Starting Rituximab treatment

Hi All,
I've been drug free for five months, after two years with ITP. The count varying 32-48 over last five months.
Unfortunately, my count today has fallen to 15. This is below the redline set by my consultant (30). I'm now starting treatment with Rituximab ( Mabthera) next week. Feeling very anxious. I'm having a bone marrow biopsy on Monday. For those of you who have had this treatment , is there anything I should be aware off, especially during treatment.
Thanks
Abuisa

Abuisa:

I actually thought the Rituxan treatments were pretty boring. You get pre-meds that make you sleepy and I pretty much slept the entire time. Patients are monitored pretty well, especially during the first treatment in case there is a reaction. Some people have a slight reaction and they just slow the drip for a while. I had a scratchy throat that caused a cough during one of the infusions but didn't even realize it was a reaction until weeks later. Most people do just fine.

If you've ever had IVIG, it is pretty much the same thing...sit there for a long IV. I notice more reactions around here to IVIG that I do to Rituxan.

There is a rare delayed reaction to Rituxan called serum sickness. It usually occurs 14 to 21 days after the first infusion. I've had it twice. The symptoms are fever, extreme joint pain, headache, hives, redness and itchiness around the IV site, malaise, and feeling achey. You will know if you have it since it hits like a ton of bricks. It usually goes away in a few days and if you get it, you should never have Rituxan again.

Like Sandi said I was premedicated brought my laptop and movies to watch. Now I had a reaction with the first infusion they just stopped the drip gave me some medication and restarted the drip. I had no issue's with the 2nd, 3rd, and 4th treatments.

Rituxan was the one treatment I had next to no side effects. Felt a little run down the first 24 hrs after treatment but nothing I would complain about.


I am currently waiting while my new doctor tries to get me an appointment to see the doctor who gave me the Rituxan so I may have it again. I had a very long remission from it years!

Hi Abuisa,

I was anxious before my first round of rituxan too. But they monitor you very closely and most people do just fine. I get an itchy feeling in my throat and mouth and so they give me hydrocortisone in the IV line as well as benedryl which I think most doctors give to everyone.

I also had some bad reflux during the first treatment in each if the 3 rounds I have had. They slowed down the drip and I took malox by mouth.

I had a 4 1/2 year remission from my first round. Many other people have gotten great remissions too. Good luck!

I also had a BMB to rule out other causes of low Platelets. Everything came back normal, so ITP was my diagnosis. Prednisone at first which raised counts slightly, but dropped as dose was tapered. Platelet transfusion raised counts slightly for 2 days. Two rounds of Rituxan. First 4 treatments went well. The first round was started slow to see how I would tollerate it. Pre-meds do make you sleepy. My response to the Rituxan was slow, approximatly 6 weeks. The first round lasted about 16 months. I had to see another Hemo that was filling in for my regular Hemo due to low count again. He suggested a Splenectomy, which I refused. I had a reaction during the first treatment of the second round. Shortness of breath, chills, rapid heart rate, tightness in chest. Treatment was stopped and meds were given to counter the reaction. Treatment was restarted at a much slower rate once symptoms improved. The next 3 treatments went fine. Took about 4 weeks to respond. Almost 3 years of remission. 5 weeks ago I had symptoms of low counts. Count was 5k. Platelet transfusion. Count was 109k last week. I was monitored pretty closely, vitals were taken frequently. I watched TV and used the laptop when I could syat awake. You will be fine. Try not to stress out about it. Good Luck!!

First round i felt like i had the flu

next 3 i was fine

but it also didnt work at all for me

Many thanks for all your comments. They've certainly given me more confidence for tomorrow. I had the bone marrow biopsy on Monday. The application of the local anaesthetic was the most painful part of the procedure. Results of the biopsy will take two weeks, but doctor not waiting, so start rituximab tomorrow morning. Will let you know how I get on.
Many Thanks
Abuisa

Just completed first rituximab treatment. First hour was taken by premeds. Then next 3.5 hours were taken by slow infusion of rituximab ( 700mg). An hour in, I got an itchy scalp. As a result, was given more premeds, which got rid of the itchiness.  I was also given premeds when the retuximab finished. My blood pressure & pulse were taken after each increase in dose rate. I'm very grateful it went well ( -i had worked myself into a right state reading Dr Google!). Hopefully, the next few days will also go well. And then its on for treatment number two.
Abuisa

Good luck. I had some trouble with my first Rituxan treatment that was fixed with premeds. The ones that followed were much better. I felt like doo doo for a couple of days but it wasn't too awful. I got 5 years of counts between 50 - 80. It was lovely!

Good Luck.

Since the first one went so well, the next three should be even better. The first is always the hardest. Your infusion went pretty quick...most of the time they take about an average of 6 hours.

Glad to hear first infusion went well!

Isn't it amazing how Mr Google can have you thinking the worst! Good luck on the next three they should be a breeze compared to the first one!

Update:

I've just had second Rituximab treatment today. This was done at a faster infusion rate than the first treatment:700 mg infused over 1 hour 50 minutes. I was given double amount of Premeds compared to first treatment- to interact an itchy scalp I had first time around. I'm pleased that the treatment went well. Platelet count today was 37 ( - 23 at first treatment).

After the first treatment I was tired for a few days. Developed a really bad sore throat, second day after treatment. This has mostly cleared by the second treatment today: I was checked by the doctor today, who was happy for me to continue with the second treatment. Also had a numbness for a few days after treatment on the head, especially side of the head ( - I have it now). Also had some bone pain, general shooting pains ( legs).

My eyesight has definitely deteriorated a little: not sure if this Premeds or Rituximab?Will visit optometrist.

Hopefully the next treatment will also go well.

Third Treatment

After the second treatment last week, I had a migraine for a few days. Eyesight is still slightly off. No other side effects.
I've had the third treatment today. This was at the same rate & dosage as second treatment. This went well.

My count today before the start of the third treatment was 44. The count has been steadily rising, since I began Rituximab. Difficult to tell if this is the treatment starting to work or my count recovering from a crash (<10) four weeks ago. The Rituximab apparently starts working a month+ after starting treatment. 

Since starting treatment, I've consciously avoided meeting people as much as possible,  especially crowds, for fear of catching an infection. Is this overkill? Will it help avoid catching a bug. I've also toyed with the idea of wearing a surgical mask when I go out!.

The two times I had Rituxan treatments, and the year following each round, I didn't notice any more colds, flus, etc. than in the past. In fact I had pretty much no sicknesses like that. I had more problems with my gums (which are usually in great shape) and some slightly off pap tests - both of these can be due to dormant virus and I do think Rituxan had a role. It's like the warning if you have Hepatitis exposure - Rituxan could allow the virus to re-activate. I am paraphrasing from memory - please correct me as to details if you know this part.
Erica

Kyasseen:

I didn't get sick any more often after Rituxan either. It doesn't wipe out your entire immune system like a bone marrow transplant does, it only targets one of the white cells. There is a lot more to the immune system that is working just fine.

However, if you've had a splenectomy or are on other immunosuppressants, you might want to be a bit more careful.

Hi ALL,

I've now had the last infusion, same dose as last time. This one was probably the best tolerated of all the infusions. The platelet count before the infusion was 33, a drop from the last count (44). A bit disappointed. I've been informed that the positive effects of the treatment will not start for another few weeks. I'm looking forward to the high counts!.

I've had substantial bruising from the cannula. Interestingly, I didn't get much bruising after the first infusion. But all subsequent cannulas left a Golf size bruise, which have taken a week to go away(-very black/blue). My eyesight is still slightly off. And I have insomnia from hell. Other than that I feel fine.

The eye sight and insomnia could be due to pre-meds. They usually give Solumedrol which is a steroid. I'm glad all went well and hope you get a response soon!

My 29 years old wife, Suffering from chronic ITP, first time diagnosed in May 2013. Treatment included Platelets transfusion, "Omnacotril", (started with 50mg and gradually reduced then stopped after 5mg on alternative days after three months) and "Revolade" tablet for initial 7 days. In Sep'13, we stopped omnacotril (at platelets count of 1,50,000) and post that we were monitoring the platelets count which was in increasing trend. In October platelet count was 1,98,000 but by end of month count reduced to 3000.
Again treated with same procedures and count reached to 2,90,000 but within 7 day relapsed to 3000. She is hospitalized again and getting treated with prednoaolone 50mg
, Solu-madrole, Revolade but nothing is working her platelets count is 10,000 from last 5 days and Doctor is suggesting Splenectomy or Rituximab.
We opted for Rituximab and day before yesterday had first dose of rituxi. Nex morning count reached to 20k but today morning platelet count back to 10k. Not sure what's happening. Doctor has suggested to wait and watch. She is still in hospital. Can anyone suggest what is the response time of Rituximab after first dose or is there anything else we can try with this. Please advise.
Thanks, Yogesh

Yogesh, I am also the husband of an ITP patient diagnosed this spring. Rituxan will be Ellen's next treatment, if wait-and-see does not work. Rituxan can sometimes take as long as 12 weeks to work, I am told.

For the sake of other readers, Omnacortil is known here as prednisolone, and Revolade is the same as Promacta.

You inquired about what else can be done. It seems to me that your doctor is balancing the dosage of prednisolone to get a tolerable platelet count without more side effects than is necessary. Maintaining platelets between 10-20k, especially in-hospital, seems reasonable to me while cautiously waiting for Rituxan to work. There is room to increase the prednisolone if necessary. IVIG is another "rescue" option, but is very expensive and usually temporary.

When I first came to this website, I was very scared for my wife. The more I learn here, the less scared I have become. I wish the same for you, so keep coming back!

Today is the 4th day of her 2nd infusion of Rituximab. As per today's CBC her Platelet count is 3k, she is still taking prednisolone and promacta . She got two or three red spots on her hands and face today.

Just discussed with her doctor and had a infusion of solumedrole, hope she will get some positive results.

She has completed all four infusion of rituxi on last Tuesday.
Today is 26th day of her first infusion, as per today's CBC count is 8k. No effect of prednisoline and promacta which was increased to 75mg on last Wednesday.
Doctor has asked us to be ready for splenectomy.

It can take 4-12 weeks, so it can still work.
Erica

Started Bleeding in stool from yesterday night. She did not have these symptoms with count of 3k. Now we are worried.

Have you called the doctor?

Symptoms like that can occur, usually when counts are under 10k. It doesn't matter if the count is 3 or 8. Try not to get too hung up on the actual number. The symptoms are what matter the most.

Went to hospital in emergency ward, doctor gave injections to stop bleeding and a plateletelet transfusion, count taken at hospital before platelet transfusion was 10k.
They took count again on next day i.e. today and it was 40k. In last one month this the highest count we have seen, at frist I didn't' believe and asked again the staff nurse if I am reading the number correctly but she confirmed the same.
When hematologist saw that report he asked us to get a manual count again. I know this is not result of platelet transfusion as per our previous experiences. Doctor is also not sure if this is result of increased dose of promacta (50mg to 75 mg from last wednesday) or rituxi has started its work. God knows, but she got discharged from hospitl today after spending a day and one night and at home now, no bleeding symptoms and gum blisters got disappeared.

That's good news! Hopefully the treatments are kicking in.

Some good news to report: platelet count, done a few days ago, was 66. This is the highest count over the last 12 months. And it's been 3 1/2 weeks since last rituximab infusion. Other piece of good news: bone marrow came out normal. So doctor believes strongly that I have ITP!. Hopefully this is the start of the good news.

I've been to see the optometrist regarding decline in eyesight. Eyesight has declined two notches(?) since last year. Optometrist was not happy with the optic nerve: cd ratio, which measures health of optic nerve, was 0.5, previously 0.25. This is usually a sign of glaucoma, but my eye pressure was normal. I've been referred to the hospital. My ITP doctor thinks it might be connected to being on prednisone for over 1.5 years. Its another thing to worry about. Will let you how I get on.

Yogesh- Very sorry to hear about your partner. My experience is not to worry to much about count (- you can go crazy),but keep an eye on symptoms. Any sign of bleeding, or anything unusual, get straight to hospital.

Kyasseen - lovely to hear your good news. Hope you carry on getting lots more - particularly about your eye sight

Yogesh - great news on a count of 40. Having read your story so far it's clear why everyone was surprised by the jump. Hope the counts stay high

As per today's CBC, count is 20k