Effect of rituximab

My father has completed his 4th and final dose of rituximab yesterday. Before first infusion his platelet count was 2000 with just bruises (red spots on various body parts) and no major bleeding. After 1st dose it went up to 31000. But after 2nd, 3rd and 4th dose it was 28000, 13000 and 12000 though red spots are dissappearing and there is no bleeding whatsoever. Does it mean he is nt showing any response to rituximab? He is asked to follow up after 4 weeks. Can this 4 week time reverse the results ? Is the situation getting worse? Is it like no other option bt to wait for 4 weeks?

Varenya:

Rituxan isn't known to be a quick-acting treatment. The average response time is 4 to 12 weeks after the first infusion. If someone sees a response before that, they are lucky! I would definitely give it more time. If he doesn't have any symptoms, that's great! That means his body is handling the lower counts.

If he starts to have more symptoms, he should call the doctor and ask if he can use something else in the meantime, like IVIG or steroids to try to bring his count up.

But if situation remains like this without any sort of bleeding will it be ok for him to live at such a low platelet count? How low is too low for the count if its not showing any symptom of bleeding ?

I always find what the doctors say and what they do to be contradictory. They say we can live well with low counts but then when under 20 or even 30 they start getting nervous and want to treat. My natural count when not treating is under 10 and they don't want me to stay there so I treat with the aim of getting a count over 30. They particularly don't like blood blisters in the mouth with me as they say that's an indication of what is happening elsewhere in the body. So if your father ever gets those at a very low count, they are going to want to treat.

I don't know how old your father is but the older we get the more likely the doctors are to want to treat. I suppose as we age we are more likely to have strokes and internal bleeds anyway and having low counts would just make it worse but that's just a guess.

Hey Ann ! Thanks for sharing ur experience. By the way my father is 56 yrs old. He is also taking prednison which will tapered off within 20 odd days...right now its 25 mg.

You just have to take things one day at a time. You'll know if symptoms increase and if they do, get help. People can live fine with low counts, it's the symptoms that you really have to watch.

Hi there Vareyna

I have been diagnosed with ITP since 1994 and this year is the first time I've had Rituximab which I believe is the same looking at the treatment information - brand name or something.

This year been different for me and usually I am given prednisolone (steroid) along with IVIG and it all goes okay. I got taken on Boxing Day and had a new year holiday booked so they gave me just the prednisolone. My count went up enough to double numbers so they let me go by the skin of my teeth. (I missed the coach but luckily the hospital is at a town of a major railway station and got there 2 hours after the group got there).

May and my count went back down again. I had an overnight stay and the Hemo, quickly sent me home - thankfully though back on 60mg steroid. I never got off those as when I got to alternate dosage my plalete count was dropping anyway and the altenate dose wasn't enough to keep it up. So got taken in again in July on a count of 8. Took me off the steroid and gave me IVIG for five days and was sent home in time - again but not for a holiday this time but to complete a course as had a 30 minute teach to do.

Follow up appointment and discovered my platelet count was down to 5 and yes I was aware it was dropping but knew I had the appointment. After a very long day hanging around they decided to give me steroids (again) and rituximab and had that the first week last week. My platelets had already gone back up before the first dose so can't say much about that. A very healthy 349 but thankfully like me, the staff nurse reckoned because of the steroids. I had a big fear that they would see a high count and not bother with extra treatment. Reduce my steroids and be back around to square one again. So I was very relieve when they set the canillar needle in and began the treatment. I have had two doses now (one this friday). I don't know my platelet count because when the doc told me am sure that she had read the results of last week as she only said they were good - or either that they had dropped a little again in and wasn't worth telling me the number as might worry more than needed to so decided to trust her on the good. For I know when they are below 10. I don't know when they are between 10 and 100 etc. But know when they are below 10 and that is when they seem to act for me because of my symptoms I guess too.

Yes, everyone on here says we need to be patient with rituximab. I think all treatments can take a while. If the doctors say he is okay to go home then he is. I have been home on count of 4 in may. The main thing is to be aware of injury. If it gets worse then ring them.

I believe they can repeat the course in few month time if first one dont work. We are all different and response time varies. There is no hard and fast scientific rule of thumb which does make it harder when we don't know what to do about it. Patience is the secret to the game I think though well aware it is very much harder to exercise. One day at a time as Sandi suggests though am more than aware how hard that is to do. I have built up a reasonable relationship with the team and even to this day when am happy enough with what I got but never like/enjoy ringing the ward but I know they are there ready to help and will do their part in answering anything. And always welcoming when I arrive. Compared to most on that ward I am not sick per se. That does not matter we are treated with equal respect though like I say it can be scarey ringing and I think they know that.

Take Care
Rhiannon

Huff...a sigh of relief ... yesterday the platelets count has reached above one lac...at least for now I can say that yes Rituximab is effective but you have to be patient... now let's see how does the count go ahead...hoping for the best...

so pleased for you and for your father Patience is the hardest thing to achieve especially when its all new to you. But patience is the a good way of handling it all. Hope for the best for you two in the future

And now when counted again after a month it has come down to 51000 from 108,000. Doctor says if there is no bleeding then nothing to worry for. We don't no whether it is gonna saturate at some point of time or will it continue dancing.I think its better nevr to go for platelet count check as it only increases tensions.

I wouldn't recommend avoiding counts, but you can stretch them out so you don't have to think about it often. His counts could still go up, it happens. Good luck and keep us posted!

It's been more than two years since I posted anything. But the point I would want to make is in these two years the count of my father's platelets is fluctuating between 20k to 35k. In fact, last month it dropped to 15k but now it's 29K. And other than these low counts, his body is showing no symptoms whatsoever. He is almost fit. Any suggestions would be helpful on what should be our next course of action.

Hi Varenya, My wife is also getting treated with Rituxian and this is her 7th week of first infusion in last three week s her count fluctuated from 6k to 60k in last week and today 30k. She was diagnosed with ITP in May'13 and what I have learnt so far from doctors and PDSA that watch out for symptoms if there is no symptoms of bleeding then its fine. Most of the people are doing fine with count of 20 k. 30k is considered as safe level without any treatment.
Is your father taking any other medicine at present?

Thanks,
Yogesh

Varenya:

At this point you'd need to decide if he can just do 'watch and wait' or seek treatment. If he seems fine with those counts, there is nothing wrong with just monitoring things. If he'd prefer to have higher counts, you could look into N-Plate or Promacta.

Thanks Yogesh. Earlier he was not taking any medicines but lately he has been trying some Ayurvedic stuffs which, I suppose, should not possess any side effects.

Sandi - Thanks for your advice. I had a look over the treatments you suggested. Their side effects in themselves are terrifying enough. So, I suppose monitoring the things is the better option as long as he doesn't show any symptoms.

Most people do fine with N-Plate or Promacta. The side effects do not hit everyone....sort of like Rituxan. That one can look quite scary too, but your Dad seemed to do well.

Hello Everyone,

The reason I am posting a reply on this long lost thread is because the platelet counts of my father has been again started to go down lately. He was treated with Rituximab five years ago and since then his counts were hanging around 25-35K. But since past two months they are decreasing and today it has come down to a mere 3000. Yesterday they were around 11K.
Having said that, he is showing no symptoms whatsoever like what were shown 5 years back. But the count is alarming. Doctor is suggesting to again take the same course of Rituximab and is saying there's no need to go for splenectomy.
I need your valuable inputs on the same. Sorry, I was not following the news around ITP and its treatment since long time so I am not sure if any new or effective treatments are in place. Whether or not I should consult different doctors or what should be the best step at this point which should be taken. I am confused and any help is appreciated.

There are newer treatments especially nPlate and Promacta. However, you could also do a second round of Rituxan. That has worked for a number of people here including me, I've been in remission since 2009 from my second round. It is great your doctor sees alternatives to splenectomy, so many will not.
Erica

Varenya,

Retreatment with rituximab usually gives results similar to the original treatment (in 75% of patients) so his odds are better now than they were the first time around. Based on that I would strongly consider retreating.

onlinelibrary.wiley.com/doi/10.1002/ajh.21512/abstract
Repeated courses of rituximab in chronic ITP: Three different regimens

Recent studies have shown that Rituxan can be given at a lower dose of 4 x 100 mg, without diminishing the effectiveness.

pdsa.org/forum-sp-534/7-treatment-general/27993-low-dose-rituximab-rituxan-research.html?limitstart=0#40513
There are now seven studies that have tested the lower dose of Rituximab with favorable results. These studies included a total of 199 patients treated for ITP with low dose Rituximab (100 mg X 4 days). In each of the seven studies responses were comparable to typical standard dose treatment. In at least one study, infusion-related side effects were significantly fewer, so some side effects seem to be dose-dependent, though that may not be the case for all side effects.

Promacta and Nplate are a good option, but at much greater expense, and require ongoing treatment.
Your father seems to have found a good hematologist, who doesn't panic at low counts, and who does not push for splenectomy. I think he is on the right course.

Can we also go for some homeopathic treatment? I came across couple of articles in this very forum and outside of it too where patients are benefited from homeopathic treatment.
And if we go for homeopathy, can its treatment go in parallel with regular Allopathic treatment?

You could use any true homeopathic treatment without concern of interactions because homeopathic treatments are indistinguishable from water.

The risk would be if your homeopath has you using other remedies that are not strictly homeopathic. Those could potentially cause trouble.

Here's a video of the effect of an overdose of homeopathic preparations: www.youtube.com/watch?v=sCYvOgBaEY8

Erica

Not that I believe in homeopathy, but trying two different approaches at the same time seems counter-productive and overly expensive. You wouldn't know what is working and of course, since Rituxan worked the last time, it should work again. You'd be spending money on homeopathy with absolutely no proof that it did anything.

Hello, I'm new to this site and fairly new to ITP (diagnosed in February this year). I just had my third round out of 4 of Rituxan and noticed that my thyroid was very swollen. I hadn't noticed it until the day before my 3rd treatment, but when I asked my Hemo Dr. About it he didn't seem to think it was a very big deal...at least that is what I got from the interaction. He did say we could do some blood work for thyroid after my last treatment of Rituxan.

My question to any of you, have you seen this on your treatment, or heard of anyone else experiencing this? It is pretty shocking to me, especially when I touch it...I figured he would be more concerned.

I did ask him if it could be the Rituxan, or the Prednisone I am taking, he said probably the Prednisone. My count has been as low as 10 when first diagnosed in February, but after 1st Rituxan went from 33 to 74 so he took my Prednisone from 60mg to 40mg a day. The 2nd one though I went back to 30's count, so he put me back on 80mg prednisone day...it is really playing heck with my blood sugar and now possibly the thyroid.

Thanks for any info or thoughts.

I haven't really heard of Prednisone or Rituxan causing an enlarged thyroid. The only thing you can do is follow up and get a thyroid panel done. You'll know more then.

I was on prednisone way too long and it never enlarged my thyroid - didn't come up with Graves until well after I was off it. Our dentist's assistant [no ITP, no prednisone] just had to have her thyroid removed due to it being enlarged.

You need to see an endocrinologist if your thyroid is enlarged - first though as Sandi said get a complete thyroid panel done - then again maybe the endo would rather order the blood work her/himself. "..probably the Prednisone." doesn't hack it - you need an answer.

Everyone's motto should be: When in doubt, check it out!!

Good luck!

I will do that, thanks.

I have completed my 4th treatment on 6/12/16. My 3rd treatment showed an increase in platelets, but I am still on prednisone. Starting to decrease now. This week I am experiencing paid in both my calf muscles. Is this a side of effect of the rituximab? It has really affected my movement. I have not read of this being a side effect, and am trying to figure out what is going on.

Prednisone can cause that because it depletes calcium, magensium and potassium. Try sports drinks and bananas and if it doesn't go away, consult your doctor.

I have had very low potassium counts, and now taking 20 mEq twice a day. I am having trouble with stairs and constant fatigue at work. I don't know if it's the ITP, but first 4 hours of work catching myself falling a sleep while sitting or even in a conversation. I do have sleep apnea, but much worse now after ITP diagnosis. Gonna start taking magnesium supplements as well after what Sandi wrote.

Do you treat the sleep apnea?