Stopping all Treatment

I've had ITP for a little over 3 years. I did 6 months of Prednisone which didn't work. Then, they tried to get me on Promacta but I freaked over the price and said forget it. Most recently, I've been on N-plate which sends my platelets soring from 10K to 316K, then 562K . They can't hit a stable number - it always varies greatly. It would be fine except with every shot my hands and feet get cold and numb, I catch a bad cold with fever, headache, chills, coughing, congestion, sore throat... Full blown, two week cold... My Doctor is thrilled at the success and doesn't want to hear about the side effects... I'd rather have low platelets! At least I can work and make it through the day. I've had the same cold for two months but when I quit N-Plate it goes away. I've been messing around with ITP for over 3 years. My Doctor wants me to continue on N-Plate or try some other remedy but I'm over it! I've spent too much time at the Doctors Office and they don't seem to be able to regulate my platelets any better than I do on my own.

Before N-Plate I ranged mostly between 17K and 55K. I usually had a few bruises but nothing too scary. I've never had a significant bleeding episode. I was able to function normally and no one even knew I was sick. I feel like I 've wasted the last three years on something that doesn't really matter and cannot be changed. My Boss and family are irritated by all my Doctors visits and I'm sick of people asking about my numbers. Seems, everyone I know, knows someone with low platelets who never went to the Doctor and was just fine.

I'm thinking of canceling all my future appointments and just going about my happy life. Has anyone else done that? Is there any logical reason to continue this madness?

Ray:

Yes, others have done that. Your counts on your own are not bad at all. Sounds like the treatment is doing more harm than good. If counts are getting high like that, I'd be more worried about the risk of a clot than the risk of bleeding. That seems to be playing with fire, especially with numb hands and feet.

Did you respond to Prednisone at all? I'm asking because if you would develop symptoms and need a treatment, it could be a go-to in a situation like that.

Ray, Just my experience from 9 years with ITP, if my counts stayed above 10K I would not do anything but watch and wait. Just monitoring counts is a totally valid way to go with ITP. But everyone has a unique risk factor. I have no symptoms when I'm below 10K, I have been very low below 5 many times- its been more of a problem for the medical staff than it has been for me. Other ITPers have real problems when their counts are low. So you have to assess your own risk. I would guess after 3 years you probably know what your body is doing. And like Sandi said, if you have a fast rescue treatment thats always nice. Accidents can happen and doctors worry about that. I fell and hit my head with a count of 15K, got two black eyes and was examined by my opthamologist who said my bruising from the fall was completely normal. He said he would have never guessed my counts were so low. I believe I have other mechanisms in place that make up for the low platelets but can't prove that.

You might find another hemo who is more agreeable to monitoring your counts. Your side effects from Nplate sound really bad. Some side effects for these drugs are not listed. I got weird side effects from Promacta, memory issues, cognitive dissociation that are not listed anywhere.

When I first got ITP I read on the Mayo Clinic website a warning that the treatments for ITP can be worse than the disease. That caution has since been taken down but I always remember it and choose treatments accordingly. Good luck finding your answers! Thanks for sharing your experience, its very interesting!

Ray

Go for it.

I wish I could be medication free but am too symptomatic below a count of 25. Once I retire I fully intend to come off my meds and see what happens.
Anne

Hi Sandi,
Thanks for your encouragement. I don't know anyone besides myself with ITP so it really helps. Prednisone did not work for me. N-Plate did work but the side effects aren't barrable and they keep overshooting and sending me up to 600. Other than a few bruises I don't have any problems when my platelets drop. I can still wrangle the dog, do my yardwork, go to my job and live a normal life.
I admit the numbness isn't debilitating or pure agony. It's more of an annoyance than actual pain but it does interfere in a small way with everything. I'm also concerned with permanent damage since it lasts longer and is more severe after each shot. N-Plate also seems to exasperate my allergies which makes everything worse.

I'm grateful for this site and the stories of others. I've fully decided to stop all treatment and feel it's the right choice for me. Thanks and good luck to y 'all!

Hi Ray,
My opinion you need look into programmatic dosing.
I go every 3 weeks and when the platelets go below 30 they give me a shot.

If you can hold above 30 then you can go many months without intervention.

-Jay

Hi Jay,
Unfortunately, they've never been able to get my dose correct - I usually don't have any reaction in the first week then shoot way up the second week and drop quickly on the third week. None of that bothers me too much, I don't feel any different, but I can't deal with the side effects, the appointments and missing work for the treatments. It's been 3 weeks since my last shot and I'm feeling a lot better. I don't think I'm even going back to get my numbers checked. What's the point really - check them today and they're different tomorrow. If I have a serious problem or need a dental procedure done I'll get my platelets checked but until then I'll be fine.
I'm sure N-Plate s a great drug for most people but I can't take it. I'd much rather have low platelets than the side effects. After spending 3 years and a lot money running to the Doctor I'm no better off than the day they diagnosed me.

Hi Ray,

Best of luck.
Last year I could not stop treatment because I would just go under 1.
-Jay

Ayurvedic treatment is best to cure from various disease.It is the best remedies for all type of disease.

I am also considering stopping treatments. After high dose Prednesone treatment and low dose as well I really don't want to go on something expensive or with bad side effects. Prednesone keeps my counts up but kills my stomach and coming off it is a nightmare (litterally). I get horrible dreams (never do otherwise), mind fog and joint pain. I know I can't stay on it. I just want to "forget" about my counts and live my life but my doctor has me pretty frightened of what could happen to me. If my count falls below 30 he freaks.