ITP Treatment Options

I have has ITP for 14 years. But for the past two years ITP has really affected my life. My Hematologist has talked about treatment options. I have been on prednisone for a while (it hasn't worked so she wants to try something else). Maybe somebody can give me an opinion on these other treatment options
1. Rituxan
2. Chemotherapy
3. Immune Suppressive Therapy
4. splenectomy
5. IVIG
6. WinRho
7. Nplate
8. Promecta

I'm not real sure which option would be best for me, but I'm sick and tired of ITP ruling my life! I couldn't go off to college cause of my health. So if anyone has experience with these treatments, and wouldn't mind giving me some recommendations. I would sincerely appreciate it.
Savannah

Can you say more about your situation? What health problems have you had that changed your life, do you have good health insurance, what country are you in, what are you looking for from a treatment, what are your counts, etc. There are people here who have done all of those treatments (except not sure what you mean by chemotherapy, and immune suppressive therapy describes a bunch of them). Have you ever treated before?
Erica

Usually with my ITP an episode would last for 2-3 months. I had episodes when i was 5, 7, & 13 years old. This episode is completely different, this episode has lasted about 2 years of low platelets. Some of the problems i deal with are horrible headaches, insomnia, fatigue, etc. This was my senior year I was accepted into 4 major universities but chose to stay home because my health declined when decision time came.This past April my platelets were at 14,000, so my hematologist put me on Prednisone for 2+ months. About 3 weeks ago my platelets were at 113,000. 2 weeks ago 86,000. Last week there were at 53,000. And just a few days ago they declined again to 42,000. Now not even been off Prednisone for a month I'm back on it again. My next doctor's appointment is in a month, so I'm sure she wants a decision by then. I live in the U.S. and have United Healthcare. What I'm looking for in a treatment is for this 2 year long episode to end! I have had IVIG when i was 5 (that's when i had 3,000 platelets). Also prednisone when i was 5.
I remember my hematologist saying the Immune Suppresive drugs, would be to same drugs that transplant recipients use.

I hope this information helps.

Savvy:

Some people are lucky enough to get a remission, but some are not. I know the goal is always to get to normal counts and have them stay there without treatment, but sometimes that isn't possible. Is that what your doctor is trying for?

As long as you have platelets over 30 and don't have major symptoms, you can live life normally. Out of all of the options that you listed, Rituxan would be the one that could give you what you are hoping for with the least amount of maintenance.

I would never consider the chemo's for ITP. I'd imagine he is talking about Vincristine. Too many side effects, some can be permanent. I think he is talking about CellCept or Imuran with the Immunosuppressive Therapy. Those can take months to work and you have to keep taking them to keep counts up. You could consider splenectomy but that is becoming an obsolete treatment for ITP (too many risks). IVIG is very temporary (days or weeks). Win-Rho is also usually temporary (a few weeks or months). N-Plate or Promacta can be a good choice but they are maintenance drugs and you have to keep taking them.

If a person responds to Rituxan, they can get a year or more of remission.

Thank you this information is really helping me.
With this important decision coming up my mom has been researching these drugs, and there side-effects, etc. I don't want to believe everything the Internet says, so my mother read somewhere that the side-effects for Rituxan are really bad that could lead to death! Maybe someone else who's had experience with Rituxan can tell me what side effects they had while taking Rituxan? Also the side-effects with NPlate & Promacta?

I had Rituxan, no death, and 4 years of remission so far...
Erica

Rituxan is popular on the Board here because when it works it works well. But the success rate is something like 40% and side effects as you have found out can be serious. So it's an individual choice whether you feel it's worth the risk.

I opted for Nplate and have no side effects but the long term effects are not known because it hasn't been around for long. I'm older than you and felt the risk was worth it but being young you have to take that into account.

I have had two rounds of Rituxian treatments. The only reaction I had was during the first treatment of the second round. Meds were given and treatment was resumed at a slower rate. This October will be 3 years of remission!

Savvy,
Have you read the treatments section of this website? Many are mentioned. The one called B-cell depletion is Rituxan.

I was very scared to try Rituxan too because of the possible side effects. But the patients who died from it were very sick to begin with and had a lot of complicating factors. I finally agreed to try it. My Dr at the time, had had 100% success with it. (5 other patients). The first time I used it, I got a 4 and a half year remission. I took it again last summer, and everything has been fine since. My next dr appointment is in another year!

I hope you find something that works for you!

If your afraid of rituxan and youve been on pred for awhile, i would suggest dexamethasone. Just for 4 days to see. It might work, it might not. My next treatment is rituxan but dex is holding me for a few months now. What i did was similar to this, where i made a list of treatments in order of what i would be willing to try soley based on research here and brought it into my hema and then got his opinion, we had out differences but we agreed on a way to go about it. like i said my next is rituxan, which i originally had n plate next but he talked me out of that, dont remember how but im a go big ot go home type of person so ill take my chances on anything once.

I went to my hemotolgist and they suggest the same thing, but they never suggested a natural remedy. Then I did research on the use of Papaya Leaf Extract and found that the Univeristy of Florida did a study that showed how useful it was.

I have been using Papaya Leaf Extract from Iowa Select Herbs for the last 6 months and have had great result. My count has gone from 25 to 130 and has stayed at that. I am very pleased that I did not have to do something more drastic.

Best of luck!

Here is the link to the Study:

www.nydailynews.com/life-style/health/papaya-leaf-extract-slow-growth-cancerous-tumors-new-research-article-1.171872

skycad,
You are spamming this forum - you only have one post and it is advertising the same herb company that spammed us multiple times earlier this week. I want you to apologize, then delete your posts, then go away.

If you are a person with ITP which I doubt then you can come back and join our community.
Erica

Furthermore, the NY Daily News is not a reliable source of research, and we do not have cancerous tumors here.
Erica

Erica have you reported your suspicions to the moderator?

Yes, but I think it might have been lost in a thread of messages and chit chat. Wouldn't hurt for you to mention too.

Interesting, the person who started the papaya leaf thread also uses Iowa Select and has a similar story, which is scant backstory with quick sustaining results in the 130K range. Not saying its a fraud, I don't know but is suspiciously similar to the post in question.

I see it. One more post from the Spammer and he's gone.

I have had ITP for 18years and nothing seemed to work for me I was always needing IVig Which I got horrible side effects for 3-4 days after the 4 day infusion. My Dr put me on Promacta 75 mg So far no side effects (except one and the Dr said it is not from the promacta but i say it is, I used to have natural curly hair and guess what it is now straight) But my platelets have been staying in the 90 to 100's. Whenever i would get a cold or flu my platelets would drop to 3. Since I've been on the Promacta the lowest they drop when I get sick is 45 which is a safe level for me.

I'm sorry I am new to this sight since it has changed I thought I was replying to the person that was asking about her options for treatment. I guess i should have hit reply and not quick reply.

I have had ITP for 18years and nothing seemed to work for me I was always needing IVig Which I got horrible side effects for 3-4 days after the 4 day infusion. My Dr put me on Promacta 75 mg So far no side effects (except one and the Dr said it is not from the promacta but i say it is, I used to have natural curly hair and guess what it is now straight) But my platelets have been staying in the 90 to 100's. Whenever i would get a cold or flu my platelets would drop to 3. Since I've been on the Promacta the lowest they drop when I get sick is 45 which is a safe level for me. ButI did just find out I am low on vitamin D

Here's an update. I went to my hematologist the other day. My platelets have been on a roller-coaster ride. One week there at 236,000 then they go down to 209,000 now there down to 169,000. I know these are normal numbers but I've been down this road before eventually they will go even further down. Since my platelets were in the normal range my hematologist decided to keep me on steroids for a little longer (UGH!!!!!!!!!). She gave us another month to try to keep my platelets up, if they go down then we have to do something. When I think about it I really don't want to do any of these scary drugs that have long term effects. I feel like I'm leaning towards a Spleenectomy. Has anyone had one? Pros? Cons?

Before you do anything, research. Here is a good start.

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

Maybe you should also read the thread called 'Heart Attack Two Months After Splenectomy' in the ITP Treatments folder. It contains links to some good articles about splenectomies.
Erica

regarding the person who linked the ny daily news article on papaya leaf. the article, as was pointed out by erica, says nothing about itp, not even indirectly, so it is reasonable to me that the post was either mistaken or trying to decieve. however, i wouldnt say ny daily news is not a reliable source. first of all, they sourced the material, so it doesnt matter who reports it. and second, if you mean as opposed to other media outlets, does that mean if it was the ny times you'd believe it? because in that case its a matter of preference, for example i personally dont believe too much that i read in the times. however, generally the msm is not the most reliable source for medical information.

Freckles, the only real way to read articles is to read the original article or an abstract of it if the original isn't freely available. Failing that a good medical site that precis an article is fair. Apart from that, you have to read with scepticism because journaists will pick out phrases and bits and pieces and out of context they can be twisted to mean something else.

Reading a general article from a newspaper or magazine can be a good way of getting an idea that something has been studied or that there's new information to find but it would make me want to find the original rather than believe its conclusions straight off.

Did you ever try klaritromicin - a kind of antibiotic-? I have ITP as well and no cure has worked but whwnever I take klaritromicin, my plt count goes high. Wish u healty days...

By the way, never think splenectomy unless ur plt count goes below 20000. In my opinion this option must be the last cause spleen has works to do in our body. Otherwise it wasn't be in our body. God knows better than us. This is my idea offcourse. Wish u healty days...

Be careful of azathoprinei think thats how you spell it was horriable for my stomach had to stoo taking it plus read the side effects on all treatments you take some include cancer warnings.

I'm on 75mg of azathioprine a day - and have managed to get through the initial side effects (for me, feeling bloated when I ate anything, and very painful stomach/abdomen when we put the dose up too quickly, which also gave me really bad liver results). Didn't want to discount this treatment option out of hand though, so dropped the dose until liver had recovered and increased it again slowly, and feel totally fine on it now. The long term side effects like cancer risk are more likely at the high doses people take for anti-rejection purposes - which someone with ITP should never get near - I think other ITPers on azathioprine take 150mg day max, usually less than that. I think that if you can tolerate it, it's not a bad drug - my platelets are now a relatively safe 58 (they were 2 when I started on this a few months ago) so I'm glad I persevered with it. I do realise that it's not for everyone though - but then that's true of every treatment, we all respond in different ways!

I also got a letter yesterday from St Barts in London to arrange my indium labelled scan to give an indication of whether there is a good chance (or not) of a splenectomy working. I'm pretty much decided I don't want to go the surgery route but at least this way it might take it off the doctors' list of possible future treatments!