Naive or what??

If it has been suggested by your doctor that you take steroids, please do so.  If inflammation turns to sepcis it is life threatening - you could also lose limbs or worse.

I have been on steroids for PMR for five years and I am not dead yet!  Thought I'd had my lot over the last three weeks though.

I also have Polyarthritis so pain is with me every day.

Like Constance I've been on pred for years, over 7 years in my case. In the past I have had side effects when I was on a different steroid to the one I'm on now - but overall now I have no apparent side effects, not diabetic, not osteoporitic, BP good on medication but that is nothing to do with the pred.

With pred life is good - without it???? I don't like to think to closely about that!

Sorry...didn't mean to suggest that I wouldn't take steroids or others shouldn't if they need to. We must all do what keeps us alive and functioning! I found something else which worked and didn't need to take them. I have had short bursts when I have needed to. But oddly for me, they didn't help a great deal. I got better results with other meds. We all seem to react differently to different things. But I am still scared by their side effects. x

Unfortunately we don't have the choice - nothing else works for PMR, just pred. But what I wanted to say is that pred isn't half as bad as some people make out - and scare other patients with their terror stories. Not pointed at you directly.

It's ok didn't take it personally. It is such a shame. We have a big range of treatments available to us. Mind you most have side effects. 🙄

There are a few DMARDs that some doctors will push on patients in addition to pred (not instead of). There is no proof they do anything positive for the vast majority of us - except have side effects which potentially are far worse than pred and they usually limit drinking alcohol! Not that we're all sozzlers but when you have lost your former lifestyle to PMR it is hard losing even more to something that rarely works!

Hey Margaret, I'm interested in your alternative to pred. Could you please PM me regarding the alternative?

I'm unable to take the pred!!! After 1 month on 5mg I had a boat load of s/e's! I would appreciate it greatly.

Take care,

Tinaj

It depends what you have Tinaj - for PMR there is no alternative drug. Margaret has a completely different disease, Behcets, for which there are alternatives for long term use.

Yes this is true different illness for which I used interferon and mycophenolate but for Behcets x

They found several growths, benign thank goodness.  I lost a lot of blood and had to have iron infusions - I was daily on a drip for one thing or another.

Another chapter in my life.😏

Write it up while you still remember it clearly.  When I was quite young, late 20s, I had an episode where I became severely anemic and had to have blood transfusions.  Fortunately before AIDS or I'd likely have ended my life with a different chapter.  In those days they put you in hospital and investigated everything as an in patient.  I kept a diary, and also wrote a couple of letters to a close friend.  Recently, and coincidentally, I found the diary and my friend, who is in decluttering and downsizing mode. sent me a bundle of my letters she'd saved all these years.  Although I remembered the hospital stay fairly well, I thought, it turned out I'd forgotten a great deal and I was quite fascinated to read my reaction at the time.  In fact the letter was so good I read it to my writers' group and they were really interested in the experience I described.

Btw there was never any diagnosis but I think I must have had a gastric bleed as I had another a few years ago, initially the same symptoms of weakness and physical collapse but recovered really fast and didn't even bother seeing a doctor.  When I did mention it to him later he said a blood vessel had probably burst in my stomach.  I feel I've flirted with death a couple of times....