Having chronic ITP since 10 years

Can Anyone please help me how to recover from ITP disease.I am having ITP since 10 years.initially i was taking predensolen.after that i took Decmax 10 mg and some IVIg.now my platlet count is below 30000.

I checked with my hematologist.he is saying to take revolade. i checked with one more heamatologist he is suggesting for rituximab injection.

Can anyone please suggest me which is the best solution to come out of this disease.I am really frustated.

Please help me

There is no one treatment that helps everyone, so you will have to try the one that you think is best and see if it works.

Rituxan - 4 weekly IV infusions that take 4 to 6 hours each time. Remissions last a year on average. Success rate is about 60%.

Revolade - a pill that must be taken daily. Counts usually drop if you stop taking it, although remissions do occur months or years later. The dose is usually adjusted so that counts maintain around 50k. Success rate is about 80% to 90%.

Thank you so much for your reply sandi.

As per your experience,can you please suggest me which one(revolade or Rituxan) will be good for me.

I am confused and really frustated which is hampering my work life as well.

Kindly suggest me.

If it were me, I'd go with Revolade. It has a better success rate and so far, less side effects. Good luck with your decision and let us know how it goes.

Hi Sandy

I am an indian and currently staying in Bangalore,India and my age is now 26.and i am not married.I consulted a famous hematologist 'Dr. satish kumar',Columbia Asia hospital.

He is asking for splenactomy rather than taking revolade.because revolade cost is more in our india and he is saying we can not say how many days you need to continue with revolade.

And Splenactomy success rate is 60 to 70%.so its better to go for Splenactomy.

Can you please suggest me wheather i should go for splenactomy or not.

Thanks

I really can't tell you what to do. This has to be your decision. My first thought though is this: it's a shame that you'd need to make that decision based on cost only. Those are two very different choices and both have pros and cons. If it is possible to consider Revolade and you could possibly receive it, don't be bullied into splenectomy if that's not what you want. If the splenectomy doesn't work, what would you do then? You might end up back with Revolade which will still cost as much as it does now. Revolade has a good success rate; it's too bad it costs so much. Many people here in the U.S. have the same problem with paying for it.

Good luck and keep in touch. I hope that whatever you decide works out for you.

Here is an article written by a researcher at Bangalore Medical College and Research Institute, in Bangalore where you are staying. The article includes his email:
ijcci.info/pdf/apr14/Article2.pdf [hat tip to MrsB04]
Perhaps he could give you a second opinion.

The article discusses a different treatment - Dapsone - that is far less expensive than the other medications that have been mentioned. I must tell you that there is much disagreement on this discussion board about the the risk of side effects. My personal opinion is that Dapsone is not the best option, but it is a better option than splenectomy. It must be used cautiously, with proper pre-screening and subsequent blood monitoring.

Thanks Rob for your reply.

Before 10 days my platlet count was 13,000.so doctor prescribed me predensolen(20 mg) for 7 days,
Daspone to continue for 3 months and Azarone for 7 days.

After taking all these medicene,i went to hospital and did CBC Test. My platlet count was 7,000.

So doctor asked me to do the splenactomy. but i was not agreed with splenactomy.i agreed with Revolade 50 mg.

Now continueing Revolade 50 mg since 2 days along with dapsone 100 mg daily.doctor said to continue daspone because it will start working after 1 month.

I need to follow up with doctor after 15 days with CBC test.

Can anyone please suggest me for how many days i need to take revolade because i have lots of financial issues.I belong to a poor family.I am taking loan from the bank to buy revolade medicene.so it is very difficult for me to collect money.


I read an article about protalex medicene.Will it work for ITP?

Also can anyone please suggest me is there any alternate solution to cure ITP.

Thanks

If there was an alternate solution to cure ITP, everyone would be doing it.

Revolade can take a while to work for some people, and some have counts that jump up right away. Usually, the drug is taken at least for a few years, but some people have been able to stop using it much sooner.

As far as I know the Protalex stuff is still in trial and it'll be a few more years before it's available. I remember it was being talked about soon after I was diagnosed in 2006. Just shows how long they take.

You have not mentioned symptoms. One person might have blood blisters or heavy bruising at a count of 20, someone else might be fine with a count of five or even lower. It is more effective to treat based on symptoms than on count. For example, my wife has decided not to treat at all unless her count falls below 20 for 2 consecutive weeks, because she is more afraid of side effects of treatment than she is afraid of bleeding.

Paying out of pocket for Revolade, you especially will want to use the smallest amount that is effective to keep your platelets at a safe level for you. Do you have in mind a minimum platelet level that is safe for you? In general, serious bleeding is not expected above 10k, and some people are comfortable at even lower counts, while others are uncomfortable below 30k.

The recommended initial dose of Revolade (Promacta in the US) is 50 mg, but we have recently had patients in this forum who achieved dangerously high platelet counts at this dose. Watch your counts closely. You do not need them to go above 50k as thrombosis is a danger at higher counts. Adjusting the dose can be tricky, so let us know your CBC counts and we can help you.

You have about a 50% chance the Dapsone will work for you. In a recent study, the average time to response was 57 days (19-108 days), though other studies have reported less than a month. The Revolade should probably begin working much sooner.

Dapsone is considered safe only if proper precautions are taken and proper monitoring is done. Is your doctor following all of the necessary precautions? Have you been checked for G6PD deficiency? Are you aware of symptoms to watch for?

onlinelibrary.wiley.com/doi/10.1002/ajh.22266/full
The response is achieved in most cases after nearly 1 month of therapy, and it is generally maintained during therapy. Even if dapsone has a good safety profile, it is necessary to monitor the level of MHb and hemolysis particularly during the first weeks of therapy and to be aware of factors that may precipitate dapsone-induced methemoglobinemia as anemia, pneumonia, or lung diseases and to know how to manage this complication

.
also:
www.rxlist.com/dapsone-drug/consumer-side-effects-precautions.htm

Ann is right about Protalex. Protalex's PRTX-100 is not yet on the market. It is still in trials, and will be in open-label dosing studies starting September, which will last two years. So, unless there is a clinical trial you can get into, it is of no help to you any time soon.

Hi,

I am also in Bangalore. You can get in touch with me at juhigarg@rediffmail.com. My daughter was diagnosed with ITP around 16 months back. She is getting treated by Dr. Sharad Damodar and I find him really good. You can check his credentials and maybe meet him in Narayana Hrydyalaya. I understand, the cost of Revolade is high, and in India, we have to pay it ourselves.

Juhi Maam

Can you please tell me about your daughter which medicine she is taking currently and what is Dr. Sharad Damodar's suggestion for next stage of handling ITP.



Hi Rob,

You were asking about my symptoms..yes I usually have bleeding from my gums,some red rashes in my body specially in lower part of legs and heavy bleeding in periods when my platlet count decreases below 30,000.


I take steroids when i have these bleeding problem.Steroids were causing serious side effects and i feel like having bleeding issues is better than taking steroids.My doctor suggested to take revolade but because of cost only i could not take it.

1.5 month back i started taking revolade 50 mg. I took for 15 days and my platlet count increased from 7 thousand to 1.58 lakhs.Then my doctor suggested to take revolade 25 mg daily.I was continuing 25 mg daily. but That dose did not work for me and my platlet count droped to 8 thousand again and i got serious bleeding from gums.My doctor suggested to continue 50 mg daily

I am taking 50 mg daily since 6 days. since 2 days i am not having bleeding issues.

Also i am continuing daspone daily along with revolade but not getting any result.

My doctor is suggesting for two options as i have some financial issues buying revolade 50mg.

1.Splenactomy
2.Rituxan

Which one i should prefer and what is the success rate for each

Can anyone please help me.

Thanks

Hi Sri,

My daughter is taking 50mg Revolade daily as of now. Last week her counts were 1.01Lacs, so the doctor reduced it to 50mg alternate days, with that, her count this week has dropped to 13K. So again this week, we have restarted 50mg daily.

I agree the cost is high for this medicine, but it seems to be the one with the least known side effects then all other treatments available for ITP, hence we are sticking to it.

All the best for your recovery

I had to look up a lac, so a lac is 100,000 or a count of 100 as we would say, so is the 1.01Lacs a count of 101?

Hi Ann

You are absolutely right.
1.01 lacs is a count of 101.

yes Ann,

With revolade/Promacta 50mg each day to alternate days, the platelets dropped from 101 to 13. So she is back on 50mg every day. This time once the count increases above 50, I think her doctor will taper revolade more gradually

You're not supposed to taper Revolade. You just stay on it and try to keep a count at about 50 or so.

Ann is right. Revolade is a maintenance drug. A patient should stay on it to maintain safe counts. It should be dosed so a person has counts around 50k. The person should stay on that dose as long as they are stable.

Yeah that's correct, but as her counts reached 101, and last time when she was on revolade + predisolone 20mg, they reached 196 from 9 in a week.

As the doctor wants to keep it around 50, so if it reaches/touches 100, he suggests to reduce it to keep it around 50. That was the reason he decided to reduce the revolade last time.

The taper is to avoid an overshoot of the platelets. But maybe the reduction was too drastic and it brought the counts down immediately. SO the next time if we have to do it we'll need to be a bit slow I guess.

In medicine, "titration" is the correct term for the process of gradually adjusting the dose of a medication until optimal results are reached. "Tapering" usually refers to gradual discontinuation (to zero); the term can also mean the same as titration, but it is ambiguous and imprecise, and subject to confusion.

Trying to titrate the dose to keep counts at 50k compared to the dose for 100k requires a VERY SMALL change in dose. It can mean as little as reducing the daily dose of Revolade (Promacta) from 50 mg to 25 mg on just one or two days per week.

Gradually weaning (tapering) off prednisone will change the required dose of Revolade. If it is a goal to taper off the prednisone, then I would leave the Revolade at 50 mg while changing only the prednisone very gradually to zero, because platelets will drop each time the prednisone is reduced.

Nicely put Rob 16..looks like I will be starting on the Promacta and tapering steroids journey very soon

thanks Rob, I agree to your suggestion and this time I will take that route. thanks a lot for the titration numbers, this will surely help when her count reaches ~ 100+.