Effects of going without Prednisone

[Trevgrrl]

Hi, I have been low on my prednisone due to not getting the dr to refill it in time. So this is the third day and I am aching so badly in my neck, hips, and all over. Does that mean I still have Polymalgia?

[SheffieldJane]

It’s horrible to feel so trapped. Your experience is definitely shared by others. You may be experiencing severe withdrawal symptoms rather than it indicating that your Polymyalgia Rheumatica is still active. Have you ever tried the dead slow nearly stop tapering programme outlined in FAQs on here? I can highly recommend it as a method to get down slowly and painlessly - tiny drops, no more than 10% of your dose spread over at least 4 weeks. Obviously you need to deal with this flare. Going up 5 mgs from your normal dose for a week to 10 days and then dropping straight back to your normal dose,,can nip a flare in the bud effectively. Then you could try the DSNS taper. Tell the doctor about your plans and stick with us for support.Just a thought, when I last got stuck on a dose my Rheumatologist arranged various scans, including a specialist ultrasound on my arteries. It turned out that I had Giant Cell Arteritis and Large Vessel Vasculitis, this probably explains my difficulty in tapering. It might be worth mentioning this possibility to your doctor. The diseases are closely related. I am currently being treated with Actemra which helps people to get off steroids more easily whilst treating the underlying condition.

[Sharitone in reply to SheffieldJane]

Did Actemra in itself make you feel better, or was it more of a case of enabling you to reduce steroids?

[SheffieldJane in reply to Sharitone]

I didn’t experience the usual return of symptoms when doing a quicker taper. There was no sense of feeling better in myself - like the often dramatic, initial response to Prednisalone. This was great, I spent a very short time on GCA high doses after 4 years on PMR doses.

[PMRpro Ambassador]

Are you still taking some pred? What dose are you supposed to be on? It is downright dangerous to just stop your pred suddenly as your adrenal function may not be good enough and that can make you very ill.

Your regular pharamcy may provide an emergency supply - they should do.

[Trevgrrl in reply to PMRpro]

Oh, I was feeling very ill yesterday and this morning I could hardly move. But my brother delivered my medicine for me at 8 and I am feeling slightly better already. I wonder how the rheumatoligist will explain it away. She probably knows. I tried using Actemra, but almost right away I got a horrible infection on my leg and had to stop the infusions. I am on 15 mg of pred a day, but sometimes I get so hurt desperate I take more and pay for it later. Now my dr has shown me the result of disobeying her. I know you all will think I'm a weakling but I'm just tired of being hurt going on 12 years. I'm beat.

[PMRpro Ambassador in reply to Trevgrrl]

Which is why I accept the pred at the dose I need to feel well. Been on pred for well over 12 years - had PMR for just about 17 years. I still remember what it was like pre-pred. Not going back there

[Trevgrrl in reply to PMRpro]

The trouble between my dr and I is that I think 25 makes me feel good, and she says only15, no compromise.

[HeronNS in reply to Trevgrrl]

Any chance of seeing another doctor? Also, after all this time I suppose you have been checked for other conditions? If you have longlasting intransigent PMR you should be given the right amount of pred, and also be allowed to taper in a sensible way which respects your condition, not being left high and dry almost as a punishment for being unable to manage at what the doctor thinks is right. PMR can come and go, as I found out last year, and I really hope you can find someone who will more sympathetically help you manage your PMR.

[PMRpro Ambassador in reply to Trevgrrl]

25 ongoing IS a bit high - but she needs to find out WHY. Maybe it isn't "just" PMR/GCA, maybe all sorts of things. But to be honest, if you need more than 15, being forced to stay at 15 means you might as well not take it all since eventually the unmanaged inflammation just builds up to the same level as with none, just takes longer. But you appear to already be there ...

[HeronNS in reply to Trevgrrl]

uptodate.com/contents/clini...

Part way down the page is a section on "differential diagnosis".

[MrsNails]

It’s really risky to run out of Prednisolone no matter what dose you are on as you risk an Adrenal Crisis.

25mg really is high to keep the PMR at bay - how long have you been on this dose? You really need a proper discussion with your Rheumatologist regarding this & a way forward.

Good Luck

MrsN

[Sharitone]

Thank you, that's really interesting. I have only been on pred for just under two years,, and Actemra for 7 weeks, but identify with you in that the pain is mild and not flaring, but the fatigue is horrendous.From your experience, do you think that the Actemra was guarding your back while you reduced the pred but did not help directly with the fatigue; and so the fatigue was the product of pred and the disease?

[SheffieldJane]

That is interesting. I am currently experiencing not only infections that need antibiotics but constant abdominal pain and diarrhoea. Tonight I threw up. This is either some new horror or my body is objecting to Tocilizumab and Pred. My Rheumatologist has taken me off Tocilizumab/ Actemra until I see her in early February. My life is lived between sleeps across the 24 hour period currently. Not good.