Starting Rituximab treatment

This is 6th week of Rituximab, her mouth is full of blisters now which we have not noticed even at count of 3k. No effect of prednisolone and increased dose of promacta (75mg) Doctor has prescribed for splenectomy which is scheduled for 11th January I.e. next month.

Its been two months we are visiting hospitals continuously and now splectomy seems to be the only solution, at frist we wanted to have it asap but at some corner of my mind i am still waiting for rituxi if it start its work so didn't forced doctor to make it early than 11th, the date given by the surgan.

Yogesh

Hope all goes well.. My spleen was removed into my 3rd week of having bein told i had ITP..after that done 3 months of Rituxiin trwatment and Promacta too.. my count i still less than 18,000.. the loweat was at zero..

Normally doctors do not suggest splenectomy at early stage but again all this depends upon the severity of the situation. Like when my wife was diagnosed first in May13, she well responded to prednisolone and in just 7 tablet of promacta (50 mg) her count kept on increasing till Oct'13 (198 k).
But now from October onwards she is not responding to predni, promacta (75 mg) and four standard doses of Rituximab. Now doctor has prescribed for splenectomy.

How are you doing now, hope you must be feeling better. What treatment are you following now.

Yogesh

Hi Sandi, Hope you are doing fine.
As you said while getting treated with rituxian your count was <10k during the complete month and then suddenly ncreased. Did you take any other treatment during that period or just waited for Rituxi to start its work?

Thanks, Yogesh

No, no other treatment. My hemo wanted me to take Prednisone but I said no because I wanted Rituxan to work on it's own. I have no idea now why I cared about that, but yes, counts were under 10k that whole month.

Update - 6th week of Rituxi- count as per 31st Dec CBC is 60k (last week it was 6k) with 50mg promacta & 30 mg prednisolone. Visited her doctor today, he asked us to hold the splenectomy, look for the next count and reduced prednisolone to 20 mg and promacta 50mg on alternative day.
Not sure on promacta as she also tried 75mg for two weeks but it did not help and then reduced to 50 mg without telling the doctor. Hope rituxi has started it's work.

Yogesh

Promacta can take time to work. You have to be patient and not give up too quickly with some of these meds.

Update- 7th week of Rituxian- Count as per yesterday's CBC is 30k with 20mg prednisolone and 50mg Promacta on an alternative day. Promacta was reduced to alternative day from daily as her doctor want to check if increased count of 60k is result of promacta or rituxian. We were under impression that Rituxi might have started its work as this is the 7th week. We were not very sure on promacta as from last two months she is continuously taking this pill and seen the count of 3k. But after having count of 60 Just in a week's time her count rrduced to 30k.
Considering her two months record 30k is not too bad but does this reduction means that rituxi still has not started working.

Yogesh:

It's hard to know what is working if more than one treatment is being used at the same time. At this point, I wouldn't worry too much about that. The important thing is that your wife seems to be maintaining counts over 30k....a nice, safe count.

Sometimes Rituxan does not cause a patient to get normal counts. Some people only get a partial response, that is, maintaining counts that are out of the danger level.

Whatever is going on, she seems to be on the right track.

Yes Sandi you are correct, 30k is decent and safe count for an ITP patient. But point here is she is not getting her count stable. During last one month there were huge fluctuations, count went up to 40k and then in two week s time came down to 6k and again within a week count dropped from 60k to 30k.
Hope her count remain stable with a safe level.

It can take time to achieve stability. Going from 40k to 6k is not good, but fluctuating between 30k and 60k can be typical. It would be rare to see counts that are basically the same every week, especially with different treatments going on.

Hang in there. It looks like things are slowly going in the right direction.

From yesterday she is having nausea, cough, multiple episode of vomiting, tired and not feeling like eating anything. This is the first time she is facing these problems. Is this normally happens in ITP or these are the symptoms of low count. Last Tuesday her count was 30k. She is on 20mg prednisolone and 50mg promacta on alternative day.
Booked appointment with her doctor for tomorrow, hope all is well.

Sounds like a viral or bacterial illness. Not related to ITP. Make sure she doesn't get dehydrated. If it doesn't stop, you might want to go to the ER. Vomiting and coughing with low counts may not be good.

Thanks for your kind advice Sandi. We are regularly giving her tepid water to avoid dehydration. We live in northern part of India and this is winter here and very much cool, quite possible she got cold since could not give her any normal medicine for cold and cough so had to wait for doctor's appointment. We are visiting her doctor tomorrow morning.

Okay, I hope she feels better soon!

Hi All,
I've had another platelet count yesterday approximately two months, 2 weeks after first Rituximab treatment. I was hoping for a big increase, at least 100: so that I could declare a partial remission. The count came in at 76. This was up from the count done last month (66). I'm pleased with the count. It shows that Rituximab is working. It would still be great to break the 100 Barrier. The next count is scheduled in six weeks.

I had an indium scan done 18 months ago, when my count was 22. The scan didn't work. I was told that my platelets are not good at taking up indium. But, there was doubt that the low count may have played a role in the failure. I'm hoping to have the scan again if they accept me.

Hi, just want to share the update on Usha's (my wife) today's CBC report.
This is her 9th week of four standard dose of Rituxian. As per today's cbc report her platelet count is 150k (last week it was 30k) with 50mg promacta on alternative days and 20 mg prednisolone on daily.
Since dose of promacta has been reduced from last two weeks (weekly platelet count 6-60-30-150) can we say rituxi has started its work and stop the promacta. Going to visit her heamatologost to discuss these points tomorrow.
Hope she will achieve the stable counts now.

You must be very happy with the good increase in counts. Hope she is feeling better too, you said she was not feeling well with a cough and nausea. Maybe the dr will be able to decrease the promacta and prednisone. It is hard to know what is working since she is on more than 1 treatment.

Hi Dru, Happy to see this highest count of last two months. there is still little bit cough, she is taking medicines for that, apart from that she is feeling well now. Splenectomy is on hold now.
Visited her haematologist today we were expecting to stop promacta considering its high cost (a month’s cost is almost to my complete months’ salary . In last two months due to her multiple hospitalisation + cost of rituxian my insurance limit is exhausted, now I am paying for it from my own pocket), which she was taking continuously from last two months (currently on 50mg on alternative days from last two weeks) now doctor asked not to stop it immediately as it may have some bad effects and prescribed 25mg on alternative days and then check the count again and then consider to stop it and 10mg prednisolone.
Can’t we stop promacta immediately at this point of time when she has decent count of 150k (Though this would not be immediate as she is on alternative days of promacta from last two weeks.), as far as I am aware this is prednisolone which should not be stopped immediately.

Any thoughts on this?

Thanks,Yogesh

Yogesh:

I would not stop Promacta right now. Your wife is finally at a good point with counts and no one knows for sure what has actually been causing it. It may not be due to Rituxan at all, or it could be a combination of both Rituxan and Promacta. If you stop Promacta abruptly, you take the risk of having her counts drop again. You don't want to be back at square one which will cost more money in the long run.

Try to be patient and stay on this course. It seems that the Dr. has her on a really low dose. Give her more time to stabilize and slowly withdraw from Promacta. She has only had normal counts for a short while and right now, her counts are perfect....not too high, not too low.

I think there might be some financial aid for this drug, but I don't know anything about it. Does anyone else know how Yogesh might get help?

On 22nd January we celebrated our 7th marriage anniversary and her highest count of last week which was 150k on same night she noticed a red spot on her hand and on next day a blister in her mouth. Got platelet count today i.e. 10k which is a drastic reduction as compare to last week. We were thinking that Rituximab might have started its work as this is 10th week of her last infusion but don't think so now.

She is on 25mg promacta on alternative day and 10 mg prednisolone daily from last week (after count of 150k)

Update 12th week of rituximab : ons 28th January her platelet count was 80k with 10 mg prednisolone of daily dose and 25 mg promacta on alternative day (from last two weeks). With prescription of her Doctor stopped promacta on 29th January, post that she started feeling too much tired, fatigue nausea, not eating anything and vomiting if eating forcefully. All the time she was coughing with on and off fever.
At first we took the same medicines that she had last time when she was feeling the same symptoms but it did't help. Her heama asked to consult Gestro department, who then asked for malaria and Typhi ig test with cbc. Both of these tests came negative and cbc with platelet count of 346k. Tlc count was 29k which was more than double and as per doctor, it might caused by viral infection. Doctor put her on antibiotics, from yesterday she is feeling bit better. Hope things may get well soon with her.
But the kind of fluctuations she has is normal in ITP? A snapshot of her last five weeks count:
30k - 150k -10k -80k - 346k

Yogesh

Yes, it is normal until a person becomes stabilized on a treatment.

Yes, I have had counts like that, fluctuating a lot. It is frustrating, but soon her counts should stabilize .

Yesterday noticed few red spots on her hands, on lower legs and in mouth, which are the symptoms of low platelet count. Got the CBC today, as per the report platelet count is 12k. After reaching at the level of +300k, it is bit disappointing. From last week she has been on 5mg prednisolone and started 100mg dexamethasone after having normal G6PD test.

Is it due to the prednisolone has been tapered from 10mg to 5 mg from last week and usually expected after Rituximab treatment?

Do we need to take care of something specific here e.g. food or any other thing?

Her weekly count trend : 30k - 150k -10k -80k - 346k – 270k - 12k

100 mg's of Dex? Are you sure? That is extremely high and would be enough to make a person feel crazy.

Personally, I believe that all of the stopping and starting of treatments is what is causing the highs and lows. It's likely that Rituxan didn't work and she probably needs one of the TPO's to get stable. It seems like Promacta was working but they stopped it when she got sick.

This is 100mg. Dapsone.
I believe you are correct, but with promacta in two months her count did not increased too much but after stopping it, count reached to +300k.
Have scheduled appointment with her doctor today.

Thanks,
Yogesh

Dapsone - makes more sense! That one can take a long time to work if it works at all. I tried it once and was allergic to it.

Yes, doctor mentiond about the allergic reaction and to ensure that we were asked for g6pd test (i belive this was to ensure about allergic reaction) and recommend for depsone after normal test results.

Three weeks back also her count reduced to 10k when prednisolone was tapered and then jumped to 80k without any change in her medicines (without promacta). It seems like a puzzle.

Hi ALL,

I now have a count of 120, this is 3 months after having Rituximab. Fell off me chair when the doctor told me!. So officially I'm in partial remission. Here's praying that the effect lasts a few years at least. I need a break.