Needing advice

[beringer]

I’ve been on 30 mg prednisone for 3 weeks for a G CA flare up, now going down to 25 mg for 3 weeks.. I’ve been very short of breath & little oxygen to my head. Anyone ever have this problem.. on steroids & very short of breath…I’m not getting oxygen to my head, can’t walk straight .. Any ideas? I find this very scary.. please respond.. Thank You…..

[123-go]

Hello Berlinger. I'm sorry to hear you are feeling so poorly. I believe Pred can cause shortness of breath. I see that you've had lung problems in the past. Have you consulted your doctor? If not I would do that straight away for reassurance. Take care.

[PMRpro Ambassador]

You HAVE spoken to the doctor? Poor balance, GCA affecting ears, as well as other things could account for the poor walking. But if it really is "oxygen not getting to your head" it needs investigation asap.

[SheffieldJane]

I am not sure what you mean by oxygen not getting to your head. I am on Pred and Tocilizumab for GCA/LVV. I get very breathless sometimes and I can feel wobbly when I walk. Is it that? It is scary and you do need to tell your doctor so they can run tests. That is where I am at.

[Frewen1]

I’m on about the same amount of Pred for GCA, and yes, am wobbly all the time ( but still walk and do some exercise ) - and I get breathless going up a slope or hill , fine on flat or downhill. Don’t understand the oxygen part, sorry...

[bonnielm1]

Yes I used to feel that way. I was on prednisone for many years and it was hard to get off of it. Sometimes I would think it was too strong. I would feel like I would crash into walls when I walked. Terrible feeling. I had breathing problems too. But check with your doctor. And remember you have to go real slow at reducing the dosage to ever come off. I would end up in the hospital. But I got a different doctor and things really changed. Take care and I hope you will feel better soon.

[tytto]

I have been on Prednisone for almost 2.5 years. Twice I have slowly tapered to 5 mg, but could not tolerate the pain and stiffness in the shoulder/upper arms, hip and thigh areas. Increased dosage - per myrheumatologist and now again I am slowly down to 7.5 and 8 mg daily. I am doing quite well but not as good as when I was taking 10mg daily. I am attempting to go even slower than the other 2 times. Good luck.

[PMRpro Ambassador in reply to tytto]

Bear in mind though that your previous exeriences are probably your body and your PMR telling you it is still active-ish. The more often you push it and end up with a flare of symptoms, the harder it may become to reduce the dose the next time.

[tytto in reply to PMRpro]

Thank you -- my sense is that I did not experience a flare, but that the PMR had not left me. Make sense?

[PMRpro Ambassador in reply to tytto]

Absolutely - and with too little pred, it came out to play ...

[tytto in reply to PMRpro]

Then how does an individual REALLY KNOW when it is safe to eventually be off prednisone?

[PMRpro Ambassador in reply to tytto]

You keep reducing REALLY slowly, in small steps and with a long gap between once you are at low doses, under 5mg but definitely under 3mg, to be sure the new dose is still enough. Even at 1mg still being OK you carry on the same - it can be plenty to manage the daily dollop of new inflammation! Don't believe anyone who tries to tell you it can't be doing anything, From 1mg one way is to take a dose every other day for a couple of months, then every third day for a couple of months. It sounds silly - but I do know several who were absolutely fine and full of beans at 1mg, even 1/2mg, but at zero the PMR stiffness reappeared after some months as the inflammation built up again. When it is as low as that you can either accept a low level of pred or keep trying. Prof Dasgupta says he often keeps people on 2-3mg indefinitely as it reduces the likelihood of relapses. I think that is giving up too soon - but it is a very good fall-back position.

[tytto in reply to PMRpro]

WOW!! That will take a very long time as I am 85+ years already. I will keep going as long as I can. I can tolerate the stiffness but it is the pain that goes with it that is a problem, though the pain is NOTHING like it was in the beginning priorto being diagnosed. Gracious Thanks again!!!

[PMRpro Ambassador in reply to tytto]

I think Dasgupta might well encourage you to not worry about getting off the pred but aim for optimum quality of life. I'm a lot younger than you but I won't compromise. QOL at present is more important for various reasons.

[tytto in reply to PMRpro]

Agreed!! And I do think that my physicians believes the same -- but it seems like the "majority" of medical physicians, or a group, continue to suggest that prednisone can be a problem for long term use. Thank you for the encouragement for QOL for whatever years may remain.....

[PMRpro Ambassador in reply to tytto]

I'm lucky - all 4 of my doctors here are really hot n QOL. Very few arguments.