Failed Splenectomy, what's next?

Hello,

I decided to join this forum recently in order to discuss my ITP condition with other people who are going through it.
I was diagnosed with ITP last March, and for the past 3 months I have been undergoing a variety of treatments (steroids, IVIG, and Splenectomy). Unfortunately, despite responding to most of these treatments, my platelet count always seems to tank within a few weeks. Most recently, I hit 243000 after my splenectomy but then 2 weeks later, I was at 4000.
My hematologist is now trying to put me on nPlate, a thrombopotein medication. I was wondering what others felt about this drug, or Revolade (another thrombopotein stimulator).
Additionally, I have been reading about Rituximab which is sometimes used after a splenectomy has failed and has seen moderate success, but I am concerned about the potential harmful effects. My doctor has mentioned we may move onto this drug in a few months.

Does anyone have any experience with these drugs? Is there something else that might work which is not harmful?

Thanks!

Arty:

Rituxan is used many times prior to a splenectomy. I'm surprisd you weren't offered that option before. Are you in the US? If so, it doesn't sound like your doctor is all that familiar with ITP.

Rituxan lists a lot of scary side effects and it is a drug that is not meant to be taken lightly. However, most people have no side effects at all. If they do, it is usually during the infusion and can be controlled with slowing the drip and certain pre-meds (Benedryl and Solumedrol). It can cause a remission in those who respond to it. A lot of people here have had success with it.

As for N-Plate, many here use that also. It is a maintennce drug, meaning that you have to keep using it to maintain counts. It is not meant to cause remission or keep your counts in a normal range....the target is about 50.

Most of the treatments have side effects. I wouldn't say there is anything that isn't harmful.

I'm glad you decided to join the group!

Hi Sandi,

Thanks for your response. In fact my doctor was aware of Rituximab before he pushed for the splenectomy. His approach has been one of using the most effective treatments to date, and statistically speaking, splenectomy has a higher percentage of success rates than Rituximab. In the end, it was an elective surgery, meaning I was the one who made the decision to go for it. Despite my concerns over losing my spleen, I felt that this procedure would allow me the best chance of resuming some normalcy with my work and social life. Despite the amazing early results, the platelets have dropped and I am disappointed.
What I want to ensure now is that I use treatments that provide the least danger to my health. From what I have read, nPlate is relatively safe as long as blood counts are measured weekly to ensure there is no negative effect on the liver or the platelet count does not get too high (which could lead to excessive blood clotting).
I am concerned about the cost of this drug, as I am currently battling to get it covered by my private health insurance. If this does not work, I am not sure what medication I will be taking next. Above all, I did not want to use chemotherapy drugs like cyclosporine.

Do you know of any other non harmful drugs that might be worth looking into?

Hi Arty-- Welcome to the forum! Its a good place for information. sorry to hear of the failed splenectomy. We all really understand about the treatments vs the low platelets. Its tough finding something that has no bad side effects and actually works.

I've had Rituxin and Promacta(Revolade). I didn't have any side effects from Rituxin. Nothing at all. I felt fine during the infusions except for a moment when my throat got itchy and face flushed. They stopped the infusion until my reaction calmed down, then proceeded very slowly. That first infusion took about 9 hours. I was fine during the next 3 infusions. Rituxin brought my platelet up to about 25K for around 6 mos. That is not considered a good response but it was enough for me to get completely off prednisone, which I thought was great.

I've had some side effects from Promacta but they go away when I stop taking it.

Since you called it Revolade you probably aren't in the USA. So I don't know if this applies. But if your insurance won't pay for Nplate (or Promacta) there are programs that will cover it through the drug company, but you have to be lower income, (under $75,000 I believe, I could be wrong on that figure).

I've been on Nplate for nearly 3 years now and only have a blood test every 8 weeks. Nplate isn't known for harming the liver so I don't get a liver function test every time I get a platelet count. Every now and then they do a liver function test. I don't have any side effects.

There aren't any non harmful drugs for ITP. I've tried 7 different treatments and Nplate has been the best one for me. I haven't had a splenectomy.

I don't know, Artie. Highly debatable topic. I can understand the reasoning behind that, but there are other factors.

I guess now all you can do is go forward. Good luck with your decision. Let us know.

Hi,

Thanks for all your feedback.
I hope to get some good results with nPlate as it will certainly be better to not be sitting in a hospital room being treated. I think the only concern here is that it's not a cure, but a way of managing the platelet count. From what I read, in most cases, stopping to use the nPlate, will cause the platelet count to drop again.

Have any of you seen any cases where a patient stops using nPlate and goes into remission?

As for the medical insurance issue mentioned by Poseymint, I am hoping that I will be able to get an exception through a letter sent to my health insurance company from my hematologist. He will be explaining that we have tried several other treatments, but none of them have worked.

Amazingly, if I was not working and did not have private health insurance, I would be covered for nPlate under the public universal health care system we have in Canada. It almost feels like its less advantageous to work and receive a private health care plan!

Anecdotal evidence tells of people gaining remission from Nplate. More common seems to be that people can take less and less to get the same response as time goes on.

The drawback with Nplate is that some places won't allow self injecting so people are tied to weekly visits to the hospital for the injection. That would put me off using it completely.

I will be able to administer the injections at home, so I won't have to deal with the hospital for that. However, I still will need to get a weekly blood test (or maybe bi weekly?) to monitor the platelet count as well as other blood counts.

Arty, you are correct that Nplate is exactly that--a maintenance drug, one that is intended to keep your counts around 50k. It is not designed nor expected to cure ITP, so I wouldn't expect it to. I am sure there are occasionally people that go into remission, but that can happen with or without treatment. From what I've seen with the various posts on here from people using it, it seems there are a lot of extremes in counts, from going very high (which makes clotting a big concern) to plummeting very low, often at a rapid pace. I believe there's a young woman on here (26 yo), who had a stroke caused by the Nplate making her counts go crazy high. My personal view is that it's ill-advised to continuously force the body to produce extra blood cells. My gut instinct tells me this is not a good idea. And, there may be further repercussions down the road.

You may want to look into finding a professional homeopath. There are many good ones in Canada. Homeopathy is what cured my daughter. That was nearly 8 years ago when I found a good homeopathic remedy for her. She had hovered around 3k-5k for many months, not responding to anything we tried, though she did have anaphylactic reactions to both WinRho and IVIG and we nearly lost her. The homeopathic remedy took her counts from 4k to 411k in less than 4 days, and she has continued to have perfect counts, usually in the mid 300's . Besides her ITP going away, the remedy also gave huge improvements in many other areas of her health and behavior, things she had been bothered with for years. That's the beauty of homeopathy--it actually heals the underlying reason for the imbalance in the body, and also heals whatever else is out of balance. Once that is corrected, the body heals itself, and very rapidly in many cases. Homeopathy also has the hallmark of "First, do no harm". There are no side effects or toxicity, so can be used by anyone. You can find some further posts on it in the Natural Treatments section. There have been others on here who have also had good results with it, but most often their voices are completely ignored. Most do not continue to post here because they are better, and the atmosphere for alternative treatments is mostly hostile and disrespectful.
The older PDSA website had 2 or 3 stories on their Treatments page of those who found healing with homeopathy, but those were all erased. Not sure if the new site retained those or not.

Good luck!
April

artyjock wrote: I will be able to administer the injections at home, so I won't have to deal with the hospital for that. However, I still will need to get a weekly blood test (or maybe bi weekly?) to monitor the platelet count as well as other blood counts.

Weekly blood tests are certainly necessary at the beginning until you are sure you are stable on a particular dose, then it is usual to go to blood tests every 4 weeks. I was on a clinical study using Nplate on that regime. After that it's up to the individual doctor and what they are happy with. I've got down to going every 8 weeks now I'm no longer on the study.

How long did it take you to see even the slightest response to the nPlate? Did it occur within the first week?

My first few weeks went like this..

started with a count of 2 then weekly ..

1 mcg/kg - 29,73,42
2 mcg/kg - 80,149,9

and up and down and raise the dose slowly until I got to 5 mcg/kg then my count went high and down I came so now I'm on 1 mcg/kg and pretty steady.

So yes, I saw a raise after the first week but the other two patients who I see at the hospital did not. They had to wait a few weeks and a higher dose to get a response. Both of them have had splenectomies and are therefore not as responsive. Don't ask me why because they don't know but those who have had a splenectomy generally need more Nplate.