I hope you are all doing ok / as well as can be!!!
some of you may remember me but just to give some history, I was started on 25 mg prednisolone in July 2016 which gave me a good amount of relief but the GP after a week gave me 30mg, the Rheumatology dept immediately in the next 2 weeks reduced to 25mg and then I've been reducing slowly, now at 10mg, but pain started at the 14-12 area of reduction and at 10 mg it's really bad after being so comfortable for went to the Rheumatology dept this week, they want me to continue to reduce as they want me off prednisolone. I am also on Plaquenil for sjogrens, have autoimmune hypothyroidism (not medicated)as bloods normal at present. I have had two episodes of posterior vitreous detachment since August too.The Rheumatology dept want me to try azathioprine soon too,, as he said with the pain and sleep quality poor he thinks I have fibromyalgia too, but I think the pain is from reducing the prednisolone.
I have done my first plane journies since diagnosis, and I wonder if that has thrown me out re the pain control 5 hour each way. The doctors have never been convinced re pmr just the GP that put me on the steroids, who has now left.
I've had a second opinion too.
I tried to go back to work too, and managed 7 weeks and increased my hours steadily on a phased return and only got up to 8.5 hours clinical my shifts should be 11.5 and can't have phased return again. I have another mouth procedure for implants in 11 days so will still be off work for that.
I had a HR appointment this week and occupational Health appointment on Wednesday so really struggling, pain fatigue at home let alone work. I have 1 year to go in April before retirement I will be 54 in April.
This is not how I wanted to finish my career. Just really struggling at the moment, I hurt if I rest I hurt if I move.
"The Rheumatology dept want me to try azathioprine soon too,, as he said with the pain and sleep quality poor he thinks I have fibromyalgia "
To my knowledge fibromyalgia doesn't respond to azathioprine so that is a rather cock-eyed reasoning. However - if they aren't convinced by the idea of PMR why have they left you so long? And if you have already had a second opinion - really don't know what to say - except it would be nice if you could find someone who cares you hurt like hell now...
Hi Adette......so sorry you are having this pain etc. I believe someone on this forum said Prednisone doesn't work at all on Fibromyalgia, but of course it works with PMR. So perhaps you are suffering PMR. Most people seem to reduce a lot slower than what you have been reducing. I am on 15mg, and will hopefully reduce at 1mg a month. I will also check each time that I am happy at the end of that month to reduce that 1mg, and not just make it a mathematical reduction.
Paracetamol ever 4 to 6 hours has taken the edge off pain on a regular basis for a few days.
You're quite correct Jean - nothing much works in fibro and the only things used tend to be antidepressants ( which work on the pain perception problem rather than as antidepressants). Azathioprine is a DMARD, used for RA so I really don't get that.
I know this isn't really your question, but, addressing the return of pain. How slowly is "slowly". I note you've reduced from 30 to 10 since second half of last year. That alone could explain the pain you are feeling now. Since 15, if not earlier, no more than 1 mg a month should have been your rate of reduction.
Especially as you have to work, and shifts at that, your taper should have been even slower than that of someone like me who is, fortuitously, retired. It is appalling that your medical team is ignoring your suffering. Can you take someone with you to next appointment who can support you?
As everyone else has addressed the PMR and prednisone issue I'm not going to. However I was interested in the fact that you said you had hypothyroidism but that your test came out normal. And that you're not being medicated. I find that interesting because if your tests are normal then why do your doctors think you have it? This is important because when I was first treated for my PMR I did not know that my thyroid medicine needed to be increased and that some of my pain was coming from that and not all of my pain was PMR pain. So once I got my thyroid medicine increased and my prednisone at a proper dose my pain subsided. So long story made longer I would suggest you look into the thyroid issue too.
This is what I find most disgusting with healthcare, these days...Specialists only care about the condition you came to them for, they don't want to connect dots . When I was researching what I could have pre PMR DX ,I naturally centered on a condition I already had which was a pituitary apoplexy I had 10 years ago. I went back to the endocrinologist , who looked at my blood work and said I was producing enough hormones for my age and not to worry about my pituitary gland, which on each MRI I've had periodically shows the gland to be thinner and thinner each time. The endocrinologist doesn't even order any more specific tests for thyroid or adrenal, just the very basic ones .
When I finally practically diagnosed myself with PMR, the rheumi was convinced I was steroid resistant and prescribed methotrexate immediately after starting with Prednisone..Im becoming suspicious again that my having difficulty tapering and having such drastic bone density problems so soon after starting with Prednisone is due to a pituitary dysfunction rather than to the PMR related issues alone.
Hi amkoffee, I did see someone privately, and he said my scan showed auto immune thyroiditis (Hashimotos), but bloods normal so don't need medicating, I feel I would like all the doctors in one room and discuss it but of course it will never happen.
i think they want me on the drug I mentioned to get me off the prednisolone but the pains at 10 mg are nearly like the start of the problem last July. CRP 7 on Thursday and they were ok with that but ESR result hadn't come back by the clinic time so they are writing to me if there is a problem.
i tried to do that over 1 month, and was coping well, but the consultants said I must do it 1mg a week I couldn't but over the last 2-3 week have tried and look at the end result, but they don't understand when I tell them I feel the pain more, they just say you can't stay on steroids. Argh!!!!!
WHY can't you stay on steroids? If you have PMR that is the only option for management. And they must know that. Many of us are on pred, have been for years. We haven't died yet - in fact, pred gave us our lives back.
If you haven't got PMR then it is a different matter but they have to say they have good reasons for suspecting it is something else.
Thank you everyone, yes I might take someone next time, and thank you Eileen I will ask what reason they don't think I have PMR, I did have a CRP of 6 and ESR of 76 at the beginning and prednisolone stopped the pain and reduced my bloods to normal, now CRP 7 I wish I knew my ESR will know I suppose when they ring.
It would be nice if all the doctors would get together and look at all the test results and be up on all the current information on PMR and all the other diseases but that's just wishful thinking.
I too am having problems with getting to 10 mg and below. And my inflamation markers are at the high normal level now too. But I don't really care. I hurt like hell when I get there and I'm going to fight with tooth and nail to go as slow as I want to get past this.
You may have to fight too. Be your own advocate. Stand up to these doctors and demand some consideration for your pain. After all it's your body and your pain, not theirs.
Well said, I wish I was confident and wish I could do it, but I'm too respectful I think.
you are so right!!! I will have to practice.
Im thinking of going back to 12 mg for a week and try again, but they want to see me end of April so will have to try to get down again by then, or lower and it wouldn't be possible in the time scale I don't think.
Know just what you mean - except I lost that happy camper belief many many years ago. At medical school! I suppose it did have a bit to do with deciding it wasn't more me after all! Though occasionally I regret it when I meet eejits. But maybe I'd have turned into one too...
I know, that's why I feel like this I'm trying too hard to please them rather than keeping myself comfortable.
I will just stay at 10 now until I go and drop to 9 the week before maybe. I know he won't be happy though. It's just I've read so many times on here how it's not worth taking steroids if they are not working, but the reason they are not working is the reduction I'm so sure of that.
Mimi, I had a doctor like that - I didn't know till he retired how exceptional he was. He was interested in us as people. If I had a book in my hand he would ask about it. He knew hubby was into politics, so they'd have a little political discussion. He loved to give us the scientific name of whatever we had, with a twinkle in his eye, then would translate (usually something minor), never hesitated to refer promptly when necessary. He also, despite taking those few moments to connect with us as individuals, seldom ran late or kept us waiting.... I have wondered whether he'd have caught the PMR, though.