medication, not working

[Dolindocurmi]

hello everyone out there I don’t usually post but I’m looking for answers at the moment. I’m very confused and feel very alone. My medication has stopped working after two years. It’s called Baricitinib 4 mg. my rheumatologist had to drop it to every second day because I had an infection and now it’s not doing anything to help my pain. I will be seeing him next week. He thinks that maybe it has stopped and there’s tons of new medication. This is what worries me I have been on methotrexate for years hated it, my hair thinned out, and I didn’t do anything for my moods. My feet are sore at the moment my neck my hands, my knees shoulders. I’m not able to swim like I used to walk as far. I had an infection a month ago and rheumatologist put me on steroids for four days as soon as I stop taking them. I’m sick again I’m really hoping that I do not go back on them. They keep me up at night. I have acupuncture every two weeks and the Chinese doctor thinks my kidneys are really suffering into drink plenty of water. Could anyone out there let me know if they have been on this drug and could they suggest what drug they have tryed with very little side effects. I’m going to do my research tonight I different types of medication, thank you to you all 😊

[helixhelix]

First thing is that you do have regular blood tests don’t you? One of the things checked in routine blood tests is kidney function, so if your test results are fine then you are likely to be fine. That’s more reliable than the views of acupuncturist - although drinking water is always good advice.

I have changed drugs 4 times in last year looking for one that will work after my previous one failed. Your doctor is right, there are lots of options but no-one can tell you for sure which one will work for you. So I am plodding through them - which is very frustrating as have to try each for 3 months.

Same with side effects - we are all different and what suits one person will make another feel sick. If you do a search on here (box on top right of your screen) you will find posts on Barictinib- I remember a few from people who really got on well with it. But of course people post more when they have problems. The last drug I tried Tocilizumab gave me a permanently runny nose, so permanently sore throat. Others don’t get that!

I hope the one your rheumy suggests is the one for you!

[Dolindocurmi in reply to helixhelix]

Yes l do have blood test, but not sure about my kidneys. I will look into that thank you, I will be seeing my rheumatologist next week. Hopefully he will put me on something that could help with the pain. It’s just a little scary trying new drugs. Have a good day and thank you 😊

[Doodlereggie]

I too have tried many meds over the years but so far nothing brilliant.been on 5 mg preds for last 23 years,but now need more.I too did not get on with methotrexate,and been on Benepali injections weekly for 9 months,I had no side effects on that at all,but has not kept inflammation down.crp 75currently .just started a JAK today same as your recent meds but called filnotigib.my rheumy says there are now half a dozen new JAK treatments,so ask him if you can try another.Replies on this forum from people on it have been brilliant,they say it works quickly,with no side effects,which is very reassuring. Please let me know how your appointment goes,be thinking of you.Good luck.Research JAK inhibitors in use now.

[Seatgeorge]

Blood tests done regular will tell your gp or rheumy what's going on with your kidneys and infection markers, it's a bummer but you do have to find a drug that's suits you, good luck.

[Dolindocurmi in reply to Seatgeorge]

Yes l will have a blood test, but l do believe my medication has caused all these infections. I will be asking my rheumatologist if I can start on a biological drug hopefully he will agree. Infection started 2 years around l had a cyst on the side of my breast that had to be taken out, that’s when he told me to have one every second day but nothing is working. Thanks again.😊

[Seatgeorge in reply to Dolindocurmi]

I have just been put on a bio jab Benepali, the good thing is they reduced the methotrexate so it's a case of wait and see they said it takes 3 months for things to settle down? if it doesn't work I'll ask about the jak I hibitors.

[Deeb1764]

I think like many of us on here we have done a selection f the medications available it took me nearly 3 years to find Baritcitnib and along that path some really bad side effects till I got it.

The side effects for you we cannot define as its all so personal how we react and I decided rather than read too much blurb on each new drug I was given to just take it and see what the effects were. This stopped me stressing too much and all drugs have side effects even a paracetamol so the blurb can scare you for no reason.

GP will check your kidneys if this is a concern just ask for a blood tests if you want to sort sooner too.

Pain again my GP sorts this for me as faster than seeing my RA team. So he does up of steroids if seems to be joint pain and if other I am seen.

Calling NRAS is worth a go too as thhey might be able to point you in the direction needed as well. Always been very helpful when I have called too and good to tlk out your concerns pre seeing RA team.

[nomoreheels]

Unfortunately this can happen, a med can just stop working. As your Rheumy says though there are plenty of others you can try, I think there are another 4 JAK inhibitors available in the UK for RD, not sure if all are in Australia, but your Rheumy will advise if he thinks another is worth trying. Other than that there plenty in the are anti-TNF/biologics group. Unfortunately it is a case of try & see. I appreciate it can be trying if you tend to react to meds. I don't generally but my h is very sensitive to many meds. Thankfully he's ok on his current bucket load though it's taken a while to get there. That said the latest addition to his diabetes meds, Ozempic, is causing him real problems by way of a flare up of existing IBS. It's still early days so he's determined to continue on it even if it means a slower titre up than originally planned.

I'd check your drug monitoring bloods, see how your kidney function is & if it is as the TCM doctor says discuss at your next appointment with your Rheumy. Meantime keep drinking the water to flush out any unwanted stuff!

I do wish there was a one med fits all for RD. I wish you well with whichever you try next.

[Kitten15]

Can anyone tell me hoe long it takes for humira injections to work. I've been on fortnightly injections 40mg since 25th of January but still in agony with my Ankylosing spondylitis. Neck is in a terrible way can hardly get it to move sleeping is near impossible and thoracic back just as bad. Thanks lovely people x

[nomoreheels in reply to Kitten15]

You've a chance of receiving more responses if you start a new thread Kitten. As it's a different med you're wanting experiences of (to the one you've replied on) asking here it is less likely to be picked up on & replied to. I hope it is, it sounds as though you're in a lot of pain & Humira is commonly prescribed for RD as well as AS.

[Dolindocurmi in reply to nomoreheels]

Thank you for getting back to me, l will look into that. 😊

[nomoreheels in reply to Dolindocurmi]

My message was intended for Kitten15 , although you as the OP do also receive an alert that there has been a reply. It can be confusing. 🙃

[Dolindocurmi in reply to nomoreheels]

That okay 👍

[Blodynhaul]

Hi 'Dol' (!)

Really sorry to hear of your concerns & suffering with side effects & the drug now not doing its job.... I share your fear with drugs not working. In a similar position to you with a similar JAK-inhibitor having been on one for 1 year and 3 months now (Filgotinib, FIL), following a year (2021) when nothing worked (including Biologics) after my previous Leflunamide had stopped working. The FIL worked so well with my RA for a year (thru 2022) - a miracle, but had other chronic debilitating effects that came on, so we cut the dose in December from High to Normal (in half) - but 2 months later the RA has come active again & worsening even though been back on the high dose a few weeks. Frustrating and depressing - as you know!

Also - these Jak-inhibitors we're both on seem to be used only after the DMARDS /Biologics haven't worked, so it's a concern as to whether other ones will work or not. But not trying to be depressing as it is true different things work for different people! Our immune systems seem so complex and respond in different ways to all sorts of things. All the RA drugs suppress the immune system, so we're always liable to picking up infections etc. unfortunately. I did well on Methotrexate & Leflunamide for many years, though had a lot of nausea, but the last couple of years are a different matter.

I hope very much your Baricitinib starts working again & you can have a good session with your Rheumy to be checked properly. As others have said - there are many other drug options for us, even though it feels like nothings works sometimes. All the best X

[Dolindocurmi in reply to Blodynhaul]

Hi Thank you for sharing your experience. I have stopped talking this drug, l am taking an anti-inflammatory to ask my rheumatologist. Yes you are right so many different drugs, l have been doing my research about the biological drugs they’re not synthetic at least.l do hope you could find the right medication and thank you so much for taking the time to reply.😊

[RA64]

Hi. Im sorry to hear that. I was on Methotraxate also for many years, and it stopped working, then was on humira, also side effects, now on steroid tablet low dose and so far everything is good. i hope you find a good medication soon. its hard having to start and stop and change. 🥰

[Dolindocurmi in reply to RA64]

Yes I was on Steroids for only 2 weeks because my rheumatologist had told me that I had an infection and attacked my immune system that’s why I’m coming off my medication, it gets very confusing knowing what to do. I will see what he has for me next week. I don’t want to be on Steroids for the for a long period of time.Thank you for your reply 😊