Posted , 15 users are following.
I have had a really bad 2 days. Just want to sleep. I have not left the house. I was at 10mg. was dropeed to 9 -10- 9 -10. I feel like crap. So very depressed. So angry From all i read here sounds like we will never be who we were. So Sad. Can dropping the predisone be making me feel like this? Any good advice needed. I do not mean to bring any one down. thx
1 like, 30 replies
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Ardern karen81902
Posted
I hope you are feeling better today. Is it possible you are trying to taper to fast. A drop from 10 to 9 mg is a reducing of 10% maybe you body cannot take a large reduction as that. I was cutting back by .5 mg at that piont and feeling drepressed and lethargic. I could not get up in the mornings and sleeping in made maters worse. I am below 5 mg and cutting pills into 1/4 to kept the taper down to about 5%. you may have to try different ways to deal with the problem I am not sure how large a dose you started with but look at where you started and where you are now. Maybe you should try maintaining a stead dose for a addition week to let you body stablize and adjust to that dosage
good luck
EileenH karen81902
Posted
" From all i read here sounds like we will never be who we were."
I don't think that is necessarily true - I feel pretty well and I've had PMR for 12 years and been on pred for 7 of them. There are things I can't do but some of those would have gone with age anyway. I feel reasonably well - and there are a lot of people far worse off than I am. So hold on to that thought - there is life with PMR and MrsO and a few others can tell you there is life post-PMR/GCA as well.
Statistics from a paper written in the USA some years ago say that about 3/4 of patients with PMR get off pred in somewhere up to 6 years, about 1/4 in under 2 years but they are more likely to relapse at some later point. Those of us who take longer maybe need the pred for adrenal problems rather than the PMR.
Dropping the pred could make you feel that bad - but from 10 to 9.5mg which is what it effectively is shouldn't. It may be your body can't cope with the constantly changing dose - get a pill cutter and cut a 1mg tablet to give you 1/2mg fo you can take 9.5mg every day. If that doesn't work ask your doctor (the GP?) if you can try the Dead Slow and Nearly stop approach which allows you a lot more time to get used to the change. I notice a difference on the first few times I have the single day of the new lower dose but then it settle down but after a bad day I have several good days before the next new dose day.
It's in the replies to this thread:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and is being used in a clinical study in the north of England.
But maybe it isn't the PMR, nor the pred - maybe you have something else going on. An infection or something. You can't blame it all on PMR and pred - we get ill in other ways too, we did before PMR!
FlipDover_Aust karen81902
Posted
Karen,
The early days are hard. Really hard. And so are some of the days when you think you are on top of it.
It's not fair. These things never are, and we never expect them.
But you WILL get through this!
daisylazy karen81902
Posted
Hi Karen .
I agree with Eileen that we might not be the same as before pmr but there is every reason to expect to be fairly ok .I can empathise with you because i felt like crap at times but on Eileen's very good advice i adopted the DSNS method and am doing fairly ok .Am just starting to taper from 4.5mg to 4 .The last few days i have a burning sensation at the back of my neck and back .Any thoughts on that anyone .Hope things improve for you and mind yourself .
jeanne333 daisylazy
Posted
You say and I quote .. "there is every reason to expect to be fairly ok"; then you go on to add how you are feeling a burning in your neck and back. To live in pain and with muscles that no longer work, might be acceptable to you but not to me. l want quality of life, I want to be able to move without pain and stiffness. It just doesn't look like I'm ever going to reach that point, a year ago I started on 20mg of prednisone I I have been able to get down to 19mg, (in a year), but Im just maintaining, as i still have discomfort, pain, stiffness and muscles that don't work. I'm worse than I was a year ago, I wouldn't call that "Fairly Okay".
EileenH jeanne333
Posted
Not everything you have can be put down to PMR. There are other things that happen anyway.
If, after a year, you have been unable to reduce any further than that, then your doctor needs to try a bit of lateral thinking - myofascial pain syndrome and piriformis syndrome, to name just 2 things, are often found alongside PMR - but don't respond well to oral pred. Local therapies are far more successful. If you are worse now than a year ago - then it must be considered this may not be due to or even PMR. One criterion for PMR is felt to be a significant improvement with a moderate dose of pred, 15-20mg should achieve a 70% improvement overall in symptoms. If it doesn't - questions must be asked. The most recent guidelines suggest up to 25mg may be required - but no more.
You'll find links here:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
But you have to accept there is a new normal - and it isn't where you were pre-PMR. Acceptance of being where you are makes life much less upsetting. Believe me, there are far worse things to have than PMR - above all it doesn't kill you. And it iS possible to have a good quality of life with PMR - but you have to play your part with lifestyle changes. Pred does one thing - relieves the inflammation and, as a result, the pain and stiffness. You have to pace yourself and avoid the activities that make it worse - or accept the result.
daisylazy jeanne333
Posted
FlipDover_Aust jeanne333
Posted
Hi Jeanne, trust me, we all WANT to move without pain and stiffness!
I get angry and frustrated and depressed about it too. Today I've cried three times already and it's only 10am.
I'm a bit like you - the pred hasn't really 'fixed' it after 18 months of serious prednisone doses, it helps, but there's obviously other things going on - myofacial pain sydrome? fybromyalgia? who knows with autoimmune floating in the mix?
My rhuemy thinks I'm not responding to the pred like I should. I'm on MTX, just started plaquenil and soon I'll be on tocilizumab. If nothing works I'm going off them all and see what happens. BUT none of this is going to happen overnight.
We are SICK. Our bodies aren't working right and there's NOTHING you can do about it. Acceptance is hard - this I truly know as I haven't achieved it yet either.
I can hear your pain from here and I wish I could give you a big hug and we could have a cry together.
jeanne333 FlipDover_Aust
Posted
Watch that "Plaquenil" my RA put me on that in March and 4 weeks later I couldn't walk or breathe. I had 5 severe side effects, difficulty breathing, really bad pain, loss of muscle control (couldn't pick my feet off the floor) excessive bleeding (legs were purple from crotch to toes), extreme fluid retention with legs and feet so swollen, and fluid leaking from my pores and any little scratch
burst open, that was 2 months of Hell. I now can walk in the house without my walker or cane, but out doors I use my cane (cuz I still have trouble with my balance) my husband pushes me in my new transport chair if I have to walk over 40 feet. I did down to 7MG prednisone in April, lasted for 2 days and then had a really big flare, since then I've been struggling to get below 19. I had just gone to 18mg, when I had the bad reaction to the Plaquenil, so yes I'm having a hard time. The pain and stiffness, is just laying there waiting to trip me up. My hands and feet cramp so bad at times, my hands looked deformed; sometimes that is very painful other times just annoying. The worse part is when they lock up, I can't open them without force or waiting for them to relax. This happens with my hip and ankle joints too. I'm now on oxygen but I still get breathless when i walk. So no, I do not want to live this way, i dont en want to leave my house. But I am better than 6 weeks ago, I could only hobble then. And yes I would like to get off the steroids, but not at the expense of living in pain.
Anhaga jeanne333
Posted
Many of us take extra calcium when we are on steroids, and without additional magnesium that can upset the delicate calcium/magnesium balance. If you think this might be the case, take magnesium at a different time of day from the calcium. Calcium is very good at taking precedence over other nutrients and medications, so if you do have a deficiency of magnesium this would help you get the best benefit from a supplement.
FlipDover_Aust jeanne333
Posted
Yeah this is pretty awful, I really feel for you.
I really hope I don't get the side effects you had/ve.
dea13 Anhaga
Posted
I do take a magnesium capsule very day, have done for years as we just don't get enough with the soil and food these days; But I didn't know not to take it with calcium / I take calcium/ vit D power very day in my shakes as the Dr said I was low in D : I'll look into it: Thnaks Dea