Zero pred for 6 weeks now PMR returned or never w... - PMRGCAuk

PMRGCAuk

12,981 members23,549 posts

Zero pred for 6 weeks now PMR returned or never went away

cassie1208
cassie1208

I tapered down to zero with advice from GP but PMR is back with a vengeance. I can hardly get up from sitting down and am getting very little sleep and only a couple of hours with a strong painkiller. Had PMR for 3 years. Feeling drained.

It seems to me reluctantly that I have to go back on pred and I have some questions if you can help.

What dose pred do you think? Start on low dose and work up to see what works?

Are there any alternatives I can use other than pred?

Thank you

12 Replies

Oh dear cassie it’s back, or as you say it probably never went. The average duration is nearly 6 years after all. I would try 5 mgs immediately and hope that it does the trick. It is a dose that some Rheumatologists seem to be relaxed about you staying on, long term. Minimal side effects etc.

Have you ever had a Synacthen Test to see if your Adrenal glands are working to full capacity. I am being told that my symptoms are more to do with my Adrenal glands being at a lower output. I do feel awful at times. I hope you don’t have to go higher. Talk to the doc and us. Hope the doc understands! Good luck! Did you feel any better at some level at the elusive zero? X

Thanks for you quick reply just thinking about getting up and pain I will get. GP appt next week. I was thinking about 5mg to get me through so cheers for advice. Have understanding GP who listens and nice manner.

I am disappointed to go back on Preds but needs must. never heard of S test will look into it.

What dose pred are you on? Yes I felt better for 3 Weeks but I suppose looking back not completely.

It does help having your advice before I go to GP.

Have you seen Rheumi ever? I haven’t in UK.

Hope thing go well with you

Best wishes

Cassie

Yes I am under a very good Rheumie based in Leeds S.Mackie. I had reached 6 mgs but had my first flare following a chest infection and a flu jab. I am on 8 mgs now, hoping to get back where I was.

I went to the hospital in Leeds when I lived in Yorkshire a couple of years ago to do research on PMR and I met Sarah - yes she is very good.Hope you continue to make good progress.

She made the case to the GP (come straight off steroids). The Endocrinologist ( go from 5 to 4 alternately for 2 weeks, then 4-3 for 4 weeks and see him for another Synacthen Test. To do a very slow taper if the patient so wishes. I know what will suit my symptoms, health and well- being.

My OH has failed his first test in shielding me from stress which I have in black and white - I can’t cope with it and something called “ sick days”He balled at me and stomped off when I didn’t want to discuss something which would make him ball and stomp off. Great weekend over here folks.

PMRpro
PMRproAmbassador

That is a very typical time for the inflammation to build up and surface as symptoms again. You aren't the first for it to happen to - which is why we emphasise going really slowly at the end and not to assume that if you are fine for 3 months at 1mg you will be fine without pred at all! Sometimes even 1/2mg is enough to keep it at bay and it does no harm at all.

If it were me I'd try 5mg for a few days and if that works well, try 4mg and so on. You must be needing a pretty low dose as long as you were reducing fairly slowly to zero. But if you are still fine at 1mg - stay there for a few months before trying again.

cassie1208
cassie1208 in reply to PMRpro

Thank you for good advice, I think I rushed it at the end and now I am suffering for it!

Bronni
Bronni in reply to PMRpro

Once again, another statistic I was unaware of. After my first 18 mos on pred, I was able to be at zero - for 7 weeks! I was crushed when my symptoms returned. Had I known it was not uncommon, Im sure I would have had less anxiety. So much info here. Thanks!

PMRpro
PMRproAmbassador in reply to Bronni

We see that a lot - and doctors don't know about it or never mention it is a possibility. I have seen that for GCA the figure is quoted as about 50% in the first 18 months.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

this is something from a medical site I found squirrelled away on my computer which might be of interest -

“Because relapses are more likely to occur during the initial 18 months of therapy and within 1 year of corticosteroid withdrawal, with a frequency of approximately 50%, all patients should be monitored for symptom of recurrence throughout corticosteroid tapering and for 12 months after cessation of therapy.

Relapses usually occur when the dose of prednisone is less than 5.0-7.5 mg/day or after therapy has been discontinued. If symptoms recur, the corticosteroid dose should be increased to the dose that previously controlled the symptoms. Recurrences of the disease more than 1 year after discontinuation of corticosteroid therapy has been reported.”

PMRpro
PMRproAmbassador in reply to DorsetLady

That 50% is an interesting statistic. I'm sure the lack of flares with the Quick/Kirwan reduction is due to not rushing people to low doses in that first 18 months,

If it is PMR pred is the only thing that really helps. You say you are taking a strong painkiller, if that helps it may not be PMR it is helping, it is possibly something else.

You may also like...