Happy new year everyone!
So I have fibroblastic rheumatoid disease which hasn't been easy to control. However last 4 years were much better on leflunamide, tcz infusions and steroids!
But I've reacted again quite badly and been taken off them.
My amazing consultant just called me and suggested Jak inhibitors.
Has anyone personal experience of changing from infusions to these , good or bad x
Looking for personal experiences not medical advice as I'll do what the consultant prescribes!
Hope all goes well for you! Happy new year. 🥳 I am on a JAK inhibitors baricitinib or Olumiant it has worked very well for me and stopped the bone degradation that was happening I am still taking sulphasalazine with it only downside is my cholesterol has risen so they put me on statins to counteract and porridge for breakfast tablets are delivered to my door every three months best of luck allanah
No sorry but I’m glad you’re being positive after the setback. I hope they work.
Thanks Med , fingers crossed 🤞
Happy New Year allanah. Can't help you with experience, just send you hugs and best wishes. I hop the JAK inhibitors work.
Thanks. Me too !love to you and Mrs stB
Hi Allanah Happy New Year ! Out of interest how was you diagnosed with fibroblastic rheumatoid? I’ve not heard of that. I’m sero negative - my journey in profile - took ages to get diagnosed!
I’m on Baricitinib and apart from being more prone to fungal skin infections has worked well (I haven’t had to have Prednisone) and inflammatory markers quite low or in range. I have got fibro and osteo -so never quite sure what causes pain. Good luck x
I had to see a specialist endocrinologist, oncologist and rheumatologist due to the weird and wonderful pattern of internal non malignant lumps and cysts on organs and inside joints, ribs etc . Thankfully in some ways not noticeable externally but stops a lot of me working. My body sees them as a foreign body, thus inflames but the main treatments eg methotrexate and radiotherapy and chemo plus excision ops ( ouch) did not work for them all. Tcz steroids and lefunomide did but now my body has decided it no longer likes it this the change unfortunately. However isn't it good rheumy called today and has another trick up his sleeve.
Ps keep pestering even with zero negative? My rheumy does treat it clinically x
Oh gosh -sorry to hear all that ! Keep us updated on the treatment you start on. Xx
Thank you. I've been diagnosed since 2011! I volunteered here and for NRAS for a long time ( when we were volunteers lol) but gave up a couple of years back . I made many ftiends on herex
Think I've had most types of treatments! but the new ones I'm learning about ! I'm glad you found them good. Out of interest did you get nausea?
My daughter keeps having bilateral Ovarian Dermoid Cysts growing and had her second op in May and they've grown back again. She wants to have a baby one day, she's 32 now. She has RA on Enbrel since 2010 and added 15mg Methotrexate tablets weekly during after lock down.
I had cysts .. went on to have three children with fertility treatment x
Its super to know you had your children. Did you have Ovarian Cysts? How did you manage to get off of meds to have your Children?
Yes ovarian cysts and one ectopic!! But the fertility treatment really worked I was very lucky. The rheumy and gynae folks can work together often. But I wasn't on rheumatology drugs then .... but never lose Hope. I got lots of options , I was on steroids then x
Did you have Ovarian cysts removed more than once? Were they dermoid cysts or another type of cysts? Thanks
Tbh I really don't know what type !! Just cysts. Mainly removed by laporoscopy but some by surgery ..we are talking 25 years ago tho I'm afraid. Things have moved on so much since then wonderfully xxx There's loads of info online and about fertility treatments. And I'm sure others on here if you post could tell you experiences more recently.
But one thing I learned don't give up hope x your daughter is lucky to have your support x
Hi Allanah
I’ve no personal experience of this type of medication, but just wanted to wish you all the very best with the change xx
Thanks so much. Hope you are OK x
Not bad thanks, last year was a tough one! Going back on Rituxumab now though so hope things improve, which I hope they do for you too. Xx
I hope so for you. 😊
Unfortunatly I reacted to Ritux ( of course lol) but I was on it for 9 month to a year before that x
Sorry darling i can't help you as i no longer take biologicals. Happy new year to you my darling.xxxx
I know hon, you have a rough time but gosh you keep going don't you !?
I was on Baricitanib for a couple of years before it stopped working. It wasn’t perfect at controlling my RA but I was only on half the normal dose because of hypogamma. No side effects at all. I eventually asked to be put up to the full dose of 4mg and that was a mistake as I got an infection which took six months to clear and then never worked again. I hope you get on well with the new JAK.
I was on tcz injections with lef and steroids. I had to come off tcz due to cancer diagnosis and after failures with Rituximab and tcz on restart after treatment, I was moved to baracitinib which worked almost immediately, having been off biologics for over a year I was in a pretty bad way. Even on baracitinib, bloods affected by small changes in Lef but kept with the mix. Cholesterol rose and 6 months in got shingles but was more stable. Was switched off baracitinib after 2nd covid jab as started flaring ( link ???). I was on it for about 4 years.
I felt good on the mix and tablets are so much easier. Havrix wasn't an option when I started but the risk of shingles is definitely there.
Good luck and a Happy New Year.
Hi I don’t know much about JAK inhibitors but wish you well. I was supposed to swap from Rituximab to Baracitanib in 2020 but at the last minute they found more lung problems Bronchiectasis on a CT so changed their mind to Abatacept instead. Hope it works for you x
I hope so too. Was your scan planned or did u have to have it because of yhe change of meds?
The CT was planned. I had been having them every 6 months for 3 years to monitor Lung Nodules found on X ray when swapping from Humira to Rituximab in 2017. The last CT showed Bronchiectasis but its only mild. I'm a bit complicated like a few of us on here. x
I started taking 2mg Baricitinib 6 weeks ago. After 17 years on Enbrel it stopped working and other biologics and steroids gave too many side effects so was started on the JAK inhibitor. I had tried going without anything for a few weeks hoping I could manage but I became completely immobile. The Baricitinib began to make a difference after the first tablet. It hasn’t worked 100%, probably about 85% for me. My hands are swollen and toes of R foot especially first thing when I wake up. This improves during the day with exercise. Minimal side effects so far with mild nausea in the beginning and the odd pain in my ear. I will have my bloods done in 4 weeks so hopefully they will be OK. I’m on a low dose statin to counteract any rise in cholesterol.
Several others reassured me about Baricitinib for which I’m grateful.
Hope it works for you.
Sorry to hear you’ve had a difficult time and hope the JAKs work for you. Sending gentle hugs.🩷 x
Hi Allanah,hope you get some relief on JAK's.I was on Tofacitinib,then Baracitinib they never worked for me.I 've been on several biologicals.I then tried Filgotinib which was great for about eighteen months.I have just recently started Upacitinib i still take Methotrexate injection also.I hope one of them will help you.How is your knee replacement doing?Happy New Year hope this is a better one health wise for us all.
Both knees done now !! Tbh they were awful painful and pretty much took a year each to recover but better than the pain and giving away that was going on before thanks xx I'm half expecting like all my previous treatments to try various ones. Was it a three month trial on them all you did before Doctor swapped them out of interest?
Happy new year allanah.
Sorry a bit late to this post.
Infusions didn’t work for me . I’m sero - negative and have very little or no response to biological meds with lots of side effects . I’ve tried 2 JAKs Baricitinib which worked well until first Covid vaccine and now on Uptabacitinib. I found both worked very quickly with no side effects. I’ve been on Uptabacitinib since July and just had my first flare since starting in July. I hope this is just a blip not the meds not working.
Hope what ever you start brings you some relief x
Thanks J. My infusions did work well for 4 years but I'm really glad everyone seems to be saying the jak inhibitors seem good. So I have a month just on steroids then rheuy telling me which one next month !Today dragging myself on a 2hour trip to see les miserables with Michael Ball and Alfie Boe before the snow expected here . Got accessible seats ad parking tho which will help. And it will take my mind off me !
Hope you get to enjoy it .
I have awful visions of you digging yourself out of the snow.🤣
Pain all over
Over done it again !
Infliximab infusions for RA
