Rituximab or Baricitinib: I saw my RA consultant today... - NRAS

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Rituximab or Baricitinib

taximark profile image
22 Replies

I saw my RA consultant today after having a flare up in the last week, he has temporarily put me on prednisone for 4 weeks as well as my methotrexate, he has suggested I go on one of the above biological drugs but worried about side effects, can anyone advise or recommend either

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taximark
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22 Replies
AgedCrone profile image
AgedCrone

I can’t recommend..you should take your rheumy’s advice…but I have been on Rituximab infusions since 2016, & after 20+ years of RA they work really well & are a super convenient treatment

Madmusiclover profile image
Madmusiclover

love my Baricitinib. Easy tablet form. Can stop it quickly for operations/get an infection/Covid. I had the regulation 2 chest infections in first year and was unlucky enough to get shingles a year or so ago but no other ‘side effects’. It gave me my life back. Good luck whatever you choose. Pop the name of the drugs into the search to see other posts.

TheBoys profile image
TheBoys in reply to Madmusiclover

is it easy to get a different drug to Methotrexate?

Madmusiclover profile image
Madmusiclover in reply to TheBoys

I think most people have to go through the cheaper drugs first to see if they are effective/suit. Personally I tried the 4 regular cheaper ones and a biologic before ‘qualifying’ for a JAK: Baricitinib in my case. Take a look at the NRAS publication on medications. A free download from their website.

TheBoys profile image
TheBoys in reply to Madmusiclover

thanks . I ll have a look.

helixhelix profile image
helixhelix in reply to Madmusiclover

it’s not just that they are cheaper, the first line drugs offered for RA have a very long history of safety and effectiveness. They worked extremely well for me for 8 years, so perfectly happy with this approach as I was reluctant to move on to drugs that make me more vulnerable to infections.

It is good medical ethics not to give people more or stronger drugs than they need to deal with whatever medical problem they have. Most doctors will not prescribeanything unless they consider it necessary.

Madmusiclover profile image
Madmusiclover in reply to helixhelix

not the impression I got. One locum rheumy made me cry telling me as I ‘failed’ the first four she was ‘running out of options’ making me feel it was my fault I wasn’t tolerating them. I got an apology. It was of course all about money.

helixhelix profile image
helixhelix in reply to Madmusiclover

It is about money, but not exclusively. And NICE guidelines were loosened last year to allow people with moderately active RA to access some biologics. Why should the NHS (aka tax payers) pay more than they have to? The bill for Humira is upwards of £400 million a year.

I am totally against people being denied drugs on cost grounds, but evidence based treatment pathways are good management to me.

Madmusiclover profile image
Madmusiclover in reply to helixhelix

I’m not disagreeing and pleased you are happy with your drugs. The evidence was they did not suit me.

jezebel53 profile image
jezebel53

I know everyone is different but I am now in remission after starting Baricitinib 4mg daily 2 years ago, life is more enjoyable again for me.

cathie profile image
cathie

can those who take it say more about taking Baricitinib?

ponylover profile image
ponylover in reply to cathie

I took baricitinib for 18 months and was very pleased with the results. It is very easy to take in tablet form and no obvious side effects.I was then admitted to hospital with a perforated bowel and discovered that baricitinib was the cause!

I was immediately taken off it.

If you read the side effects it can causes bowel problems such as diverticulitis and perforation.

cathie profile image
cathie in reply to ponylover

that’s worth knowing about- thanks

Kags1068 profile image
Kags1068 in reply to ponylover

I'm really sorry to hear you had this happen. What an awful experience. I was admitted to hospital last November barely conscious with severe abdo pains, and was told it was suspected Ischaemic Colitis. Very scary. Thankfully it settled and it was discovered I had diverticulitis too. Since then, I have been told I have to avoid Tocilizumab, JAK inhibitors, and be careful with things like Humira (which I have been on since 2009). As I have eye complications too, I can't have things like Enbrel. I'm waiting to switch to Rituximab which apparently, is the best compromise for me apart from last resort Cyclophosphamide. I hope you can find something else that is "safe" for you. Best wishes. X

emmajj1971 profile image
emmajj1971

I went onto rituximab 4years ago it did take 18 months to work but it gave me my life back then covid kicked in and it was to risky to have the full dose so was put on baricitinib and Wham bang pain and all the bad stuff we get with RA was back so I went back to half a dose of rituximab through the pandemic and am now back on the full dose thankfully but what works for me might not work for the next person it's all trial and error the only side affects I get from rituximab is a headache for a couple of days and sometimes flu like ache for upto 72 hours after but not everytime

helenlw7 profile image
helenlw7

I can’t advise you but I can tell you of my experience. I have been on Baricitinib since February this year, after injecting biologics for 15 years. It started working quite quickly and I can actually move my hands! I haven’t had any side effects.

Annieb24 profile image
Annieb24

I have been on Bariticnib for about 6 months and I find it good. One of the benefits is that if you are feeling unwell you can stop it immediately. It has affected my cholesterol.

Amnesiac3637 profile image
Amnesiac3637

Baricitinib was my favourite and best of all the enormously long list I’ve been prescribed in the past. It worked within two days, I had no upfront side effects at all and for about two and a half years I was able to be pretty normal which, after 33 years of RA was a revelation! Then it stopped working as they seem to do with me - usually three years at most efficacy - and I was really sorry. In the interim have been on Tocilizumab which hasn’t suited me so will go onto Filgotinib.

The only thing the Baricitinib did was raise my cholesterol, as most of these drugs do, so probably will have to go onto statins. Hey ho.

Nobody knows though how these drugs will suit someone else. All the various posters on here for the drugs will have pros and cons. We’re all unique and react in our own way so it’s useful to hear other experiences but you can either be overjoyed or really miserable depending on your own circumstances and health status!

Deeb1764 profile image
Deeb1764

I have been on baritcitnib and had no side effects this was the first medication I took for RA that actually did not make me ill!

Madmusiclover profile image
Madmusiclover in reply to Deeb1764

ditto!

HilaryWB profile image
HilaryWB

I have been on Barcitinib for 9 months, has been a miracle drug for me .Like you I didn't want to go down the Biologic route but the usual DMARDS weren't controlling my RA. I do have raised platelets but not seriously so and have been totally pain free and no other issues with it.

I was given the choice of either Baricitinib or Rituximab, but my Respiratory Consultant I see (as I have Rheumatoid lung disease) told me there is a rare but fatal progressive neurological disease he has seen about 5 times associated with Rituximab and as it is an infusion, there can be no stopping and NO reversing of Rituximab's action if you get this dreadful disease which is ALWAYS fatal although rare. (Just Google Rituximab link to fatal disease to find out more)

He said go for Baricitinib as it is a tablet so can be stopped at any time which of course stops the drug acting at once. Luckily, I did as he suggested as I had to have surgery, so it was easy to stop the drug a week before and recommence it afterwards meaning I wasn't immunosuppressed while undergoing surgery which made my recovery much faster and safer. found Baricitinib has changed my life and recommend 100% you try it and NOT Rituximab. I hope if you try Baricitinib it will change your life as it did for me. Good Luck!

Knit12 profile image
Knit12

I was on Baricitinib which is JAK inhibitor and it was working well. One tablet daily easy. Unfortunately then I got a covid vaccine and it stopped working. Now I stop meds for a few days before and after I get a vaccine. Then I was moved to Tofacitinib which didn’t work and finally to Upadacitinib and success. They are all JAK Inhibitors and daily tablets. They come with a black box warning which is scary to read, but what is the alternative. Incidentally Upadacitinib has been a great success for those of us who can’t tolerate a lot of drugs. It only came out less than 2 years ago and has literally been my lifesaver. Hope you get sorted, but I would always try baricitinib and see how it works with you

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