Dexamethasone vs pred....My brain cells hurt

[Wallysma]

so I saw my primary care doc yesterday and we basically talked about PMR and the dance of the prednisone dose and the constant symptoms. I am having trouble doing much of anything which is not great onball kinds of levels.

So first after being on 16 mgnpted for weeks I decided it was time to up a bit. I am on 17.25. Not sure it is helping....it seems to have helped some.pain spots but now others are worse. The exhaustion, spaciness and lightheadness still reign. So....as I was saying...

My PC doc said I ahould try.dexamethasone snd said I could just change from one to the other and start low...take potentially two doses a day...just see if it helps. He said he has had a few folks who did better on it. He also said he eould get with my rheumy if I wanted.him to. She is booked so I have been.following advice and info on this and mayo clinic sites. Wonderful for sure. As they say here in the US, you guys are saving my butt.

SO. ..any thoughts, ideas, advice, precautions, anyone else use this med?

Ok...thanks for reading. Hope you all are healing and getting better.or have low level symptoms today. Take good care.

Mickie

[PMRpro Ambassador]

The reason dexamethasone isn't used in PMR is because of the dose equivalent which makes it very difficult to taper the dose. With pred you would start about 20mg. 10mg of prednisone or prednisolone is equivalent to 1.5mg dexamethasone.

I don't know if you have seen the tablets - 4mg dexamethasone is TINY, cutting is going to be a nightmare.

emedicine.medscape.com/arti...

I do wonder what makes some doctors think they know better than tens of years of using pred!

However - did you try 20 or 25mg pred? If so - did it give you at least 70% global symptom relief? If not - why not?

If that couldn't be achieved - you do have to query if this is PMR.

[Wallysma in reply to PMRpro]

hi. Well the good thing is I can skip it. He just said he thought itight work better so.....that is why I said my brain cells hurt. Anyway yes..I started at 20 in May then was told to go to 15 for 2 weeks then 10. Originally I got good relief but it didn't last. My sed rate was down but then when I got to 10 I felt like I had neverbtaken anything. I called rheum office they daid do 12. Didn't work. Went to 20 (my pain doc said it could not hurt) then I started to come down. Then I found you all and.learned that the symptoms guide the dose. I was on 16 for weeks....decided it was not making enough of difference. 17.5...this is my 3rd day...I am feeling pretty ill. My back pain is better but the fatigue is worse and my arms are a lot worse....ugh. Do I go back to 20? Do I stick to 17.5. I was going to try the dexa. It comes in different dosing. .5 on up so. Oh well. Any other thoughts?

[PMRpro Ambassador in reply to Wallysma]

You have been messed about - that 20mg in May was fine but we see so often that when they rush down the dose as you were told to do it just creates trouble later on.

I would suggest going back to 20mg, get things properly under control and only then start reducing. And really - possibly 3 weeks or a month at 20mg, then 17.5mg if you can manage that drop and stay there for 3 or 4 weeks before trying another drop to 15mg. Too many doctors are so scared of using pred they create problems. It has become a fashion to start lower and reduce faster - it goes in cycles. In a bit they will see it doesn't work so well and go back again. You must keep the inflammation under wraps once you have achieved it - if you yoyo the dose it makes it harder and harder to get lower again.

[Wallysma in reply to PMRpro]

that does make sense. Yes I do feel like I am in the middle of a big mess and I am kind of mad about that. How soon should I see some results from 20....?

I guess I worry if 20 will do it now that all this jumping around has happened. But I guess I will have to see.

Thank you so much.

[PMRpro Ambassador in reply to Wallysma]

It is all about patience - and YOU have to do your part too, Getting to be symptom-free-ish doesn't mean you can go back to the level of activity you were at before. It is also about pacing and playing your part.

[Wallysma]

the problem is I am not doing anything...I feel sick and exhausted on top of pain. So I am going nutsy it's been too long. It's not like I am even living my abnormal normal life....prior to PMR...fibro., OA, Sjogrens, hashimoto's...that's what I mean. I am not pushing trust me.

[piglette]

Perhaps you can tell your PC why dexamethasone is not normally used, perhaps then they will use their brain cells a bit. As PMRPro says you have reduced too fast. I was in the same pisition started at 20mg the rheumatologist git me to reduce 5mg after three weeks, I was in a terrible state but did not know any better. It would be so nice if doctors were a bit more aware of PMR and also steroids than most of them seem to be.

[Bridge31]

I love the expression “ the dance of the Prednisone dose “ polka then waltz”perhaps ?

[Wallysma]

Doesn't it feel like that? A one and a two and a three...cha cha...dosie do.....yada yada yada. 👏🤷