Options?

I was diagnosed with ITP back in the mid 80's and my count normally hovers around 25 which is fine but in the last 4 months (since May of this year) it has consisently dropped to low single digits of between 1- 3 and I have taken course after course of steroids until I was told my only option was Rituxamab. I am concerned about this infusion as the potential side effects seem extreme - has anyone tried any other treatments with success other than IVIG, WhinRho, Prednisone and Dexamthasone?

Hi Susan,

I'm on Nplate, which works fine for me.

Cheers
Joerg

Hi Joerg,

Thanks for your response! I have never heard of that treatment - is it an infusion or pills?

Susan

Also, I see some folks are mentioning that they have had transfusions of platelets but my hematologist said that I could not have that as my body would attack other people's platelets at a faster rate than my own so it could be potentially life threatening. Has anyone else been told this?

I've also used:

Promacta - increases platelet production (it worked very very well for me for 3 years).

Cyclosporin - immune suppressant (worked for me for 2 years, then just stopped working).

Cellcept - immune suppressant (I am currently using the generic version because it is cheap).


There are many other treatments out there as well.

Susan:

You have quite a few other options and if your doctor isn't presenting them to you, it may be time for a second opinion. There is N-Plate, Promacta, Win-Rho, CellCept, Imuran...all come with a risk of side effects but some are worse than others. Rituxan is a viable option but you're right, it has its risks.

Your doctor is right. Platelet transfusions are not a good way to manage ITP unless there is bleeding. When you see people who have done it, that is usually because a doctor is panicked at a low number and feels the need to do something. They generally don't last for more than a few hours and can cause more problems than they are worth.

Thanks Sandi. I think you are absolutely right about needing a second opinion - I had no idea that there were so many other options out there and am working on finding another doctor so I can explore newer treatments. I am faced with a new challenge with my counts dropping so low right now and am looking at anything and everything to avoid these mega high doses of steroids - I really appreciate your taking the time to post a response though.

N-Plate (TPO) - once a week injection. It stimulates platelet production, does not address destruction. Most people do respond to it. The dose is adjusted to keep counts around 50k. Most common but rare side effects: blood clots, bone marrow reticulin (usually reversible).

www.drugs.com/nplate.html

Promacta (TPO) - daily pill. Also stimulates platelet production. Good response rate. Same side effects as N-Plate.

www.drugs.com/sfx/promacta-side-effects.html

CellCept daily pill(s)- Immunosuppressant. Can take weeks or months to work.


www.webmd.com/drugs/2/drug-4067-2108/cellcept-oral/mycophenolatemofetil-oral/details/list-sideeffects

Imuran daily pill(s)- Immunosuppressant. Can take weeks or months to work.

www.drugs.com/sfx/imuran-side-effects.html

Win-Rho - infusion - about an hour but patients should be monitored afterwards.

www.drugs.com/sfx/winrho-sdf-side-effects.html

Awesome! The only one I have tried in that list is the WhinRho - and that was years ago. Can I ask about you? How is your count? And of all of the drugs you have listed have you tried any of them?

It looks like you have researched a lot about this condition - do you have a medical background? Also, have you ever tried any of the non medical treatments and gone for the natural or alternative options?

I have already emailed a potential new doctor and am going to work on getting my records transferred asap.

Hi Susan,

For Nplate I currently inject myself with 375mg per week. The dose depends on your response and on your weight.
I have no sideeffects (or no visible sideeffects).

Good luck!
Joerg

Susan:

I was diagnosed with ITP in 1998. I tried Prednisone, Danazol and Win-Rho. Prednisone worked and shot my counts up, but I was on and off of steroids over a period of 7 or 8 years. Counts were in single digits a few times. I then tried Rituxan and got a year of no treatments. Used Rituxan again and have been in remission since. I have other health issues though, so I am on 10 mg's of Prednisone for that which could be part of the reason for the good counts. The story is much longer, but also pretty boring.

Ha no, I don't have a medical background, but have been here since 1998 (daily) and have been researching ITP since then. I only tried alternative treatments in the beginning when I went to some wacky health food store and the owner knew what supplement I needed by making me hold my arms up in the air. Liquid Chlorophyll I believe. Of course it didn't work.

Apart from the treatments you list, Susan, I've tried azathioprine (Imuran) and mycophenolate (CellCept). Both are immunosuppressants. Then I tried Nplate, self injected weekly for about three years and was able to stop using it last year. Last count was 83 with no treatment.

Thanks for the information, Sandi! It looks like you had a good result with the Rituxan - a year without any thought of a low count is impressive. When my current doctor offered it as "the only option open to you other than steroids" and I read the potential side effects it was startling I have to say. I am not sure I am brave enough to go ahead with that knowing the potential risks but I guess every treatment has its risks. Interestingly enough I have located a new doctor who is interested in talking about new treatments and having me as a patient but of course it takes time to get my 6 inch thick files of info from my current doctor copied and sent on over and, in the meantime, I am coming off a 4 day high dosage of steroids which is sure to wear off in the next few days while I am in limbo waiting to change docs. Then today I got an email from my current doctor asking me to confirm an appointment with him for this week (first I heard of it) so I think I will go and ask about the extensive list of treatments that you have mentioned here in the last day or so.

Congrats on the good count Ann! Can I ask if you experienced any side effects from any of the treatments you have tried?

I've had success with both Nplate and Promacta. Nplate I felt pretty achy on but tolerable. I have no side effects on Promacta and I only have to have monthly labs.

Susan wrote: Congrats on the good count Ann! Can I ask if you experienced any side effects from any of the treatments you have tried?

I've had no side effects at all from Nplate. I did from the others although the only one I couldn't tolerate at all was azathioprine (Imuran) which I stopped taking after 6 weeks. The side effects from most drugs are easy to deal with as if you don't like them you simply stop taking the drug and they go away. Rituxan is different because once you've done it, you can't take it back and its effects (killing off the B cells) will potentially last for about a year, while the side effects.. well who knows.

My 2 cents about Rituxan: It's a very viable option and has helped many people. But I do believe that it is over-used and should not be taken lightly. I ended up with serum sickness from it twice, and because of that, it triggered Lupus. I would love to go back and change that decision but of course I can't. One thing that I can say is that Rituxan was my decision and I talked my doctor into it. It was new for ITP back then. I can only blame myself; I cannot blame the doctor for forcing me into it or telling me that it was the only option. I'd take the lower counts any day over the battles that I have now.

You have a right to question treatments that are seemingly forced on you. If a certain one scares you, you can decline. The list of side effects look very scary, I agree, but most people have no problems and do just fine. Most of the really bad side effects occur in people who have other health issues or are immunosuppressed, but some patients are predisposed to potential problems that they are not aware of (like me).

You are right to be cautious and to question. There is no reason to rush into anything. Making informed decisions will be beneficial in the long run. I'll admit that I used Rituxan without even looking at the side effects, and in hindsight, that was stupid. It was however, the beginning of a very hard lesson learned and I will never make that mistake again. I admire people who can put the brakes on, stop, and look around at all of the options. You are certainly on the right track.

Susan wrote: I was diagnosed with ITP back in the mid 80's and my count normally hovers around 25 which is fine but in the last 4 months (since May of this year) it has consisently dropped to low single digits of between 1- 3 and I have taken course after course of steroids until I was told my only option was Rituxamab. I am concerned about this infusion as the potential side effects seem extreme - has anyone tried any other treatments with success other than IVIG, WhinRho, Prednisone and Dexamthasone?

Hi Susan,

I have diagnosed with ITP 2 years ago. My doctor will use IVIG when my platelet count dropped to single digits, but the effect only last for a week.

For your information, Prednisone and Dexamthasone have no impact on me. Ultimately, my doctor identified the combination of using Cyclosporine A and Promacta to make my platelet count become stable.

Sandi, I am so sorry that happened to you. It seems that there is no winning with all of these drugs on the market and weighing the pros against the cons is a constant nightmare. I went online and saw the question you posed about raising the count and wondered what if, when the count was extremely low, one just left it to see if it might just bounce back up a level...instead of injecting or swallowing drugs to create an inflated count that lasts for just a short time.

Hi drbean,

Thanks for the info - With the drugs you are taking what sort of count are you maintaining? What was your count when you were diagnosed? What side effects do these drugs create together?

Susan:

Some people do choose not to treat as long as symptoms are not too bad. It's an individual choice.

Sometimes the treatments do cause remission; the result isn't always temporary. That depends though on the drug and the patient's response.

Susan wrote: Hi drbean,

Thanks for the info - With the drugs you are taking what sort of count are you maintaining? What was your count when you were diagnosed? What side effects do these drugs create together?

1. My platelet count was 4 when I was diagnosed ITP in July 2012.

2. With that combination of drugs, the platelet count can maintain above 200, my latest count was 235 as at 5 Aug 2014.

For me, Cyclosporine A cannot be stopped and the dose must be kept at the minimum level in long term. We have tried to stop Cyclosporine A before, but my platelet dropped to 6 after 1.5 months.

3. Promacta didn't bring me any side effect. Acne and easily get sick are the side effect of Cyclosporine A.