Rituximab

[sorefeetsoldier]

Hi All,

Happy New year to yin and aww.

I'm scheduled for my first Rituximab infusion this week and getting cold feet ( second thoughts). Any advise and reassurance would be a great help

Many thanks in advance.

Kind Regards

SfS

[Nadine99]

Good gracious me. Why on earth would you be getting cold feet when you've been offered this and it's been approved? It's been a magic Unicorn Juice for many people with Vasculitis, not all, but most. It'll take quite a while to infuse, maybe 5 - 6 hours so take some reading. Take some snacks and drinks too. Chill, it'll be fine.

[sorefeetsoldier in reply to Nadine99]

Hi Nadine,

And Thanks for the Nice reply, I was thinking of G&T??

Perhaps not.🙄

I'm just getting a bit flustered,silly I know.

Thank you again.

SfS

[Grizzly-bear]

I get fatigued for a few days after the infusion and I know of others who do too so perhaps anticipate that might happen.

Overall rituximab been magic for me.

Best of luck!

[sorefeetsoldier in reply to Grizzly-bear]

Hi Grizzly bear,

I will keep that in mind, And thanks for your reply.

Regards

SfS

[artists]

it was a life changer for me

[sorefeetsoldier in reply to artists]

Any side affects?

[artists in reply to sorefeetsoldier]

none ! Only positives . Good luck

[sorefeetsoldier in reply to artists]

Thanks for your Reply Artists.

[Investigator1]

Do it! Do it.! Do it! It’s help me live a normal life, the experts say if your going to reject it it’ll happen while the infusion takes place and they watch you like a hawk but for me there have been a few side affects, after 5-6 weeks I get a bit faint and feel a bit strange, I think that’s more an adrenal gland issue though. And I get the odd body pain for a few hours but nothing to put me off. I have had 5 doses now with a possible 2 to go. Nick.

[sorefeetsoldier in reply to Investigator1]

Hi Investigator,

Thank you for your Reassuring reply.

Regards

SfS

[Chipper03]

Take it, you’re one of the fortunate people to have this approved. I’ve heard so many positives about it but sadly it’s a bit of a lottery whether it’s offered or not, due to the cost. Good luck, here’s hoping it works very well for you!

[sorefeetsoldier in reply to Chipper03]

Hi Chipper,Yes I'm thankful for the opportunity to be treated with Rituximab. I suppose it's come to the point in my case there aren't any options left,

Thank you for your reply and I hope you will be offered it sometime too.

Regards

SfS

[AmyS1]

In the past people with vasculitis had to fight hard to get this treatment. Go for it!! ( historically you would be given cyclophosphamide in the past). I despite being a working age female was refused ritiximab despite asking for it and had to have cyclophosphamide instead. Ritiximab is the gold standard treatment for many types of vasculitis!

[sorefeetsoldier in reply to AmyS1]

Hi Amy,Yes I have had the 7 clyclophosamide infusions in the past. I suppose I'm a bit wary of something new to me!

Thank you for your reply

Kind Regards

SfS

[JGK99]

absolute game changer for me - it takes a while so take a book and some music on a phone etc but relax ! It kept me going really well until I got Covid and pneumonia and now for the time being , I can’t have it so please take it and relax - I had no side effects at all from it …. It’s a game changer ….!!!

[sorefeetsoldier in reply to JGK99]

Hi JGK,

Sorry to hear you can't get it for now and resume your treatment soon.

Thanks for your Sound advise too.

Regards

SfS

[eh66]

I have had a several. It is pretty boring to be honest. Usually approximately 6 hours; they usually give me paracetamol and antihistamines half an hour before the infusion starts. I would take your favoured form of amusements; books, videos, music etc, plus drink and snacks. Depending upon the set up if it is bed( slippers can be useful). I had an issue once with blood pressure dropping but the nurse running it, keeps an eye on those sort of things.

[sorefeetsoldier in reply to eh66]

Hi eh66,

Thanks for your Reply it is much appreciated.

Regards

SfS

[Icecrea]

Go for it! The only after effect that I got was a slightly red face for a few days. We are so lucky to be offered this treatment.

[sorefeetsoldier in reply to Icecrea]

Hi lcecrea,

All positive replies have really boosted my confidence.

Thanks

SfS

[sarahdollygirl]

I can only agree with everyone, it's the most univasive treatment going! You'll be fine!

[sorefeetsoldier in reply to sarahdollygirl]

Hi Sarahdollygirl,

Thank you for your positive reply.

Regards

SfS

[russellk3]

Hi mate ,I had my first infusion back in August although I’ve had GPA for 7yrs,nothing to worry about ,it just takes a wee while though second one was quicker ,just take your tablet and headphones and some snacks the hospital did offer me lunch while there ,no side effects I went to Benidorm the next day ,it has helped keep my subglottic stenosis at bay although hasn’t helped my sinus issues ,I even contracted covid a few months after it but got anti virals which helped me not get to bad

Best wishes Russell

[sorefeetsoldier in reply to russellk3]

Hi Russell,

Thanks for your reply and I'm glad the antivirals worked for treating COVID for you.

Best wishes to you too.

Regards

Sfs

[russellk3 in reply to sorefeetsoldier]

Hi SFS, am I wrong in assuming your from Scotland ,can I ask where from and where do you go for treatment, I myself are from Clackmannanshire and go to Forth Valley Hospital please excuse my curiosity 👍

[Bassace]

I echo everyone else - it is generally very effective with usually no side effects. It was a battle for my dr to get it approved in 2020 (I’m in the USA) but I had it again in 2022 and it was very easy to get the 2nd time. They even offered it automatically 6 months later but my symptoms were under control so I declined, as it is so expensive. Even so, there was someone at the hospital who negotiated my out of pocket price and so I ended up paying nothing.

Of course, none of that is relevant to the UK, but I will say (if it is not too late), think about which hand you want to drip in, especially for going to the toilet.

Good luck!

[sorefeetsoldier in reply to Bassace]

Hi Bassace,How much does it cost in the USA for two 1gram infusions?

And thanks for the heads up about which arm I wouldn't have thought about that👍

Thanks

SfS

[Bassace in reply to sorefeetsoldier]

thanks sfs. I think the pharmaco charges something like $70k or so. Health insurance covers most of it, but I was still going to have to pay a few thousand, but the hospital has a person whose job it is to work with the different parties involved to reduce of eliminate that portion. My family hit the out of pocket maximum last year (we normally do) so once we’ve paid that the insurance company covers the rest anyway.

Lang may yer lum reek!

[Bassace in reply to Bassace]

btw don’t know what my dose was

[sorefeetsoldier in reply to Bassace]

Still a lot of cash!!!And lang may yer lum reek too my friend

😃👍

[Griff53]

Hi.Had GPA for over 14years and Rituximab is the only treatment that works for me. Have one 1000mg infusion every 6 months and also take 10mg of steroids every day.

All the best for your treatment.

[sorefeetsoldier in reply to Griff53]

Hi Griff,

I'm on 40 mg per day steroids and muscle loss is taking place so I need to taper the pred.

So hopefully the Ritux will do the trick.

Thanks for your positive reply

Regards

SfS

[Bassace in reply to sorefeetsoldier]

yeah long term steroids is bad news

[Hidden]

I love your screen name. I have a feeling your like me and have terrible neuropathy and pain in both feet. When I was DX here in the US, I couldn't start Rituxan like my doctor wanted me to because the hospital spotted a mediastinal mass on Xray. They don't want to give Rituxan to anyone that they suspect may have cancer because it would allow the cancer to grow faster. I was given Azathioprine and Prednisone to start with. After they figured out that the mass was not cancerous, I was able to get the Rituxan infusions. I went through 2 sets of 4 infusions and the sets were about 4 months apart. I stayed on the other two oral drugs for another year then went into remission. As some pointed out here, I felt a little tired after the infusions and took a nap at home afterwards. My Vasculitis caused kidney failure for me so my Nephrologist manages both of my diseases. He is very knowledgeable of the GPA Vasculitis. He told me that Cyclophosphamide is some really nasty stuff. When I was on a Facebook group, people on there talked about how bad they felt and how sick they got with Cyclophosphamide. Rituxan is not like that. Because I had commercial health insurance during my treatment, I was able to see the charges for the Rituxan treatment. For a set of 4 infusions and use of the facility, the insurance company was charged $173,000 US dollars. I've heard that one infusion can cost as much as $80,000 so I must have gotten a deal.

[sorefeetsoldier in reply to Hidden]

😳 woww that's a serious amout of money blimey. Yes I'm in constant pain in my feet and eyes, so time will tell if it's going to work for me.

Many thanks

SfS

[yogarita1955]

hi don't worry about it it's been wonderful for me

I was like you asked everyone thay all said the same no aftereffects I didn't believe them but had no choice as I felt so unwell

so glad I did go for it 🙌

[Electra1]

Hello... Rituximab was really the magic potion for me and my refractory disease. I was really ill, had used up my options of chemo and still so unwell. Rituximab was easy, a magic bullet for my disease. The only problem was as a consequence of treatment with Rituximab I became immune deficient...B Cell deficient. B cells are the memory cells that recognise viruses and without this part of my immune system, vaccine has no effect at all and I have no antibodies for COVID or indeed much else. That said, I was so ill, I would have Rituximab again even with this side effect.

[sorefeetsoldier]

Hi Electra,

I Guess you need to Keep away from people with coughs and sneezes in particular, and be very carefull.

However I'm glad you are benefiting from the Ritux infusion.

Best wishes

And thank you.

SfS

[HullBoy]

Hi SfS,

My second infusion of Rituximab ended end of November (two infusions in the 6 months from May) I found the experience to be fine. My first infusion took 12 hours as my vitals were monitored every 15 minutes initially and the infusion was delivered at a very slow rate. The second infusion took less than 4 hours with reduced monitoring.

I had no side effects (or certainly non that overcame the symptoms of the Vasculitis. In fact I started to feel better and stronger almost straight away)

Since November my consultant has tried Azathioprine and Mycophenalate on me (NHS cheaper option!?), both of which gave me bad side effects. My consultant has now agreed to further Rituximab infusions to maintain my remission, which I'm very pleased about.

I hope your treatment works as well as mine

Kind regards

Hullboy

[sorefeetsoldier in reply to HullBoy]

Hi Hulloy,

Thank you for sharing your treatment experience, I do appreciate your reply. All in all I reckon with all the positive replies it seems to be the right thing to do.

Side effects like pml are the scary part.

Long may your remission last.

Regard

SfS

[tinytigger]

I have had four infusions so far with no problems and it has reduced my pill count so that has to be a big Bonus, so go for it.

[sorefeetsoldier in reply to tinytigger]

Hi tinytigger,

Yes I'm defo going for it.

Plenty to gain from it by the sounds of it. I agree about the less pills must be a good thing too.

Many thanks for your reply.

Take care

Regards

Sfs