Insights into ANCA vasculitis Tx, etc - Vasculitis UK

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Insights into ANCA vasculitis Tx, etc

irishponies profile image

I was "officially" diagnosed by tests, surgeries, biopsies, exams, labs, etc. in fall of 2021. At that time, Specialists' review of past 5 years of my history show symptoms of undiagnosed ANCA-vasculitis, diffuse systemic scleroderma, connective tissue disease, Hashimoto's, Raynaud's, hearing loss (right ear), GERD, CREST, lung fibrosis, heart issues, truly amazing skin infections, etc. Joint pain had been treated with steroid injections, celebrex, for YEARS and did not lessen. In early 2021, I was told "There is nothing wrong with you, see a psychiatrist." Best advice ever because the psychiatrist sent me to specialists and a diagnosis was made. After 25 weeks of 20 mg methotrexate wkly and 20 mg prednisone daily, the diseases are not in remission and have progressed. Recommending rituximab. Side effects on company web site sounds horrific but support groups seem to not have side effects or no where near what is reported for RA, etc. Thank you for any insight you may have into rituximab.

18 Replies
John_Mills profile image

This leaflet from Versus Arthritis explains all about Rituximab if it is helpful

Thank you John. I'll read it now.

Side effects can happen during the infusion but you’re monitored very very closely for blood pressure and temperature. They’ll stop if you have any reactions.

From my reading the biggest side effect is being prone to nasty infections. I’m on Co-trimoxazole to prevent certain bacterial infections but I’m totally shielding to avoid covid and other infections. Unlike tablets where you can stop to try and lessen your immune suppression if you get an infection or go for surgery, rituximab will keep you immune suppressed for at least 6 months t a year. I get 6 monthly infusions. For me I’d rather keep vasculitis under control and pay the price of having to shield but everyone is different with their own risk assessments

Thank you. What is "shielding"? Also, if I even get a simple scratch on my body, say my calf, the infection is 200 times the size of the scratch, there is massive amount of cottage-cheese consistency brown serum, and great swelling. It always requires hospital treatment, lasts for months, and leaves scars (for a minor scratch). So the idea of ANY infection is terrifying as I already have this reaction to minor scrapes. I have frequent bouts of pneumonia, ear infections, and nosebleeds/infections. The infusion reaction while being monitored is NOT the issue at all. The extreme side effects list given to me by rheumatologist (4 pages) and the group's comments of "no side effects" have me confused as to what I prepare for POST infusion and after the close monitoring. I understand the list of side effects is a list of possibles. That is what I am asking about because some comments say "no issues after the infusion". I live alone and must prepare alone to take care of myself alone. All of my family lives 1500 miles from me, I moved for work and then got sick/diagnosed and am stuck here. NO SUPPORT SYSTEM. (I am now out of work, too sick.) So I need to prepare for side effects, there is no one to run to the store for me for anything. I am glad the vasculitis is under control for you and you approve of rituximab but if you have further information about side effects that appear after the infusion, I would be grateful. Nausea, vomiting, extreme joint pain, inability to walk, muscle pain, TOTAL hair loss (eyelashes to pubic hair), etc. These are the side effects listed as starting the day after the infusion and lasting for a "week or so", there are more... Did you have those post-infusion? Not having the infusion treatment and letting the vasculitis take its course is a real consideration at this point. I am tired.

Shielding is fully protecting myself from infections such as covid. It’s a U.K. term that perhaps isn’t used elsewhere. So I wear FFP3 masks everywhere and I wear goggles too if in close contact with maskless people.

I personally have had absolutely no side effects to rituximab post infusion, and I haven’t heard of anyone else getting the side effects you listed. Doesn’t mean no one has, but I haven’t come across it. When I first got the infusion my consultant told me the main risks were during the infusion and that any post infusion side effects would be rare.

On the ease of infections side of things, unfortunately all treatment for vasculitis will make us more prone to infection. The difference with rituximab compared to the others is you can’t stop it once it’s infused. It’ll last for months. The balance is that the vasculitis itself would also make us more prone to infection whilst causing damage.

I can’t advise what’s best for your risk levels, I can only speak to my experiences and personal preferences. I know some people have opted not to have rituximab because it puts them at greater risk of covid complications. I personally am willing to avoid covid as much as possible and continue with rituximab, as the vasculitis was causing absolute havoc with my entire body, and rituximab for me personally has been a literal life saver.

I would also say on the side effects point that many people who are on rituximab are also on other medication too. It would be unusual to solely be on rituximab (at least initially). I also take low dose Prednisolone (prednisone if in US). So most of my side effects from medication are actually from that, and not from the rituximab.

Thank you so much, you actually answered my questions! I will write more to you tomorrow. Thank you again. I am going to read it again. And again! (We don't use the term "shielding" in the US. Thank you for defining it. I simply do not go anywhere unless very necessary.) More tomorrow.

This is the link to where I read the side effects to rituximab written buy the manufacturer of the drug:

Hi, The rheumatologist prescribes methotrexate 20 mg weekly, prednisone 5 mg daily (prednisone was 20 mg daily for five months, side effects caused to taper) , plaquenil 200 mg two daily. He said the diseases had increased in latest labs (done every 6 weeks). Remission has not been achieved (not even close) since Tx started in late summer 2021. He said rituximab gives a 50/50 chance for remission. Said research it and let him know if I wanted to schedule infusion. My quality of life is almost negative, career of 36 years gone, living in isolation. Side effects may be too much to deal with so I am doing my due diligence. COVID is definitely one of my concerns. Thank you.

I don’t want to try and convince you in either direction as I’m not a medical professional and I don’t know the risk ratio. What I would say is that the side effects for Tylenol are listed as similar side effects for rituximab. There isn’t a single drug out there that doesn’t have scary potential side effects.

There are other drugs you can try such as azathioprine or mycophenolate. Both of those also have side effects but you can discontinue them if they do.

Living with vasculitis unfortunately means there are rarely good options. I was brought into remission by a mixture of cyclophosphamide, prednisone and rituximab. I personally went from not being able to move any joints, nearly going blind, constant bleeding nose and kidney failure to feeling mostly normal. For me the decision was perhaps easier because it was life or death at that time, so the side effects of the drugs didn’t matter. I appreciate you’re in a different situation.

On the other end of this chat if you keep wanting to message. It’s horribly isolating but there is a global community of support should you need it.

One last thing I would ask the rheumatologist is the risk ratio for each of the side effects to help you put it in perspective. They should have all this data readily accessible to them.

Thanks for replying. Regretfully, the specialist is quite short on time and asking for data is not an option. I must do my own research on meds, etc. I too, have ANCA-associated vasculitis and diffuse systemic scleroderma symptoms throughout my body that make life near impossible. (You have my sympathies. Ugh.) The diseases are having a party. I think the rituximab and I will join the party. Thank you for answering my questions. If you are game, I will probably have more later...

Hi, My ranting about the rheumatologists is over. This is the rheumatologist I have to deal with for now and I see a good group of specialists for everything else (cardiac, lung, etc.). After reading your comments and Ginny's, I have decided to try the rituximab. You are supportive and if I have more questions, I am comfortable that you folks will give good advice and support. I told the rheumatologist this morning to schedule a rituximab infusion for me. I'm nervous but hopeful, and I have nothing to lose. Thanks for the great support!

I was diagnosed with ANCA Vasculitis 5 months ago. I like to read up on treatments etc. and read the side effects if Rituxan and it sounded frightening. My Doc had told me not to look up side effects, but I did anyways. He said he would not prescribe anything that he thought would harm me. So I went ahead with the four infusions of Rituxan! Administered slowly and no side effects! I decided that he is the boss! Ha! Ha!

irishponies profile image
irishponies in reply to GinnyMa

That is AWESOME! Thanks!

irishponies profile image
irishponies in reply to GinnyMa

I wish I even remotely trusted the specialist I have (next closest one is 3 plus hours away). He is dismissive, allows no questions, and is demeaning; I have anxiety attacks in the parking lot of his office before every appointment.

GinnyMa profile image
GinnyMa in reply to irishponies

That is horrifying! There must be a rheumatologist closer than three hours and with a better disposition! You deserve better!

I bet your doctor us an old timer! They hate to be questioned. My GP, an old timer was on vacation when I decided I needed to be seen and the doctor on call was very young and suspected right away the vasculitis. She right away sent me to the rheumatologist, also at 37 also a young doc. They are better trained in patient relationships and more up to date on current practices! Find a young doc!

Hi Ginny, The rheumatologist is young, in practice 10 years and is a 45 minute drive. He seems very unfamiliar with the diseases' symptoms. He said the ear/nose symptoms were not related to the diseases and told me to read about the diseases online. The ear/nose symptoms I had were listed on Mayo Clinic, John Hopkins, and the Cleveland Clinic sites. Oh well. But I say nothing. He will not tolerate that. The ENT specialist said they are related. I'll let them work it out! The 2 other rheumatologists I had appointments with (prior to this one) asked me to find another doctor because they are "unfamiliar with treatment for both ANCA-associated vasculitis AND systemic scleroderma combination". I had a visit with a 3rd doctor, 1.5 hours away, that dropped my insurance. (He is no loss, he told me " your labs are messed up but you don't look sick.") There are NO other rheumatologists to call unless I drive over 3 hours. Please read my 1st post, it explains why the symptoms are so advanced. Okay. My ranting is over. This is the rheumatologist I have to deal with for now and I see a good group of specialists for everything else (cardiac, lung, etc.). After reading your comments and Grizzly's I have decided to try the rituximab. You are supportive and if I have more questions, I am comfortable that you folks will give good advice and support. I told the rheumatologist this morning to schedule a rituximab infusion for me. I'm nervous but hopeful, and I have nothing to lose. Thanks for the great support!

In the U.S. there are 3/100,000 cases of ANCA Vasculitis diagnosed per year. It is not surprising that many doctors have never dealt with a case of this rare disease. (I think that I am my doctor's first case, as he seemed almost excited to take care of me) I read that in the U.K.there are 14/100,000 cases diagnosed per year. So again many doctors are not familiar with the disease.

As an aside, in 2015 I had Giant Cell Arteritis which is more common and I read that it is more common in people of northern Europe ancestry...Thanks Vikings!!

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