First Rituximab Infusion Day Tomorrow

[Cheshirecharlotte]

So I’m in what I think might be quite a unique position right now in the UK which is that I’m having Rituximab treatment for my ITP. Has anyone else had this recently or is currently undergoing it?

I THINK I’m pretty lucky to be having it as initially my specialists said no to it and said that it’s not something anyone has been offering for a long time due to COVID as the treatment depletes your immune system completely for around 12 months.. so it’s been off the cards.

I was on Eltrombopag and saw no response, the steriods gave me the usual temporary boost along with some unforgiving side effects but no cure, and then the specialist signed off on giving me the weekly stomach injections I can’t remember the name of the treatment. However, I was napping in my hospital bed after being admitted with a severe headache that they thought could have been a bleed, when I got a visit from my consultant saying she’s had a think and is happy to go ahead with Rituximab instead! Weighing up my lifestyle, as I have to travel quite far for the treatment and this would be a shorter term option to try, etc.

Interestingly, I had my first experience with chronic ITP when I was 14-17 y/o and I participated in an ‘experimental cancer treatment’ as a last-ditch attempt before spleen removal. Against the odds it worked and I was in remission for 10 years until now.

The doctors couldn’t get hold of what the treatment was and my family couldn’t find my old paperwork. All my notes got lost when I transitioned from a specialist Childrens Hospital back to my GP. But after a month they found out it was actually Rituximab, which is so encouraging as it’s something that is now used routinely for the illness, rather than a treatment that was discontinued. I think this is why the consultant has pushed through with the treatment for me specifically, so I’m hoping for good results again.

I’m way more nervous this time. When I was 16 I didn’t have a care in the world! No anxiety no worries I just got on with it and lived a full life. Now I’m 26 I’m a ball of nerves!! Also, they use a different brand now which apparently is prone to giving people adverse reactions where the old brand would not have necessarily, so we will see.

I’d love to hear from anyone else’s recent Rituximab experiences. I haven’t really had time to even research it! So, anything common to look out for, or any advice?!

Thanks

Charlotte

[bettybeth1]

Hi Charlotte. I completed my 4 infusions on September. So far it looks to have worked for me. As my numbers are holding stable. I didn't have an reaction to it. But they did go slow as I don't tolerate I of whsn they push it too quick so maybe that helped. Just made me quite sleepy but that is probably due to just sitting there waiting for the drip to finish.Each season took about 4 hours. My hospital. Offered sandwiches ect but I took my own little packed lunch, and a tablet to watch a film whole they infused.

Hope it goes well and you grt a nice long remission again. X

[CJP2]

Hi Charlotte,

I was diagnosed with ITP last March, with platlets of 4. I went into hospital in the UK (Scotland) and was given dexa as first line treatment. My platelets went up to 47, and I was discharged. I crashed soon after, and was back to platelets of 27. The doctor prescribed another round of dexa, and I stayed at home. My bloods were monitored weekly. My platelets went up to 128 by April. They hung on around 100 for April, then I crashed to platelets of 1 in early May. I was readmitted, and the dexa did not work. I was stuck around that low for days. Then they added 50mg daily Eltrombopag, which can take time to work (about 2 weeks). Then they tried 2 doses of IVIg with minimal effect, so she gave me a shorter course of 20mg dexa for a few days, to try to get my numbers above 10, so I could go home. But, it took about a week to get to 12. They also upped my Eltrombopag to 75mg daily upon discharge. They decided to also give me Rituximab after the dexa and IVIg failed, and since the Eltrombag was not showing any results. I had my first infusion in the hospital.

They will closely observe you, giving you a titrated dose over several hours. They will take your observations throughout also. They will give you an IV antihistamine and 500mg paracetamol orally. They may add another drug IV, a steroid, maybe, but I forget. If you have no adverse reaction, you will likely get the other 3 infusions on a weekly basis, outpatient, if you are well. They will still give the pre-treatment drugs, but it should take about an hour.

Since you had no reaction in the past, that is good, but I would imagine they will still give the first dose as above.

After my first week, my platelets jumped up to 91, then 248 two weeks later. My Eltrombopag was reduced to 50mg daily. I then had fortnightly bloods for another month or so, then went to monthly bloods around August. I see the consultant every 3 months now and my highest platelet numbers were 381 in January. I am now down to taking 50mg Eltrombopag, M, W, F with monthly bloods. My last bloods in mid February werre 283. So, doing alright it appears. I have had 3 covid vaccines (one in September, one in Novmber, and a booster in February 2022. My doctor excempted me from having AstraZeneca. I had two Pfizer doses and the last was Moderna. No noticeable impact on platelets.

If you have already had your vaccines, you will likely have better immunity than I may have been able to achieve, which is a plus.

Your immunity will be compromised for at least a year. I had a chest infection in February, and it presented like any other I have had, which was a comfort. My vaccinated partner recently got COVID, and I did not! Not sure how that happened, but feel so fortunate. I work as a nurse for the NHS too, and have worked throughout the pandemic. Since being back to work and stable last June. I remain extra cautious and careful.

It can work wonders, if the drug does not cause reactions. It does have the negative side of compromising your immunity, so it is a balance. It appears Rituximab may be used less often, as they now have so many other, less risky options, like Eltrombopag and other similar medications, but it remains an option. Since you had such a good response to Rituximab previously, you might be a better candidate than others. (This is my view after my own limited research only, of course.)

I wish you all the very best tomorrow. Let us know how you get on.

[PBVBJD]

Charlotte - I have had ITP since 2011 starting with a platelet count of 2. My principal initial treatment was Prednisone which put me in remission (but had a lot of adverse effects, finally killing both of my hip bones which required two new hips several years later). After a trip to China which included some probably ill-advised Chinese medical treatments for a cold, I relapsed, and my MD tried Rituxan which worked fine. Then during a trip in Cambodia, I got an intestinal virus and relapsed again. My MD wanted a splenectomy, but I asked that we try Rituxan again and it again worked. I have been in remission since 2015. If, heaven forbid, I ever relapse again, I would definitely try Rituxan. Each time, I had 4 infusion session, lasting 6 hours each. Listened to audio books, ate a lot of good snacks and dosed. My quarterly platelet counts have usually been over 200. Good luck. Paul, from Los Altos, CA, USA

[SHAZ57]

Hi - I had 4 rounds of it in November/December 2017 while undergoing radiotherapy - unfortunately it didn’t work for me. Eltrombopag worked but I reacted against it. I’m currently on max dose Romiplostim once a week, 100mg azathioprine daily (taken as 2 x 50mg doses twice a day) and currently 10mg Prednisolone daily. 2 weeks ago my platelets were 14.Hope all goes well and it works for you. They should start it slowly so that there’s less chance of a reaction. Best wishes for success xx