the 2 mg misery( again)

[bonmaine]

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.

[DorsetLady PMRGCAuk volunteer]

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-

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

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.

[bonmaine in reply to PMRpro]

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

[SnazzyD]

Hello, you say the misery of 2mg “again”. Did this collection of symptoms happen last time as well?

[bonmaine in reply to SnazzyD]

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

[SnazzyD in reply to bonmaine]

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.

[bonmaine in reply to SnazzyD]

Good thinking. Guess I had the same thought, tho there is no fever, I did take a COVID test and it was nega... thx

[Animalover65]

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.

[bonmaine in reply to Animalover65]

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.

[Animalover65 in reply to bonmaine]

I think perhaps understandable anxiety about feeling dizzy can make it worse. Hope you feel much better soon.

[bonmaine in reply to Animalover65]

TY. I may go up another 1/2 to see if it gets better( dizziness, malaise.

[Wallysma]

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.....😁

[bonmaine in reply to Wallysma]

TY and good luck. 😍