Starting Rituximab treatment

Hey kyasseen, good to know the nice count and really happy for you. Wish you have the same numbers forever. Magic of rituxian worked for you, have a break n enjoy.
Are you taking any other medicines during this time.

Hi Yogesh,

No I'm not taking anything else. Unfortunately, had a bit of a scare today. I woke up this morning with Petiches on my left hand and wrist area. Ended up in Hospital. Platelet count came back as 87. Disappointed, but surprised to get petiches at such high platelet count.

'Normal' people can get petechiae too especially if they do something like lay on a hand in an awkward way. So Kyasseen it just proves that you are normal.. LOL.

yes this is quite strange to get petechiae in count like this. But as per my experience with ITP anything is possible. As I have mentioned earlier about my wife's count dropped to 10k after reaching to300k with in a week while taking same medicines.she didn't have petechiae at count of 3k but later on she had at count of 10k. In your case quite possible there could be any other reason for that. But as everyone keep on saying on PDSA that do not look at the count watch out for the symptoms. Its good that you visited your doctor but now you are at safe level of count. How are your petechiae I believe they must be gone by now.
My wife is also having huge fluctuations after two 3 months of rituximab, her last week's count was 75k after 10k before that. She is on 5mg prednisolone and 100 mg dapsone.
Hope everything will be fine with you.
Yogesh

Update (post 3.5 months of rituxian) - just had platelet count on last tuesday which was 45k, bit disappointing as compare to last week's count which was 75k with 5mg prednisolone and 100mg dapsone from last one month.
Visited her doctor on wednesday, now asked to stopped prednisolone completely and just to have daily dose of 100 mg dapsone. also doctor asked to get count on monthly basis rather than every week.
Her previous weekly counts - 10k - 80k - 346k - 270k - 12k - 75k - 45k.

Yogesh

Well at least she is staying within a safe count and the doctor feels comfortable with moving to monthly blood tests.

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

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

Update (post 4.5 months of Rituxian) – Her latest count on last week – 150k with daily dose of 100mg Dapsone. Doctor asked to carry on the Dapsone for next three months, not sure what doctor is going to prescribe after that.
Previous Counts : 10k - 80k - 346k - 270k - 12k - 75k - 45k – 150k

hi Yogesh-- Does she have any side effects with Dapsone? thanks for sharing the update

No side effects as of now apart from hair fall. She is facing heavy hair fall problem from last 10 or 15 days. We checked with her doctor about this but he denied that this is due to Dapsone.

Did anyone experienced this problem with Dapsone?

Update (6 months of Rituxian) – Her latest count on last week – 227k with daily dose of 100mg Dapsone. It’s been around three months she is on Dapsone only combined with Calcium.

There is improvement in her hair fall problemFrom, however from last four days she is feeling tingling sensation in her fingers of both hands whenever she hold something by her fingers; we just visited a general physician nearby our residence and explained about ITP condition and medicines she is taking. We were advised by doctor that it normally happens when someone who is taking Dapsone for long time and prescribed to take Folic acid tablets on daily basis with Dapsone and Calcium to get rid of tingling.

Does this normally happen with Dapsone or should we consult this with her hematologist immediately. We already have an appointment booked with her heama in mid next month and if this is usual then we can consult this in our next appointment.

Last two months counts: 150k - 150k

You could talk to her Hemo about it, but that probably isn't his area of expertise. If it continues, he may refer her to a Neurologist. I did find some very old articles about Dapsone causing peripheral neuropathy. The fix was to stop the drug.

Great counts!

Hi all,
I'm 20 years old and was diagnosed with Chronic ITP on the 15th January. Since, I was admitted to hospital with a platelet count of 2, after treatment with steroids I was discharged with a count of 8. After a week still on steroids my count increased to 31. However the following week dropped to 0.

I have just received my first dose of rituximab and like most, fell asleep throughout the treatment due to the Piriton pre med. The experience was actually very pleasant compared to what I had previously read online. I know it can take up to 4-12 weeks before you can respond to the treatment. I was just wondering if anybody's count improved the following week? I'm desperate to know if the treatment is working or not? I can't wait to get back to work! I hate sitting around like a couch potato!

Many thanks
Katie

Katie:

Some people have had a response around three or four weeks, but not usually sooner than that.

What do you do for a living that you can't work?

Sandi:

Ah, thank you. Hopefully I'll see some good results in the following weeks.

I'm a assistant manager of a fish and chip shop, preparing food, frying and serving. I also do a lot of cleaning which involves a lot of heavy lifting. My Hemo has told me I'm not allowed to work until my count gets to 30 and has written me off work sick. Is it unusual to be off work with a low count? I just presumed it was normal? I'd be back there in a heartbeat if I could be. I can't stand not doing anything!

Thanks again
Katie

Katie:

It depends on the type of job. I kept working with low counts, but I had an office job where the biggest threat was a paper cut or banging my leg on my desk (which I did all the time). I wouldn't say that it's normal to not work, but again, it depends on the circumstances. If you have to use knives, that could be a problem.

I hope you get a response soon!

Hi Katie. I am about the only one on here who did see results after the first treatment. In fact, I kept going up with every one. I was actually surprised when I still got the last dose. That was back in 2011.

Good luck with your treatment!

CindyL:

That's brilliant! Have you relapsed since? Or has Rituximab been a cure for you? Thank you!

Hi Katie,

If you have read this complete topic many people have shared their experiences that how they responded to this treatment.

If I talk about my wife’ condition, she got treated with rituximab in Dec’2013 and did not get any response till two months and after that her count was raised to 150k but till next two months there was huge fluctuations in her counts.
During this time she was also having Promacta and prednisolone as her doctor didn’t want to stop these medicines. Though still I don’t think if these medicines helped her, but it was completely her doctor’ decision.

While this time she was taking care of normal house hold work but we ensured that she is not doing any cutting work or using knife.
From various experiences shared here, I have learned that in ITP all people respond differently to different sort treatments. It depends on person to person when they need the treatment and what treatment is required. Keep eye on the symptoms and consult with your doctor accordingly, slowly and gradually you will learn what work for you and what not.

Most of the people get very long sustainable response with rituximab, hope for the same to you.
If you feel worried or any doubt, keep visiting this site. It’s been great source of information and support.

Best of luck.
Yogesh

Hi yogesh,

I suppose I am being very impatient really. Only time will tell! It's promising to read that many people can continue with their day to day life and careers with low counts, I think a career change would probably benefit myself in the long run.

I have had a more thorough read through this forum and some of the other forums today. I must agree, they are extremely helpful and reassuring. Thank you to everyone that posts and replies, the support is tremendous!


Thank you for sharing your wife's experience and for your advice. I hope your wife is well and her counts are normal again!

Thanks Katie

Katie:

You don't have to make any life-changing career decisions just yet. Remissions happen all the time and sometimes, ITP resolves within a few months. Even if you don't go into remission, most people can keep counts above 50k.

Rituxan is not a cure (nothing is), and remissions last an average of a year. Some people have longer ones and some have shorter ones.

Sandi:

Thanks again for the advice Sandi. I'd be very happy with a steady count of 30+!

My next appointment is on Friday for my 2nd dose of rituximab. My hemo told me that if I were to have a successful splenectomy and my counts were to return to normal then they should not drop again. Is that correct?

I was originally suppose to be having some sort of test to see where the platelet destruction was taking place but we had no way of getting my platelets high enough without interfering with the test. We were hoping the destruction was mainly in the spleen and that a splenectomy would be a better long term treatment. If the rituximab works, and I am to relapse, my hemo is still hoping to do the test before my count gets too low again.

On Monday I had a ultrasound and met with a surgeon, I don't think my hemo is feeling particularly optimistic about the rituximab, either that or she is just very overly prepared for a relapse! I get my results on Friday.

Thanks again,
Katie

Katie:

Your Hemo's statement about splenectomy is a bit optimistic. The initial success rate is 60% and that percentage drops over time. Splenectomies can, and often do fail months or years after an initial success. Sometimes the liver can take over the role of destruction. I am pretty sure that the only place you can get the test to find the site of destruction is in the UK. Where do you live? It's called an Indium Labelled Screening Test. The test can not tell you if a splenectomy will be successful, but it can tell you if a splenectomy will not be successful. If the latter is the case, you don't have the surgery. If the former is the result, having the surgery gives you a shot at remission. Splenectomy is not a cure, but can cause remissions.

Pros:

1. Patients younger than 40 have a better shot at remission.
2. Splenectomy can cause a long remission.

Cons:

1. You are at risk for sepsis for the rest of your life and need to keep current on all vaccines.
2. After splenectomy, the risk of heart attacks and strokes goes up. If it fails, some of the ITP treatments can raise that risk (even in young people).
3. If the splenectomy fails, some of the treatments used for ITP compromise your immune system in addition to the protection that the spleen provided.
4. After Rituxan, the vaccines needed prior to splenectomy are not effective for at least six months following Rituxan infusions.

It's a tough decision. The ITP Guidelines state that since remissions can occur within a year of ITP diagnosis, holding off on splenectomy until the year is up can prevent unnecessary removal. Some of the top ITP specialists are not even recommending splenectomies any more. If you are going to consider it, read as much as you can and at least make an informed decision.

Here are some articles. It's a lot of reading, but you're bored anyway, right?

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

www.haematologica.org/content/94/3/443?ijkey=a92f69d450dd728ccf5abbb556f929a0cf3c9005&keytype2=tf_ipsecsha

www.bloodjournal.org/content/121/23/4782.abstract?sso-checked=true

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

www.bloodjournal.org/content/115/2/168.full

Sandi:

Thank you for all of the information.

I live in England, I didn't realise that the test was only UK based or that the splenectomy has stopped being recommended as frequently.

Originally I was given the option of either a splenecetomy or rituximab: me and my family decided on the splenectomy with a little online research and the information the hemo provided with me.

I was told a splenectomy was 66% successful in cases and rituximab was 60% successful in cases. I was also told that I had a 80% of relapsing with rituximab? Is that correct?

I'm thankful we had to stall on the splenectomy with all this new information! It's defiantly seems better to wait and see how much body reacts to the rituximab over the next year before doing anything rushed.

Thank you for the articles. Bored is an understatement, I'll get through those in know time! Hahaa! Thank you for all your information, advice and help!

Splenectomy is 66% successful initially. Some articles quote 60%...it's close. At any rate, initial success does not guarantee lifetime remission. If you have access to the Indium, go for it before deciding on a splenectomy!

Yes, relapses are common after Rituxan, but long remission do occur. You could possibly have acute ITP and if you have a splenectomy too soon, you'd never know if you would have gone into remission without one.

The video I posted for you is presented by Drew Provan, the top ITP specialist in the world. He is in the UK and if you are close, it would be worth it to try to see him for a second opinion. I believe he is at the Royal London Hospital.

Thanks Sandi:

Oh, my hemo told me I most likely had chronic ITP due to my counts crashing and rising. Is there still a possibility of having acute ITP?

That's brilliant, I thought that more research was based over in the USA. I'm still making my way through the articles, currently trying not to turn my brain into mush! Haha, it's a lot to take in. You have a lot of great knowledge.

Thank you again!

Yes, you could still have acute ITP. All 'acute' means is that it resolves within the first year. 'Chronic' ITP lasts longer than a year.


ITP is classified by duration into newly diagnosed, persistent (3-12 months' duration) and chronic (≥ 12 months' duration).1 Whereas ITP in adults typically has an insidious onset with no preceding viral or other illness and it normally follows a chronic course,9 ITP in children is usually short-lived with at least two-thirds recovering spontaneously within 6 months.

www.bloodjournal.org/content/115/2/168.full

Even if ITP is considered to be chronic, it does not mean you will have it for life. Remissions happen all the time. My counts were up and down for 8 years, then I went into remission. It's been 9 years since I've had to treat.

Update – 1.6 Years of Rituximab:

Just wanted to share the update on my Wife’s progress. It’s been 1.6 years to her Rituximab treatment, apart from the initial 3 or 4 months when we noticed huge fluctuations in her counts, now counts are appearing quite constant within the normal range. She is getting her count check in every two months and visiting her doctor. From last one year she was on daily dose of 100mg Dapsone including calcium and Folic acid as per her doctor’s prescription, three months ago she was prescribed to take 50mg and from this month onwards she has been advised to stop the Dapsone completely and take some multivitamins.
Her last three months counts are - April’15- 294k, Feb’15 – 394k, Dec’14 -326k

Thanks for all your support.
Yogesh

Wonderful report, Yogesh! I am happy for you and Usha.
There are very few here who have used Dapsone. Before The Dapsone she had wildly fluctuating counts, so it is hard to tell what was working - the Rituxan, the Promacta, the steroids, or some combination. Do you think that the Dapsone made the difference? What does her doctor think?