy. I think I need to go back up to 15 mg . I may be in a flare. So sick of this. I feel for you, sad to say we are sisters in this but every day I keep trying to have a better day. Hugs to you.

  • Please go back to your doctor before putting your dose up. After five years you really need to have your diagnosis reviewed. Ask for scans to see where the inflammation is in your body. If you have, say, large vessel vasculitis you shouldn't be left languishing on steroids forever.

  • What scans would you suggest Kate? To my knowledge the only option would be a PET-CT or PET-MRI. PET is suppressed by being on even a low dose of pred so a patient on 15mg of pred is unlikely to get a meaningful result. And as I have just quoted "the median time to permanent discontinuation [of corticosteroids} was 5.95 years (95% CI: 3.37-8.88)"

  • Well, I'm not going to suggest any particular scan because I am not medically qualified. But I know consultants who are getting some very interesting results from PET scans. The fact that the median time for permanent discontinuation of steroids is 5.95 years reinforces my point - many people are kept on steroids for too long without further investigation. I can understand a doctor letting someone go along for five years on, say, 5mg. But yoyoing up and down around 10 or 12? We are worth more than that.

  • What I said - being on even a low dose of pred is enough to quash the emission the PET depends on for accurate results. If it is to be of any great value the patient needs it done BEFORE being put on pred for more than a speedy "is it/isn't it responsive to pred" trial.

    That is a MEDIAN value - many are off pred far sooner. But the Italian study found that 1/3 of patients still required pred at 6 years - some of them had been on methotrexate and were being closely followed in a study so I think it is unlikely there was much doubt about their diagnosis.

    You have to bear in mind too that some patients only absorb about half the pred they take - the bioavailability varies a lot. Two patients may be on the same dose, one gets 90% of it, the other only 50%. You can't compare doses that simply.

    This isn't a L'Oreal shampoo...

  • Usually a flare is when the pain comes back. I wonder if going back to 15mg may make you feel worse as far as sweats go? I am now on 3.5 mg, no sweats, better sleep. We have to accept that PMR is not a silly little affectation that will go away quickly. It changes our lives and those of our partners/spouses. But in our later years we have to make the best of it or we go under with being miserable. I make the most of the little energy I have to get some things done while the energy is with me. Those that matter, anyway. As I wrote in another post, these days I look at little things not done, tidied, or put away, shrug my shoulders and walk past them. When my battery has run flat I rest as much as I can. Thanks for hugs and I return the same to you and to all our fellow PMR/GCA'ers.

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