Fast prednisone withdrawal due to not having PMR- Advice needed on issues

[Pawscat11]

Hi everyone.

As my last post stated it has been decided by more than one different consultant and speciality that I was misdiagnosed years ago with PMR. I am reducing the prednisone very fast under advisement. I have dropped from 20mgs to 5mgs (in one go) with no adverse effects although my average around the 5 years+ was 12.5mg. I have now been told to drop at a rate of 1.25mg per month. (Spain smallest pill is 2.5mg so thats a half a pill). I am a week in at 3.75mg and my only new symptom is dizziness although my blood pressure is normal. Could this be pred/adrenal function related or something else completely. The plus is all the hot sweats seem to have gone. I am not especially fatigued either so far. I am just concerned at the speed they want me off the drug but understand why as it is causing other problems by being on it. Any advice/help things to watch for would be appreciated. I was hoping for some weight loss signs by now but as they have added Pregabalin and Vimovo ( naproxen covered with omeprazole) It look likes that may not happen.

Thanks for reading and a Happy Xmas to you all.

[PMRpro Ambassador]

If you have been on pred for 5 years, it is likely that it will take 8-12 months for your adrenal function to return - that isn't me saying it but expert endocrinologists on tapering after chronic use of pred. Not too much of a problem above 5mg but as you so rightly say, could well be now. Have they at least given you instructions as to what to do in the event of signs of adrenal insufficiency and - heaven forbid - adrenal crisis? There is a rescue pack to be kept at home for such an event but it is a bit complex for non-professionals and especially one in the throes of an adrenal crisis.

The dizziness could well be adrenal insufficiency. I would slow down and do at least 6 weeks on each dose, preferably 2 months but I appreciate the problems.

Why had you never got to low doses before?

[Pawscat11 in reply to PMRpro]

Because below 12.5mg I was in too much pain to go lower and they carried on the PMR train. Steroids do help inflammation so they did help but they are not a long term solution for the problem I have. As its Sciatica caused by a spinal problem coupled with Hemochromatosis now I need to be off the steroids.

[PMRpro Ambassador in reply to Pawscat11]

No, that is absolutely fair enough. I was just wondering about you saying you'd had no problems with the big slide to 5mg. Wouldn't that have been the case before?

[Pawscat11 in reply to PMRpro]

It was cold turkey for a week with intense pain so I could have different pain relief meds instead but I couldn't have those meds with steroids over 5mg so a fast drop was needed so I could take the alternative if that makes sense. (mainly risk of stomach ulcers and bleeding)

[Pawscat11 in reply to PMRpro]

On your other point no I have had no advice just another appointment in 8 weeks when its expected I will be at 2.5mg

[PMRpro Ambassador in reply to Pawscat11]

Good lord. Hum. I think you need to demand an endocrinologist before you try to go too far. Adrenal crises are dangerous animals ...

[Pawscat11 in reply to PMRpro]

Will stay at 3.75 get xmas out of the way and take it from there thankyou. I have private health as well as state health here so I will be able to see one.

[PMRpro Ambassador in reply to Pawscat11]

Yes, letting xmas get out of the way is a VERY good idea!!

Have you got a GP who would do a basal cortisol level for you? That is cortisol measured on a sample of blood taken between 8am and lunchtime. That would give a good indicator of whether anything is stirring in the HPA axis and whether going slower might be a good idea.

[Pawscat11 in reply to PMRpro]

Yes I can sort that in the new year. Thank you so much for your help and have a great xmas in Italy.

[nuigini]

A recent PET scan indicated that after 10 years my PMR is in remission. I had suspected as much because there had been no flares in over a year. My problem is tertiary adrenal insufficiency caused by long tern use of prednisone. Fatigue is a MAJOR issue and I have to creep down on pred ever so slowly.

The attached guidelines may be of interest.

endocrine.org/clinical-prac...

[Pawscat11 in reply to nuigini]

Thank you I had to go back to 5mg yesterday as I work & was unable to function with dizziness and lethargy. I will start again more slowly in the new Year.

[PMRpro Ambassador in reply to nuigini]

But a PET scan when you are on pred isn't reliable?????

[nuigini in reply to PMRpro]

I was aware of that going in and hadn't taken any prednisone for 36 hours before the test. Did that make a difference? Who knows? The rheumy I'm seeing wasn't concerned when I raised the issue. I know, are they all aware?? He and I discussed the fact that PMR can rear it's ugly head again. He wants me to slowly reduce based on adrenal insufficiency and see what happens. After 10 years of pred he says there are other things that could be hiding.

Before the PET scan I had no PMR symptoms or flares for more than a year. The PET scan was 4 months ago and I've been doing things in that time that would normally have set PMR on fire for me.

The only serious symptom I have now is fatigue at varying levels, some days light and some days deadly. I can usually push through. If I reduce too low I can get quite depressed and cranky after several days. So, I'm still playing the game with pred reduction.

What I need is the advice of a good endocrinologist and hope to have a referral come through in the next few months.

[PMRpro Ambassador in reply to nuigini]

Not that they can do a lot - the only thing that gets cortisol going is low pred doses, like below 5mg.

[BreakawayRoper]

To Pawscat11,

I do have PMR and have been on prednisone since early October. They started me at 20mg. After6 weeks, I stepped down to 15mg and will continue on that level until 4 weeks when my Doctor wants me to take 10 mg for another 4 weeks. Then reduce to 5mg for 4 weeks and thereafter decrease by 1 mg for 4 weeks each. If no adverse reaction at any point along the schedule, we'll be happy!! If the pain increases at any point I'm to contact her and she will prescribe a different medication and I will stop the prednisone all at once. My pain is returning at 15mg, although it is at a low level that I find easy to ignore/live with! I am experiencing fatigue now. Her advice yesterday was to continue with this schedule.

This is the typical tapering schedule for her PMR patients. She makes alterations to the schedule based on the individual patient's reactions to each decrease. From reading the notes from other PMR patients, their experiences can vary widely. Since you aren't a PMR patient and have a very good reason to get off the pred as quickly as is reasonable, I would trust your Dr's guidance. Of course, you can always get a second opinion which might be very helpful.

Best of luck. And Happy Holidays!

Breakaway Roper

[PMRpro Ambassador in reply to BreakawayRoper]

All I can say is Very Good Luck with that - especially if you are already experiencing a return of pain at 15mg. Do you know what other medication she is intending using to replace the pred?