Sarilumab

[sabrejan]

Good morning i am currently taking baricitinib and it has stopped working. My two left fingers have gone numb for over 3 months. I can no longer write as I am left handed. It has normally been my right wrist that my RA is bad but now worse in left hand. Just had 3 steroids last Thursday one to right wrist, left thumb as I have trigger thumb now too and another to left wrist. The Rheumatologist now says that the baricitinib is no longer working and I have only been on this since January this year. I am so so fed up with RA all they advise is trying new medication. So far since 2017 I have been on methotrexate, leflunomide and sulph now they want to try me on sarilumab. I am so so down just feel like giving up what is the point RA takes over your body nothing seems to work. I try to keep positive but am starting to feel so depressed. On top of it my husband is very poorly has fibro, breathing problems, heart issues, depression and anxiety. How can I help him if I cant help myself. I was always the one looking after him taking on all his worries. He can no longer work as his health issues are getting worse. I still work 4 days a week, I love my job and worry that one day soon that life will even take that away from me. My job keeps me in touch with people as I am a people's person. I have been shielding since the start of covid and work from home which is working great. I just don't know what to do as I hate injections and sarilumab is an injection. My husband would have to do it as I have tried in the past and I just cant stomach giving myself an injection. Help I am so so confused just don't know what to do anymore. I mentioned taking baricitinib with leflunomide but Rheumy do not keen on this.

[sylvi]

They don't like you being on any other meds when taking baricitinib and that was the start of all my problems. I had a blood test which showed i had been in contact with tb, then 3mnths of antibiotics. I was on steroids at this time and i ended up packing the weight i lost back on. Then last year i started having breathing problems. There was a lot more, but i believe all this started when he put me on the biological. So sad to say they only like you to take nothing else while your on this drug darling.xxx

[sabrejan in reply to sylvi]

Makes sense now the barictinib has made me put weight on too and I'm full of gas and bloated all the time. Think I will have to try what they advise such a nightmare changing meds all the time and it will be injections which I hate. It must do all sorts to our bodies all these meds though not good x

[Hidden in reply to sabrejan]

Hi sabrejan,

I’m taking 4mg Baracitinib, I started it in August 2019 and I’ve put one and a half stone on in just over 10months without any change of diet and eating quite healthy, also like you full of gas and bloated all the time.

Unfortunately my RA doc run out of meds for me so no alternatives to take it atm 🤗X

[sabrejan in reply to Hidden]

Hi forgot to say I take audimol forte 120mg capsule. They are great to release the gas and bloating. Give it a go x

[sabrejan in reply to sabrejan]

Sorry the spelling is audmonal forte 120mg capsule x

[Hidden in reply to sabrejan]

Aww thanks sabrejan I’ll definitely give them a try 👍🤗X

[bernese1225]

Good morning Saberjan, your post has made me curious...I’ve been on Baracitinib 4mg since December 2017 and have managed to reduce prednisolone down to 3mg. November last year I was waking up and either one of my hands was numb, it was different everyday. It would take about an hour for the feeling to come back and when it did the pain was excruciating. My rheumatologist gave me a steroid injection in my backside which helped for about 2 month. The symptoms came back worse and my GP referred me to musculoskeletal who did a MRI on my neck. I have only just got the results due to lockdown. My GP has now referred me to a neurosurgeon who rang me last week to discuss my MRI results...although I have compressed discs that could trap nerves he doesn’t think my symptoms are coming from my spine. He has referred me for nerve induction studies on my upper limbs and thinks I may have Carpel Tunnel in both wrists which he said is fixable...fingers crossed. I am currently in so much pain, different fingers in both hands are numb and have limited mobility, I can’t grip anything without getting electric shocks shooting through my fingers, I have lumps in both wrists and I haven’t had a decent sleep since last November.

I have been on prednisolone for eight years without a break and developed the moon face and weight gain 3 years ago. Baracitinib has helped me reduce pred and I was living in hope that I would be able to lose the weight once off it. I didn’t realise Baracitinib can also cause weight gain 😟

[sabrejan in reply to bernese1225]

Hi yeah baricitinun does cause weight gain. I'm constantly bloated and full of wind all the time. I am waiting for the nerve conduction test too. The joys of RA hey. Leflunomide was great for me and I lost weight with that one. They say they don't want to add leflunomide while on baricitinib even though it worked better while leflunomide in my system when I first went on it. They are looking into it for me at the min so will wait to hear. Hopefully they get us both sorted. The numbness in our hands is due to the RA and the medication we are on not fully working, my three steroid injections have done nothing so far and I had the last Thursday. Have a good day and thanks for replying means a lot x