Does the back and forth ever end :-(
Posted , 7 users are following.
Diagnosed in April 2016 and started on 15mg. Excellent results within 24 hours. Tapered to 12.5, then 10 and was doing well on 10 for quite some time. If I tried to go below 10mg symptoms would return so I stuck with 10mg for almost a year.
Several months ago I had some radiation treatment and the 10mg was no longer doing the trick so I slowly kept increasing it. Now back to 15mg and it is no longer as effective as it was when I first started. Feel stiff and achy again and the extreme fatigue is making me miserable.
I am reluctant to go above 15mg since the thought of having to be at a higher dose then when I started over a year ago is a major set back to me psychologically. I figured by now I would have reduced my dosage and be well into the process of losing the weight I gained.
Am I being foolish not to try doses above 15mg or should I try to stick with it and hope that it eventually works as it did in the past ?
Thanks in advance.
0 likes, 36 replies
EileenH rocketman42
Posted
I would say you were, yes - it was also not a good idea to creep up the dose as you did. But, to coin a phrase, you are where you are.
However - not prying, but one assumes you have some form of cancer to have had radiation treatment. Is that all well under control? PMR can be the symptom of underlying problems there. And PMR really doesn't mix well with stress - and that will have been stress.
If you get into a mess with reducing it is not uncommon for doses that worked before to be less effective later. And if you were diagnosed quickly you may have started on pred at a point where the autoimmune cause of the symptoms was relatively low in activity and where there was little stored inflammation to get rid of. Now it is there - and until it is properly cleared out you are unlikely to get as good a result as you had before.
In case you haven't seen the posts, there has been a lot of discussion on the forum about weight management on pred. Quite a few people have found low carb has helped them avoid weight gain or lose weight once it is there. I lost 36lb or so while still taking pred at between 10 and 15mg - it can be done. It does require some discipline but it is easy enough to implement.
rocketman42 EileenH
Posted
Yes ...radiation was for cancer that is now under control. Obviously it is a stressful period and the procedure itself has caused damage to the body in an effort to kill the cancer cells.
Since you don't agree with slowly increasing the dose to find what works, what would you suggest? Should I jump up to 20mg and hopefully work down from there ? Thanks
EileenH rocketman42
Posted
Michdonn rocketman42
Posted
scotth42, I agree with EileenH, my doctor tried to bring me up in little
steps till it got so bad I couldn't do anything. I wish she had given
a good bump to start with maybe the jump to 20 would have work. I
do know that will happen the next time. And when I get in.a 10, I am
really going very little reduction at a time.
Michdonn rocketman42
Posted
and got flare, had to go up to 30 mg to get relief. On 20 mg my wife had to
roll me in to the medical center in a wheelchair. Hoping to reduce to 27 1/2
next week. A few weeks ago I could not walk around are little pond in town,
it is 1/6 of a mile, yesterday I walked over 5 miles on my Fit bit. Get rid of the
pain and get moving! Put a smile on your face, it does help!
cb72360 rocketman42
Posted
I'm doing the same thing. And you're right it's s set back to me also. Although , I understand people are in predisone for years and I'm not sure if they ever get to reduce a whole lot.
If I didn't have such horrible heartburn with the increased dose, it might not bother me as much.
It seems that this is a never ending yo-yo game!
EileenH cb72360
Posted
Most of us with PMR started at 15-20mg and most of us have been able to get below 10mg eventaully - it isn't a race and if you try to force a reduciton you will cause problems. By reducing slowly in small steps, preferably 1mg at a time, you avoid the risk of flares, having to go back to a higher dose to manage the symptoms - once you get into a yoyo situation you are heading for trouble. Accept pred as your friend, reduce slowly and you will have far fewer problems.Being on pred isn't that bad - it gives you your life back and allows a normal lifestyle. I do most things other women of my age expect to do. Above all, I have next to no pain and stiffness and feel pretty well. In the 8 years I have been on pred - I'm unusual in that I've had PMR for 13 years - I have been as low as 4mg for a considerable time. I had a flare Jan 2016, retunred to 15mg but am back to 7mg now.
rocketman42 EileenH
Posted
I appreciate your pointing out the facts and helping me realize I'm not atypical in my journey. My biggest challenge is not liking to be on meds that cause side effects. I guess no one is and I'll have to accept it in an effort to improve my quality of life.
Michdonn cb72360
Posted
reduce to a minimum amount, will get better either way. Many
of the people on the Forum have been on prednisone for sometime
their experience willl help us through this YO-YO mine field. I have
learned far more on the Forum, I personally think some of the
members could teach the doctors a thing or two. Hang in there I
have been on Omeprazol 10 mg and Calcium for years, for other
problems, but I do not have any heartburn.. Hang in there man,
things will get better. Life is good, put that smile on your face!
rocketman42 EileenH
Posted
Is that more a function of the inflammation and PMR or of being on prednisone ?
EileenH rocketman42
Posted
EileenH Michdonn
Posted
"I personally think some of the members could teach the doctors a thing or two. "
We already do - some of us are involved in research and drawing up guidelines and stuff. It was the patients who got the charities going and one group funds research too.
TheRaven rocketman42
Posted
If I feel a bit down all I have to do is recall the severe pain and disabled condition I was in prior to getting on Prednisone. I've been on Pred for 7 months now, started at 20, lowest has been 15 and now at 30. I'll take the side effects, setbacks, speed bumps and changes in living. I'll be taking a shot at lowering to 25 in another couple weeks but am not going to worry about it. I'll get there and some day I'll get down to the mythical single digits too. I give thanks for Prednisone every day because I wouldn't be having a near-normal life otherwise. It's a real life adventure!
cb72360 TheRaven
Posted
I'm starting to feel this way too. If it weren't for the Predisone, I wouldn't be able to do anything.
It definitely is a real life adventure, one I wish I didn't have to endure!
Michdonn EileenH
Posted
Michdonn cb72360
Posted