New member

[Gloriana]

Hi, I'm new here and hoping to draw on your experiences and lead the best life I can. I was diagnosed with fibromyalgia in 2012 and rheumatoid arthritis two days ago and I have started steroids and methotrexate. I don't have any specific questions atm I'm still getting my head around it and I work for the NHS as an Administrator two and a half days a week and it is taking everything I've got to go to work I only started six weeks ago and I really want to work. Thanks for reading Glorana

[jojoishere]

Hi there, Gloriana nice to meet you, I'm new here to, so can't give you much advice at moment, I've only just been diagnosed a few days ago also on prednisolone, and I start methotrexate in a week or so, just wanted to welcome you and say hi, everybody on here have some great information, and are so lovely 😊

[jojoishere in reply to jojoishere]

Sorry forgot to mention, I also have fibromyalga, so can advice on this condition 😊

[Gloriana in reply to jojoishere]

Thank you so much nice to meet you 😀

[FamilyHistorian]

Hi Glorina

I have had RA for 40 years, both hips were replaced and they are nearly 30 years old. My right shoulder has also been replaced with a reverse joint. Various joints (toes & wrists have either been fused or have fused naturally) and I have been on a range of drugs including pred & MTX. In the case of the MTX I have been taking that for 30 years and 9 tabs (22.5). That is until December ‘19 when I finished up with double pneumonia, sepsis and my aortic valve being replaced and being in a comma for far to long in ICU. So my MTX was stopped and just as I was restarting they discovered I had pulmonary fibrosis which could have been caused my stay in ICU or the MTX any way it was decided that it wasn’t the MTX so I am back on 15 mg with lots of blood tests at the mo in fact one tomorrow. For me MTX is good but it buggers your immune system as do a number the RA drugs.

I’ve been on pred ever since I was diagnosed. Initially I as quite high doses and over time they have been increased and decreased. Always good to have a big single dose when you have a sudden flair up. I always know when it’s going to happen! 2 years ago I was working to bring the dose down it was 5mg but whilst in icu it was put up to 10. It takes a longtime to reduce you can’t just stop. So this month I am on 4 and next I will be alternating between 4 and 3.5. Also new guidance was brought out about pred. You should have a steroid emergency card see for more info endocrinology.org/adrenal-c...

Basically under curtain circumstances need a paramedic to give you a hydrocortisone jab or iv as it be a case of adrenal insufficiency. Also if you take it for any length of time you need to get your eyes tested as there is a risk of cataracts

All good news. If you are on hydroxychoroquine you get free eye sight tests.

I don’t want to be scary but this is what happened to me. Things have changed so much since when I started.

I was told that either it would go as quickly as it came or I would be in a wheel chair for life. I was neither of them. Whilst RA dominates my life it doesn’t rule it and I have fought it the whole time otherwise I would have departed this planet many years ago.

I did manage my heart problems so well. I couldn’t understand why after all the pain I went from with RA I should have to put up with heart problems. I had a small skin cancer and I’m just not bothered. The PF and sleep apnoea are just an incumbrance I have to put up with.

PS I was in my early 30’s when I went down with RA and I am now 73

[Gloriana in reply to FamilyHistorian]

Thanks for the reply and insight into RA. I'm sorry you have been adversely affected by the drugs. I have always been adverse to taking meds but needs must. My motto is don't give up, giving up. This seems to apply to you also, so well done! I'm tolerating the meds reasonably well and liking the added benefit of having more energy with the steroids, I didn't realise just how exhausted I was. All the best Gloriana