Flare ups

[FieryChef]

Hello long time lurker first time posting.

Bit of background: diagnosed in December 2018, didn’t get in with methotrexate (it kept knocking by liver off), on sulfasalazine and hydroxychloroquine plus the anti TNF.

Coming up to my 1 year, regarding flare ups; when/if they go down does the pain cease with it or am I always going to have pain?

Thanks

[Hidden]

Everyone is different. I can have pain for months then it disappears. If you have joint erosion then you would have permanent pain .Thats my experience

Welcome we are a great bunch.

[FieryChef in reply to Hidden]

Thank you.

[wishbone in reply to Hidden]

Unfortunately, I can confirm what you say about having permanent pain with joint erosion!

[charisma]

Hi FieryChef, you long time lurker, lol 😃

Welcome to the community for folks with RA.

We all have unique experiences with the disease and with the DMARDs and biologics.

Briefly, with Leflunomide last year, I was almost pain free for three blessed months. This did not mean normal energy though, plus the erosions to bones and the joint weakness (especially in wrists) were still there.

But near normal life is a possibility. It is early days yet for you.

Wishing you all the best for getting to that desirable state! 🙂

[FieryChef in reply to charisma]

Thank you for your reply. I don’t feel the biologic is working as some say they feel a benefit after the infusion, I just feel shattered.

But you say there is hope, I will endure.

Thank you

[charisma in reply to FieryChef]

I have to start Rituximab infusions ASAP but have been warned it will be months before the benefit kicks in.

That is normal, as with DMARDs.

But your concerns might be best addressed by getting further information or calling the NRAS helpline: nras.org.uk/data/files/Publ...

Helpline: nras.org.uk/helpline

Or contact your Rheumatology nurse via the advice line, if there’s one at your local Rheumatology Dept. Mine is very helpful. 🙂

[FieryChef in reply to charisma]

Luckily or unlucky I’m not sure, but I work in a hospital so they are nearby. I just don’t know how to word it when I get to see them, will look into the helpline maybe. Thank you

[charisma in reply to FieryChef]

Being exhausted is a symptom of uncontrolled RA too... fatigue is one of the aspects of this disease and its treatment that is greatly ignored or not taken into account.

There are also guidelines for employers and employees for those with disability. RA is classed, in terms of ability to work, as a ‘life limiting’ disease. That means it restricts us.

It might be worth finding out about those guidelines if you can continue to work. Any hospital employment should have someone who knows this in supervisory authority.

Disability law etc here: gov.uk/government/publicati...

[Hidden in reply to charisma]

Fatigue!!!!!!! The word doesn’t cover it.its totally disabling and isolating.

[FieryChef]

What sort of pain killers, if any have you tried and find that works?

[oldtimer]

If you get joint damage then pain is likely. The drugs are to try to avoid that happening. The pain from the inflammatory process should go with the treatment, if it's not then the treatment may not be adequate.

So the answer has to be, it depends on the above. Some of us here have continuing pain, others (especially those who don't post!) are coping well on treatment.

[wishbone in reply to oldtimer]

oldtimer, do you know if immune suppressing meds help much with pain caused by joint damage, or are pain killers such as tramadol more effective?

[oldtimer]

If the pain is due to inflammation then immune suppressants/steroids, even non steroidal anti-inflammatory drugs (like naproxen, etc) help. If not then you might need to climb the ladder of pain relief medication - from codeine to tramadol/ other opiod derivatives. Sometimes, if you have had pain for some time, then things that act on the nerve impulses like amitriptyline can help to close off the pain gate, so that lesser strength drugs are more effective. You should also consider other pain relieving techniques like distraction.

If you are having a lot of problems with pain control, then seeing a pain control specialist is a good idea.

[FieryChef in reply to oldtimer]

Steroids helped my knee as the inflammation was bad, luckily it hasn’t come back bad.

On co-codamol and naproxen, had a bad night last night. Have some cinnamon tiger balm to try tonight

Thanks for your messages all this helps me.

[Notabenenot]

Unfortunately, RA can often be painful, but I find that the drugs really do help. Mine is fairly well controlled now, with few flareups. Has your Rheumy suggested Methotrexate injections, as they seem to affect the liver less. The Metoject pens are easy to use and pretty painless. Otherwise, an anti inflammatory, together with the Hydroxychloroquine and Salazopyrin certainly helped me. I think that if you have joint damage you will have pain, but believe me, it would be a lot worse without the pills, and the damage would probably progress much faster. Do ask about the injections if you haven't tried them already, as Metho made a huge difference to me.