Rituximab

[Ladyfairfax]

After all my problems with Methotrexate (which I have talked about previously)I am now quite concerned about my next step which is Rituximab infusions.Has anyone tried this?Obviously this is to replace all the other medications that I am taking ie Azathioprine,Hydroxochloroquine and Prednisone.The steroids are actually playing havoc with my body,having gained an enormous amount of weight around my middle,my neck and my face ,also hearing loss ,hair loss and sight loss.I am concerned as to what to expect with Rituximab???

[AgedCrone]

Just expect to feel very much better.

I have been on Rituximab now since 2016 , having previously been on Methotrexate.

I started Rtx on the usual one infusion two weeks apart, every six months.......I am now down to just one infusion every 6/7 months. Quite the easiest drug to cope with.

I only have Rtx, no Mtx, nor steroids..but you will need to talk to your rheumatologist about how it will be prescribed for you.

I think it took about three months to fully settle down & I have had no nasty side effects.It has been all good news.

I hope it suits you as well as it does me.

[liveinwoods in reply to AgedCrone]

I live in the US. Have previously had Orencia and Remicade infusions. Started Rituxin infusions 9 weeks ago. No improvement yet! Still hoping!!!!.

[AgedCrone in reply to liveinwoods]

Hang on in there....as long as you aren’t having any seriously unacceptable side-effects it’s always worth carrying on.....Many times I argued with my rheumatologist ....this drug isn’t working ....and was persuaded to try it for just a bit longer and sure enough he was right. But it might mean a stiff upper lip for a while.

Fingers crossed it soon works for you!

[liveinwoods in reply to AgedCrone]

Thank you for your support! I will continue to hang in there and hope for the best. I have a great support system at home- a husband who listens when I complain and two lovely daughters who check in with me regularly. I am blessed!

[AgedCrone in reply to liveinwoods]

You surely are......except living alone..... I can spoil myself and stay in bed reading ‘till lunchtime if I feel like it ....I don’t feel I have to make the effort to get up & get moving.🚲

[liveinwoods in reply to AgedCrone]

I understand what you say about living alone. There are benefits to being able to just please yourself!

[Lolabridge in reply to liveinwoods]

I agree with AC that you may find a huge improvement if you wait a few more weeks. I think it’s often suggested that after 12-16 weeks is when most people really feel the benefit. I hope it works for you as well as it has for AC and me. 🤞🏻

[liveinwoods in reply to Lolabridge]

I am glad it works for you. This gives me hope!

[65_women in reply to AgedCrone]

I take Rituximab going for my 3rd time next month a very easy drug that helps so much.But I have problems sleeping I think it may from the Rituximab. Does anyone have this problem? If so what do you take for sleeping?

[AgedCrone in reply to 65_women]

No Problems sleeping at all been on Rtx since 2016 and have had no problems at all.

[Ladyfairfax in reply to 65_women]

Thanx for your encouragement! I take Amytryptilline for sleeping, have done for years, firstly for migraine then Fybromyalgia and now this! Highly recommended!

[AgedCrone in reply to Ladyfairfax]

Not for me...it gave me nightmares...& I only took half the dose I was prescribed .I will stick to my trusty glass of Red.

PS I am honestly not an alcoholic! 🍷

[KittyJ in reply to AgedCrone]

Cheers AC 🥂

[Ladyfairfax in reply to AgedCrone]

Thanx for your encouragement, I know it's trial and error but as long as I have a spark left in me I shall persevere!

[Hisue]

I had first rtx infusion/USAfor 7.5 hrs, 6 wks ago. Consequently, I have such extreme fatigue & joint-muscle pain, I am pretty much bed-ridden. Can’t try another new med until this wears off in 4 mths!

[AgedCrone in reply to Hisue]

That is very unlucky...... it took me 16 years to find rituximab and I’ve had the best five years of my life RA wise since.Let’s hope whatever your doctor next prescribes is more successful.

[Hisue in reply to AgedCrone]

Yes- wish there was a better way than trial & error w/RA meds. I don’t know why my rheum picked this. Glad it worked for you.

[Lolabridge in reply to Hisue]

If it’s only 6 weeks since your infusion (was that only one or two infusions you’ve had in the cycle) you may need to wait a few more weeks to notice a real difference. After being in a terrible state like you mention, I was improving after 10 weeks and by 16 was able to function almost normally. And with the second cycle (6months after the first) there was even more improvement. I was then able to start to reduce the Prednisolone very slowly.So do give it a few more weeks before you write it off as not working for you. And if you were only given one infusion and not a second 4 weeks later, ask your consultant if having the second would make a difference for you.

[Hisue in reply to Lolabridge]

Only rec’d first dose of rtx. I am so weak rheum stopped 2nd. I feel like I’m at the end of the line.

[Lolabridge in reply to Hisue]

I’m sorry you are suffering like that. I see that you posted previously that it appears there maybe an underlying medical reason that your Rheumy stopped you from having the second infusion. I hope there’s an alternative plan being worked out for you. Perhaps, some Prednisolone to tied you over in the meantime, if you have no problems with taking it. Or some steroid injections. I do hope you get some relief soon.

[Hisue in reply to Lolabridge]

Yes, I don’t think rtx was the best choice for me with my red blood cell issues going on. I try to ask USA drs educated questions, but it is not working for me. There were about 8 other choices that probably would have been better. Plus, the 1 rtx infusion cost $30,000- paid for by my insurance. I am taking pred but it doesn’t help much & joint damage continues. Thank you for the info & your kindness. Don’t mean to discourage others.

[AgedCrone in reply to Hisue]

Do you know 6 weeks is nano seconds for Rtx....it could still work for you.Be optimistic.....look after yourself.....but don’t just take to your bed.

I have often had to force myself to move when I really felt like staying under the duvet.

RA is a 50-50 thing you know......we have to meet some of our drugs half way....& kick back.

If you read back over old posts.... you will find quite a few incidents where somebody had almost given up, then they made that one last effort and they are now dancing till dawn!

[65_women in reply to Hisue]

Give it time the first time I took it ,took me 3 months.

[Neonkittie17]

It has been the most effective RA med I’ve taken since 1995. I’ve been on it since April 2014. I can sometimes go to 10-12 months before repeating. Usually it’s around 8-9 months. It took 8-9 weeks to work and then mobility was so much better and general well-being and my CRP and ESR have been exactly as they should be (under 5 to zero) and all blood tests fine so it hasn’t had any effects that way. I do get sinus and chesty issues every so often but I think a lot of people on biologics can have these issues caused by background immunosuppression. If I switched to another biologic I could still get the sinus etc. Major side effects are generally rare I was told for Rtx. I hope it works very well for you. I was on Prednisilone just before Rtx and it played havoc with my face weight and body weight and morale. You’ll be able to wean off that I’m sure soon with the help of your rheumy on a good withdrawal plan. Good luck. 💗

[Ladyfairfax in reply to Neonkittie17]

Thanx!

[Lolabridge]

It is my wonder drug! I have not experienced any side effects and it has finally got my very aggressive and sero positive RA under control. After the first cycle of two infusions I recall I noticed small improvements after about 10 weeks but by 16 weeks I could really feel the difference. And with each additional cycle the improvement has been cumulative. Like AC I’m not on MTX with it but still tapering off Prednisolone (down to 5mg a day now) and hope to get to zero. The time interval between infusions can be 6-12 months and you may find you can stretch it from 6 after the first few.

I agree with everything AC has written and really hope it will work for you too. Go for it!!

[Ladyfairfax in reply to Lolabridge]

So happy to hear!!

[Angels54]

Hi had my 1 st infusion in 2019 sorry to say it didn’t work for me , however, there were people who were having their second lot and said it helped , I’m now on a biological injection, it’s all trial and error.Good luck

[GranAmie]

Yupyup, been there etc etc;, steroids had helped PMR [b4 Rheumatoid appeared some 14+ yrs later] but battled to get weight down by cutting down carbs, little fruit, little alcohol. MTX caused big probs but Truxima, a biosimilar to Rituximab has been really good after I lost my fear of it which made me apprehensive of the 1st infusion !! So good I bam manage on a yearly dose rather than every 6months. Lockdown meant it was 18 months b4 I was offered an infusion so was in some pain but bearable... getting my 2nd shorter infusion tomorrow. Iwish you the very best and hope it works well 4u.

[GranAmie]

ps [always forget something LOL.. started breadmaking in lockdown, then cakes... bad idea but following Michael Moseley's ideas have lost the 5kg gained, over a 8 week stretch, I think you may get hisprogrammes via catch up? x

[emmajj1971]

I've been on this about 3 years now 2 infusions 2 weeks apart every 6 months it took until the 3rd round so 18 months for me to feel the full benefits of it but it's the best I've had it was my 5th biologic to try and I had some nightmares with the others. I would say don't worry give it a go you have nothing to lose and if it works it will change your life for the better xx

[beeckey]

I had no problems with it no side effects it just did not work for me but it has worked for lots of people so give it a go and you will fell so much better.Best of luck

[rheumatoidsewer]

I find it does take what seems like ages to take effect. If you are in pain and exhausted it can seem like forever but hang on in there because when it finally starts to work you will realise what all the positive feedback was about - some days can be almost normal for me. This treatment has been successful for so many people thank you to the scientists who made this possible. Covid has made me realise how much good those working on treatments in labs in the background actually do how much suffering they relieve. These are the people who should have knighthoods and congressional medals not self promoting pop and sports stars in my opinion.