I was very interested in yesterday’s post by pixix and feel the way I’m feeling may be due to adrenal problems.
After almost four very eventful years with PMR, I was eventually able to reduce to 5mg Pred and was on that dose for all of October and November. Then, a couple of weeks ago, I changed to four and a half mg Pred for one day last week (on the Wednesday) then four and a half mg again this last Wednesday. I have to admit I’ve been aching on my neck and shoulders but put that down to the fact that I’d pulled my right shoulder a few weeks back (I have a doctor’s appointment next week) and fly well apart from that. However, yesterday evening I felt so tired and drained, I actually felt very poorly. I’ve checked my temperature and don’t have a sore or cough so I I had an early night and took my normal 5mg before bed. But, I had a very restless night although my shoulder wasn’t the problem, but when woke I still felt the same as yesterday. So, I took another 5mg but that doesn’t seem to have worked. If, over the last four years, I found that whenever I was too ambitious in my reductions, a few days or a week of increasing the dose worked well. This time, however, it’s a REALLY bad fatigue and I’m not sure where to go from here.
So sorry to bother you all again.
Jan
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Janann25
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Have you ever had a Synacthen Test, to see if your Adrenal glands have the ability to work? Now would be the time. I have had several, I only failed the first one. The other thought was there are a number of nasty little viruses going round, my family have all been afflicted - not the notorious one.. I share the awful fatigue and surrender to it for the most part. I had to tear up the rule book at your stage. Nothing seemed to work like it used to. My Endocrinologist was very keen on trying Hydrocortisone to stimulate my own Cortisol function. It improved without that step. I do wonder if it can slip back though.
Thank you so much for your reply and advice. If the test shows that the adrenals aren’t working, what is the treatment then? In the meantime I’ve decided that just going back to 5mg won’t be enough so I took 10mg yesterday and I’ll try staying there until I see the doctor. I’ve had small flare ups in the past but never anything to make me feel so poorly. I hate this illness!
The Endocrinologist wanted me to stop Pred and go on to Hydrocortisone 25 mgs taken in 4 daily doses. Hydrocortisone has a shorter lasting action than Pred. It mimics our own Adrenal function more closely, this apparently stimulates the Adrenals more and speeds up the recovery. I did not follow his advice because my PMR was clearly still active and Hydrocortisone is not great for relieving PMR symptoms. Luckily for me, my next Synacthen Test showed a recovery. Take your taper really slowly from now on to give them a chance. The 10 mgs will stop a Synacthen Test from giving an accurate picture. You need to be on 5 mgs or less.
OK. I can’t even see the rheumatologist at the moment so my chances of getting the Synacthen test are pretty remote😉. Anyway, the 10mg taken last night have definitely improved the fatigue so I feel a lot better this morning - which is a miracle because they only allowed me hours sleep!!
Pixie here with an update on my health! I’m glad it was of interest. Things have moved on a bit & it’s now obvious I either have vertigo or labyrinthitis. I’ve upped my Pred to 7mg from 5mg & that’s helping my ‘PMR health’! I don’t have the normal flare sign...for me it’s always shoulder pain & sweating! But I felt generally unwell & washed out & the fatigue was worse, before I had the other issues!! Also, I’ve read up a bit more about Sjogrens & the main issue there seems to be fatigue, so that explains the extra extra extra tiredness! Doctors appointment on Tuesday. No temperature or chills or fever. I think I wasn’t settling happily on 5mg though & will taper slower at this stage. Sounds as if the lower you get on Pred, the harder it is. Hope you get better soon...like you, before other stuff started the only thing I could report was that I felt really poorly, just decidedly unwell, but couldn’t put a finger on it (until other symptoms started!) S x
Just keeping my fingers crossed that it will continue to settle because, as I said to Sheffield Jane, my chances of even discussing this with a rheumatologist are very remote! This definitely is a Diagnosis It Yourself illness 😡
I was offered a rheumatologist at diagnosis or stick with my GP & he would ring once a month to discuss. I stuck with him & some months we talk for 30 minutes & he seems as good, or if not better, than some of the rheumies I see discussed here! You could try your gp perhaps?
I was referred to rheumatologist because I had suspected GCA. Suffice to say, she was not helpful (notice my attempt to be tactful!) and unfortunately my doctor’s surgery is struggling and is run primarily by part time locums. I decided to see an excellent rheumatologist privately but of course there still isn’t regular contact so for me it’s definitely been a DIY illness!
One particularly good rheumy who does private work will put you on his NHS list if appropriate - did you ask yours? Are they at least long-term locums? Locums can be very useful - new pair of eyes ...
Yes, it’s very difficult - I damaged my shoulder back in the summer and I’m still trying to get it sorted😡. I now have an appointment organised to SEE a doctor but I’m not that hopeful . . . . .
No, I haven’t - thank you for the link and I’ll use reading it as the excuse to stop writing Christmas cards!! I send very few but I usually enjoy doing them. This year though it’s all such an effort ...............
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