Starting Rituximab treatment

Thank you for the update Yogesh - very happy to hear your wife is doing so well, may you both continue to receive good news!

Yogesh - that's wonderful. Thanks for checking in and letting us know. I remember this story well. It's always nice to know how people are doing once they hit remission. Best wishes!

Nice to hear people with good updates! So many of us wander away when numbers are good and come back when the numbers are low!

Thanks All,

Regardign Rob's question- honestly speaking we are also not sure what is working here. I believe it’s rituxian’ result, as she has stopped prmacta and prednisolone almost one year ago, even when she was on these medicines, her counts were not like this. However she was taking Dapsone till last month but her doctor said Dapsone can’t raise the counts to this level.

We still remember when after two months of her rituxian treatment, she was on high dose of promacta and prednisone and her count were moving around 10k. We were so much depressed that we agreed upon doctor’s recommendation for splenectomy. It was a nice coincidence and very fortunate that just a day ahead when we had appointment for her surgery, her count crossed over 100k and her doctor put her splenectomy on hold. Since then her counts are in normal range.

Some time we assume that these counts are going to remain in good range like this forever . We also think about why can’t one treatment of rituxian cure it permanently

Having read the experiences of people on PDSA, we got to know that everyone respond differently to all available treatments and its more about understanding how your body respond in particular situation and treatment.

Yogesh

Hello my name is Juan, I am a newly diagnosed ITP patient. I am 27 years old, I went to the doctor because I noticed that I had been getting bruises without remembering any cause. They checked my blood and all my levels were fine except for my platelet count which was at 20K. My doctor put me on Prednisone starting at 100mg a day and then reduced by 20 mg every 3 days, they checked my count three time and it stayed between 20 and 24. This did not work so next step was the Rituxan. I started my first treatment on Wednesday of last week, had chills and a sore throat during the treatment but that was all, and a headache at night. Went to my second treatment this wednesday and my blood count dropped to 6K. This has me worried because I have not been lower that 20K and I read that once you drop under 10K you are at a bigger risk. I have a few very small bruises in my arm but that is all, no gums or nosebleeds. I have read a lot about people not responding to the Rituxan until even 3 months later. I am only worried because I have not read cases of people dropping their count so dramatically one week after the treatment. Does anyone have an idea why this could happen or have similar cases?

Appreciate the help and want to say that this website has helped me alot since I was diagnosed. My blood pressure spiked after they told my I had ITP but reading all of this positive cases has helped me calmed down and now my pressure is back to normal.


Regards,
Juan

Welcome Juan. If you are not having "wet" symptoms like bleeding gums and blood blisters, then you should not stress, even though your counts are low. ITP patients often have "stickier" platelets, and are able to clot okay at lower platelet counts. You need to watch your symptoms.

You did not say how long you were at various doses of prednisone. It is very quick to reduce from 100 mg by 20 mg every three weeks - more importantly going abruptly from the last 20 mg to zero - can cause your platelets to drop, and also make you feel terrible. Steroids should be tapered very gradually, especially at the end. I do not think it is the Rituxan causing your platelets to drop.

There is some good evidence that combining Rituxan with high doses of dexamethasone (a much stronger steroid, given 40 mg/day for 4 days) can improve the efficacy of the Rituxan. This would also help to increase your platelets to safer levels until the Rituxan can begin to work.

Sometimes it can take 12 weeks for Rituxan to work, but usually it works much faster, and 4 weeks is not unusual.

Thank you Rob for your reply. I started with 100mg and took that the first three days then 80mg for three days, 60mg - 3days, 40mg- 3 days, 20mg - 3 days and finally 10mg - 3 days. My last day taking Prednisone was on Monday and my CBC was on wednesday and it showed at 6K.

Thank you for the advise about the dexamethasone I will tell my doctor. And hopefully next on my next CBC which is Wednesday my platelets go up even if its a little.

Here's an article that backs up what I said:

Rituximab Combined With Three Cycles Of High Dose Dexamethasone Provides a Long Term Response Rate Similar To That Of Splenectomy In Patients With Immune Thrombocytopenia (ITP) Of Duration Less Than 2 Years

Conclusions R+3Dex provides clearly superior results to rituximab alone. Notably, there was a 75% response rate overall (50/67 pts) compared to 50% with R alone. The 5 year response rate was almost 50% of all patients and 3/5 of responders. In patients who had had ITP for ≤ 2 years, the response is comparable to what has been reported with splenectomy.

www.bloodjournal.org/content/122/21/2310

Juan:

Your counts may have dropped because of the drop in Prednisone dose, or, they could have just gone down on their own. Counts fluctuate. My counts dropped at first with Rituxan too...they fluctuated between 11k and 3k. I had a response on the week of the fourth infusion, so it can happen fairly soon. Keep us posted!

Hello!

So I went for my third treatment today. I went up to 14k! Glad to be out of the <10k. I am alot calmer now since I had no consequences the week that I was under 10k, not even new bruises. I felt normal the whole time I was on my third treatment and hopefully my platelets keep going up! I did start taking papaya leaf extract daily three days ago. Do not know if that helped but I am going to keep taking it.

Regarding your suggestion Rob I gave a copy to the doctor today and she is going to tell me if she wants to add more treatments.

Praying my paletes keeps raising!

Read all thru this last night. Yogesh delighted your wife is better. I would hold off on spleenectomy. I personally think with all ive read that it is not such a good option. I think treatments havr come a long way and will continue to get better.its been said a lot that while it initially gives great results and may cause a satisfactory remission it does not cure ITP. If it did perhaps we would all do it. Happy that your wife is doing better.

Juan, glad you are doing better. The anxiety that comes with it is toigh but ur platelets are going up which is good.

Hello!

Just an update. Today is my fourth treatment of the Rituxan. Unfortunately my platelets did not keep going up, they are actually at 7K today. They are going to start me with the N-Plate today and going to keep doing that weekly until my platelets go up.


I'll update again next week when I know my count again.

Thanks,
Juan

The most frustrating thing about this condition of ours is its variability and unpredictability. Over the past 3.5 years I have failed completely to respond to steroids and ivig,then have gone from 3 to 200 and back to 10 on eltrombopag over 2.5 years,next have gone from 10 to 32 and back again even at max dose Romiplostin over 4 months, have then dropped to 3 on nothing over 5 weeks, had 2 platelet transfusions that disappeared the day after and now am stuck at 4 despite having had 3 of 4 infusions of rituximab at max dose. I am still oozing blood from gums and nose despite taking 7x 500mg tranexemic acid per day. My next lot of rituximab is in 5 days so I wait in hope. If that doesn't 't work where next? Am I glad I live near the hospital! I am also anaemic and breathless but so far none of the haemolysis tests have come up with a definitive answer. Any ideas anyone?
,

Margaret - Have you had a bone marrow biopsy?

Edit: OOPS I see on another thread you have had one. Unremarkable?

Yes Rob I had a biopsy when I first presented with low platelets in order to see if my marrow was making platelets and the conclusion was yes it was and my problem was then destruction not production. At that time I was not anaemic however.I have also had an indium scan and it showed that destruction was shared between my spleen and my liver. Now platelet, red cell and neutrophils are all low. AIHA was suspected but my young red cell count does not square with that . I am sure that my haematology team will keep on looking for an answer and a treatment strategy but it is getting more urgent as I am really quite weak . I have even had an echocardiogram because I have developed a heart murmur and am so breathless and it showed that because of the anaemia( Haemoglobin count 97) the flow through my heart was very fast to compensate for the lack of oxygen in my blood and that was causing the murmur.EDIT
I suppose I should be thinking of getting another biopsy as there is a possibility of now having MDS

Hi Margaret, if I talk about my wife's experience on rituxian. Her count was below 10k during the treatment even after one month of completing four standard infusions in December'13. Despite the fact, she was also taking the 50mg dose of promacta her count level reached to 3k, but suddenly after 7th or 8th week we noticed improvement in her counts but there was huge fluctuations. But after that her count settled in range of 250k to 300k.

I hope things will be fine with you soon.

Wish you all the very best for your treatment.

Yogesh

Yes, I would want to rule out MDS, but there are autoimmune conditions that can cause anemia, like autoimmune thyroid or pernicious anemia, and autoimmune diseases tend to go together.

You are being treated with rituximab? Rituxan has been associated with neutropenia and pancytopenia in aftermarket studies. What is the timing of the onset of your anemia and neutropenia wrt when you began various treatments?

Lots to investigate and rule out. I hope you have a really smart hematologist!

b12 is ok so not pernicious anaemia. Reticulocyte count ok so autoimmune anaemia less likely. Haemoglobin and Neutrophils were low before start of rituximab. Haematologist is a prof so one would hope he knows his stuff. He was thinking AIHA but no clear results.thyroid has not been mentioned so far.

Consultant now saying results show cold agglutinin anaemia as well as ITP. Bone marrow aspiration results so far show no malignancies but production of neutrophils is below normal.Results of trophine to come. Platelets now about 8 with max dose Promacta, hemoglobin 94 but neutrophils now very low at .8. Dr says some of this may be due to Rituxan but there had been a drop before. He will give me prophylactic antibiotics if I go below.5 and is also considering giving me granulocyte stimulating injections. No benefit from rituxan yet. Though platelets are low I am fine at 8, feel normal with no bleeding or bruising. Just a worry about infection. In retrospect rituxan was not a good option, I wish I'd never agreed to it.

Margaret, don't be too quick to blame the Rituxan. At least one study shows Rituxan to be at least somewhat effective in treating cold agglutinin disease.

Rituximab for primary chronic cold agglutinin disease: a prospective study of 37 courses of therapy in 27 patients
www.bloodjournal.org/content/103/8/2925.long?sso-checked=true
Altogether, responses were achieved after 20 of 37 courses of rituximab therapy. We observed 1 CR and 19 PR. Median time to response was 1.5 months

Thanks, that's what my doc said. Let's hope for the best, I'm not as breathless as I was.

Well you may be right about the effect of rituximab on cold agglutination Rob as my hemaglobin has now risen from a low of 84 to 105. My neutrophil count is up too , from .8 to 1.1 so feel much safer but the poor old platelets are still hovering between 7 and 10. My bone marrow trophine alas showed under activity but eltrombopag has been found to have a positive effect on the marrow of those with severe aplastic anemia so it may also be that which is raising my counts. I just wish it would do more for the platelets. I am however quite well with these numbers so we are sticking with 75 mg daily of eltrombopag meantime.

I am also starting Rituximab treatments. Generally, how long are the treatments? Hours? How do you feel after the treatments? Are you able to go to work the next day? How many days do you wait until the next treatment? Can you have side effects a month from the treatment? I am feeling very very anxious and scared about this. My doctor is Dr. Bussel in NY and I see him tomorrow for a visit to discuss all my concerns. He specialized in platelet and blood disorders. Although he told me that it can be very scary, he reassured me that he has seen great results with the majority of his patients.

Vanessa I had no bad side effects from the Rituxan so try not to worry. I think I had a bit of a runny nose at first . I had 4 week apart doses of 375mg. The first dose was given slowly over 4 hours in a hospital ward in case I had a bad reaction and needed a bed but as there were no problems I had the other 3 in an outpatient clinic over about 1 hour. Sadly as you can read above it has had no effect on my platelet count which 2 weeks ago was 11. The good news is that my hemoglobin and white cells are now in the normal range . Whether that is due to the Rituxan or the eltrombopag 75 mg daily is anybody' s guess. I am just glad to be feeling well and am off on holiday to France by train from Scotland in 3 weeks.I have been told I can't fly with such a low count.Hope you get a good response.

Is it Dr. James B Bussel? I thought he was in pediatric hematology. If that is him, you found one of the top experts in ITP.

If you can, schedule your treatments for Fridays so you will have time to recover, though this is usually unnecessary. My wife had Rituxan in August 2014 and had the low dose version, without any side effects. She works in an infectious disease clinic, but has had no unusual illnesses from having her immune system impaired. She has been in partial remission, with platelets around 50k - lower than normal, but not requiring further treatment.

There is a rare reaction called serum sickness which is a delayed reaction.