Rituxmab: Looks like we are moving onto... - ITP Support Assoc...

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Rituxmab

Whitespot profile image
34 Replies

Looks like we are moving onto rituxmab. Did anybody have to get vaccines before getting that, also any side effects

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Whitespot profile image
Whitespot
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34 Replies
Hogze profile image
Hogze

For me it was nice, there was no too much side effects,

Whitespot profile image
Whitespot in reply to Hogze

Did it work for you

Hogze profile image
Hogze in reply to Whitespot

It has been 3 months since I took it, till now I am keeping a good count. I hope that continues,

JasonJ profile image
JasonJ

Hi Whitespot, they gave me some paracetamol directly before cortisone directly before the Rituximab in the same IV tube. I felt a little bit dizzy the first time I had it.

No other side effects. It takes about 4-5 hours maybe a bit longer the first time depending how fast they can pump it in.

Good luck!

Whitespot profile image
Whitespot in reply to JasonJ

How did it work for you

JasonJ profile image
JasonJ in reply to Whitespot

No effect from Rituximab I am afraid.

I am currently on Revolade, it's working, just when I thought I was a lost cause!

lc12345 profile image
lc12345

I had 3 vaccinations (flu, meningitis and pneumonia) before rituximub and developed bad allergy from them - but my immune system is a bit strange so it's just me. As for rituximab - no side effects but it was administered with some kind of antihistamines

Whitespot profile image
Whitespot in reply to lc12345

Did it work

lc12345 profile image
lc12345 in reply to Whitespot

Yes, for 18 months so far

Whitespot profile image
Whitespot in reply to lc12345

What side effects from vacinnes

tgk62 profile image
tgk62

It was not suggested to me before my first infusion. My first one took over 8 hours, as I has a reaction. I'm hoping my next one will not take as long.

GlendaInIowa profile image
GlendaInIowa in reply to tgk62

it shouldn't. By my 4th treatment I was done in under 2 hours.

tgk62 profile image
tgk62 in reply to GlendaInIowa

My second treatment was 5 hours, so it is getting better! They said my next one might only be 2 hours.

tgk62 profile image
tgk62 in reply to tgk62

My platelet count right before my second Rituxan infusion was 100, up from 39 the week before! So it seems my body likes Rituxan. Hopefully it will hold & put me into remission!

Whitespot profile image
Whitespot in reply to tgk62

I hope so too, best of luck

Nespinoza profile image
Nespinoza

I had that medication before and no vaccine and i didn't get any side effects

Whitespot profile image
Whitespot in reply to Nespinoza

Did it work

Nespinoza profile image
Nespinoza in reply to Whitespot

No not really not for me ivig is the one that seems to work for me the best

Rafiq profile image
Rafiq

Apparently it is not uncommon to feel itchy all over the body for a while and also difficulty swallowing. I had both. I did have 11 months remission though.

Best Wishes.

Rafiq

Bean195 profile image
Bean195

Yes, I got the Prevnar vaccine about a month before. Make sure to ask about the Hep B vaccine. You will need that too if you haven't received it already. I did 4 rounds of Rituxan. The first and third combined with high dose dexamethasone. The Dex is worse than the Rituxan. I did have an allergic reaction to the Rituxan during the first infusion (which is expected). Just be very aware of how you are feeling going into the infusion and be sure to tell the nurses about any pains you might be feeling. For instance with me I felt aches in my upper back followed by an intense urge to sneeze (felt like a stuck sneeze), then a little wheezy and stuffed up. They stop the infusion for a bit, let the saline flow and then re-challenged it. Everything was smooth sailing from there for me. The first day or two it felt like a really bad hangover (headache, night sweats, etc.) but Tylenol helped and each infusion got easier from there.

It's been a month since my last infusion and my count went from 19,000 up to 179,000. I go back in 2 weeks to check again, but so far everything seems to be working.

Best of luck to you!

valhassell profile image
valhassell

I Had the Retuximab twice, no reactions. It didn`t help the ITP, but got rid of my arthritis in my knees and hands and that was five years ago.

5bella5 profile image
5bella5

There are several side effects. For the complete list "Google" it. The side effect that my Physicians kept a very close eye on was the possibility of an intestinal tear. Unfortunately, the side effects can last for up to two years after stopping. I was not informed about any vaccines before or after. Actually I felt OK when I was on it. However, having said that, I should also mention that at the time, I was also tapering off from the steroids. My suggestion is to "Google" all your meds and treatment. You'll get a very clear picture and can then discuss it with your Physician.

Take care and good luck!

Whitespot profile image
Whitespot

Did it work for yoy

I have had it 4 times now with remission of min of 3 years in between each time. They should pre medicate you but as for vaccines you need to discuss this with your team. Rituxiun can have an affect on their effacasy and there are particular things relating to hep b immunity etc. Vaccines are usually before splenectomy not so much other medications. I developed immune neutropenia from the repeated treatments and now this is often more of a problem than itp itself. If you need to get more antihistamine and paracetamol mod infusion and take it slow.

GlendaInIowa profile image
GlendaInIowa

I also suffered not side effects from the rituxan. I had weekly treatments for four weeks in combo short bursts of Decadone steroids.. Four days of 40mg, then off. The combo works in like 2/3 of ITP people. Steroids will work for raising my platelets, but we are kind of thinking the combo with rituxan is not going to work. it can take up to 6 weeks to kick in and I am on the 5th week now (a week outside of my last treatment). So we are just waiting to see.

The steroids are horrible but Deca is way better then Pred because you can get on an off it in bursts. All my symptoms were from steroids. I can't really say there is anything I can point to rituxan for. There might be something but nothing bad.

Good luck! Keep us posted!

LannaBarnett profile image
LannaBarnett

Please let me know how your first infusion goes.. Its my next option, and honestly I'm a little terrified!

Whitespot profile image
Whitespot in reply to LannaBarnett

It will be awhile, have to see rheumatoligist first. Have you had IVIG yet. That brings my numbers up but only for about a week and a half. When do they want to start you on rituxamab

LannaBarnett profile image
LannaBarnett in reply to Whitespot

My hematologist hasn't really offered anything else other than steroids (currently taking) and now rituxamab. I'm nervous of how badly the rituxamab is going to make me feel, because these steroids are so awful. Can't sleep, always sweating, horrible indegestion, and weight gain.

Whitespot profile image
Whitespot in reply to LannaBarnett

I take it you also are recently diagnosed. I'm also on steroids with the IVIG. Yes the steroids are awful, dizzy racing heartbeat, sweats also. Yes I'm concerned about the side effects too.

LannaBarnett profile image
LannaBarnett in reply to Whitespot

I was diagnosed inOctober of 2014, but it ddidn't become Chronic until August of 2015. In August it dropped and that's when they put me on steroids.

tgk62 profile image
tgk62 in reply to LannaBarnett

My first infusion just over a week ago, was not bad. I had a slight reaction. Coughing, congestion in my chest and head, & my BP went way up (I have high BP already). But it didn't last long. They stopped the infusion, gave me more Benadryl, Tylenol, & Steroids, waited 45 mins. then restarted from the beginning with no problems. It took over 8 hours. My count went from 39 to 100. Second treatment had NO problems.

Whitespot profile image
Whitespot in reply to tgk62

Thanks for your comments . Hopefully when i get mine I have minor reactions also. I'm not book yet, have to see rheumatoligist first. Keep me posted on how it works and how long it stays. Take care

tgk62 profile image
tgk62 in reply to Whitespot

I hope you have no reactions to treatments!

Whitespot profile image
Whitespot in reply to tgk62

Thanks

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