Rituxan

[GinnyMa]

Just diagnosed with vasculitis, but first was on prednisone for PMR, which I guess can mimic vasculitis. Now doctor wants me to take Rituxan and taper off prednisone. Looked up side effects even though the doc said not to do that as it was very safe. 🤬 Looking for any advice from anyone with experience with Rituxan and also with coping this disease that I had never heard of.

[Grizzly-bear]

I had rituxan (also called rituximab) as my induction therapy when first diagnosed alongside cyclophosphamide and Prednisolone. I was in renal failure due to the vasculitis amongst other things. It’s worked wonders for me. I’m going to be starting in Azathioprine as my maintenance medication which I’m more nervous about than Rituximab because I know more people have side effects with it and rituximab worked so well for me that I’m nervous about switching to something else.

They’re really careful managing the infusion. They go slowly initially to check you’re ok and gradually speed it up. You’ll also get piriton and paracetamol beforehand and they frequently monitor your blood pressure. Any sign of a reaction they’ll stop the infusion. I luckily had no problems getting mine.

[GinnyMa in reply to Grizzly-bear]

Thank you for sharing your experience. It encourages me.

[artists]

After various medications l went on to rituximab. I have no problems with it and feel so well after treatment.

[GinnyMa in reply to artists]

Thank you. Good news to share.

[Galaxy2]

I remember reading about rituximab/rituxan before I had it and really worrying about it but it has been a wonderful medication for me, made such a difference to my health . The downside is it will suppress your immune system but from what I gather reactions /side effects are very rare

[GinnyMa in reply to Galaxy2]

Your experience relieves my worries. Many thanks.

[Investigator1]

Hi GinnyMa. I was on Cyclophosphamide and Prednisolone after being diagnosed with GPA as initial therapy and nor on Rituximab as a maintenance therapy and it’s worked so far for me. The main thing was getting steroid free which I achieved last year in July after 18 months. My adrenal gland got a bit lazy to start but is much better now. I do have a few side effects but they are short lived and only last a couple of days. They include body pains, hips mainly, back. Itchy skin, short of breath but mild symptoms and blood tests always good. I have got used to it now and live a normal life apart from being CEV and careful.Nick.

[GinnyMa in reply to Investigator1]

Hi Nick. About six years ago I had GCA and learned the fine art of tapering thanks to the PMRGCAuk branch of this site. I was recently diagnosed with PMR but had results of renal biopsy and a definite diagnose of Vasculitis. My doc said it is very rare and in the USA there are less than 900 cases out of a population of 330,000,000! Wow! Your reply makes me optimistic! Thank you!

[Investigator1 in reply to GinnyMa]

Hi Ginny Ma. Anything to help. I have 3 monthly infusions of Rituximab and have done 3 and my Specialist reckons another 3. We are all different of course but you do kind of get used to side effects just coming on. I was told to keep a diary of side effects and after my second infusion it really helped because Rituximab sometimes (weirdly) can replicate the original condition. At first I was thinking “here we go again” but the bloods told the opposite so I now have a lot of comfort saying to myself “I know that’s the treatment, got the T-shirt. You will get used to certain odd aches and pains just coming on and then going in a couple of days or so. Nick

[eh66]

When first diagnosed, I had rituximab and cyclophosphamide with daily Prednisolone 90mg down to 0mg in 3 months. They give me antihistamine before stating the transfusions and ramp up the rate over about 6 hours. The only side affect I have had is a drop in blood pressure during the transfusion. I am now classed as in remission, on 6 monthly rituximab transfusions (for next 18 months) plus daily Atorvastatin and Ramipril (to prevent relapse), and Co-trimoxzole (to prevent sinus infections).

[GinnyMa in reply to eh66]

Sounds like you were well monitored during the infusion. Makes me optimistic to get rid of my fear of Rituxan. Thanks!

[jgold]

I was on Azathioprine as maintenance drug, with a fairly frequent need for Prednisolone in response to flares (MPA - microscopic polyangiitis - mild renal damage). The consultant was unhappy with the frequency / amount of Prednisolone as it was causing bone-thinning. He therefore replaced the Azathioprine with Rituximab. Since a second dose of Rituximab in May 2019 I have had several flares, but they have all resolved themselves within a maximum of two weeks and without causing any more kidney damage. I have therefore been free of all vasculitis medication for some 32 months. The two Rituximab infusions went without a hitch and no side effects. So Rituximab has made me a very contented vasculitis patient. Of course we are all different, and not everyone on Rituximab will be as fortunate as me.

[Mooka]

Hi GinnyMaThe first thing you should do is visit the vasculitis U.K. website which is a mine of information. A visit to the Lauren Currie twilight foundation trust website is also worth a visit. Knowledge is power over your illness. I had cyclophosphamide as my induction therapy before switching to rituximab which worked a lot better for me. I’m now in remission and have been for a few years. I have picked up a lung disease on route which is managed and rituximab has robbed me of my immune system. That said any immune suppressant will make you more prone to infection and you will need to jump on this quickly. The rituximab infusion takes a few hours so take some music and book or magazines to pass the time. Do let us know how you get on and try to keep away from dr Google. X

[GinnyMa in reply to Mooka]

Dr. Google…ha,ha! Information is power! I have been on this site since I discovered it in 2015. I have bronchiectasis and on the Lung site, have had GCA and am in the PMRGCAuk site and now the Vasculitis site. I have found nothing as informative in the USA and appreciate all the information here.

[Mooka in reply to GinnyMa]

I have Bronchiectasis and was told it’s a result of the vasculitis and the chest infections since being immune suppressed. You should keep some antibiotics on standby when you’ve had your rituximab and also discuss the timings of your vaccinations and infusions. Good luck.

[Dancerina]

My son has GPA but in his brain, not kidneys. He had several Rituximab infection six months apart. He did not have side effects at the time. The hope was that he could taper off the prednisone. He felt better, but MRI showed inflammation retuning despite the treatment. Also, it killed his B cells, and they have not come back nearly two years later. He had no response to his Covid vaccines. Now he is on Cytoxan (which they were trying to avoid) and on his next prednisone taper. Eventually he will go on a different infusion.

[GinnyMa in reply to Dancerina]

IT sounds like a worrisome situation for a mother, Dancerina. Thank you for sharing.