Help! Advice please

[Smithycat]

After many of years of problems with my joints, I was diagnosed with Enteropathic Arthritis (I was diagnosed with Crohn’s disease in 1996). I was on Sulfasalazine 1.5g bd for a year but this was ineffective so Methotrexate 20mg weekly was added in May 2018. This was also ineffective, so the Sulphasalazine was stopped and I remained on just the Methotrexate whilst I waited to start Adalimumab (Imraldi). I have now been having this since January 40mg every two weeks. This has been minimally effective so my Dr wants to withdraw it and says that if that hasn’t worked then none of the other biologics will work so her intention is to just leave me on Methotrexate. I don’t think that this is satisfactory as I have been solely on Methotrexate for more than a year and it was because this didn’t work that the Imraldi was added. Also, from what I have read on this site and from a friend’s experience, I understood that people often need to try more than one biologic before they find one that works for them. If what the Dr says is true that none of the other biologics will work where does that leave me?

I would be very grateful to hear of your experiences and any advice you may have.

Many thanks

[AgedCrone]

Have you checked she doesn’t just mean a monoclonal anti body Biologic might not work....there are others....ask her to explain,

I have no clinical qualifications on this subject....but I do know from discussions with my rheumy that different Biologics treat different types of RA.

[helixhelix]

“Rude words” to your doctor....

......there is a lot of literature for RA that shows that whilst you may not respond to an anti-tnf like Imraldi, you could well respond to other biologics that target other molecules like T-cells, B-cells and IL-6. There are also now JAK inhibitors another different type of drug (and not biologic)

Possible solutions:

A) find another doctor

B) tell your doctor to go back to school (not advised!!!)

C) Ask your doctor very politely whether the treatment for enteropathic arthritis is so very different from standard inflammatory arthritis, as you don’t understand why following the standard treatment pathway as set out by NICE isn’t an option for you.

Here:

pathways.nice.org.uk/pathwa...

[Biofreak]

I would not be happy at all with your Doctor's opinion. I agree with both previous replies. I am currently on my 4th biological treatment and I can testify that 3 out of the 4 worked, one for 5 years. As Helix says different biologics target different molecules. If they were all the same there would only be 1 biological treatment. Unless he has specific reasons for saying this in your case, I would challenge his opinion. Doesn't seem right to me.

[Ali_H]

I’d add take someone in with you at your next appointment.... family member or friend. This can change the ‘tone’ of things!

All the best

Ali

[attatel]

I'm on my third different type of biologic so I would imagine there are still options for you. I've never heard of a doctor saying this before. Good luck!

[Smithycat]

Thanks for all of your messages and the extremely helpful advice 😀

[lilyak]

There are biologics specifically for Crohn's. These are more likely to work for you. Your arthritis is a symptom of your Crohn's, which behaves differently to RA. Your rheumatologist would know this. Do you have a gastroenterologist for your Crohn's?

[petalnumber2]

Hi Smithycat,

I’m sorry to hear about your difficulties.

I have been on Methotrexate in both forms, tablets and injections, over the years.

Like all drugs methotrexate has it’s side effects. Eventually I had to come off it because I had fluid on my lungs which turned to mild pneumonia.

Some personal research revealed that

this is a side effect of Methotrexate.

I don’t know how rare this reaction is.

But as I say, I had been using it for many years in one form or another.

If you read the contraindications leaflet in the tablet box, it does include information about this side effect.

Take care xx