Introducing myself: Hi. It's good to be able to share... - NRAS

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Introducing myself

Bx12 profile image
Bx12
9 Replies

Hi. It's good to be able to share. I have had RA for 16 years. Some good patches, some not so good. Currently taking Leflunomide, have had not good times in methotrexate in the past. Probably going to have sulfasalazine added into the mix soon. I would be interested to hear how others do on this mix?

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Bx12 profile image
Bx12
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9 Replies
PFKAAde profile image
PFKAAde

Hi Bx12

Welcome to the board that you never wanted to join. 👋

I’ve had RA for 19 years or so, so very similar. I’m maybe not the person to answer your questions on those drugs as I didn’t tolerate MTX too well, although put up with it for a few years. It did help a bit but wasn’t a miracle for me.

Leflunomide just made no difference, no side-effects but no response.

Sulfasalazine it turns out I am allergic to, and I ended up in A&E after starting it.

Humira has been the one for me for the last 10 years, and has resulted in me being in remission for most of that time.

There are many that have had success with combinations of those drugs though, so fingers crossed 🤞 hopefully you will be one of them.

All the best.

🙏🏻

Bx12 profile image
Bx12 in reply toPFKAAde

Thank you. It's a help. I had a very bad reaction to another combination, so just hoping.

I'm glad humira helps you.

Yes it's nice not to remember we have RA too often.

PFKAAde profile image
PFKAAde in reply toBx12

What was the other combo that gave you problems?

I had another that caused a similar reaction but for the life of me I can’t remember which one, think it was either cyclosporine or hydroxychloroquine.

Are biologics an option for you?

I went on to infliximab initially but ended up developing antibodies to it so it was stopped.

Then went on Enbrel which didn’t work and then Humira - which currently does. Being on Humira and having an understanding rheumy has enabled me to drop the MTX and that was a massive thing because it really made me feel (and be) sick for most of the week. Stopping the car on the way to work to throw up in a plastic bag isn’t ideal. 🤮

Bx12 profile image
Bx12 in reply toPFKAAde

Yes hydroxchloroquine.

I think my dabs score is too low to be considered for the bios, although ironically when I was first diagnosed I was offered humira.How times have changed. Thanks for the thought.

CloudTreeDrive13 profile image
CloudTreeDrive13

I'm not doing too badly on Leflunomide and Ritux. Only have infusions once a year. Had to stop methotrexate as made me sick - both using tabs and injection. You just need to find the right combination. Take care xxxx

Bx12 profile image
Bx12 in reply toCloudTreeDrive13

Thanks. That's good to know. It will get sorted again with time.

Yes methotrexate is grotty. I too tried the injections but was worse.

Hope you go on being good with your combination.

CloudTreeDrive13 profile image
CloudTreeDrive13 in reply toBx12

Why, thank you very much.

weymouth321 profile image
weymouth321

Hi - yes, been taking Sulfalasazine for past 5 years or so - been my wonder drug until recent months now not effective, so Rheu con stopped it last week to switch it to Baricitinib. ( Methotrexate didn't suit me when diagnosed 9 years ago ).

Been taking Leflunomide for past 3 years as suddenly uncomfortable / painful to sit - Ishium Tuberosity. Leflunomide did the trick.

Diagnosed RA 9 years ago.

Bx12 profile image
Bx12 in reply toweymouth321

Thanks, that's encouraging, I hope that your new drug works for you.

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