What treatment worked best for Seronegative Inflammatory Arthritis?

[SeroNegArt]

Hiya

I'm a newbie to NRAS, and had lots of side effects with various treatments for SNIA (Seronegative Inflammatory Arthritis). I am just about to restart taking Baricitinib after trying Methx, Sulfzine, Tocilizumab (infusions), Benepali, etc

All of the above didn't last in terms of efficacy. I did try Baricitinib for a short time before, but was having lots of life stresses at the time, and got a serious sinus infection. I am very prone to sinus issues anyway as have post-nasal drip and on HRT patches.

Anyone had success with Baricitinib after the initial side effects have calmed down, and do you also have SNIA, Fibromyalgia, OA and Raynaud's?

I feel I want to give Baricitinib another go before trying another Anti-TNF...

Any advice gratefully accepted

[Helen-NRAS Moderator]

Good afternoon. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Kind regards.

[Mmrr]

I too am seronegative and have been through all conventional DMARDs, TNFs and other biologics.

The JAK inhibitors have been the best for me. I changed from Baricitinib, as I repeatedly got minor viral infections to Toficitinib which had reasonable efficacy and no viral infections. Whether coincidental or causal, after I received my 3rd Covid vaccination (Pfizer) the efficacy dropped and I've been struggling since then (last October). I went for a private consultation in June, waited nearly 4 months for MRIs on the NHS and have an appointment with the private rheumatologist, who I am now seeing under the NHS next week. I've changed to his list on the NHS.

A long story, but JAK inhibitors have by far been the best for me.

[SeroNegArt in reply to Mmrr]

Hey Mmrr

Thanks for your really helpful and prompt reply. I am now waiting for the Baricitinib to be delivered (such a waste of valuable NHS funds, as I'd be happy to fetch them from my local pharmacy rather than Sciencus claim delivery costs from the NHS).

However, it's very interesting you mention the drop in efficacy after your 3rd covid vaccine. I had exactly the same happen when I had the flu and Pfizer vaccines in December '21. The Benepali injections not only stopped being effective, I also got really bad pains at the injection site and stomach cramps. I did wait two weeks after the vaccines before recommencing the Benepali. I wonder if anyone else had similar experiences to us?

I hope your upcoming appointment with the rheumatologist is successful. Do go armed with questions and don't get fobbed off with the 'ol "wear & tear" speech - it's nonsensical, and irrelevant...

😉💪

[WillowsMother in reply to SeroNegArt]

I'm also sero negative... I've recently had to swap Baricitinib for a new JAK - Filgotinib because each time I've had a covid jab, it has decreased the effectiveness of Baricitinib, which was the first of a long line of RA medications that actually did anything for me. Understandably I was very disappointed to get worse and worse flares with each vaccination, but I really don't want to give up my protection from covid! I've now timed my change to Filgotinib so I have a 1 week gap after my recent covid booster, in the hope that I get a good 4-6 months benefit from the new drug, uninterrupted by a vaccine.

I'm not sure whether to do the same with my flu jab (booked for 10/10) as I've not experienced the same type of flares as I have with the covid jabs...

[Mmrr in reply to WillowsMother]

Interesting thst a few of us are reporting reduced efficacy of JAK inhibitors after Covid vaccinations, yet my previous rheumatologist almost laughed in my face when I mentioned it.

[WillowsMother in reply to Mmrr]

What do they know? 😂

[LesBev]

hi, I’m sero negative too and after ten years of different drugs baricitinib works the best for me. It did take a while to kick in but I don’t want to be without it now. In my experience, I’m never pain free, it might not bring “remission” but I don’t know what remission is anyway so can’t comment. Good luck and stay well.

[SeroNegArt in reply to LesBev]

Aw, that's great news, LesBev

On reflection, I do think I was a bit too hasty to dismiss it last time I tried it.

I am really pleased Baricitinib has worked for you and sounds like you are doing well.

Thanks for your helpful post ✊🏼😊👍🏽

[Dave74]

Benepali works best for me! Been on that and enbrel previously for 11 years now! 😀

[Mozart150]

Hi I'm seronegative and had to go through the process of trying DMARDS and anti-TNF'S (had a lot of flares and steroids in that time as they insisted I stay on them for 3- 6 months - to give them a chance to work! I have found Baricitinib has worked the best and my CRP was 1 at last blood test which I don't think has happened before. I have had fungal infections on it eg Athlete's foot but my rheumatologist is happy for me to stay on it with these as long as I am not ill in myself. I have put on a lot of weight since I have been on it and always seem to want to eat - I know this isn't listed as a side effect though!! I need to stay on it as has worked the best but need to try and lose some weight !!! My rheumy doesn't want me to come off it to get the Flu jab as he doesn't want me to flare. Good luck. xx

[Angjoplin in reply to Mozart150]

I've been on a similar journey. Months of useless anti-tnfs that they have to give a chance because of the cost. Got to go through the cheap drugs first before you can get one that works. Baricitinib has been great for me too. I had to come off it for an operation recently and flared straight away. Shows what the drug does do.

I have though put on 3 stone since taking them. I put it down to getting married at about the same time plus my mobility due to all the joint damage previous to the jaks. But now you have me thinking. I am hungry all the time. I can eat a full meal and be full to stuffed and then hungry again 20 minutes later. Maybe there is a link? I also get athlete's foot and have to be very careful with my gums because I am prone to gum infections which seems to have got worse. Small price to pay I guess but it is interesting.

[Angels54]

Hi , I feel the same , I currently started Benapali but had several infections and currently on antibiotics so unable to inject , haven’t had much erase from it at moment, my consultant said I wouldn’t know what to give you next , that’s a worry .