Rituximab questions

[Wyllow]

Hi everyone, I have been on Methotrexate, Mycophenolate Mofetil, Prednisolone and many others for the past 2 years for Vasculitis GPA. My ANCA level was down to 0 having been >177, over the past 6 months though my ANCA level is 30 and symptoms are coming back, my rheumatologist wants to try me on Rituximab. My questions are; can you drive yourself home after the infusion, can you come off the other medications after the Rituximab starts to work (I’ve read this can be six weeks), and has anyone had bad side affects (the list is quite frightening- as it is for all the medications I am currently on). Thanks in advance for any responses

[eh66]

After by diagnosis I was given very high does of prednisolone which tapered to zero after 3 months. At the sametime I was given two was given rituximab and cyclophosphamide infusions about two months apart. I also had 2 kidney biopsies. Since then I have 6 monthly rituximab infusions. My consultant has now decided my stats are good enough to end all infusions. I have to a take a maintenance dose blood pressure and statin pills.

Regarding the infusions; yes I have driven home after them. Before they start you you get paracetamol and antihistamine. I would take some food, books, water, phone - it's pretty boring. It generally takes 6 to 8 hours, Only once did I have a side effect, when my blood pressure dropped a bit - they monitor you during the process which starts slowly and is ramped up over the 6 hours. I would suggest if you can get a lift the first time, it may be for the best or put someone on alert to fetch you if you're feeling light headed or something.

[yogarita1955]

morning yes you could drive home and you can come off some medicines I'm only on 6 steroids daily it's been a miracle for me don't hesitate

I was very nervous I'm now so glad I had it take care 🙂

[Mooka]

I would have someone take you home after the first infusion. It will take 6-7 hours and you may feel sleepy after the antihistamine. I started getting chest infections after I started rituximab. About 5% of people on it get low immunoglobulin levels and I’m one of them. I now inject immunoglobulin weekly. I don’t take any other medication for vasculitis although I understand the immunoglobulin can help keep it in check. My last infusion was over six years ago. If I had my time again I would still opt for rituximab. Do take a book or puzzles to do whilst having the infusion though. Good luck.

[Mooka]

Some light reading for you

ancavasculitisnews.com/news...

[Wyllow in reply to Mooka]

Hi Mooka, I’ve read the article, very clear and concise, Rituximab does seem to be the superior treatment even with the rate of relapse, thanks very much for the link

[Wyllow]

Thanks very much everyone for your advice and comments, all really helpful! I’m glad Retuximab has helped you. I am really nervous about having it, but I have lots of side effects from my current medication so will be really happy if I can stop taking some of them. Not sure when/if I will be suitable for it, I have lots of bloods being taken next week to check. Mooka, good the immunoglobulin is helping you too. Best wishes to everyone and thanks again

[trijaws]

All good questions for your rheumy.But, you definitely need someone with you to drive you home. Ritux is just about the best there is, but has it's own side effects. It got me in remission for six years now. After 1st year of treatment, my numbers stayed level.

[Wyllow in reply to trijaws]

Thank you trijaws, great you’ve been in remission for six years, hope it works for me if my rheumatologist proceeds after bloods

[sorefeetsoldier]

Hi wyllow,

I received my first and second infusion of retuximab in January for my condition, all was good until I got covid twice and that has been my main concern, I would recommend rituximab. And after 6 months it will be time for third infusion and by then you will know if you have benefited from rituximab.

It was a hard decision for me too ... They had been trying to give to me for about 7 years before I gave it a go.

Hope you feel better soon 👍. Regards

SfS

[Wyllow]

Thanks for the info SfS. I’ve managed to avoid Covid so far, sorry to hear you’ve had it twice!

[Galaxy2]

Hi there, sorry to be joining the conversation late.

I was on mycophenolate too for years before rituximab and it just wasn’t quite enough for me to really get my symptoms fully under control. I was very nervous about having rituximab initially because of the potential risks but it did change my life as it made such a difference to me. I have been on it for years now and it has more recently caused me infection/suppressed immune system issues, however the hope was that the rituximab wouldn’t have been needed for so long in my case.

I would say I’ve never regretted going on it as it gave me a quality of life back.

They do monitor you very throughly while you are having the infusions which is reassuring, I have mine very slowly compared to others as I can feel unwell otherwise.

Good luck if you go ahead!

[Wyllow in reply to Galaxy2]

Thank you Galaxy2, glad to hear it helped you initially, but sorry you are having issues now, I hope they can help you with that. It does seem to be the next step for me as my current mix of meds aren’t working as well as they did

[Galaxy2 in reply to Wyllow]

I was the same before rituximab, my immune suppressants weren’t working well enough and I was relying on predisolone at too high a dose every time my symptoms flared.

It’s all difficult to know what to do for the best at times, weighing up risks against benefits. Good luck

[Hidden]

Hello Wyllow. I am in the US. I was DX in 2017 and could not have Rituxan initially because of another issue I had at that time. My GPA caused kidney failure and it was a nephrologist that DX me and has been managing my disease treatment ever since. He started me on Prednisione and Azathioprine for the first 8 months after DX and it worked very well for me in bringing the disease under control. Once I was cleared to have Rituxan, I went through two 4 week sessions in April and August of 2018. It was not bad for me. I drove myself to the infusion center and back home. They gave me Tylenol and Benadryl before the infusions. On the very first infusion, I had a bit of swelling in my throat so they stopped the flow, gave me more Benadryl, waited 15 minutes, then started the flow again. That was the only incident I had. The infusions took about 6 hours in the beginning but once they saw that I tolerated it well, they sped up the drip and got it down to 4 hours. I did not have any side effects from the Rituxan that I could tell. I usually went home and napped for a while after the infusions but other than that, I was okay. It does kill a lot of your B cells so you need to watch for infections but I think the medicine is a life changer and would recommend it. I've been in remission since Sept of 2019. That's when I stopped the Prednisone and Azathioprine and have not had any GPA medicines since then. My nephrologist does not believe the maintenance Rituxan every 6 months is necessary and says that Rheumys get kick backs for using it so that's why they prescribe it. Good luck to you. Hope this helps.

[Wyllow in reply to Hidden]

Hi LLWegeners, thanks very much for sharing. Good to hear Rituxan worked for you with no noticeable side affects and that you were able to eventually stop the GPA meds. It’s very helpful to hear how people have coped with it.

[Johndeeregreen]

Wyllow,

As others have stated, go for it! I'm on year 2 after being dx, and several Retux infusions over the last 2 years. I was in remission after 1.5 years, then a small flare. I think I'm back in remission. My methotrexate is the only med that I really feel the effects and it's not bad as long as I'm no on the top dose of 9 pills. After infusions start working, by numbers come down to normal levels, but looks like I'll need some dosage for life, but that's ok if it keeps me living and working. I just did my second trip out of the US to Scotland and no problems. The infusions do drop our immunity even more, so masking is just a part of life for me in crowded settings. But, I like to hike and run, so no people there. Hang tough.

[Wyllow in reply to Johndeeregreen]

Thanks Johndeeregreen, glad to hear it’s working for you and keeping you well. I feel a bit more confident to hear it’s working for others

[Investigator1]

Hi Wyllow. I have had 6 infusions of Rituximab, I will stress to you “get somebody to drive you home” I tried it once and had a bump in the hospital car park. It was down to the way the treatment affected me, no doubt! My ANCA like yours was 177+ and after Cyclophosphamide, Azathioprine didn’t do it for me and mine started creeping up. I can’t say there aren’t side effects with Rituximab for me it’s in 2 phases. For the first 6-8 weeks I get tired and also have to watch my sodium levels as I can feel faint sometimes and get a few body pains but that’s about it then the next 4 months or so feel quite normal. I had my last infusion beginning of May so I am now in that zone. We are all different, some people have other types of side effects some don’t get any. I went to the Czech Republic for a holiday in May, 1 week after my treatment and then a fortnight later went to Rio de Janeiro but had a couple of dodgy days. It is a good treatment though . Take care and hope it turns out ok. Nick.

[Wyllow in reply to Investigator1]

Hi Nick, thanks for letting me know how you get on with Rituximab. I have half made up my mind I will have the treatment but need to have a proper chat with my rheumatologist once my bloods are back if I’m suitable for it. Glad to hear you felt well enough to travel after your treatment, I’ll definitely get someone to drive me the first time

[JM1961]

Hi Wyllow. I am about to have my first Retuximab infusion this week. Will let you know how it goes. I was diagnosed with GPA a year ago and am on Prednisolone and MMF (the MMF and previous Azathioprine played havoc with my white blood cell count hence the switch to the infusion). I am heartened to read other experiences of it which generally appear quite positive. Onwards and upwards.. oh, I plan to drive home afterwards.

[Wyllow in reply to JM1961]

Hi JM1961, good luck with your first treatment, the experiences shared here do appear quite positive! I hope the treatment works well for you, and yes please, do let me know how you got on, thanks! And take care driving, I hope you have another way home if you don’t feel well enough

[Investigator1 in reply to Wyllow]

Hi again JM1961 and Wyllow. I thing sometimes you have to look going forward and think “I would like more certainty” and Rituximab ticks this box. You have your infusion and forget about it for 6 months. You also learn about your body as time goes by. I have to admit Guys after my first infusion, I had one or two little niggles like sore throat, minor joint pain, among others and I became a right drama Queen, it must have driven my wife mad. My wife said to me “record everything and make a note of how far into the treatment” so after the second infusion I did and recognised these niggles as Rituximab associated rather than something else more serious. The general rule being my bloods were fine so you will live a near if not normal life. I am with you both all the way so don’t hesitate to get in touch with somebody who has been there. Nick.

[Wyllow in reply to Investigator1]

Hi Nick, thanks very much for this. I also keep notes on what is happening to me and when, I find it very useful. Thanks for the reassurance, it would be great to get more back to normal

[harris1629]

Hello,

My husband has Vasculitis GPA, and not unlike yourself, for the last 2.5yrs. His treatment initially started with 6 pulses of cyclophosphamide followed by oral then injectable methotrexate, always with a background of prednisalone which he could never seem to drop below 10mg/day. Then last November he received his first Rituximab infusion (x2 infusions over 2 weeks). At the point of having it, he drove himself to and from the hospital with no ill effect, this is because we were told that it would take 12 wks to become effective and for this reason to continue on his current medication. As he loomed towards his 12 wk date he became so Ill. Initially we thought the Rituximab could not be working. We were gutted as we’d always read that Rituximab was the ‘gold standard’ in terms of treatment and we felt this was going to be his miracle cure. However, it turned out he’d contracted fugal infections in his lungs as a consequence of his immune system being hit by the medication which is always a risk with GPA treatment. After this spell of ill health though I’m pleased to say his GPA symptoms have improved significantly. Since March he hasn’t taken any immunosuppressants and he’s reducing his prednisalone in 2 weekly blocks.

His rheumatologist does want him to recommence mycophenalate at some point but at present he feels better than he has felt since diagnosis. And there is also some talk of a top up dose of Rituximab at some point. He is not out of the woods yet, but we are definitely on an ‘up’ on this rollercoaster of an illness and would definitely recommend it. Be very mindful as you approach the 12 wk mark of your susceptibility to infection as you become increasingly immunosupressed. My husband was just unfortunate I’m sure.

I hope this helps and equally hope Rituximab works for you. All the best xx

[Wyllow in reply to harris1629]

Hi harris1629, thanks so much for sharing your husband’s experience, I’m glad he has recovered from the fungal infection and is overall improving. It’s good to hear that he’s been able to currently be taking no immunosuppressants and is reducing the prednisolone. And thanks for letting me know he was able to drive himself for the treatment x

[666s]

hello Wyllow - I am currently in the waiting room for my first Rituximab infusion. Like you I’m apprehensive but as Azathioprine seems to have stopped keeping me in remission this seems like the best solution. I opted to get the train in case I’m too tired to drive but I can let you know later how I feel.

[Wyllow in reply to 666s]

Hi 666s, good luck with your treatment! I hope it all goes smoothly. Yes, please do let me know how you get on, all the best

[666s in reply to Wyllow]

Hi Wyllow

My first Rituximab infusion yesterday seemed to go well. Two things to note for me - I was in the hospital over 7 hours but it did fly by as the nursing staff check stats throughout. I never really got chance to watch my preloaded iPad at all but dozed and read a little. Secondly my blood pressure was low all day and I was pleased to have company to get me on the train home and to not have driven. I was in London though so train was the easier option. No ill effects today thankfully but tired. Best of luck with your decision and outcomes

[Wyllow in reply to 666s]

Hi 666s, glad your infusion seemed to go well and I hope you get no ill effects, and hope your blood pressure is back to normal. 7 hours is a long time, glad you had someone to accompany you to the train. Thanks for letting me know how you got on. I haven’t heard back yet if I’m suitable or not for the treatment, guess it will be a while as my rheumatologist has to get the results of my bloods and then discuss with the hospital team, best wishes

[Chuckymeg in reply to 666s]

Don't wish to unnerved you but have you learnt all about what this infusion can cause ? Regards xx

[666s in reply to Chuckymeg]

if not to unnerve why reply Chuckymeg?

[JM1961]

Hi Wyllow. My infusion on Thursday went fine. 8hrs in all, but that was because they had to wait for blood results before starting. If you do have the infusion try to have your blood test the day before. Then the infusion will be around 4-6hrs. They hit you with 30 minute doses with your stats checked each time. Like 666s my blood pressure was low all day. Have stopped taking MMF and tapering Pred to alternate 5mg then 10mg daily. I drove home (about 1.5hrs). Was okay but did feel a bit drowsy for the last few miles. Generally looks like the pro’s outweigh the cons for Rituximab, but there are side effects with every type of medication. Let us know if you do go ahead and good luck..!

[Wyllow in reply to JM1961]

Hi JM1961, thanks so much for letting me know how you got on. Good to know about the 30 minute doses. I’m glad it all went ok and hope your blood pressure is back to normal. And thanks for letting me know you were able to drive home. I will hopefully hear from my rheumatologist soon. It’s been really helpful hearing everyone’s experiences, will let you know if I go ahead and how the treatment goes for me

[Deiseboy]

Hi, first time posting on here so apologies if this has been covered previously. I am due my first infusion of Ritumab this Thursday and am interested if anyone else has had this treatment for scleroderma. If you could share your experience and outcome I would really appreciate it.

[Electra1]

Hi Wyllow, rituximab was a game changer for me. I was really ill and had come to the end of all other therapies to stop my vasculitis. I was one of the first group of people to have rituximab to treat vasculitis in UK. It put my disease into remission but also permanently destroyed my body's production of B cells so now I am immune deficient. I need an infusion of blood products weekly. Rituximab is a brilliant drug, but the length of your therapy needs careful monitoring. Despite this horrible situation I'm in, I'd still have rituximab. There were no side effects during transfusion and I drove home 150 miles afterwards. It was a life saver. Best wishes for your therapy.

[Wyllow]

Hi Electra1, thanks for your reply, I’m glad Retuximab worked for your Vasculitis but sorry to hear you now need weekly blood product infusions, that must be hard. My rheumatologist has consulted with another team and they have suggested my methotrexate is fighting against my mycophenolate so have taken me off the mycophenolate for 3 months to see if the methotrexate becomes more effective, so I’m still waiting to see if I will have the Retuximab. All the best and I hope you stay in remission