I have been stuck on 5 mgs of Pred for a very long time. I attempted to reduce by half a mg. I immediately felt really ill, deathly sick and dizzy with nightmares. I have had a very painful neck for about 6 weeks. I took a Covid test because I felt so viral. I didn’t think my one sided neck pain was anything to do with GCA/PMR. When my Covid test proved to be negative I decided to take my dose up to 7 mgs. To my surprise this eased my neck pain considerably ( I have arthritis of the upper spine). Should I treat this as a full blown flare or is it a combination of Adrenal struggles and the relief Pred can provide for arthritic pain sometimes?
My Rheumatologist has referred me to a “very good” physiotherapist in response to the neck pain. Baffled! I talk to them on Friday.
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SheffieldJane
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Do you feel better in yourself with the slightly higher dose? Besides the neck issue improving. What i call "more civilised"!! Maybe the slight increase might be good until you see the physio about your neck. But then ive been on 5.25 for a long time.
I know, its exhausting at times, trying for that magic dose. Physio might give you more insight, hopefully. Its disappointing when you have to go up again with the pred but hopefully only for a short time to ge a hand on things. Xx
I know the feeling; am trying to reduce to 6.5mg and even forgot to take them this morning ... doh. That helped no end. It gets so frustrating when you have to increase but you've done so well to get to 5mg and slowly, slowly is the only way, even if you have to increase a little now - at least that's what I keep telling myself.
Yes, I know what you mean, SheffieldJane. Poor old body, about sums it up at times...shoving all this stuff into it. You have done v well though, it seems; I mean generally.
Should I treat this as a full blown flare or is it a combination of Adrenal struggles and the relief Pred can provide for arthritic pain sometimes?
Sounds more like adrenals and a slightly higher dose helping OA…so I’d stay there for a while, and see what comes from the physio meeting. Then you can decide next step.
I've been on 5mg for over 2 years now Jane. I was told I was 'one of those patients' who would have to take it for the rest of my life. In spite of that I did try to reduce a few times but felt dreadful....sick, a hollow feeling in my chest, generally poorly. So now I am finally resigned to sticking to the instructions. Hopefully your increased dose continues to help your neck pain until you see the physio. xx
Thank you altywhite . My hope was that I manage to get through the Adrenal wobbles very gradually, but I honestly experienced the night from hell. I might be stuck too.
Yes I am thanks, apart from trying to sort out my back which went into spasm in January and is still very painful. The PMR seems to be under control though, just hope I don't flare when winter sets in
I had neck pain since fracturing and dislocating my shoulder almost a year ago. I have been going for physio, and have found that exercises helped even though the cause is different from yours Jane. Moving my head from side to side, up and down slowly, and shoulder exercise helped. You might be given different advice, but I would give physio a try, as suggested. Apart from that, with aches and pain all over my body, especially when I sit down for periods of time, I make myself go out for a walk which gives relief once I get going.
Dear SJ, what a rocky ride you have had. So sorry. I'm getting this towards the end of day. Iknow it's muscle contraction as it feels like a rod rather than supple. My r\h side below ear.Where is yours specifically? I am now down to 10mg but I think that is just on the limit With me I think its the GCA. It is very difficult to work out what is causing the issue
It feels like a spasm. I can imagine getting stuck. A kind of unyielding rope down the left side of my neck, sometimes affecting the base of my skull. I thought it was my diagnosed, moderate cervical Spondylosis. My GP wouldn’t help because I had neck trouble when it started out like postural vertigo and still causes dizziness when I bend or turn, he can do the Epley manoeuvre with patients, not me apparently.
A friend’s exercise of turning my head to the right whilst stretching my left arm to the left seems to help a bit (and the opposite).
I use trigger point.Find the centre of pain when testing the muscle. Press into that(it will hurt) and hold for 20 seconds. Then release abruptly. Repeat several times. This often releases the spasm/cramp. Then gentle masage. I tend to apply light pressure on muscle and then move head so muscle moves under finger pressure.
It's a bit like acupuncture without the needles. On a long muscle you look for the head and foot of the muscle and hold pressure for 20 seconds and then release both points. It takes a few goes but often works and releases the tension in the muscle.
You must have heard Snazzy and me going on about it before - google SCM exercises and stretches. It will hurt to do them until it starts to get longer/
You DO NOT complain more. We’re all in such a convoluted state that we need each other for guidance from time to time. Not only that, you yourself have provided a lot of it, come to think. Hang in there, you’ve got some good suggestions here, keep us informed as to what helps,
Me too, so keep complaining, if you need to. You might be helping someone else. My neck has been awful over last weeks, so I'm going to check out the same info and see if it is relevant to me.
So sorry to hear about this latest problem. You may remember that I posted about something similar probably around the early part of 2021. I had increasing neck/shoulder (mostly neck) problems for some time, and my usually miracle-worker physiotherapist was not helpful this time. I was blaming it all on OA, but then realized pain was becoming an awful lot like pre-diagnosis so took 10 mg pred (at the time think I'd been hovering around 3). That was the miracle and I haven't looked back. Two years later and seem really close to remission but having been here before not counting my chickens before they're hatched. I really did need that increase in pred for a while.
Generally speaking physio usually helps me a lot, perhaps because I carry so much tension in my neck and physio treatment relieves it. She massages the tight muscles and gives me low level light therapy. Nowadays once a month seems about right. I hope you are able to get some help from your appointment. 🍀
Like I said on another thread Heron. I don't believe in the adage of OA. You are mentally as old as you allow yourself to be and physically it depends on where you have always been, helped by your natural physiology and your ability to do whatever you set your mind to. Admittedly, the pred. has put a tourniquet around my physicality with the myopathy and osteoporosis all pred induced. Lowering the dose by 10% each time so now at 10mg and hoping to reduce further asap. We fight it with patience and hope.
Firstly. I know nothing. But how about you hurt your neck during the nightmares which sound typical of ai. You don’t have to do much to wake up with a bad neck. Then as pred is anti inflammatory it helped with the neck when you upped the dose? Thus you had ai and you ricked your neck during restless sleep? So the way forward would be physio and a gentle continuation with tapering?
Managing PMRGCA is so difficult and confusing! I am constantly wondering what is going on!!
Jane, I’m sorry to hear you are having to deal with yet another issue and I do hope the physiotherapy helps your neck. Although I haven’t been at 5mg for very long I think I have recognised that it simply isn’t enough at the moment and the added joys of adrenal insufficiency are making me feel quite unwell. For weeks I have had pain in my lower back and in my hands and wrists, all of which seems common for us at 5mg, now suddenly the hand pain has become acute.
Just yesterday I made the decision to raise my pred dose by 1mg and stop trying to tough it out. It feels very much like a backward step but I am hoping my body will stop complaining so much and I can recover some “wellness” before resuming the onslaught. Or maybe 6mg is where I need to be. It’s a lonely journey living with PMR for years, especially when friends and family don’t understand our daily struggle with it, so I am ever grateful for this forum and being able to reach out to others who are also struggling.
I do hope the physio and some of todays suggestions get you through this Jane, best wishes Chrissie
The support and shared detail of experiences is massively helpful. My complaining comment was a bit tongue in cheek. If we can’t complain here, where can we complain? Thank you everyone!
Hi Jane, Sorry to hear that things have taken a turn for the worse. It’s so hard to know what’s going on with us when we have more than one issue to deal with. I hope you get sorted and find some relief soon, sending hugs, Tiggy 🌸
So sorry you're going through this stuff SJ. 🌹and glad you're reaching out to our forum. I'm contemplating going up a couple of notches on the Pred because of issues which have reared their ugly heads the last few days. I will say pressing the muscles at the base of the skull have helped morning headaches, which I'm sure are neck related. You'll get there. Very disheartening, I know.
Hi, I have also been on 5 mg. for a long time. I have tried to go down, slow, and have a flare, then up again….etc. My rheumatologist says I will probably be on 5 the rest of my life. I also have serious back, shoulder problems, so, I am following Dr. orders. My PC Dr agrees also. If wishes came true, none of us would have this PMR. Guess we just go one day at a time. Hope you get over this soon.
Thank you for the reply. And, no, I get no relief with back/shoulders/knees, etc. Rheumatologist seems to think it’s arthritis causing those areas pain, but no good thoughts for relief except Norco when it gets unbearable. PMR sure put the brakes to my healthy active life….
PMR plus osteoarthritis, including back pain. I feel your pain because that is my situation, too, though fortunately, I can't complain of knee pain since we moved to a one-level home. I had a very good doctor give me a new hip a few years ago and I'm lucky to have no hip pain now! Since then, shoulder osteoarthritis showed up along with PMR. I'm so thankful prednisone took the PMR pain away, but I'm still at 8 mg, so I'm not sure what the future holds as I slowly reduce more.
In the meantime, I think I need to pay more attention to back exercises. One that was helping in the past was the use of a 5-inch foam roller, which I put under my painful back and roll back and forth. It's a combination of pressure and a massaging action. I need to do it more often when my back starts to ache. I also have a "bed buddy" that I microwave and apply to back while watching tv.
A yoga DVD (geared for back) used to keep my back in shape, but I've been avoiding it because of my shoulder arthritis plus the PMR in my upper body. It seems like one thing leads to another...... I did rub topical Voltaren on my shoulder one day and got relief. I've read that it works best for knees. Maybe a topical NSAID like Voltaren would help your knees? My sister used to get back-pain relief with lidocaine patches. I have not tried those -- seems they would be hard to apply on oneself.
Before PMR, I think the supplements curcumin and DHA (a fish oil) helped with the inflammation of arthritis, but I must be careful with these, since prednisone affects my sensitive stomach. Maybe as I reduce prednisone, these supplements can be used more often. We'll see.
Well, I've taken you on my "pain journey" because I know that you also are on that journey. I wish you well.
I have a similar neck pain. When I raised my laptop computer level the pain was better. Also, I now limit internet time to once a day for half an hour. For some reason being on a computer really hurts my neck muscles, and just on one side.
Is your arthritis in the neck Oestoarthritis or, Reactionary / Inflammatory, or Rheumatoid ?I only ask because there are many people with the inflammatory versions of Arthritis whom are treated long term with Pred at doses between 5-10 mg with no pressure to taper of the medication. It's the treatment if they don't do well with NSAIDs without question.
Wouldn't it be possible to discuss your situation with your Rhuemy reminding them of your comorbidities and the combination of the arthritis and Adrenal problems and just asking to be allowed to continue at a similar 5-10 mg dose long term without the pressure of having to taper off Pred entirely when it's not really a successful option for you.
It's seems both cruel and ridiculous for them to keep pushing you to stop taking the medication which you have proved is required by you, especially when others are allowed to use that regime.
A physio is all very well but you aren't going to be able to benefit from it , and could make your symptoms much worse if you start trying to exercise the area when the flare of symptoms has not been properly controlled.
" there are many people with the inflammatory versions of Arthritis whom are treated long term with Pred at doses between 5-10 mg with no pressure to taper of the medication. "
Wouldn't it be nice if they applied that thinking to PMR? But they don't ...
Does anyone know of any Rheumatologist in PA. That fe r ls this way. I would like to see him. My Rheumatologist keeps wanting me to get off prednisone asap and do other drugs like cimzia or remicade or simponi
Not only a new post - say where you mean in full! Though no doubt people in the USA know you mean Pennsylvania?
If he diagnosed PMR, point him to the 2015 Recommendations which specifically mention the TNF-inhibitors as not advised as the benefits do not outweigh the potential risks. There is only a small role for that in the inflammation of PMR, if at all.
"8. The panel strongly recommends against the use of TNFα blocking agents for treatment of PMR"
I'm sorry I wasn't more clear on where I live. Pa. In the United States. Quick catchup, originally. Diagnosed with PMR in April, then rheumatoid arthritis, and now psoriatic arthritis with some PMR. rheumatologist now days that prednisone won't do the job alone and wants to add a dmard like SSZ that made me feel lousy. Now injections or infusions. My choice is to slow reduce prednisone and see what happens. I'm pretty sure he will no longer see me if I don't do it his way. I'm currently on 17.5 mg prednisone
If you have an inflammatory arthritis you need a DMARD to prevent deterioration of your joints, SSZ is only one, there are several to work through. Methotrexate is the usual first line DMARD and sometimes works well on PMR - or was it actually an inflammatory arthritis - who knows. Slow reducing pred isn;t the question - it is whether the inflammatory arthritis is well managed. And if you don't tolerate any of the DMARDs or they don't work, there are biologics. But you never start with them.
I don't see where your problem is with that approach - if you have RA or PsA that is standard,
Thanks for this Bee. I didn’t emphasise the Cervical Spondylosis aspect of my neck pain to my Rheumatologist about 3 weeks ago. She sent me for a neck X Ray a few years back, so she knows. I just wondered whether a physiotherapist might help and she said that the ones at her hospital were very good and I have a phone-call with them this Friday.
Lots of food for thought in your helpful post. I think I was in deep denial about a potential flare and on a determined path to at least 3 mgs. then the Endocrinologist for a Synacthen test as he advised, then a programme of fitness - the lack of, I was blaming for aches and pains. I do seem much more mobile taking an extra 2 mgs. It is very lowering isn’t it?
5mg seems to be the tipping point for me. I am trying to be kind to my adrenals and reducing one quarter of a milligram every month (again!), hoping they don’t notice!
Hi Jane, I saw my doctor last week as I had a chest infection again! and mentioned that I had been on 5mg pred for nearly two years and that when I mentioned this to my Rheumatologist he’s seemed to ignore the fact.
So she gave me plenty of 1mg and said go for it you know what to do.
But since having my HA in May and reading your post I don’t know what to do now.
I have tried getting in touch with my rheumatologist but nothing.
Thank you Blackcat1M. I will never give up small reductions. Like you I keep getting other health issues and the Endocrinologist said that I need to increase my dose when that happens - sick day rules. At last my abdominal pain has settled (diverticulitis) - it took months. So I guess that I am well for me although the 8 weeks of Omeprazole has caused oral thrush that I am treating. This stage doesn’t have to be so tough. I think the fact that it is the second time for me has made it tougher. As PMRPro says teeny, well spaced steps down, when we can. Good luck and courage!
the 'very good' NHS and the private physiotherapists I went to when I had neck pain both totally missed the fact it was PMR and it took another 6 months of GP appointments until I got a diagnosis, put on steroids and ta da! all pains in neck, shoulders hips all disappeared.
My gripe with physios atm is that they think the solution to all pains is exercise. i'm saying if there is underlying inflammation going on, until that is resolved no amount of exercise is going to make things better, and in the case of my back seems to be making things worse.
Re getting below 5mg Pred for me that was a pinch point, when I pushed on to 4.5 and then further to 4 adrenal problems surfaced. 6 years later of nothing but problems and now being far worse off than I was, I wish with hindsight I'd just stuck at 5mg for life
Thanks for sharing your experience. The physio I am seeing today is in the same Cottage Hospital as my Rheumatologist who is great, so hopefully I might get some continuity of care, it has helped before. It’s a wonderful, well equipped, little hospital. Also, I feel awful on steroids now, my body hates them but they do relieve the pain and stiffness.
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