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Rituximab - Biological Drugs

Hi. I have had RA for 12 years now and my consultant wants to put me on Rituximab. I am very concerned about the side effects of this drug, particularly as I have already had a heart attack linked to my RA. Does anyone have experience of this drug, good or bad, or are like me, worried about starting.

Thanks so much

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I had Rituximab last year, and have 3 or 4 friends with RA who have it too. We love it. It does take a whle for the infusion, but you are monitored all the while. My friends just felt tired afterwards, but after a couple of days, felt marvellous. I'm sure your consultant is aware of your heart attack and has taken it into consideration. Maybe this information might help. arthritisresearchuk.org/art...

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Thanks for taking the trouble to reply and your positive comments have been very helpful. I suppose we sometimes only look at the down side. Thanks again.

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I asked for the infusion to be slowed down as i felt ill with gastritis after first one and it really helped , i was also advised to double my omeprazole . I feel so much better on this treatment.

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Very grateful for your comments on the infusion and so pleased that you are better on this treatment.

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I had my second set of two Rituximab infusions last week. My first set was 6 months ago.

You have two infusions two weeks apart. The first one usually takes the longest up to 5-6 hours. The next one is usually faster depending on how you were on the first one. Before it starts you have your blood pressure, pulse, temperature taken. You're given paracetamol, then a cannula inserted into a vein then a steroid infusion put through, they add an Antihistamine injection through your cannula. You are regularly monitored, Ops taken throughout. Offered drinks etc. At my clinic they provide a packed lunch. After the steroid they put the Rituximab up. Starting off very slowly, depending how you managing they then speed the rate up. Then they put a flush through afterwards. Then two weeks later you have the next one.

Unfortunately I had a bad reaction to the very first one, came out in a rash covered from the top of my scalp to my waist. So it was slowed right down , took almost twice as long. But after, they started the next one very slowly and had no more problems.

It does make you feel really washed out and tired for a couple of days afterwards. But just rest and listen to your body. It took a while for the first set for me to feel any relief, then it wore off about 3-4 weeks before I had the second set. I do feel alot better this week and feel less stiff and pain. So fingers crossed after having two sets now my RA will ease. Fingers crossed.

I was on Mtx, Hydrochloroquine, Sulfasalazine. Before starting Rituxi my Rheumy dropped the Hydroxy.

I know a couple of people on Rituxi and it has given them their lives back. Others it doesn't help. But there are several Biologics your Rheumy can use/try.

Good luck, lovely. Rie

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I forgot to say I also have two heart conditions, SuperVentricular Tachycardia, and I have a Mitral valve regurgitation which my Rheumy team know about and my Cardiologist knows I have RA and the treatment I am on. So each department are keeping an eye on me very well. I can understand your worries though.. The best thing you can do is speak with them both and ask lots of questions. Good luck x Rie

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Thank you for taking the trouble over such a detailed reply, some of this information I did not have so I have printed out your reply. The responses so far have been so positive and I think have given me the courage to go down this road. Thanks so much again.

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I will be watching this thread with interest as I too am due to start Rituximab

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Good luck with your treatment too.

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Good luck 7Stiff & TTCC. Good advice given above and explained by Denise. I've been on Rituximab for three and a half years and it's been the most effective thing I've taken. I can move without pain and I have no inflammation or RA disease activity. It took effect fully after about 10 weeks and I started to feel better after 8. Never had an infusion reaction, but the biologics nurses are there to correct anything like that by slowing down the infusion. Also giving more antihistamine to counter any reaction to the infusion. I would mention that you usually get a Piriton/antihistamine tablet with the Paracetamol and the steroid IV just prior to the infusion. The only thing I can say is that I'm prone to sinus stuff and I'm not sure if Rituximab makes that happen more (seem to think others have mentioned this) as I've had a few more sinus issues, but that is something just to be dealt with even if annoying!

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Thanks so much for your reply. Such a lot of practical help over the infusion and so positive too about the benefits of this drug. I think it will help me to go forward and not look only at the down side. Thanks again for taking the trouble to write

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You're welcome 😁

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I'm on Rituximab and as help they slow mine down as usually feel not right good and I feel OK then it's very good but it makes me feel very lethargic and tired for 2days but I'm into my 3 year and it's been the best thing for me just waiting for appointment for my next infusion. I started having it 6 monthly for first year but am going longer now 7monthly.hope it works for you.

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Hi. Just had by second round for this year as I have it around that. I found after a couple of years there's not been any problem with administration. Ie slowing it down. It leaves me buzzing because of the steroids given first🐝🐝

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Thank you for taking the trouble to reply. Such practical advice too, as I did not know how I would be feeling after the infusion. All the replies I have had are very positive so this helps my decision making. Hope all goes well with your next infusion.

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I have been offered Rituximab. I had previously tried two other Biologics, one didn't work the other had awful side effects which took a long time to get out of my system. I think you have to make this decision yourself, I investigated thoroughly and found a huge amount of people really benefit from this treatment with very few/no side effects. I still can't bring myself to go for it purely because of my previous experience. I wish you well whatever you decide.

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Hi.. If there's a drug out there I will get the nasty side effects but funnily enough not with Retuximab. It makes a big difference to me. So far it's given 9/12 months apart and just finished this week.

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Thanks so much for your positive replies and I must say that most of the feed back has been the same. Have to make a decision as I am back to see the consultant in two weeks, but I do feel better about this drug after all the feed back from people who have actually taken it. Thanks again.

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Thanks for your reply and so sorry to hear of the problems you have had. I too have had many side effects with the previous tablet drugs which makes me worry when something is to be injected in to me. I go back to see the consultant in two weeks so I will have to make a decision by then. I have been off all drugs for over a year and as you can imagine I am not in a good place at the moment. I do appreciate your comments and so wish you well.

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I Submitted a reply (10am ish) ...but it doesn't seem to have appeared!

Has anyone seen a post re Retuximab from me this morning?

Briefly I was saying been on RTX since April 2016...no Nasty side effects.lhad RA 18'years..So far RTX best drug ever.

However I had infusion 6/11 & have developed the worst cold ever.

I have never had a cough or a chest infection...ever.Now I am coughing & sneezing for England.

I saw my GP after two weeks....who asked if I have the infusions every month (yeah...kinda scary) unfortunately Rheumy is on holiday,& Rheumy nurse non committal.

Has anybody else had such a reaction...or is it just a coincidence, & I have just got a bad cold that has lasted 3 weeks so far?

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Thank you for your comments on Retuximab. On the whole the feed back has been quite positive so helps a lot - back to see the consultant in two weeks!

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I have had more sinus issues and catahhr and have at the moment. Pretty sure it's the Rituximab. Hope you feel better soon.

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Thank you ....Yes I read the PIL more carefully & read that sinuses could be affected.

I have been inhaling all week & this morning I woke up without that dull face ache & no headache,

Think I'm on the mend!

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That's good! Mine is slow too but just improving now.

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I had my second round of Retuximab this week.

No problems at all Liked the steroids given beforehand as they give you a lift.

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Glad you've had a good infusion! Hope it's working well if you mean the second time you've been there for treatment since you started, or do you mean the second of the first time you've ever had it?

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Hi 7, I have been diagnosed with WG/Systemic Vasculitus Anca+ also with Mono-Neuritis Multiplex, Rheumatoid Arthritis, Epilepsy and Chronic Migraine Syndrome, as well as other problems nine years ago. From the beginning I was placed on Rituximab even though my rheumatologist had to fight tooth and nail for funding as I believe it cost between two or three thousand pounds per infusion. I can say I have had absolutely no side effects from this medication and it helps immensely though sadly does not alleviate the pain completely nor effects on my other non WG problems. I was originally put on four weekly infusions every six months but as my steroids took a better hold this has been decreased to two weekly infusions over six month. I should also point out I do have to take 10 Methtextrate (Chemo) tablets every Friday and gained a little weight I would far rather that than the alternative and if it works as good for you has it has for me why not try? you can only give it a go and if it doesn't work out try something else and hope that works. hope this helps.

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Hi 7,

Coincidences do abound! I had my first Rituxan infusion today. I had some of the milder side effects so far. My infusion appt was at 8:30am. They started by giving me 2 high dose Tylenol and a lortanidine (antihistamine) tablets. They let me sit for 15 minutes then they put in the IV and gave me methyl prednisone and Benadryl. They let me sit 15 more minutes and took my vitals and temp. They started the Rituxan extremely slow and checked my vitals every 15 minuets for the first 3 hours then every 30 minutes for the remainder of the infusion. The IV machine bumped up the dose every hour. I started with an achy feeling after the first hour. Then it bumped up and I started with Bone pain. The pain for me wasn’t that much more than my RA flare pain and the steroids they gave me corrected it quick. They gave me more meds to control the pain. My BP dropped below 98/76 to 94/70 at one point I was told that was due to the Benadryl. It came back up after the dose started to work out of my system. When the infusion was over I had to wait an hour before they would let me leave. I developed some tingling from my elbows to my hands and my neck and face. It is not painful and is slowly going away. If it doesn’t get worse than this as far as side effects are concerned I can do this if the medicine helps. I really hate this disease and want a more active life. I’m praying this helps. I have another infusion on February 8th an will post how it goes.

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I've been on Rituximab for a few years best thing they gave me really made a difference. When I have the infusion they

Have to slow them down as I feel very flushed and a bit queasy. But your monitored regularly and looked after buy the wonderful nurses through out your treatment. The only thing I really suffer with is the fatigue and dry mouth. Hope this helps as I was undecided if to have this but was best thing.

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