Anyone not taking prednisone

[ptm2018]

Hi is anyone not taking prednisone? If not how are you managing PMR? Thank you. Thank

[Hidden]

We do from time to time have people saying they are not going to take Pred & manage with an holistic approach or diet.......

PMRPro May have more answers for you on this subject.

Are you still on Pred?

[PMRpro Ambassador]

I did it for 5 years - not because of choice, i wasn't diagnosed. It was hell on earth, I was in constant pain, unable to do many things. If I couldn't drive somewhere and park there, I couldn't go and I did often turn round and go home. I lost contact with friends as I couldn't do things with them. I could only go up stairs by crawling on hands and knees or hauling myself up the handrail - which wasn't good because of the state of my shoulders. I could barely get out of bed, dressing was difficult and I could hardly toilet myself. I got locked in a bathroom because I couldn't turn the knob door handle to get out.

I was freelance working from home, I couldn't have worked in a "proper" job, I couldn't have commuted. I managed to get into a swimsuit every morning Mon-Fri , crawled to the car and went to the gym where I was able to shower and did an aquafit class in a warm pool I could walk down steps into. Otherwise I would have needed a hoist to get me out of the water at the end. If the heating was playing up and the water was even slightly cooler than usual I had to say no. I couldn't do everything in the class but at the end I could move better - still hurt though. The steam room was pure joy. Some times after the class and steam room I could manage a heavily adapted Pilates class or Iyengha yoga.

But NOTHING touched the pain and when I was unable to drive for another reason (incorrect diagnosis) it all went even more pearshaped. I couldn't go out because I couldn't get to the bus and couldn't have got on even if I could. I had a rather basic choice for my work: upstairs and have a toilet or downstairs and have food. I became depressed.

I've had PMR a long time, I've been on pred a long time. NOTHING would persuade me to go without. Those memories are burned into my brain - it is enough to class as medical PTSD. And I'm not joking I assure you.

If you are interested I will write about why no pred is not necessarily good - but if you are set against pred, just bear in mind that the inflammation of PMR is bad and unmanaged PMR is 7 times more likely to progress to GCA and then your choice may be much higher doses of pred or go irreversibly blind.

[Joydeck in reply to PMRpro]

Your post reminds me how grim was life in the weeks before pred. Nothing, of course, alongside your five terrible years. I was lucky an osteopath floated PMR, as I was leaving, after the second visit.

[ptm2018 in reply to Joydeck]

And did you take prednisone?

[Joydeck in reply to ptm2018]

Not in the month before the osteopath's afterthought. If you really do have PMR, pred is a must unless you're a masochist.

[Noosat in reply to PMRpro]

I do so feel for you. I am retired so the "working" was not a problem for me. However, for a long time, seems like years, but was probably just one, I thought my body was just getting old and painful, I had to have a helpful arm or a post to hold onto to step up from the road onto a small sidewalk, going up even one stair without help was impossible. It was the absolute not sleeping at all because of the dreadful pain that forced my to the doctor's office and to prednisone. I am tapering very well, so far. It is a "must" as I have elevated eye pressure and heart problem.

[lesley2015]

Hi,

As with PMRpro, undiagnosed for about 4 years, GP's (various) put down to getting older (just over 50), menopause etc., bloods showed inflammation - RA queried but sent off by my old GP to buy some 'herbs' and Naproxen which didn't help.

Left without Preds, my hobbies became non-existent, just walking up stairs or hills became impossible, socialising - none, fun and humour gone, my life had completely disappeared. I tried changing my job to make me 'feel better', which was stressful and cutting a long story short, then developed GCA .... life was pretty unbearable - eventually was seen by a locum doctor who was suspicious and referred me to a Rheumy, 24 hours on preds and life began again.

NONE of the above were my errors, just ignorance and I have no regrets taking the preds.

However, my errors were:

1) in trying to continue for a year on high dose of steroids, with insomnia and working at an extremely stressful job.

2) not realising the implication of carbs when on preds, I put on over 2 stone, I have lost 3 now so all good.

3) in a flare now, so I guess still not listening to my body before increasing preds.

4) In assuming I would be the one to beat this within 2 years. 4 years on, down to 2 mgs and now back to 40mgs again .... but I am informed now and understand the process easier and accept Preds to be part of my life and health at the moment.

Anyway, whatever your decision I wish you well.

[Joydeck]

Pred is not so bad.

In 18 months on pred I have, if anything, lost weight on my high complex-carbohydrate regime. My only pred symptom is bleeding under the skin from any bruise or graze. I feel fine.

[artfingers]

My sister-in-law just told me my rheumatologist should be put in jail for allowing me to stay on steroids. She could not believe that I could not lose any weight on the keto diet AND that I had to take steroids. I got so miffed with our conversation I wished she could get it and then tell me how she coped without steroids (and I am only on 5 mg)! She claimed I should be healed by now of all inflammation on the keto diet, and all kinds of other annoying statements I had to cut off the conversation. It made me very angry that she, like so many others, think she has all the answers. I had to bite my tongue because she was NOT listening to what I was explaining.

[Hidden in reply to artfingers]

Oh, there’s nothing like an ‘expert’ that actually has no understanding of our condition, it’s best not to rise to the bait really.......

But maybe one day, she’ll reflect on her opinions, meanwhile you have us guys & we fully understand.

Take Care

Kind Regards

MrsN

[Hidden in reply to artfingers]

I find it extremely difficult to deal with things like that so well done for biting your tongue. I have come across a lot of food, fat and fitness "facists" who are intolerant of people they imply (or by inference on my part) that I am somehow weak for not being able to achieve THEIR goals. Its a form of social control and is very oppressive to me. They might think they are helping but it feels critical. I find t hard to comprehend that someone would be in the pain I felt/feel and not take the only thing available for it that is proven to help. Again it's partially about being "called" weak. But no one else knows your path in life or your relationship with your body. Invisible illnesses aren't by their nature visible. That said at least everyone in my life has believed in PMR as bloods show it in up to.80% of cases. Trying to get them to conceive of fibromyalgia has been a nightmare.

Oops my apologies. I got on a tangy soapbox!! 💪🤑

[damasio in reply to artfingers]

Artfingers - your sister in law's comments have got me so irritated that I just had to respond! She probably means well - but doesn't understand enough about your pmr - and we all know that each of us can have different responses despite being on very similar treatment protocols - which is why we consult with each other and share our woes! When I am sounding off with family I really don't want the advice of those who don't know (and thank goodness that they don't know) - I just want them to hear me and shut up!

[artfingers in reply to damasio]

Interestingly, she thinks eating "right" (keto low carb) can actually cure auto-immune diseases and that it is our fault we aren't cured yet. I was so angry with her I had to disagree, kindly, but she is one who is always right, on diet, on supplements, on vitamins (no need for them) even on how to boil eggs! But when she implied I was still "sick" because of my own poor diet choices I ended the conversation. She hasn't a clue. Yes, thank the Lord for this online community. It has really helped me!

[HeronNS]

I had PMR for a while before diagnosis, might have been over a year. The last few months were hell. In the interim I'd done everything I could think of, short of taking the Celebrex my ignorant doctor prescribed: diet, physio (which made me feel worse usually physio had been very effective for me), attempting new types of exercise because I perceived the pain as like that you get after unaccustomed exercise and I thought I wasn't fit enough. Eventually I could hardly get out of bed, clamber out of a bathtub, get up from the floor after doing my physio and yoga, which themselves were getting increasingly difficult to perform. After my first dose of pred prescribed by a new more with it doctor, I began to feel better within a few hours and within three days found all my aches and pains were gone, even that from long pre-existing osteoarthritis. When I'd looked up my symptoms and discovered PMR I'd dismissed it because I didn't believe I could possibly have anything so serious it would need steroids to treat it. I had always, I thought, lived a healthy life. By the time I was actually diagnosed I left the doctor's office, went straight to the pharmacy and took my first dose as soon as I got home. I couldn't wait!

[Rimmy]

As much as we are concerned (of course) about possible side effects of Pred - it is virtually a 'no-brainer' in terms of what happens if we don't take it. Not only would we be doomed to years of pain, stiffness, and the distinct possibility of GCA and even sight-loss but the quality of our lives would generally be pretty bad. I'm not saying the occasional person has not managed to circumvent taking Pred and managed somehow - but the majority of us will do much better with than without it - in my humble (and most 'scientific') opinion.