I'm feeling a little lost
Posted , 6 users are following.
Hi all,
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.
Really sorry to go on just feel lost ATM.
Take care all of you.
0 likes, 24 replies
EileenH adette01750
Posted
"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...
jean50664 adette01750
Posted
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.
Heres hoping you find some relief
Jean
EileenH jean50664
Posted
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.
EileenH
Posted
adette01750 jean50664
Posted
Hi Jean,
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!!!!!
EileenH adette01750
Posted
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.
Anhaga adette01750
Posted
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?
amkoffee adette01750
Posted
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.
mimi1950 amkoffee
Posted
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.
.
adette01750 amkoffee
Posted
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.
EileenH mimi1950
Posted
I would think it wasn't unrelated. But that is me speaking as a physiologist not a medic...
mimi1950 EileenH
Posted
I was a happier camper when I used to think all medics knew what they were doing and if they didn't, did their most to figure it out.,😟
EileenH mimi1950
Posted
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...
Anhaga mimi1950
Posted
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.
mimi1950 Anhaga
Posted
mimi1950 EileenH
Posted
I don't think you would have but quite a few ,it seems lately, do.. They should screen students applying to med school better.. They should not accept people with narcissistic tendencies nor rigid- minded people.
EileenH mimi1950
Posted
Once upon a time they didn't. Now it is the people with the highest grades - who probably are too blinkered about facts...