Vasculitis UK
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Having rituximab

I got a letter from Dr Clarke at Southmead saying that my visit to Addenbrookes came to the conclusion that, after a PET scan, I will now have this drug

Can anyone tell me what to expect please as in how long it takes and possible side effects ? I’m a bit worried but this disease is bad & I just want to feel well again

Thanks in advance

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Allow about 6 to 8 hours, take a picnic, a book and iPad to while away the time and enjoy the rest. I had no side effects and felt so much better after just a few weeks. I had two infusions, 2 weeks apart at RD&E Exeter a couple of months ago. Nothing to worry about.

All good wishes to you.

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Thank you very much. This helps me as I tend to read too much on the net and worry I will get the brain disease that is three letters and starts with a P. Could PVL sound right please ?

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The brain disease is very very rare but they have to tell you about it. My hospital has never had a case of it so try not to worry. Hope you get the infusion very soon. All good wishes.

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Yes, I recently had to have surgery on a huge abscess that was actually on the base of my spine and they told me the thing could have gone into the spine and that I could have paralysis and more, as you say they HAVE to tell you by law.

I now don’t do anywhere near as much Facebook or trawling for information. I just want somekind of life quality back.

Thank you for your reply

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Hi Balderick,

The brain infection you mention is called PML. I have never seen a documented case of PML when Rituximab has been given for ANCA associated Vasculitis although there have been some cases with Rituximab used to treat Lupus.

It's a potential rather than an actual risk, I realise how scary it is though. When I was first given biologic drugs I was told it doubled my risk of infection, if my risk was 1% then that only made it a 2% infection risk! The devil is in the detail and our personal feelings about risk V benefit. Biologic drugs have given me my life back, it's unfortunate that the treatment for Vasculitis mirrors the fact that it's potentially a life and organ threatening disease.

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Thank you very much as I have an appointment with the pharmacology department today to discuss what I think they said was bio similar & my guess is that this means maybe using generic, woukd that be a fair assumption to make ? It worries me but my chest is now so bad and no matter how many times I’ve coughed blood it still scares me witless. I awoke on Saturday bareky abke to take a breath and the panic made this worse. I was down to 5mg of steroid but had to take 40mg to help me breathe. I also seem to be very backed up, as if my bowels aren’t working.

I feel much more st ease reading these posts. Thank you.

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Biosimilars are slightly different to generics, Biologics are very complex medications so it's impossible to replicate them 100% ( generics are exact copies ).

Lots of patients have been switched from Biologics to biosimilars without any advers effects, they are much cheaper and hopefully it will mean improved access for more patients.

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It was quite a surprising and a little worrying as I had so much information given me today and I will have infusions on the 1st and 14th of December. They took me through ALL the potential risks and it got me shaky but I now think I don’t really have other options so am grateful for this. I asked about the brain disease and was told they had never seen it happen and that I will be monitored like an hawk.

I had waited so long to get treatment that can help so was not really prepared for such swift action. Maybe it’s better this way in that I don’t have too much thinking time. I feel relief but some worry too but wouldn’t it be great if this works. When I was gasping for breath on Sunday, I was in a right state. Hopefully it may see me off of the steroids. I’ve been told to half my azathioprine too

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I can fully confim Skipper's reply.

I've just had two Rituximab infusions two weeks apart at the Royal Free (London). Despite being given a list of things that could happen during the infusions, there were no problems at all. Perhaps I was lucky, but I think the main point is that if you do have problems just call the nurse and they'll deal with them. In any case they attended every half-hour to check blood pressure etc.

A separate issue is that it takes about six weeks for the Rituximab to start doing its job, so I must wait and see what happens then. I've an appointment with my vasculitis consultant around then as he wants to see if it is working. If not already arranged, then I suggest you seek the same.

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Many thanks. I have an appointment tomorrow to talk about the bio similar ? drug. I’m hoping it starts very soon as I am coughing up a lot of dark blood and my chest felt like I had some sort of device that was squeezing the air out of me & I panicked and I know this makes getting breath even harder.

I was on the verge of saying I didn’t want the drug but I find myself in a no choice situation now so I really hope it can start very soon

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As Skipper has now said, they have to tell you the risks of any significant procedure or powerful drug, however small. This is just like all prescription drugs now come with a leaflet listing possible side effects.

I'm clear in my mind that consultants are nowadays trained to be very mindful of the particular circumstances of the individual patient - e.g. general fitness and strength, and other medical conditions - and they won't offer us something if the risks are too high in relation to the problems we currently experience.

I recall at age 57 I needed a heart bypass and the surgeon said there was a 10% chance of not surviving the operation. However he then said this was an average, that I was a young man (!) and that for me the risk was very much less. That left the decision with me. This was easy; even if the risk WAS as high as 10% (or even 50%) I would have gone ahead, as the alternative of living with daily chest pain - and a possible heart attack - made no sense. Ruefully, I note that now - 12 years later - no doctor tells me that I'm a young man!!

Just today I listened to a talk by a renal consultant, who said that a kidney transplant would not be offered to someone who is too obese even if he fulfilled all the other clinical criteria, because the risks of the operation going wrong would be high.

So I'm sure your consultant would not be offering you Rituximab if he thinks that there is a high risk of serious uncontrollable side effects.

I wish you all the best for success.

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Many thanks. I now see All medication as a trade off so I do t get so upset with it all now. I sometimes wonder if I have a fear of fear ? Fingers crossed all goes well in today’s appointment

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The pharmacology lady I saw gave a lot of things to ask my GP to monitor. She said my BP was high but I hadn’t taken my tablet as I was in a rush so I broke my door key lock by being to quick to try and pull the key out and it snapped in the lock, I then lost a denture of a tooth in the hospital cafe and forgot my BP medication.

As you can see, it’s been a bit of an hellish day but I’m trying to see past the silly stuff

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Hi Balderick i am same i have been on Rituximab for about 2 years now having it every 6 months and given 2 weeks apart infusions.I only felt a bit tired after due to length of time it takes because it has to be slow.Apart from that no side effects.Hope it goes well.

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Thank you for sharing, I guess I can catastrophise at times but it seems that NICE are now looking at allowing this treatment more easily. I very much appreciate the reply

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Many thanks Keith

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I am happy to read this too. It’s a great place to read up on others experiences.

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December 1st & 15th are now booked. Here goes. I will report how it goes

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Been told it’s going to be a biosimilar drug and all I remember is that it starts with an L. Is there anything I should be questioning please ? I felt good when reading thevreactions to true Rituximab but now I know biosimilar drug is being used then none of the replies count really.

I have to be in the hospital for 08:30 tomorrow. Wish me luck please

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Will I be able to move around at all ? I know that when I’ve had the prednisolone pulses, I can wheel the bag around. There is a Costa just around 300metres away and I’d like to know if I can maybe get a coffee and some food there while plugged in. I’d guess that the machines are plugged into electric sockets so there would be a no. Maybe and if I am polite enough & a kind nurse takes pity upon me, maybe I can ask if they woukd be prepared to get the coffee and food for me. It could even make for a little break for the nurse !

I’m getting apprehensive now that the day is upon me. I habe to stay positive and really believe that this will be the magic bullet and I get my life back. It’s been very emasculating having to pay people to do my basic gardening as I enjoy doing that. It’s also expensive and has eaten substantially into my savings. Trouble was that even cutting my lawns would put me into some sort of attack where I woukd shake uncontrollably and yet feel freezing cold. I be,i eve the rheumatologist called it a rigour. I get the feeling of being frozen to the bone and that any removal of bedclothing would kill me, I know it sounds dramatic but I can’t even hold a cup where I shake so much. I now have all of my emergency details on my phone and it’s accesible via the lock screen without any passlock and I use voice command to call emergency.

Given some luck then tomorrow starts the fightback !

Wish me luck please good people.

Does anyone know if I can still take my normal Meds as the appointment letter said nothing other than where to be and at what time. I am on a beta blocker for high blood pressure and fast heart beat, an opiod for the Pain plus pred and azathioprine. If anyone can help with this I’d be grateful. I habe left messages with rheumatology every day this week but no replies at all

Regards

B

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Ok folks, just got home after having 1gram of Rituximab infused. I had a pleasant enough experience and they were upping the speed on the infusion every 30 mins. This was tolerated well until the final one and I felt faint and my heart started racing. It went so much better than I expected and I was provided with sandwiches, tea and coffee throughout the day.

I guess we now wait and see how it goes. It certainly didn’t seem boring and I had plenty of people to talk to and share our experiences. I tried to ask several times whether I now carry on with the pred and azathioprine but all I got was you will be told when you next see the doctor but that is now in April. I was only on 5 mg pred every other day as it happens so will talk with my GP. I was to,d it can take up to 16 weeks for the Rituximab to work & that surprised me. I stupidly left my discharge letter behind so hope they post it to me. I now have to carry a card that is similar to the steroid one.

Let’s hope I continue to not have any side effects. The antihistamine really zonked me out and I fell asleep for 3 blissful hours. Good stuff whatever it is.

Regards

B

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Hi again everyone. 3 Rd day post the infusion and I’m having my chest feel tight and phlegm but no blood. Do you think it’s something I need bother my GP with or not please @keyes. In honesty I didn’t feel any different to before this treatment but that’s fine & i’m Delighted with the lack of side effects.

It seems to me that one of the 1st things I noticed prior to the many visits to Doctors and specialists was my heartrate became unusually fast and as I was a gym bunny, I didn’t feel any endorphin high after a workout. It would leave me shattered & i’d stay in the changing rooms for at least an hour just to stop the profuse sweating. My standing heartrate was 60 or a little less as I was one very fit and strong guy. The heart rate now is in persistent tachycardia and it beats at around 110-120 at rest. I had the cardiologist go through a lot of tests and I was told I have left axis deviation but that my heart structure and stricture ? We’re fine. I was given a drug called, I think bisoprolol but it made me feel so bad. My ears Would ring so loudly that I can’t hear others talk and I’d feel very faint. That was just on one 2.5 mg tablet. There is another that I know starts with an N, maybe nevivolol ???

I was reverted back to propranolol but they would like me to have an heart specific drug rather than this.

My question is, if the treatment works then can I expect my heart rate to normalise please ? Normally I am not aware of the beating so it isn’t interfering with my life. I know I am jumping the gun but this seems to be the place to ask these questions

Many thanks in advance

B

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I had the last infusion 15th December and it seemed I was reacting well but I had 3 very bad rigor episodes last week, I got to see the registrar and not the Doctor. She seemed very hell bent on recording a positive outcome & just wouldn’t listen.

I had my blood tests come back yesterday with some highlighted numbers, either elevated or extremely low.

I had my worst rigor ever this past night. 7 hours of 104.6 fever, bone pains that tramadol won’t shift and hallucinations that are getting worse.

@john_mills. Any ideas please fella ? I’m genuinely sick of being this sick and phoned the Samaritans earlier. Thank god for them

The pain clinic bizarrely call this level of Pain, exquisite Pain though I see nothing exquisite in it and I’m

Very close to my breaking point. I’ve never felt this way before but this has me beaten.

I HAD to use my dad’s ( RIP) inhalers to draw breath it took

Me 4 attempts to get some into me. The

Brown and blue inhalers.

I’ve emailed the Rheumatology advice line and my GP.

I honestly do not know how you guys handle this level of pure and awful Pain I’ve taken a couple of milligrams of Xanax that I got in USA in the hope it will KO me

I’m so very sick of this. I don’t want it anymore.

Best wishes to all

B

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