new medication: I was asked by my consultant if i would... - NRAS

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new medication

gradyjackjacob profile image
11 Replies

I was asked by my consultant if i would try jyselica instead of olumient because it would by a cheaper medication for the NHS,i said i would try it ,has anyone been on this medication.

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gradyjackjacob profile image
gradyjackjacob
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11 Replies
Firion profile image
Firion

I moved from olumient to jyselica at the end of September, cost wasn't mentioned but the olumient was no longer working as well. So far because I have just had 2 weeks with no methotrexate (covid jag) it is a bit too soon to tell if it will be effective. Reasoning I was given was that it was similar to olumiant which had worked really well until the covid vaccine seemed to affect it, but my consultant was clear if it doesn't work, there's more to try.

gradyjackjacob profile image
gradyjackjacob in reply toFirion

Thank you for your reply.

Amnesiac3637 profile image
Amnesiac3637

I have been on Jyseleca (Filgotinib) 100mgs since April. Was on Olumiant (Baricitinib) for three years prior but it failed after I had covid. The costs are about the same per month but they’re both JAKs and therefore much more targeted than biologics so are predicted to work more effectively. The added advantage is that they’re tablets so if you run into trouble with them they’re out of your system very quickly.

Jyseleca is working for me in that I have more energy and fewer swollen joints but my pain levels are not as well controlled as when I was on Baricitinib. However, that may be because I am on 100mgs rather than 200 mgs as my lymphocyte count was too low on the higher dose. Also am 71 years old so JAKs now not recommended for anyone over 65 due to cardiac risks. You can’t win! Hopefully, you are younger and Jyseleca works for you and this will be the one that controls your disease. All the very best of luck .

gradyjackjacob profile image
gradyjackjacob in reply toAmnesiac3637

Thanks for your reply,i had no problems with baricitinib at all,but i,ve been taking jyselica for two months now but i feel quite nausious every morning.I,m 66 so why i,m still on JAKs i don,t know.

Amnesiac3637 profile image
Amnesiac3637

You’re probably still on a JAK because you’ve already started on them ((though that’s only a guess) and again, the new protocol I’ve read may be for new patients only if there’s no better alternative.

I have always taken anything like these drugs at night so as to ameliorate the side effects if I’m going to get any so if you haven’t tried doing that it might be worth trying. It doesn’t make any difference with the tablets as you can take them any time and so if they’re making you feel sick during the day, you won’t notice at night! Works for me. Jyseleca also made me feel slightly light-headed for a while and that is a side effect so don’t be surprised if that happens.

gradyjackjacob profile image
gradyjackjacob

Thank you for your helpful reply,i will try taking the meds at night.

AgedCrone profile image
AgedCrone

No I haven’t been on Jyselica…but it seems consultants & GPs are being told to offer these cheaper drugs….which seems a bit like rearranging the deckchairs on the Titanic.

Instead of fiddling around changing individual patient’s medication on every pill issued…., why doesn’t the NHS address the way GPs(& presumably consultants) are allowed to bulk purchase drugs.

I have recently been asked to change a non RA related drug to save money…but when I checked the cost it was £1.14 per week….hardly budget breaking…..so I checked it against the drug I was asked to change to…& it was the same.

When I asked the GP pharmacist what was going on….it appears the NHs can only purchase drugs from “approved “ companies…they can’t search the market to choose the most economical drug.

Surely common sense should prevail….purchasing of everything in the NHS is controlled this way, …so surely it would be cheaper in the long term to employ somebody to check what is available & sort out a better system? Obviously safety is paramount…but the amount that could be saved must be huge?

But hey…what do I know…..but I think maybe a lot of patients will fall between the old successful drug & the new cheap drug?

gradyjackjacob profile image
gradyjackjacob in reply toAgedCrone

Thank you for your quick reply.

Doodlereggie profile image
Doodlereggie

I have been on jyseleca for 8 months now and it worked very quickly reducing crp from74 to 7 which was a miracle,and pain was a lot less.Although I am now 79 years old started on 200 mg,which has now been reduced to 100 mg since last week,as advised.Have not noticed any reduction in relief,which was worrying me.I take at night with a full glass of water about an hour before going to bed,with no side effects that I know of.Due for blood tests in December so will get a fuller picture then.I did get a little nausea for a while,and bought some cheap wrist bands on eBay which solved that problem.They are probably a placebo,but I believed they would work,so they did!

I do get the odd flare in my hands,but when I look back I can usually find a reason for it,been doing too much etc.

I think jyseleca is a miracle for me,after methotrexate,hydroxichloripine,benepali,azathioprine,and long term steroids,so am convinced as others on here that something does work for most with ra,just finding the right one.Good luck,keep us posted.

gradyjackjacob profile image
gradyjackjacob in reply toDoodlereggie

I will many thanks.

gradyjackjacob profile image
gradyjackjacob

Apart from feeling nausious it seems to be working,thank you for replying.

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