tapered too fast

[Utaker]

My 69 yr old husband has had PMR for about four years. We got down to 10mg Prednisone by tapering .25mg every two weeks. When I got to 10mg he was feeling ok so I started tapering faster, thinking that we could finally be done. When I got below 5mg I got really excited and tried to taper weekly by more than .5mg/week. Now since February he has been cold and tired, his legs and hips hurt, he has tingling in his feet at times, his hands are weak and he has developed signs of carpal tunnel. His thyroid meds needed increased and he is mildly anemic with low folic acid. We have adjusted those items and are now raising his Prednisone back up to 5mg. We hope that this helps. How long can PMR hang around?

[123-go]

Hello, Utaker. There is no definitive answer to your question. Everyone is different and there is no one tapering regime that works for all. What IS true is that the lower the dose of Prednisolone the slower the tapering in order to avoid flares and the necessity to increase. The fact that your husband was doing well at 10mg is due to the inflammation in his body being well-managed by the steroids. There is no cure for PMR but patients will go into remission in anything between 1year exceptionally to 2 years (if ‘lucky’) to 5 years to 10 years - and sometimes more. PMR marches to its own drum and patience is needed.

I have to stop here as have an early start and OH is glaring at me but others will be along. Read through this thread this in the meantime:healthunlocked.com/pmrgcauk...

[SnazzyD]

Hello, the added complication at this dose level is recovery of the adrenal glands, or not as the case may be. They will have been suppressed by higher doses of Pred but under 7/8mg they need to start to work and under 5mg they definitely do. This can be slow and throw up all sorts of symptoms until one regains function. A couple of examples is feeling cold and lifeless. Do read this, it’s essential knowledge for long term steroid users and can also be life saving. Presumably he’s going to have his thyroid tested too?

healthunlocked.com/pmrgcauk...

I agree with 123-go also but will add that his body has become accustomed to a powerful drug that affects other functions too. The body accommodates that and then when we take it away, it needs to readjust. Some of us take longer than others to acclimatise. Also, other issues held at bay by Pred can also emerge.

You are not the first to become “excited” and see the end only in terms of numbers. Unfortunately, those small numbers are still significant to the body.

[PMRpro Ambassador]

"When I got below 5mg I got really excited and tried to taper weekly by more than .5mg/week."

The lower - the slower! This is the stage at which the body has to start to produce some cortisol to top up the body's natural corticosteroid, cortisol, which is essential to life. While you are at higher doses of pred it suppresses the natural production and the HPA axis that governs it gets a bit rusty, It then requires a very slow taper to allow it to get back into the swing of things again. The symptoms you are describing are most likely due to adrenal insufficiency - and ,5mg per MONTH is far more suitable.

There is also the fact that even 1mg of pred can be loads to manage any inflammation due to the underlying autoimmune cause of the symptoms we call PMR. Just because you are fine at 5mg doesn't mean you will be fine even at 4mg - you still have to taper slowly to identify the right dose for you (or in your case, him).

As to how long does PMR last - we have quite a few on the forum who have been treated for over 10 years, I've had symptoms for 18 years. There are people off pred in a year or two, the majority take more than 2 years, about a third are really longtermers and a very few have it for life.

Just going to 5mg because that was the last place he was good may not be enough. There is a degree of accumulated inflammation stored up and our usual flare recommendation is to add 5mg to the dose where you flared for 1 to 2 weeks before dropping back the dose above where you flared before embarking on the SLOW taper again. You need time at each new dose to be sure it is still enoughm whether in terms of PMR or adrenals.