I have found this site invaluable and until now haven't had the confidence to post anything. But I have reached an all time low over the past week and really need your help. I have completed my bio today which gives background info - it is a long story though!
I have copied some of the info into this question so I hope it makes sense. PMR has taken over my life. I don't recognise myself anymore, either physically, emotionally or mentally. I have an eating disorder which makes this hideous weight gain even tougher. I can't exercise - although I am thinking of buying a treadmill to try ten minute sessions. I can't cut carbs as diets lead to obsession for me.
I saw a rheumatologist (private) in August 2022. He said, if it wasn't for my age, (50) he would suggest I had PMR. my CRP was slightly raised at 12 but all other tests normal. I was started at 15mg prednisolone for two weeks, then 12.5 two weeks, followed by 10mg, then to see him again.
I was a changed woman on pred! At the gym every day and cleaning, washing, socialising. Then I crashed and realised pred was not the magic bullet I hoped it would be. I saw the consultant, who warned me that pred was a habitual drug and I needed to be off it asap for my health. He said PMR would be gone in a year and I needed to taper my dose.
That was September 2022. Since then I have got down to 5mg (as of March 2023). I am desperate to get off pred as I have an eating disorder and cannot stand this weight gain. I have had to give up work due to pred side effects (and PMR), I can't do the low carb diet as I become obsessive and risk a mental health crisis.
On 5mg I thought I was ok; pain and stiffness first thing but went off by afternoon. I so want to be slim and athletic again but I fear I have tapered too fast. Mon 13th March I completed an hour weight lifting session at home. Within an hour I had severe diarrhoea which lasted three days. By the Thursday I was weak, hot, cold, dizzy, nauseous, headache, crying, distressed. I phoned the surgery and they said I could have an appointment. Five hours later a GP phoned me and told me to go to A&E as they could do blood tests. I got there and it was a seven hour wait so I came home, weak and unable to function. I took a 5mg tablet and felt a little better. Since then I have taken 5mg at 8am then 5mg at 1pm. I feel better than I was but not 100 per cent. Had to go food shopping yesterday and was very weak. Slept six hours when I got home. I really want to taper but not sure how to proceed given my situation. Should I stay at 5mg twice daily, go back to 5mg daily or something in between?
Thanks in advance.
You will get responses from the more “expert” among us, but I just wanted to say, hang in there!
You are having a horrible time, not helped by the really unhelpful misinformation you have had from the consultant. PMR lasts longer than he said and Pred. Is not the poison he made it out to be! It is all we have and we can and do make the best of it. There is no point being on too low a dose. Our body needs what it needs.
It may help you to know, I was diagnosed at 52yrs. ( you are not necessarily too young at 50), 11 years ago. I have never got below a dose of 8.5 mgs pred. And I am still here! I still have a life, albeit a different one. I have no choice but to accept it!
In terms of putting on weight , diet etc. I have had life long issues with food and weight and, speaking as a retired counsellor too, can I suggest that some kind of mental health support at this time could be invaluable? You deserve it. This is a difficult condition with difficult treatment and we all need support to get through it.
Please don’t despair- there are many of us on this forum and we are here to inform and support all the way. You need proper medical care, but using this forum is also a vital part of your journey with PMR.
Thanks so much for your reply. It means a lot to have support from people who have been there and understand.
Suzy you are making me feel better. I tapered to 8.5 a few weeks ago and hit a huge wall. Had to go back up to 10 and now at 9. Decided to stay at 9 for a while. Just when you think you have things in hand it gets handed right back to you.