Medication not working

[Lornap1]

I’ve had rheumatoid arthritis for nearly 20years. I’ve tried, methotrexate, Arava, adalimimab, entanercept, ruituxan, filgotinib, baracitinib and a few others that aren’t biologics. The problem is, they don’t work for me. Has anyone else had this issue and if so what are you taking now. I’m at my wits end as I’ve been on filgotinib over 4 months with no signs of any improvement. The only thing slightly helping is the prednisone I’m being prescribed for my scleritis

[Blackberrywine]

I can commiserate. Same problem! I'm not taking anything at the moment (apart from paracetamol). The side effects were horrendous. I just deal with pain and rest in-between tasks. Actually, pain isn't always bad, my biggest issue is exhaustion.

I do exercise daily otherwise I'm much worse.

[Hisue]

I've had severe seropositive RA for 11 years. Like you, I was prescribed so many drugs that didn't work. Finally got relief (2 years ago) on a JAK inhibitor (Rinvoq) with the help of a caring pharmacist who intervened with rheumatologist.

[Amnesiac3637]

Hi. I too can commiserate. Over 34 years of severe, refractory, sero-positive RA I’ve had practically every drug ever invented for this bloody disease and have a great list of failed medication on my rheumatology letters!

I thought I’d finally hit the jackpot with Baricitinib which was the best and kindest drug ( no side effects, worked within two days) I’ve ever had but after three years of relief of pain and fatigue I contracted Covid and it just switched off. I mourned it!!

Since then have been on Filgotinib which does work but is not as effective as Baricitinib as due to my age (71) I’m only on a half dose of 100 mgs daily. My consultant has no idea what to give me after this as there are now very few options -everything else has poisoned me or not worked 🥴. I still have significant swelling and pain in my hands and feet.

The only effective drug throughout has been Prednisolone which I was started on in 1989 and of course couldn’t get off easily and now can’t at all but I have been able to function throughout all the failures due to it. I only take Paracetamol and Ibuprofen for pain as I can’t tolerate anything stronger.

So, sorry, I have no answers and I feel for you and totally understand the frustration of nothing working, or not working after a promising start. One of these days somebody’ll come across a combination not yet tried, it’ll be a eureka moment and we can all skip about like Spring lambs but until then………

[AgedCrone]

I would give the Filogotinib longer..l have no proof…but from what I read here, the more drugs you try…if you give them up too soon…it does not seem to bode well. Some drugs take a lot longer than others to give relief,& of course it really does depend on one’s expectations.Being 100% pain free early on with a drug doesn’t usually happen.

Speak to your rheumy nurse & ask her advice if she honestly thinks giving this latest drug another couple of months will help. If that doesn't,t help at all …..it’s back to your rheumy…to maybe try a different combination,

Hope you have some success very soon.

[Bookworm55 in reply to AgedCrone]

Interested in what you say here about stopping meds too soon. I seem to be in a cycle atm where I start a new med and after a few months my rheumatologist decides that it’s not working well enough, takes me off it and starts me on another. Because results can’t usually be seen for up to 6 months I often wonder if this is the right thing to do. I’ve just had my first rituximab infusion (second next Monday) but I’m relying on prednisolone again and I can’t seem to reduce the dose of that without considerable pain.

[AgedCrone in reply to Bookworm55]

When I said giving up on a drug too soon I meant sometimes people do give up after weeks ….that would be quite understandable if they were having terrible side-effects, but some have given up because they are not 100% pain free in a few weeks.

But your rheumy has trained for years & if it is his considered opinion that a change will be beneficial…. Hopefully he knows what he’s doing..Also to be prescribed biologics I think you still have to try 2 or 3 DMards…. one being Methotrexate …& failed on them, before you can be prescribed a biologic drug.

RA treatment is not an exact science…… but if it’s of any comfort to you, it took me 16 years to be prescribed Rituximab and it was the best thing that could ever have happened. I have been on it for six years now, and I only need one infusion every 9 to 12 months.. I’m not 100% pain-free 100% of the time, but I am one hell of a lot better off than I was before I was on Rituximab.I think we individually have to decide if the drug regime we are prescribed is giving us an acceptable level of life…& if the answer is no, we have to go back to our Rheumatologist and have another conversation.

I really hope you are lucky & that Rituximab suits you.

[SteveSi]

I find that my joint pain is greatly reduced by going on a grain free diet. It took me 60 years to discover this as I have had RA since I was 5. I highly recommend anyone with an AI disease to look into the AIP diet protocol which tries to identify foods which your immune system may be sensitive too. With me it turned out to be all grains. I have not needed to take painkillers for 6 years now since retiring, but I am less active too.

[Doodlereggie]

Don’t give up on the filgotinib yet.I have been on it for over a year and it is a life changer so far.I too have had everything over the last 25 years.I have been able to get my steroids down to 3 mg and just 2 paracetamol in the morning gets me going.I am 80 in a few months so am very lucky.The only problem is no good drugs at the beginning like today so damage in wrists already done,joints worn away,so nothing to do there! Don’t despair something in combination will work for you,keep us posted xx