Frustrated: Hi All I have suffered with RA for 7 yrs... - NRAS

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Frustrated

dfur7785
dfur7785
6 Replies

Hi All

I have suffered with RA for 7 yrs now and have tried numerous medications, 3 yrs ago I was put on enbryl which worked for me great still had the odd flare but I could cope with it then around June this year it stopped working so I went on to baracitinib tablets which have not worked, visited consultant today as my left knee has been so painful and very swollen they decided to draw fluid from it and inject steroid to relieve the swelling but were unable to get any fluid out as they said my muscles had tightened around the joint too much, so was sent home with 3 leaflets to decide what I would like to try next, Adalimumab, Abatacept or Rituximab, I’m so frustrated with it all, I’m currently writing this at 2am as I cannot sleep with the pain and haven’t had a good nights sleep for around 6 weeks now. My knee xray shows general wear and tear whatever that means? My pain killers do nothing except constipate me as it’s cocodamol ( allergic to ibuprofen ) I just feel so depressed and useless at the moment, sorry for the long post but wondered if anyone can give me any advice on which of these drugs to go for.

Thanks in advance

Dee

6 Replies
oldestnewest
Cynthialcj

Hi ,sorry your frustrated ,im on my 11 med similar problems. I had bad reactions or they stopped working . I like xlzjanz the best for pain..its a,awful desease ,i have to take a muscle relaxor, opiates didnt work for me ,rhumy pain they dont touch ..we need the dnards or biologics..i research alot..im currently on orencia ,very tired after injection..im.pushing for iv med. I seem to have issues with pill forms n fat cell meds. Hope you feel better. This pain is terriblle

Reply
KittyJ

It’s very frustrating when meds stop working after so long. I’m sorry you are suffering at the moment. Have you spoken to your rheumy about better pain relief as there is more out there than just cocodamol and ibuprofen? I hope that’s not all you are taking at the moment. We can’t tell you what you should try next but if you put those meds into the search box you will come up with posts on them which may help you decide. Also if you haven’t already looked at it NRAS do a publication on meds that you can download

nras.org.uk/publications/me...

I hope your next med works as well and for as long as your last. 🤗

1 like
Reply
oldtimer

That's an impossible question for anyone else to answer!

I've found it helps when deciding about treatments to do a table - the things for (the 'pros' the treatment in one column, the things against ('cons') in the next, then go through them and rate them for importance for ME. Then you can easily see what's important for you (for example, an effect to increase blood pressure might be an important factor for some people, but not others, some people might find feeling sick unacceptable, others can cope easily).

If you need help with the advantages and disadvantages, look at the treatment pages on NRAS.

2 likes
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nomoreheels

I can't help with your med choices Dee but "general wear & tear" is osteoarthritis (OA), sometimes also called degenerative joint disease. It might be helpful to have a talk with your GP about either alternate pain relief or possibly prescribing Movicol to help ease things along. My GP insisted in prescribing me this when I had a med review though co-codamol & none of my other pain relief (primarily for OA) have never made me constipated. Losing sleep through pain isn't pleasant, we need good restorative sleep to cope with RD (&OA), the fatigue which comes with both if you have raging inflammation is bad enough so I feel for you.

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Coriander18

Dee I really sympathise with you. I do think the NRAS website is really helpful on helping to weigh up the choices you've been given.

Sorry you feel so down, in pain... and constipated.

My GP is very good and I've been prescribed antidepressant, two forms of pain relief (one mild the other slow-release-Tramadol which I take only for a few days when really necessary so can go several months or years with packet), a bowel regulator and anti-reflux/duodenitis medication (all to counter side effects of meds).

Hope you make the right decision although sometimes I think RA is a lot of different diseases with the same symptoms as it seems different things work for different people so don't blame yourself if you pick the wrong drug.

Hope you have better nights soon.

Reply
dfur7785

Thank you all so much for your replies and support, the steroid jab has helped a lot with the swelling and I now have amatriplyn to help at night so felling a bit better as getting more sleep, going back to gp in 3 weeks for a review x

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