Reducing

I began taking 15 mg daily  of Prednisone 2 years ago for PMR and managed to taper very very slowly till I reached 1 mg  daily  3 weeks ago.   I then stopped the 1 mg. but the pain and stiffness is still there  I am so eager to stay  off of the Prednisone - I put on 30 lbs over the 2 year period - and feel like an old woman - In the past 3 weeks I have managed to lose 10 lbs but am still in pain which wakes me at night but is improved when I work physically - but I am so tired all the time and it is so humiliating to be in obvious difficulty when transitioning from sitting to walking. The rheumatologist said that in her opinion the disease is still there but if I can endure the pain then she is ok with my stopping the steroids. I am suffering from the steroid side effects - cataracts, weight gain, muscle weakness - but without the steroids I am in pain.  Do I acknowledge defeat and go back on to steroids  again or will things gradually improve?

 

Im trying my hardest to get off the steroids , doctor told to up my dose while recovering from op but I havnt , I going to see how bad the pain gets first .

If the cause of the PMR is still active then what is most likely to happen if you don't go back on pred is that the inflammation will just keep building up and you will get worse. I had PMR for 5 years without pred, not out of choice but because the doctor didn't see anything was wrong because my bloods were OK - and NOTHING would induce me to go back to that. I can assure you - in my mid-50s I felt like a 90 year old and the pain was awful, not always particularly severe but never-ending.

Although she may not object to you not going back on pred - it is when all is said and done your choice - you rheumy obviously hasn't explained that the unmanaged inflammation in your body does put you at risk of other diseases in the long term, including cardiovascular disease and cancer. You will probably be less mobile, and that doesn't help weight gain believe me nor osteoporosis, and the ever-present pain is a predisposer to depression - I speak from personal experience there.

Only you can make the decision but the sooner you take pred again the less problem you are likely to have getting in balance again. You were obviously fine on a very low dose of pred so you could probably have stayed at just a few mg and been fine - you are by no means the first person to have felt OK at 1mg and the symptoms came back when you stopped altogether. It's also never a good idea to just go from every day even a low dose to every day none overnight - dropping a 1/2mg is better and then missing every other day even better.

It IS possible to avoid weight gain with pred and also possible to lose weight - cutting carbs seems to make a big difference there. There is a recent post where someone says his blood sugar levels shoot up if he eats carbs in the 7 or 8 hours after taking the pred - the same food has almost no effect later in the day. Pred affects how we process carbs - leave them out and it really does seem to help. There are quite a lot of us on the various forums who have lost weight or not gained weight by doing so.

Eileen, I appreciate your carefully reasoned in-depth reply. I will admit defeat and go back on to the steroids!

Thanks. Ricky

Try not to see it as defeat.

One of the things we "oldies" try to emphasise is that accepting that you have a chronic illness that requires long term medication actually empowers you. By accepting you stop fighting - and that leaves you a lot of energy to devote to working with your limitations. Yes, there are things you don't have, other things you do have (maybe weight gain and the other side-effects of pred), But as autoimmune disorders go, PMR is really not THAT bad. It doesn't kill you, it can be managed fairly well - and being cuddly doesn't alter the you that is inside. You just have to recognise that.

As Eileen says, it's not defeat.  Just a stage on the journey.  I had a similar setback, albeit a minor skirmish in the big scheme of things.  A couple of weeks ago I had almost reduced to 2.5.  I gave it a fair shot, but didn't want to keep pushing when I woke up one morning with definite new pain in my upper body.  Went up 1 mg to 3.5 for a few days.  I planned to taper back down by alternating the dose with 3 for a while, but as soon as I went back to 3 I felt so well I've just stayed here - for a week now.  I think it's going to be okay.  So what I learned from that foray was that 2.5 wasn't enough, but 3 is more than adequate.  Had I pushed on, hoping to get lower, I'd probably be discovering what a full flare is like.  Not defeat, strategic retreat and regroup, that's what I've done.  

I agree with Eileen regarding not tapering from 1 to 0 overnight. Now that I am down to a low dose; I went from 1 3/4 mg to 1 1/2 mg.  I'll stick with that for 3 weeks.  If all goes well, I will continue to decrease by 1/4 mg.etc.  Though the first few days into the taper, I wasn't feeling 100%, it seems to be getting better; with leg aches mostly during the night.  However, I will bear with it unless it becomes unbearable.  

Eileen is certainly spot on.  BTW, I've lost 30 lbs while on prednisone.  Bottom line:  a pound is still 3500 calories even on pred, so if you lower your food intake you will lose not gain.  I'm the one with the sugar issue too, and I've been having great success by taking my pred at 10 pm in the evening.  I'll post at length when I've been doing that for a few more weeks, and report what is happening. 

I did think of it as defeat - but of course you are right -  I have been battling and resentful and very angry - but didn't really think about it constructively -  thank you so much.  I am now  7 hours after having taken 10 mg of prednisone and copying the slow reducing plan from this site! 

Thank you tpaggs for your comment - I was told by my gp when I was on 2 mg that it was so little that I should stop it all.  I didn't and tapered down to 1 mg but it never occurred to me to make it even more gradual than that.  Now that I am back on 10 mg I shall taper according to the plan on this site - and even cut into quarters!.  Thank you.

I am interested in reading your post on your  night time taking of pred - .  It is encouraging  to know that it is possible to  lose 30 lbs while on Prednisone!   Do you eat anything at all? 

If your GP thinks it is so little you should just stop it - he could be quite a dangerous GP! Never mind the PMR - after long term pred your adrenal glands have to start functioning properly again. It could just be that that 2mg is the little bit of supplement that is keeping you healthy as your adrenal glands sort themselves out. Take it away and you could slowly (or not so slowly) slide into an adrenal crisis.

But if 2mg is managing your PMR and less doesn't - any GP worth their salt should be encouraging you to stick there and not worry about reducing any time soon. It is such a low dose that they should be grateful.

Wendy I hope you are not suffering too much.

Of course i eat, but if i burn 2500 calories and eat 2400 calories, i should lose a pound...in 35 days. As it happens i burn more and eat less than that. I also exercise more than 2 hours a day working to hang on to muscle mass while losing fat. Im working to give pmr no place to hide.

I am impressed that you can do two hours of exercise daily. Doesn't fatigue slow you down? Or are you forcing yourself to endure?

I  don't seem to have any fatigue.  I did early on, but it seems to have passed.  I certainly had to force myself to exercise at first, and from that perspective I suppose I still am forcing myself.