I have had RA for 24 yrs, something that happened at the end of the menopause for me. There have been ups and downs over this time, but there has always been some advice and help at the end of a phone line to guide and help me through.
I have been on been on Tocilizamub since 2015, first of all it was monthly infusions and then self weekly injections when the COVID pandemic made it too difficult to attend the Infusion Dept.
I am in my 9th yr of having Tocilizamub and it is now not having the effect that it has done, so feel it is time for a change.
I am seeking advice as to what would be a good choice of biologics to change to. Is there someone reading this that has had to change medicines for a more effective result.
I would like to hear of your suggestions
LillyBeagle
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LillyBeagle
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Hi LillyBeagle. We can tell you how we’ve got on with other drugs but as you know, it’ll be up to your rheumatologist who will prescribe what they think is suitable for you and your Integrated Care Board (if you’re in England) who holds the purse strings.
I have had all the DMards and biologics over 34 years but the drugs which have worked the best for me, and still are, are the JAKs - Baricitinib and Filgotinib so far. Baricitinib stopped working after three years after a bout of covid and after a short time on Tocilizumab, which didn’t suit me at all, I was prescribed Filgotinib which I’ve been on just over a year and is working really well. I have severe ,refractory RA and anything that works well is a big bonus!
They are good medications in that they are taken in a daily tablet night or day, doesn’t matter and they don’t hang around in your system so if you run into trouble they clear your bloodstream within a couple of days. They're very targeted so don't clobber your whole body with unwanted side effects -I never had any with either JAK - and by all accounts they work well for others too. People will tell you and there’s been loads of posts about them on the site.
Do hope you have some luck on your next drug whichever it might be. It’s such a lottery and takes so much time and it’s a real bummer when they stop working but there’s many out there now so mitts crossed! Best of luck.
Hi. Yes, you’re right. Just looked up the latest info from the government on prescribing of JAKs and there is warning of increased risk to those over 65 from embolism, heart attacks and skin cancers. I am 71 and on only 100mgs instead of 200mgs due to lowered lymphocytes and I have read that others in the same age bracket are also being prescribed only 100mgs.
This is the only drug that was available to me as all the others have stopped working or poisoned me so we had run out of options. So far so good and am being checked every six months by dermatology and rheumatology. I am doing well on Filgotinib.
On the positive side, I think those on JAKs who are younger have benefited from them and they are another in the armoury that rheumatologists can offer patients.
Yes and hopefully more and less problematic treatments to come in time. I've had Pulmonary Embolisms linked to RA so no chance for me, ever! Around here people are being limited to 3 Biologic as well so no idea what happens if over 60 and had all 3! I'm very over 60 and been allowed to go back on 1 biologic so far only had 2 but who knows what will happen. I don't know if its medical concerns or just cut backs?
What a dismal prospect! I don’t know if our ICB is cutting back but then I’m hopefully not in the market for another drug for some time…….t’would be lovely if somebody came up with a quick remedy but I’m not holding my breath!
Explain your feeling & ask your rheumy’s advice…..he/she knows your history….& knows from previous meds you have taken…..what is likely to suit you.
I must sound like a broken record, but it’s no good reading that somebody else has done really well on XYZ… because what helps them might not be the answer for you and what was my solution won’t solve your problem I’m afraid.
But it really is a good time with so many new drugs on the market to get your rheumy team onside to help you.
Good Luck..hope you get something to suit you soon.
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