IN the interest of extreme caution I stayed on 2.5 mg for 3 1/2 mos.Figured I could take a safe plunge to 2. Following symptoms emerged. Dizziness, Flu-like malaise ( no fever) pressure in my head , burning eyes, 2 bouts of profuse sweating, then diarrhea. then the tell-tale pain and discomfort in my shoulder girdle which made me realize all of it may be secondary to a flare. Took about 2 days for the shoulder thing to come on. Called rheumy for instructions. He has yet to call back , so last night I added the 1/2 mg back. This morning, still sickly but stomach a bit better. So, any suggestions to get back on track? And please answer whether or not these symptoms are typical of PMR as I have never had them before. . In fact I thought the dizziness was due to dehydration and I've since drank more Gator Ade than seems humanly possible. The dizzines was the most impactful to me as I was afraid to drive . Also, if I continue to flare at 2 mgs does it make any sense to stay on that dose forever is I cant get beyond it. Is it Safe? I love this forum. A place to return to. Thank you all.
the 2 mg misery( again): IN the interest of... - PMRGCAuk
the 2 mg misery( again)
Hi,
Although some of your symptoms do sound flare like [the shoulder girdle issues, but 2 days is very quick for that to occur], most sound adrenal related - dizziness, malaise, gastrointestinal issues - as well as joint pain.
Did you drop from 2.5mg to 2mg is one go or use a slower tapering plan that takes weeks to get from one to the other?
As you’ve gone back to 2.5mg -and if it is just adrenals then hopefully they will settle.
Unless it is a flare-which I doubt you really don’t want to go up any higher, unless it really necessary.. but you may have to .
Personally I would stay at 2.5mg - and see how things go..
If it is is ‘just’ adrenals, then you may be able to decrease in the future - but it’s small steps and a slow taper, very slow sometimes, time and patience…
Might like to have a read through this link-
I would suggest it sounds more like an adrenal insufficiency problem. If it were me I'd add 5mg for a few days until I felt better and go back to the 2.5mg you know you have been well at.
Then maybe try to persuade one or other of your doctors to do a basal cortisol - cortisol on a blood sample taken between 9am and 1pm, It should give a rough idea of adrenal production - a low level confirms adrenal insufficiency (under 100 nmol/litre), the higher it is, the better they are recovering, over 450 nmol/litre is normal.
TY That's interesting, I do happen to have a basal cortisol scheduled along with my other labs next week. I feel better today, not great but compared to yesterday,,,, 90% better by going back up the 1/2mg Ill try to tough it out at 2.5 for a few days . and if lucky, Ill be able to stay there again for a while. Rheumy called back and said to go up 3 or 5 and call him next week. Ill try not to raise it , getting real tired of 1 step up and 2 steps back. Guess we all are. Thx again for yr help. Bonnie
Hello, you say the misery of 2mg “again”. Did this collection of symptoms happen last time as well?
No, not the dizziness or the head pressure or the stomach issues or sweating. Previously it had been some malaise and the obvious shoulder girdle pain and discomfort. That's why I was wondering if people have ever had those symptoms too. I've gotten some good advice and will finish reading them tomorrow. Today has been mostly devoted to calls back ( or not) fr. Drs. TY so much for yr reply. Bonnie
Are you sure you weren’t ill with a bug? Interestingly, one of the new Covid variants (Arcturus) can come with sore eyes and people can certainly get upset gut with Covid.
Hi, I have reduced to 2mg a week ago.
In the past have experienced occasional dizziness and found by taking my ramblers walking stick it gave me reassurance if feeling a bit wobbly.
Recently I have some more stiffness getting up after sitting for a while and on waking but this seems manageable at the moment. I noticed that having made an effort to do several days of house work prior to having a friend to visit that got a headache and nausea and shoulder pain. Took some paracetamol this morning which has helped. I had the same experience in July last year when friends took me out for lunch.
I find that if I feel tired and then continue to go out or whatever I get the symptoms Reflecting on the wise advice on this site that pushing on makes matters worse. I have decided that even though I feel Ok I will try and alternate active days with more restful days and see how I go.
TY that is reassuring. I, too, find that sometimes I can get through the malaise by pushing on.
This dizziness was different tho. Was just about disabling. I so appreciate yr input.
I think perhaps understandable anxiety about feeling dizzy can make it worse. Hope you feel much better soon.
TY. I may go up another 1/2 to see if it gets better( dizziness, malaise.
Hi...the experts will need to answer the question about staying on 2 mg forever...but I wanted to sharebthst in 2015.I developed rheumatoid arthritis. I was already on placquenil for sjogrens disease...so my.rheumy added methotrexate but I did not tolerate it and he stopped it after 1 week. So then he doubled the placquenil and added 3 mg. Prednisone which I was on non stop to May 2022 when I was diagnosed with PMR. I never had any side effects.....now.another story! And most important the two meds kept things under control during that time which is great. So from my experience if I could get down to 3 I would be happy...I guess zibwould want to make sure my adrenals were recovering/recovered but I would be less worried about getting to 0. So see what the smart girlie say.....😁
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