Confused

[lucy40]

Hi. Last November I was diagnosed by my GP with polymyalgia. I have had RA for 20 yrs. He put me on Prednisolone but the consultant seems dubious. However I felt so well on it up until now after tapering down to just 1mg. He said if I felt ill again to up the dose. I would like opinion on how long to take steroids as I know they can cause problems. I also take 10mg methotrexate. Also how do you differentiate between RA flare up and PMR.

[AgedCrone]

You have a good Consultant...if you can manage to get off Pred.....stay off.

You can read here the many side effects it has, & how very difficult it is to stop if you remain on it for a prolonged period.

[Mmrr]

I would trust the consultants opinion rather than the GP. Next time you see the consultant it might be useful to ask why s/he is dubious over the polymyalgia diagnosis.

[Hessie5]

Personally I am on Pred 5mg per day. I would not be to get out of bed without it. I tried to stop but the inflammation comes right back, despite eating well and doing the right things.

[lucy40 in reply to Hessie5]

Hi. Have you been on Prednisolone for long? I don't get any continuity with consultants at hospital. The rheumatology department is not good. Hardly ever see the same person twice. But having changed gp I now feel he is more able to treat me. Also I don't want to go on biologic drugs.

[Hessie5 in reply to lucy40]

I had to stop my last biologic in December. Due to start a new one within the next 10 days. So about 3 months, tapered down from 30 mg to now 5. I can feel the inflammation building up.

Although it is a wonder drug, I don't want to rely on it, hence why I am trying this new biologic. It does a great job at reducing inflammation - but long term it is not the answer.

Why are you reluctant to try a biologic? Pred has side effects too.

H

[lucy40 in reply to Hessie5]

Thanks for replying. I have an aversion to any drugs but from reading about bioligics it's the risk of infection. Also I'm awaiting result of echo on heart due to atrial flutter and was given bag full of drugs for that. Life's a barrel of laughs in old age 😆

[Hessie5 in reply to lucy40]

I totally understand why. Good luck with your results. If only we were taught in school more about disease and disease prevention and control I believe we would be better equipped. 😌

[medway-lady]

Steriods give a false sense of wellbeing and so bad in the long run. So many risks I'd go for any alternative really. I'm taking them for kidney failure and life isn't easy but they are being tapered off and that is awful so my advice would be do'nt dismiss biologics they do seem to be great for the majority who take them. Look up the information leaflet published by NRAS and ask your consultant more questions. Good luck.

[lucy40 in reply to medway-lady]

Thank you for your reply. It's so helpful to get opinions from fellow sufferers. Maybe one day a magic bullet will appear. Till then plod on. 😊

[NeonkittyUK]

Steroids got me moving when I came to a complete standstill and was bedbound 3 years ago. I was on 20mg daily for a week then 10 for a week then 5 for 2 weeks then I was tapered down and kept on a very small dose for 9 months. I was glad to come off them May 2016 after 20 months by which time my biologic had fully worked and I didn't need Prednisilone, but the downside was I gained two stones and still have one to lose and it's over 2 years since I stopped them. It's happening as I am able to exercise now more. I can also say that for the first time in my life I felt down which is a common side effect. I have never been a depressed person despite 22 years of RA prior to then but they certainly made me feel bad. However the alternative to not having them was not get out of bed it was so bad. I was recently given a short burst of 30mgs oral steroids over 5 days for a chest problem trying to open up the airways but that had no noticeable effects on me. Had to try it as I had a stinker of a chest infection with bad wheezing. I think shorter periods of oral steroids can help you very much and if you need them to get moving then it is a decent option, but long term some people can have a lot of side effects. Biologics .. I've been on three and Rituximab has got me moving very well and keeps all inflammation and fresh joint damage at bay. Yes, they do lower your immune and I have had a few chest infections but I try avoid crowds and obvious germs. I never had any colds or chest infections in the first three years of Rituxi. I feel and so do my docs that as I go more places the last 12/18 months due to good mobility, I come in contact with more people and get infections. I wouldn't let fear of infections put you off a biologic though. You may not be as immune compromised as some others are and miss out on the benefits of a really good med. The biologics nurse and rheumy can help you decide what is the best med for you and talk over any worries and you don't have to be on it if it causes you a lot of problems. I don't know too much about Polymyalgia sorry. I hope your atrial flutter subsides and you can concentrate on your joints and muscles. My OH had an atrial flutter issue last year and was scanned and monitored for a year. They called it lone atrial fibrillation and said it was the extreme pressure of work and stress. I would ask the consultant at the Echo results about the steroids in relation to the flutter also. (Many meds can temporarily alter the heart rate.) Good luck with everything. x

[lucy40 in reply to NeonkittyUK]

Thanks so much. I've received so much input and really appreciate it. At the moment joints ok it's the fatigue that's hard to deal with. Yesterday kept falling asleep and felt as if someone had stuck a straw in me and drained all the energy out. This morning I've spent in town and so much better. I don't think many people understand how devastating this disease is. Mention RA most think it's a few creaky joints. The media do a good job with cancer but I don't think I've ever seen RA given air time.

[NeonkittyUK in reply to lucy40]

I know how draining RA can be and yes it like someone sucked all your energy away. Hope you soon feel more energetic. It does go in spells and this time of year isn't easy in winter but spring is well on its way! x