Second visit to Rheumatologist

[singingloud]

Yesterday I saw the doctor for my second time. I told him I’ve fired my internist and moving on to a Physician’s Assistant in January.

My sed rate and crp are in normal ranges on 15ml of prednisone but he know wants to see if I can move to 10ml of prednisone by alternating every other day 10 then 15ml and use Tylenol arthritis up to 4000ml a day to manage pain if it happens.

If the Tylenol arthritis doesn’t work to take my Voltarin or anti- inflammatory opposite my prednisone to manage the inflammation pain.

If this doesn’t work to let him know and he will then taper me by 1ml a day but I don’t know for how long.

Any comments? I’ll keep a diary for him.

Thanks

[Theziggy]

Tapering from pred when you have PMR should be very very slow, a lot of doctors aren't ware of this. How long have you been on Pred? A good tapering plan site can be found here - steroidtaper.com/

[singingloud in reply to Theziggy]

I was started on 80ml on September 6th 2019 by the internist that I just let go. On November 15th I finally meet with the rheumatologist and he had me taper from 25ml of prednisone to 15ml in ten days then to 10ml but I went back up to 15ml for three weeks in December.

He doesn’t want the prednisone masking anything else in the background. So he wants to get me to 10ml as soon as I can with controlling the pain with anti-inflammatories.

We will see how that goes. 🥴

[PMRpro Ambassador]

You haven't got an arthritis - you have a vasculitis (inflamed blood vessels) that is the underlying cause of the pain and stiffness. Ordinary pain killers almost never help with PMR - they may take the edge off pain, they may help with pain that isn't PMR, but PMR itself returning because you are being forced to too low a dose of pred won't respond to tylenol of any variety whatever marketing name they add to it.

I do appreciate why he thinks he wants to get you to a low dose so HE can see it in all its glory - so you might just as well get on with his taper. But there is a risk that if it is PMR you will struggle to get things under control again - no-one knows why and there is no real logic but there are several people on the various forums who have been made to do something similar and struggled afterwards.

[singingloud in reply to PMRpro]

I looked over the tapering schedule for the 46 weeks with my PA husband and we have decided to follow its recommendations of dropping to 12.5 for three weeks and so forth. I certainly do not want to go back to the pain I had in the beginning.

I have pain if I sit long in a chair in my crease of my bottom.

If I’ve been busy cleaning or playing with grand daughters I get some manageable pain in my shoulders joints and upper arm aches even now. So I want to be careful on how I taper.

If at the end of three weeks of 12.5ml I have similar symptoms should I stay at 12.5ml longer? It seems you all say to not move down till it is all calmed down but how long do you wait when it has calmed down?

Thanks so much!

[singingloud in reply to singingloud]

Also all my test before prednisone and after show NO rheumatoid or osteo I my body.

[PMRpro Ambassador in reply to singingloud]

I would - you shouldn't feel worse at the end of a taper than you did at the start so if you have more pain then, wait and see if it improved.

[singingloud in reply to PMRpro]

Thanks for the advice.

[piglette]

I am just amazed by some doctors. Pred works for PMR, why on earth suggest other meds that if you have PMR / GCA won’t help much anyway? Try the 2.5mg reduction you suggested, if you have any problems STOP the reduction wait until you feel OK and try a smaller reduction.

[singingloud in reply to piglette]

Thanks!

[HeronNS]

I'd be most concerned about the instruction to alternate doses between 15 and 10 - that's a 33% difference. Although a taper of 2.5 is still a lot to manage in one go I suspect you'd be better going to 12.5 and not alternating. Still not ideal but at least then your body will have a chance to get used to the dose, given you're under instructions to lower your dose as fast as you can manage.

I should add that although some people do alternate their dosage as they taper it is actually not recommended for PMR. I myself thought I'd try it at a much lower dose than you are and couldn't manage.