NRAS
23,139 members26,914 posts

I'm new here RA sufferer

I have RA in both wrists. Pain is unbearable at times. Currently on Methotrexate 12.5mg.Hydrox and 5mg Prednisilone. Not working so rheumy suggest biological

Enbrel. Makes awful reading with possible side effects inc cancer! and keeping vials

chilled while travelling is daunting. Any comments of suggestions for an alternative

12 Replies
oldestnewest

You are only on a small dose of mtx and speak to your rheumy about increasing the mtx. Mtx is also a drug used in cancer as well so it will help you. Don't despair things will get brighter when they get your drugs sorted out darling.xxxxx

6 likes
Reply

A quick reply cos I’m off out - just wanted to say welcome and hope you get things sorted for you. I’m on 20mg of MTX so, as Silvy says, upping this might help - alas all immunosuppressants are nasty beasts by design, hey better than having my Joints merrily chomped away by my own system!!

All the best

Ali

6 likes
Reply

Hello and welcome to the club. I have lived with RA for eight years now and some of the important things I have learned are: be patient with yourself - don't expect too much too soon, do not worry about possible side effects until they appear, inform yourself from reliable sources (never Dr. Google alone), never give in, self manage and do everything you can to help yourself, be in control - don't let RA dictate your life. For the last four years or so I have been in remission and I am no exception, there are thousands. I don't know how long you have lived with RA, but I think you may be at an early stage. Have you ever looked at the NRAS website? There is a wealth of information there. They have an excellent help desk if you need to speak to somebody who completely understands where you are coming from. They do workshops on self management in some areas.

Sorry about sounding like a lecturer, it's not meant to sound like that. My message is very simple: don't give up hope, because you can and will get through this and live well with RA. All the very best.

13 likes
Reply

I too had really painful wrists - was lucky to see a different dr who said my readings were bad enough to put me on Enbrel - from the first week the pains disappeared and 18months later - I am still pain free - it is a wonder drug for me!

3 likes
Reply

I have been in remission for more than 6 years. On Enbrel (now Benepali cheaper copy) and mtx. Only look at reliable info NRAS and arthritis research uk. Getting onto Enbrel worked wonders for me. Now gradually reducing mtx injection dosage. Original damage before I was in control cannot be reversed. My wrists and hands are damaged. As far as I can see everything we do or don't do causes cancer! If you have the chance to try a biologic go for it. Many people don't get the chance.

4 likes
Reply

That is reassuring. I have had "arthritis" for a few years,seronegative and Rheumy said I was an odd ball as all tests for RA are negative.Anyway long story short. My

12.5 MTX and 200mg HYDROx and 5mg pred are not doing anything. I refused Enbrel 2 months ago but on seeing my Rheumy yesterday I have succumbed to it The NRAS were instrumental in helping me make that decision.So in about 5 weeks I start. Approval needed at £7,500 year to the NHS. I have everything X

in hope that this works.Fed up with useless wrists and hands....only part of me

affected. Thanks to you all out there, its great hear from you all. Comforting you

are not alone.

LadyJan x

Reply

I'd also have to say that 12.5mg MTX is at the lower dose end.

I am on 17.5mg MTX + HCQ + currently 5.5mg Pred (tapering).

I had a flare a couple of years ago when I was on Azathioprine. My right wrist was very painful and then blew up. 2 steroid jabs in the hand (neither were painful) and a move to MTX and I have most of my life back.

I was told by my Rheumatologist that the typical dose of MTX is 15mg - 15mg just about did it for me but I still had a bit of stiffness in the morning. When I moved to 17.5mg my gut was not happy so I moved to jabs once a week.

Good luck

Joy

1 like
Reply

Hi LadyJan,

Just a welcome, have family arriving soon. See them twice a year, so am very happy.

I found that changing what I ate maximised my chances of tolerating medicine for RA, and got it to a ‘remission’ point.

Because of cancer risks, I maximise anti-inflammatory foods in my daily eating, avoiding sugar (most of the time!), and I added healthy alternatives to NSAIDs eg turmeric curcumin taken with boswellia act just like celocoxib but without toxins and no need for omeprazole to protect the stomach.

Got to go but stay positive!

Angela

:-)

1 like
Reply

To all that replied,thanks you. It's sort of comforting to have people out there who understand what RA means.I have had it for at least 6 years, starting with polymyalgia but now it is interfering with life...my love of gardening, decorating etc. I pay dearly. Will put

up my MTX as not seeing rheumy for a while, and try some alternative anti inflammatories. My CRP constantly 100/120. Only had 1 reply on Enbrel...anyone else. I am concerned

about it. Thanks LadyJanx

2 likes
Reply

If you have severe pain still, please do not quit MTX.

I take MTX, hydroxychloroquine and alternative anti inflammatories.

And during a recent flare I also had intramuscular corticosteroid injection and increase in MTX.

To quit MTX without approval could be disastrous.

Take care of yourself,

Angela

:-)

1 like
Reply

Hi LadyJan and welcome to the forum. As with others I see you are on a low-ish dose of MTX. Is that because you have had issues with it? To be honest with you everything comes with risks. I reckon if I read all the patient info I'd never swallow another med, including paracetamol. I have to trust and be guided by, my rheumy doctor as she is cleverer and better informed than me. If offered Enbrel I'd probably snatch it from her and say thank you. There have been many reports on here that the results have been impressively fast and effective. Perhaps those people who take it have been far too busy getting on with their lives to post here. I wish you all the very best

Jan

Reply

Please don't despair!! I am also relatively new to RA and went through an intense grieving period. Every drug is scary as hell... And I've been through many ups and downs trying to figure out what works for me and what side effects I am willing to put up with....

My suggestion is to not worry about side effects until you start to notice them, then go from there... Talk to your doc and see your other options.

I was crippled at one point, literally. I couldn't sit up in bed, I couldn't hold let alone open a water bottle to take my pain killers, couldn't even use the restroom bc I couldn't undress. It was insane.

And what gave me my life back was Prednisone (5 mg is low...I think if you are allowed to up it to at least 7.5 or 10 mg, it may make a significant difference and at least give you some relief). It's not doing anything for the disease...I am fully aware... But it has kept me mobile for the most part, especially as I try this and that for weeks on end. Still experimenting with meds..and very conservatively tapering the Prednisone. I truly wish you the best. But I know how you're feeling...it's so overwhelming. I constantly feel lost and then I need to remind myself, one day at a time.

4 likes
Reply

You may also like...