Tolerance for Prednisone

[chiwawaa]

I would like to encourage anyone that this might help. I was on Prednisone for several months for pretty severe PMR, and I have taken it in the past short term for severe sinus infections, pneumonia, etc. Prednisone makes me feel wonderful. No problems at all except a slight moon face at end of therapy. I feel better physically and emotionally when taking it. However, I know the toll it could be taking on my bones, etc. That being said, as soon as I stopped the Prednisone, all my symptoms came back and I have been suffering for about 4 or 5 years now daily and at night. Anyone who has been in remission should consider themselves very fortunate because that never happened to me. So, what I am saying is that Prednisone does not always cause ill effects while taking.

[SheffieldJane]

Thank you that is helpful. I have forgotten what wonderful feels like. I know you are aware of the other dangers so I won't harp on. Could this be why doctors are so keen to get us off it? They think we like it. I think you are just a lucky bunny!

[PMRpro Ambassador]

It certainly doesn't cause any problems for me - and my bone density hadn't changed significantly in over 7 years on PMR dose levels. On the other hand - it doesn't make me feel wonderful either!!!! Though it has given me my life back - the 5 years of PMR without pred cannot be compared with the last 8 years WITH pred!!!!

A new study has shown that pred at PMR-doses is not half as bad as doctors try to tell us. Except or cataracts that is!

practicalpainmanagement.com...

[chiwawaa in reply to PMRpro]

Are you saying you have been on Pred for 8 years? It makes me feel so good, that some days I am tempted to get back on it just to get some pain relief, but I am apprehensive about the long range side effects. Thanks

[PMRpro Ambassador in reply to chiwawaa]

I have. Five years of unmanaged PMR nearly finished me. I have no desire to go back there at all.

It isn't as simple as pred is bad, no pred is good. Unmanaged inflammation due to PMR puts you at risk of other things, peripheral vascular disease being one. That puts you at risk on the longer term of developing severe ischaemia in the legs, making walking difficult and possibly even requiring amputation. Long term low level inflammation in the body increases the risk of developing certain cancers. I had a long and detailed discussion about this with one of the top cancer experts in Germany - he advocates even longterm pred to reduce that risk.

And in the meantime you are in pain - I needn't discuss that with you. It leads to depression, disability and all that goes with that. You might possibly avoid pred-related damage and so potentially live a bit longer in that respect. But you are at risk of other things. And personally - I'm not sure I want to live longer when every day is torture and you are dependent on others. Before pred I could barely toilet myself. I crawled up stairs on hands and knees and was housebound if I couldn't drive somewhere.

And this suggests the side effects aren't anywhere near as bad as painted. Eric Matteson is a top PMR rheumy at the Mayo clinic who is greatly concerned that fear of pred is leading to patients being left in pain:

practicalpainmanagement.com...

He is, I believe, writing an article about this for NE of England support group newsletter.

[chiwawaa in reply to PMRpro]

Wow, Thank you for taking the time. I didn't know anyone cared enough to even do research on PMR. I have read so much, and learned so little.

Are you permitted to tell me your maintenance dose on this site? Not wanting to copy cat, I just feel more encouraged to try Prednisone again without being so fearful.

Feeling very encouraged.

[Chrob in reply to chiwawaa]

I’m on six at the moment , would stay on that for the rest of my life if that’s what it takes . I had absolutely no quality of life without prednisolone.

[PMRpro Ambassador in reply to chiwawaa]

I had got down to 4mg for some time about 2+ years ago and then had a flare in the following January which sent me back to 15mg. I have reduced back to 5mg since then, in about 16 months, but have had a bit of a stressful time over the summer (OH has prostate cancer and had radiotherapy for 8 weeks) so have gone back to 8mg which is the level the local specialist is perfectly happy about and where I feel better. I will try lower again - but if I need this, that's what I need to live well.

[chiwawaa in reply to PMRpro]

Thank you. You have helped me so much with all of your info. More than I have ever been able to find out on my own. Hope all is well in the battle with the cancer

[PMRpro Ambassador in reply to chiwawaa]

Thank you - as far as we know. Tell you in a couple of years! It was very early, watchful waiting was also an option but it didn't appeal! Rather get it done and over with.

[Sandy1947 in reply to chiwawaa]

Why suffer?

[jwb43]

I'm glad there are some people out there that are able to take it and get good results. But it's absolutely horrible for me. Just to tell you how bad it is I would rather have the PMR PAIN than take the prednisone. It's possible that could change but for the past five years I've suffered through the pain because prednisones makes me feel so terrible I can't even explain it. You are very fortunate to be able to take it and get relief.

[Hindags in reply to jwb43]

How horrible for you. What kind of problems, symptoms do you get when you take Prednisone? What was tried to help you moderate those problems.

Has any physician spoken to you about Actemra? If nothing else has worked perhaps it might be something to consider, to help you.

[jwb43]

The list of side effects or to numerous to even mention. But the worst of them being bad heart palpitations. Along with many others the prednisones and caused. I've ask about Other medications to offset the side effects and they have no suggestions. I tried methotrexate right and it did not help. The Actemera is also somewhat dangerous so they're reluctant to give it to me

[Hindags in reply to jwb43]

Quite a few people here have tried Actemra. You can search on the forum. Their experience might be informative for you. I have not tried it. Not "qualified" at this point. But I probably would be tempted were I in your difficult situation. Such hard choices. ,