I wrote earlier about being in pain and trying to sort out the cause. I was at 8 mg, the lowest I’ve been after 2 1/2 years of PMR/GCA. I had developed at lot of pain in my shoulders, neck, and in both sacroiliac joints.
I’m without a rheumy as the one I finally found who listened left the practice. My GP doesn’t seem to know much about these diseases but seems willing to prescribe prednisone.
So I’ve tried increasing my dose: I tried 5days at 11, then 9 days at 13 which pretty much took care of the pain. Then back to 11 for 3 days...more pain. So I went back up to 13. Been here 4 days now with pain about 80% gone. What’s left is some of the stiff neck/pain, but only when looking down. Bad posture, looking at my phone, myofascial pain syndrome?? Haven’t figured that part out.
I don’t know where to go with this next and I’m so discouraged and depressed, I’m at the same place I was exactly a year ago!!13 mg!! Took me a year to get down from there to the 8 mg I was on at the beginning of July.
I feel so alone with this as I’m dreading having to discuss with my primary or find a new rheumy, pandemic in the US making everything worse.
I guess I waited too long to increase my dose and now I’m not sure what to do. One thing I know for sure now....stress wreaks havoc on these diseases.
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Mstiles
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Not sure what to say but just wanted to reach out so that you know we are listening. I think you hit the nail on the head when you spoke about stress working against you. It is so stressful at the moment, I am surprised that you are tapering at all. 80% relief is really good. I would be inclined to stay at 13 mgs and let things settle down. It is not a race to zero. You are protecting yourself from damaging inflammation with very little support. It is quite possible that the pain you are left with is coming from a different source. Tests will be in order when the Pandemic settles. PM me if you want a chat. X
Sending you a hug too. You are up against such a lot and it’s often the smaller things that are the final straw. We are living through a very strange time and you have been just wonderful. ♥️
Same for me.I almost completed an insurance claim for cancelling our holiday,five sections later after repeating all answers given I had to download a pdf for my G.P. to complete,I then had to scan/upload God knows how many letters/medical appointments/cancellation documents ........ in the end I thought stuff this,£200 just isn't worth it. More and more I am begining to get the picture,my disease loves all this.Well I don't. Hope things get better for you,quickly.
Just the way it manifests - long-ish lasting but one does fine for ages on a given dose and then, all of a sudden it goes pear-shaped for no apparent reason and getting back on track takes time. I think there are at least 4 or 5 different manifestations of PMR and doctors are slowly coming round to wondering the same: short, long, easy to manage and a low dose, easy to manage but a high dose, downright bloody minded to manage! All respond to pred, some improve with mtx, some with leflunomide. They aren't the same.
And this last 6 months has held a lot of trip hazards for us all even if we aren't aware of them. We are walking a tightrope and the slightest wind turns it into a swing.
It’s helpful for me that you spelled out how different we can be with PMR. Otherwise it’s so discouraging when I read about those sailing along and at lower doses than me though started at same time. Mstiles, my best and I’d say whatever dose works, take it. In my old age I’ve started to say “ to hell with it” much more often. 😒 ( hope you get what I mean). 🤗
Just so discouraging to be in the same place as a year ago. Feel like I’m standing still. Hopefully I’ve lesrnef s lot from the forum on how to manage and deal with doctors and it won’t take me another year to get back to 8 mg again.
I'm in the same place I was 11 years ago when I first got pred. Been down, stuck, up, down, right down to 4mg and back up again. I wasn't too bad on 12mg for a while but we wanted to do a PET scan - and now with Covid it has been back up to 15mg.
I feel reasonably well and can function. That is all that matters to me.
Must have been some battles with docs over the years! No cataracts or blood sugar issues I guess. I’ve gotten a pretty annoying cataract in one eye but fixing it is on hold for now. Too much else going on.
We’ve all on this forum certainly learned a lot from you Pro. Thanks for all you’ve done.
No sign of cataracts - I wish! Low carb diet so no diabetes threat. And actually - very little fighting with doctors here in northern Italy. My GP is rheumy trained and my consultant is also pretty laid back about reducing!
I`m with you on all of that....have felt so rotten these last few weeks and even at 10mg, don`t feel well after 8 years....wish there were some answers....
Had to have eyes tested this morning because of severe blurriness....assistant said her grandmother had PMR on and off for years!!.....she said don`t worry she lived to 93!....
I ike that analogy of tightrope and swing. My logic says if we have tapered down to the lowest dose that still manages our symptoms that doesn't leave much wiggle room for when things go pear-shaped occasionally? So we end up flaring, and because it builds up slowly we don't realise until we need a big sponge to mop up the puddle of inflammation again. How many visual analogies can I get into one post LOL. Talking to my rheumy today she reckoned us long-timers only make up maybe 2% of all PMRers, although I said I suspected the figure might be higher than that, if the median is 5.9 years there must be many who have it longer than that? We agreed that the way forward was just to try and manage symptoms to give me good quality of life, so I'm going to continue on the steroid injections for the moment, increasing the frequency to every 3 weeks for the next two then we will review. Keep going all you fellow long-timers, it's all we can do
Yes thanks to you she is better informed about PMR than most rheumatologists and I know she thinks very highly of you as you have come up in conversations. OK I'm probably breaking confidences here but you deserve it - she says you're a Legend!
It's good the extra pred has helped. Could be some of the pain is caused by something as "simple" as tense muscles. I sometimes wake up with a terible stiff neck, just like troubled me for months before PMR diagnosis. But oddly enough it goes away when I get up and move around, and I realize I've been sleeping in an awkward position. I also do a few gentle exercises.
When I first started seeing my physiotherapist, a few months after starting pred, she found that the muscles in my back were, as she put it, "like bricks" and used dry needling to reset the electrical signals in the muscles. This helped get rid of some PMR add-ons (back pain, hip pain). Physio said people can get such tense muscles they can even cause vertebral fractures! Who knew?!
Now that I know this can be a possibility I can do things myself to relax the tension before it builds up too much, usually in my case involving application of heat through warm baths and a plain old hot water bottle. On the other hand I know some people find pain is better relieved through cold, so it is a personal thing.
Yes I do think some the neck pain is what you describe. Heat does seem to help. I’m not sure about getting physical therapy now with the Covid going wild.
Yes, it is difficult. I had a neck episode when we were still in lockdown here and looked up what to do about my symptoms on the internet. Actually found a very simple exercise which helped brilliantly and have continued to perform it off and on since as part of my morning exercise routine. Can't remember what my exact search terms were but I probably threw in the word physiotherapy somewhere.
I am thinking it through, what exactly do I do? I turn my head to the side (no straining, just as far as comfortable), then try to touch my collarbone with my chin. Move to other side. In this particular exercise I don't tip my head backwards.
Just tried what you described. Felt good. I’ve had OA in my neck for years so any easing is nice. I find it also helps if I open my lips slightly as that makes my jaw and neck relax. Ahh, therapy with my morning coffee. 🤗
I can totally relate to your pains! I too seem to be struggling after sailing along for 15 months after dx. and was down to 5 mg Pred.
I have had OA in one shoulder and calcific tendonitis in the other for a few years, along with hip OA and the past few months ,dreadful pain in sacroiliac joint area (I think) I upped my pred last month to 6 mg stayed there but yday decided to try 8 mg for a few days, just to see if any improvement anywhere with regard to pain as paracetamol is not working.
May I ask is your pain worse at night as mine is,? come the evening and bedtime its dreadful. and at rest too ,which I thought was not usually thought to be OA pain, perhaps someone could enlighten me on that
I have a telephone consult 6 month review with my Rheumie next week and when last seeing him was at 7mg, so I haven’t got down very far at all !He did say to try to get to 5mg where he said he would leave me for a while.
I honestly don’t know where to start on the phone when he asks how I am feeling.Its so difficult to explain when not face to face, I thought that anyway when I last spoke to my GP.
Throw in stress too ,which I seem to have permanently ,!
Well thats my moaning done, gosh I can tell I don’t speak to many people anymore ! My life was so very different 10 years ago.
Keep us all posted and I hope you know you are not alone x
Does it improve when you get up and move? If it does, maybe the doctor should look to rule out ankylosing spondylitis - it can look like PMR and responds to pred but then the patient struggles to reduce. The pain tends to happen earlier in the night than PMR which is more likely to be after 4am.
It does improve with getting up and moving, and comes on earlier than 4 am. If I ever find another good rheumy maybe this should be discussed. Not sure if GPS handle ankylosing spondylitis.
Relatively new here, but have learned and am so grateful for this forum! I have a pain question -- have had to sleep in my recliner for over a year because every time I lie flat in bed, my left temple starts to hurt. Soooo, I have to get up and go back to recliner to sleep. My rheum. suggested I get an elevated bed; raising my upper body makes my neck and shoulders hurt. Does anyone else have this temporal pain when lying down?
I suggest you post this question as a new thread - then everyone will see it, they won't necessarily do so here. I can't answer it - I don't have GCA. Nor, if it comes to that, have I got a reclining chair!
No - not in this thread, start a new post of your own for people to see it:
Scroll to the top of this page and at the right hand side you will see a blue box with an image of a pencil and Write in it. Click on that and the page to write a new post will come up.
Thanks Croft. Yes mine is worse at night and when waking up but gets better when I’m upright, not lying down, just like you. Tylenol doesn’t do much except lltake the edge off. I’ve not had any tests like you must have had to diagnose further. PMRpro has described to me myofascial pain syndrome which is another possibility but with the pandemic tests etc. are a problem.
I do know how you feel!! Been there, done that..... but from my own personal experience I would stay on 13mg until this pandemic has subsided. You will feel much better and happier and some time on you could try gently reducing by .5mg every several months. For me it worked.
Thank you, I appreciate your support Bobbury. When things settle down with the pandemic I’ll try that. Maybe I do need to go that slow (.5mg) even from 13mg.
Thank you. So true. The seeming endless days of same. I do keep my morning routine as best I can which helps: coffee first! , with my cat on my lap. Then read for awhile. (Becoming a longer period before I actually get up as the pandemic wears on). Do my tarot cards and my gratitude notes( not always faithful on this! But it helps). Then, write down is there anything I must take care of today. Next more coffee and a good breakfast. Meds and a short walk , most days, 10 minutes. For some days that’s pretty much it! On the best days I have energy and focus to do some art, which is my best feeling
Tarot cards? That sounds very interesting!! Different. Yes im over 4 years into this pred, pmr thing on top of fibro and ME. Hopefully we will pick up and get on a more even keel.
As others have said, you are not alone. I've been at this for over 6 years and in many of those I've ended up a the beginning of a new year back where I was the year before. It got to be too disheartening and I try not to look back any more.
I would expect a great majority of us have experienced flares during these stressful times. As tough as it is, try to relax, take whatever dose of prednisone you need and stay there until you truly feel ready for another slow reduction. Quality of life is so important.
I'm also a great fan of researching exercises for random joint and myofascial pains that pop up and many times they have helped greatly.
Thank you for sharing nuigini, wow you are a veteran for sure. How have you managed to get your doctor(s) ? to prescribe as much pred as you need for all this time? You must be very skillful at communicating. That’s been another stress for me. I was diagnosed with PMR/GCA by a rheumatologist and had two awful ones before I found one that listened. She left in June and now I just have my GP who has refilled my pre once but doesn’t seem to know much about these diseases.
Oh, believe me, that's been a huge stress factor for me over the years. Horribly so for the first few years when I lived in a small town in northern Canada with only locum physicians. Every time I went to the clinic I would face a new one and would have to go through my story AGAIN. Virtually all of them knew very little about PMR. I would listen to the lecture AGAIN, but in the end I would end up walking out with the prescriptions I needed.
We moved to a major city a couple of years ago and found a pretty good GP, who referred me to a rheumatologist and an endocrinologist. The rheumy is a challenge as she's old school and her first reaction was the typical "Why are you still on prednisone! PMR only lasts 2 years. I want you off in the next 8 months". She simply wouldn't listen to anything I had to say, not interested in any research I had to share, and was clearly in the dark ages about PMR. We locked horns and I didn't listen to her advice.
The Endocrinologist was my life saver. He listened! He reviewed my history and failed attempts at reduction. His report to the GP spoke to my extremely sensitive to reductions, susceptibility to flares, the need to reduce by no more than .5 mg at a time, which I had been doing for years, and the need for very slow reductions. He also alleviated the concerns I had at that time about possible adrenal insufficiency.
So, for now all my GP asks when I go for prescription renewals is "What dose are you on? What do you need?" Hopefully your physician will do the same.
By the way, I didn't want to give you the impression that I'm immune to freak outs from time to time. Like so many others, I have my ups and downs, good days and bad days. However, private conversations with understanding friends and private messages to PMRpro or others settle me down.
Glad you finally found support from a doctor. What a story. I know I’m surely not alone in struggling to find a good doctor. The first rheumatologist I had who diagnosed me fired me from his practice after 4 months because I didn’t reduce according to his schedule. He actually raised his voice to me.
Sorry Mstiles that you are still feeling down and that you’re disappointed with the dose you have had to go up to. So hard isn’t it.! I’ve been on this roundabout for about 5 and half years and have never seemed to have got very far and had to reduce by .5 nearly every time.
You need what you need to feel well. These are also strange times so I’m sure when you get back onto more of an even keel pain wise you will start to feel better. Try not to get disappointed with yourself I’m sure many of us have been there and totally understand. 💐💐xx
Thank you Jackoh, I know many on here have been where I am, support from this forum means the world to me.
Just wanted to say how sorry I am for your dilemma with the pain. Mine might be different but this is how it goes for me after 18 months with it.... Diagnosed with PMR and started on 15mgs pred. My pain disappeared with 24 hour's and I thought that it was totally gone. Dropped down to 12.5 mgs two months later, and felt great. A month later down to 10mgs, and still no problem. Another month goes by and down to 7.5 mgs and shoulders start aching and hips and buttocks very sore but nothing like before I started Pred. I stuck it out for a week and a half and finally I start slowly feeling better. I stayed on 7.5 mgs for two months and then down to 7.0 mgs. Soreness starts again but after about two weeks it eases up again. Once more i stick at 7 for about two months and then drop to 6.5 mgs with hardly any pain. A month later i dropped to 6mgs and slight pain back in shoulders and hips but this time I start taking 2 Aspirin 325 mgs each night at bedtime which gives me a lot of relief. And I have continued dropping in half mgs increments along with the aid of Aspirin for the week of reducing my dose And now I am at 2mgs. I do want to state that each time I dropped down my dosage I experienced the shoulder hips and buttock pain but I managed it with coated Aspirin at bedtime for a few days and somehow my system has managed to adjust and I have felt almost normal except for some slight shoulder and left hip stiffness for about an hour each morning. Thats me for now. Hope you feel better very soon
Hello Ms Stiles. I live in the same state as you. Although I have GCA and have been on prednisone only since February, some experiences come to mind. 1) I had switched from a GO to an InternalMedicinec doctor in October 2019. We tend to need about 80 per cent of our healthcare that 20 percent of our lives and I wanted some who specialized in the kind of diseases of the mature population and to keep up in cancer, heat disease and defer active conditions. If the GP specializes in Family Practice medicine ( as did my previous ones until now) I knew that part of her continuing education would concern conditions of young and middle aged people and she might not be up on newer developments that would be
needed for us.
2) I also had a new rheumatologist for osteoporosis. In the previous rheum’s practice I only ever saw his PA. She used decals and to keep prescribing meds for osteoporosis and occasionally gave a steroid injection in the knee. She said the scans showed improvement in lumbar area. The scan the next year said the increased bone density was probably an . Sheartifact from the scoliosis.
I knew I had not ever been diagnosed with that. I have pictures of the back of me in a swimming suit with a low back a showing a healthy spine and I was in my 50’s. People used to comment on my good posture. I am 77 now and was about 70 when the scoliosis was mentioned. The PA had not picked up on the comments on the dexascan and seems to have read them only when I showed her my copy. She then ordered xrays which also showed degeneration the vertebrae. She referred me to PT to help with the pain.
When the physician Who I had never met in that practice retired, I went searching for a new rheumatoligist.
I finally decided on one that had excellent reviews - including from my community. He has been in practice for 45 years.
I saw him in December 2019. As he was running his fingers down my spine,I mentioned I mentioned the missed scoliosis. He said he didn’t understand how anyone could miss it. He felt my legs and said I had water on the knee. commented that in the last few years I had noticed that more doctors seem to be putting their fingers on the keyboard to enter data and not even touching their patients except perhaps to use the stethoscope1976 b.
( in times before all our equipment, doctors used their skills with palpating to help their diagnosis and to begin the healing process.
I attended a in wonderful workshop sponsored by the chief oncologist in the area. They keynote speaker was Dr Herbert Benson, author of “The Relaxation Response”, where he measured the physical effects of meditation. That was in 1977. I never forgot his message at closing: “Doctors. You must touch your patients.” Years later, across the country, I used to go into the internal medicine/cardiologist’s office after my husband had a heart transplant
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Despondant and depressed
Update after Rheumy apt - Tingling legs, arms and pain on right temple area.
Experimenting with Pred dose with Rheumys ok
