Running Out of Options

[Dorey1961]

Hi

I’m 62, and a coeliac, and I was diagnosed with seronegative RA and Sjogrens Syndrome about 3 years ago, after 5 years of issues with pain and neuropathy in my hands and feet, followed by swellings in the joints. This was confirmed by an MRI.

So far, I’ve tried the following:

Methotrexate (constant nausea, bloating, stomach cramps, diarrhoea, dizziness, so had to come off it)

Sulfasalazine (took it for a year, maximum dose, no effect except brown pee and constant palpitations)

Benepali (amazing for 4 months, changed my life, but then stopped working)

Amgevita (no effect at all)

Orencia (no effect at all)

Rinvoq (worked like a charm for five months, then stopped)

Remsima (no effect at all)

Olumiant 4 (no effect at all)

My rheumatologist seems to be at a loss as to what to try next. He can’t understand why nothing seems to work for me, and has suggested that my coeliac disease could be a factor. But that’s well controlled and I follow the diet religiously, so it’s hard to believe.

I’m just wondering if anyone else has been in a similar situation and has any useful suggestions.

[Blackberrywine]

Yes. I tried quite few meds. Most didn't work and nearly all caused severe side effects. Steroids into joints and IM helped somewhat. With advice from rheumatology I've just decided to take a break from meds for the time being.

[StormySeas]

Hi there

I have CD too. My treatment is MTX and RTX.

I’m confused by the statement your rheumatologist made. I’ve never heard this theory. If, as you say, you’re diet compliant - and therefore symptomless - I can’t see that this could have any effect on drug absorption - if that’s what they’re talking about.

In actual fact, I think RTX can actually mask the effects of the inflammation that comes with CD. (I know this does not apply to you, just thought you might be interested. Of course it’s not a cure, it’s a relatively undocumented side effect of the drug)

But back to your rheumy - I think it’s a shot in the dark. Ask them why and how - I’d be interested to know.

Anyway, good luck with your search for treatment. Hope you have success with another drug

[Dorey1961 in reply to StormySeas]

Thanks for your reply. I think my Rheumatologist was just grasping at straws really.

[Madmusiclover]

similarly coming to end of my rope. upadicitinib?

[Dorey1961 in reply to Madmusiclover]

I had to look that up. It’s Rinvoq, which was amazing for several months, but then stopped working. So no joy there, but thanks for the suggestion :0(

[Madmusiclover in reply to Dorey1961]

Oh yes so it is. I’ve really only got Rinvoq and rituximab left to try. Sympathy.

[Hisue in reply to Dorey1961]

How about trying a different JAK?

[Dorey1961 in reply to Hisue]

I’m currently on Olumiant, but it’s not done anything and I’m worse than I’ve ever been so far. So that’s the second JAK inhibitor I’ve tried.

[Hisue in reply to Dorey1961]

I was thinking of Xeljanz.

[wilbertjellyfish]

I was diagnosed sero negative six years ago. I took tried so many biologics. Mtx I'm on but was still really struggling with stiffness, pain and generally unwell. Then last month, during my third admission to hospital in the same number of months they decided I have adult onset stills.

Pred is the only thing that works for me really. I'm on anakinra now and hopefully it'll do the trick and I can wean down the steroids.

It might be worth suggesting are there other similar conditions you could have.

[Dorey1961]

Thanks for your reply. You’re right, it’s worth asking if they’re sure it’s RA, although that was confirmed by an MRI, and they seemed pretty sure. But I will ask again.

[Intheend]

I am also getting short of options having tried all the ones you have been on ! Have just started Tocilizumab injections… don’t know if they are available to you in France?

Too soon to know if they are going to work as no sooner had I started them than I went down with Covid followed by a chest infection! As a result I have been on Antivirals and Antibiotics and have had to suspend my injections🙈

[helixhelix in reply to Intheend]

I had a spell on Toci and I’m in France.

[Dorey1961 in reply to helixhelix]

Glad to know that’s available in France. I’ve not had anything on the interleukin receptors. Might well be worth a try.

[Dorey1961 in reply to Intheend]

I haven’t tried anything in that family of drugs yet, so I might ask my rheumatologist if he thinks it’s worth a try. Thanks for the suggestion.

[helixhelix in reply to Dorey1961]

Just a thought but I was on Enbrel (the original for Benepali) and it stopped working following a nasty viral infection (not covid). My rheumy reckoned that the infection had provoked my body to develop antibodies to the Enbrel.

We tried all sorts after with very little positive effect. Then about 18 months later my rheumy suggested giving Enbrel another go. She said she usually liked to leave 3 years, but since nothing was working was prepared to give it a try. So we did. And it worked!

If Enbrel/Benepali was a while back maybe worth asking to try again? If you weren’t taking it with MTX then maybe same happened to you? As the MTX is there to help stop developing antibodies. Could you face 5mg MTX if that was proposed?

[Dorey1961 in reply to helixhelix]

Hi. That’s very interesting. I honestly don’t know about the MTX, because it made me feel so bad, I didn’t have a life at all. The problem was, I still had the problems with my joints plus the peripheral neuropathy, and I was only sleeping a few hours a night, and having to use ice packs in bed to try to reduce the heat I felt in my hands and feet. And then to have all the nausea, dizziness, stomach cramps and diarrhoea that I got with the MTX just made it impossible to do anything. But I will bear that in mind.

I was taking Benepali for six months last year (Jan to June) but it worked for three and then just stopped. At the time it was amazing and transformed my life, because seven days after I started taking it, I slept all night, which changed everything for me. But I will ask my rheumatologist if he thinks it might be worth trying again.

Thanks for the suggestion.

[Angels54]

Hi, I had the same problem, I’m currently on Benapali but not getting anything positive from it , he has mentioned be going on a trial drug , after reading the information I decided not to, I have had a flare up over Christmas, didn’t feel well after shingles vaccine. 👍

[Dorey1961 in reply to Angels54]

I didn’t realise how common it is to have RA and be difficult to treat. Apparently about 10% of patients don’t respond to treatment. It’s quite depressing.

[Jackie1947 in reply to Angels54]

How long have you been on Benipali?

[Angels54 in reply to Jackie1947]

I would say over a year , I was on abatacept before 👍

[Mmrr]

Similar here too. I'm now on Filgotinib and Leflunomide and 11 mgs prednisolone per day (my 10th and 11th meds). They help a little, not a lot.Sometimes I think coming off them and staying on prednisolone would be my answer too.

I'm also seronegative, my consultant is questioning whether I actally have RA.

[Lolabridge]

Ask your Rheumy whether Rituximab is worth considering as someone above suggested. It worked very well for me for some time. I’m now on RoActemra (Tocilizumab ) and that’s working well for me - it’s an IL6 inhibitor. Good luck with your search for one that works.

[Hidden]

As a matter of interest, have any of you on biologicals or jac inhibitors developed a low neutrophil count ?I have only tried benepali for just under a year and this is what happened to me. Thanks in advance.

[Angels54]

I was told the same when nothing worked for me , sometimes I think they don’t believe you 🤦‍♀️