Anyone else NOT doing treatment?

I was on Prednisone for two months.. it only worked on REALLY high doses (60mg) and even then the most my count got up to was 90.
I got EVERY side effect and even more that weren't listed..and even more still that only apply to me (cause of another unrelated problem)

So I am FINALLY off the Prednisone (just ended two days ago!) and my count is at 11.. or at least it was.. who knows where it is now.
I convinced my hema that I wanted to get totally off the Presnisone and wait a few weeks to see what my count does on it's own (if anything at all) and maybe THEN I'll try something else.
But the more I think about it, the more I don't want to try anything. I want to find out what is causing my body to do this! I won't take "it's your immune system" as an answer anymore. The immune system is HUGE! And has SO many working components it's mind boggling. It seems like all the other treatments are just temporary (for most people)...
It makes sense to me to figure out exactly what is causing my body to so this, and then that way I can fix it for sure.. permanently.

I am SO sick of people reacting to a low count.. Hello! Do I look like I'm on the verge of death? I say nay...


Is anyone else in this boat? Has anyone just waited it out to see happens?

I wish you well on your optimism to find a cause and permanent 'fix'. My Hemo Doc once told me if we ever did it, we'd be on the cover of the AMA Journal. Waiting it out could be dangerous, not only from obvious external cuts, but internal bruising resulting in undetected bleeding. There are a lot of remedial options but it's mostly 'trial and evaluation' in treating the effects and not the cause. BUT I've heard that an 8k platelet count could be as or more effective than a higher count depending on the individuals bodily response. I would be pleased with a consistent 30k count without using Preds. I've just started Plan G as Plans A-F did not get me into some remissive state.

I can understand your frustration about going from treatment to treatment. I'm on my 3rd so far. But you know, ITP has been around for quite some time now and there are some very intelligent people working on figuring out how and why it happens. I personally am not one of those intelligent people! I can do my research and ponder reasons in my mind, but that's about far enough for me! It is what it is and I guess I'm going to live with that. Good luck to you, please do share anything you learn.

Most kids in the UK who are diagnosed with ITP are not treated, although I am not sure about adults. The general rule is to treat the symptoms not the counts - if there is no bleeding, kids would generally not be treated. My son's doctor keeps on telling us that most of the treatments are worse than the condition itself for the majority of people.

I think you need to consider your symptoms and the sort of lifestyle you lead (or want to lead). And then you need to have a sensible discussion with your doctor based on this.

Best of luck, Ali

I'm actually strongly considering going to Med school once I finish up my music degrees (which will be next semester). I got myself some 3rd year med school Hematology text books... fantastic read!.. of course.. it's a little tough to understand all of it, cause I'm missing the first two years of knowledge, but still! Amazing stuff! I love that I fully understand every aspect of my CBC results now.

I'll keep you all posted on what happens as I sit and wait... I will admit, it's a little intimidating (as I am aware of the ramifications of a count of 0 and cranial hemorrhaging).. but I'm hoping my plasma proteins are really throwing it into over drive and picking up the slack of the lack of platelets.. which would explain my complete lack of symptoms.

Jazz:

Lack of symptoms could be due to platelet microparticles. Research that for a while....very interesting.

Yes, it most likely IS your immune system. Autoantibodies are produced and that's it. It's like any other autoimmune disorder; no reason, no cure.

This was a good article about antibodies:

"Gene copy number variation (CNV) and single nucleotide polymorphisms (SNPs) count as important sources for inter-individual differences, including differential responsiveness to infection or predisposition to autoimmune disease as a result of unbalanced immunity. By developing a FCGR-specific multiplex ligation-dependent probe amplification assay we were able to study a notoriously complex and highly homologous region in the human genome and demonstrate extensive variation in the FCGR2 and FCGR3 gene clusters, including previously unrecognized CNV. As indicated by the prevalence of an open reading frame of FCGR2C, Fc receptor (FcR) type IIc is expressed in 18% of healthy individuals and is strongly associated with the hematological autoimmune disease idiopathic thrombocytopenic purpura (present in 34.4% of ITP patients; OR 2.4 (1.3-4.5), p<0.009). FcRIIc acts as an activating IgG receptor that exerts antibody-mediated cellular cytotoxicity by immune cells. Therefore, we propose that the activating FCGR2C-ORF genotype predisposes to ITP by altering the balance of activating and inhibitory FcR on immune cells."

bloodjournal.hematologylibrary.org/cgi/content/abstract/blood-2007-03-079913v1?ct

I LOVE your attitude! I'm looking forward to hearing how you're doing in weeks to come. I too just came off steroids. Actually today is Day 1. I too had every evil side effect and hope to never be on it again!! I can see myself being in your shoes. I did the Prednisone, I'm currently doing Rituxan treatments BUT... I've already decided they can't have my spleen and if this treatment doesn't "work" I just don't know what else I am willing to subject myself to. Good luck.

Wow Sandi, that's some article! I'll just pretent that I can pronounce all those words and that it all makes sense! Obviously it's good news....right? :huh:
JJ, you surely are encouraging! I'll pray that it works out for you the way you want it to.

Sandi- That's a VERY interesting article.. but gene predisposition or not.. I still say there's a cure... But I'm insanely stubborn that way..

Lin - I'm also interested to see how I'm doing in the weeks to come!

Server - As long as I can get by without putting any kind of drug into my body, then it has turned out the way I want it to.


It's been 5 days now since I KNEW my count was 11 (I have a STRONG feeling it was that low for at least 4 days prior)... clearly I haven't died. In fact.. I went sailing! And it was fantastic!

CBC on Wednesday!! Whoohoo! (Yeah.. I get really excited... it's all too fascinating!)

For the last two weeks i have been on no medications and platelets have been around 12, 10, 8, and last one was 9. The doctor is concerned that they are still under 10 after two weeks, so i am having 25mgs till i have my next bone marrow biopsy which i think should be next week sometimes, possibly 9th June.

I did no formal treatment for 9 months or so, not treating unless my count went below 5 when I would get blood blisters in the mouth so badly that they couldn't be ignored. I would then take a few mgs of pred to get my count up and then go off it again until the next time. It was unorthodox but we were biding time until I could get Nplate. It was interesting and showed me, personally, that I really do need to treat. But if I wasn't a bleeder, I wouldn't treat.

Thanks Ann!
Did the Nplate work for you?
I do have Prednisone with me....juuuuuuuust in case something goes very wrong...

No..I'm not a bleeder.. not at all. I've actually never had a nose bleed in my life! (Makes my friends jealous)

Hi, yes, Nplate works for me. I'm on the lowest dose and have counts around 100 at the moment.

Sure.....after I was first diagnosed, I opted to totally ignore it. Who knows how many years or decades I had ITP before my family doc noticed low counts? I went at least a year blowing-off the symptoms. It ain't gonna get me! No sirree!
Of course, after that year I ended up in the ER covered in black bruises and no platelets. That got me a few days stay in the James Cancer Hospital while they put me back on track. I will NEVER put my wife and sons through that experience again.

One thing that amazes me reading a lot of threads...the amount of people who stay on steady diets of Prednisone as their "treatment". I know steroids are inexpensive, but there are a lot of treatments for ITP besides steroids. I got off Prednisone as fast as I could.....3 months of Prednisone and 30 pounds gained were quite sufficient, thank you. Even the various immune suppressants are far more tolerable than Prednisone. And Cyclosporine in generic form is that same inexpensive $5 co-pay as Prednisone.

Some countries don't treat a lot of ITP cases because it doesn't cost public health systems to "not treat" something. Some places opt for Prednisone and/or spleen removal because they are a couple of the cheapest means TO treat.
Personally, since my insurance company is just fine with shelling out nearly $8,000 every month for my Promacta script, I'll just keep taking it! Max dose keeps me nearer to 50k at least.

Drug company and hospital research labs have been (and are) studying ITP causes/effects and they are making progress. Promacta and Nplate are the most recent result. Two drugs designed specifically for ITP. No magic bullet, but it is progress.
But since ITP can be caused by many factors, finding ONE cure for all is...well...a trick.

Hey....is getting on the cover of JAMA the same as Rolling Stone?
.

Ali, I am new to this site and not really sure how it works. Are you still online?

I was diagnosed with ITP at the age of 42 (7 years ago) and lived with it for about 2 years. I was mostly treated with prednisone (my blood type limited my options of medications). When I was first diagnosed, my platelet count was as low as 15. Sent immediately to a hemotologist, who put me on prednisone. My platelets would linger in the 70's for a while and then start dropping a little bit, so he would alter the dosage from time to time. After a year he tried to talk me into having my spleen removed (without even a guarantee that it would work). Because I believed there had to be a cause for my ITP, I just couldn't agree to doing something like that without trying to find out more. After another year of searching for answers, I finally found a possible cause. There was a connection between Helicobacter Pylori (H-Pylori), a bacteria responsible for most ulcers, and ITP. Should have been simple for my hemotologist to add that to my blood test, right? NO! He refused to test me for it, said he didn't believe it to be connected even after I told him that the possible connection of ITP and H-Pylori made the COVER of the 2002 issue of Hematology today! I actually had to go to my alternative health doctor who ordered the blood work. Surprise! I had H-Pylori! Now I had to get my Hemo to prescribe the necessary antibiotics. He wasn't happy, but he did (I told him I would get them in Mexico, if he didn't). After taking the medication, my platelets jumped, but after a week or so they slowly started to fall again. I had read that it was a stubborn infection, so I asked my hemo to test me again. The results came back neither positive nor negative. I asked him to prescribe the medication one more time but he refused and said it was just a coincidence that my platelets jumped after taking the medication. I was disgusted, because I new there was probably a connection. This time, I did go to Mexico and bought the 3 diff't prescribed medications. Long story short, 2 weeks later, my platelets were normal a few weeks after that I was done with prednisone and I have been in the normal range ever since, that was almost 6 years ago. Upon that last visit to my hemo (6 years ago), he had someone do the bloodwork (as usual) but sent a nurse out with the results and a note saying congratulations "Dr." Jackie. He still wouldn't admit that there was a connection. What I didn't understand is why he wouldn't at least test his patients with platelets so low, that they had to be in the hospital, it can be just a simple blood test! FYI - There is also a breath test, stool test and if I remember correctly, a stomach biopsy. Here is the kicker, since then, I have only met 2 other people with ITP. I told them to get tested for H-Pylori. Both asked there hemotologists to test them and both doctors refused. They went to other doctors, pretending to have ulceric like symptoms and asked to be tested for H-Pylori. Both tested positive and both were cured. I have to apologize for not posting this sooner, but I had never been on a site like this and assumed by now everyone would have heard about the connection. Just last month other countries revealed more evidence that they are related, but the U.S. still doesn't want to admit it! Doesn't surprise me one bit. Just google ITP and Helicobacter Pylori and good luck! I will be curious to see how many of you test positive. Maybe we can put a stop to this, once and for all [img/]

Lots of us have been tested for it. I was and was negative.

By the way, what was that bit about dying in hospital. Who was dying?

Again, some tests could show negative when you do indeed have the infection, that is why I took it upon myself to take the medication again, after all, it is only an antibiotic.

I should have used the term " in fear of ". I am very sorry for saying it that way, believe me, I know how helpless everyone feels. I knew of people that had been in the hospital for long periods of time because of their platelets being so low. My doctor had patients in the hospital at the time I tested positive and he still would not test them. The two people I spoke with both tested positive, one had ITP for 3 years, the other just 2 weeks. I am very surprised that you had and others tested negative, do you know of anyone that tested positive. Many people have H-Pylori and never know it, it is not uncommon. Did you just have the blood test or other tests as well?

Most of the people who treat H Pylori do not experience a rise in counts like you did. Many have been tested, treated, and have not had any luck. I'm glad you did.

seems like the treatment regime for h pylori is so insignificant compared to the alternatives that it's worth a try.

I had the blood test. Heama said that it would be positive if I'd ever had H-pylori, even if I no longer had it but if it was positive we'd treat anyway just to be sure. But the test was negative.

The treatment is harsh and I wasn't looking forward to it but would have done it anyway just to be sure. My haematologist is funny.. she said that if it was positive she'd pass it over to my GP to prescribe treatment so that I'd blame the GP instead of her.. LOL.

It's worth noting that if your on a proton pump inhibitor (sometimes given with steroids) you will always test negative even if you have H pylori.

www.annals.org/content/129/7/547.full

That report is talking about the breath test and not the blood test. The blood test simply looks for antibodies to H.Pylori.

I have been living with ITP for 38 years, probably longer and I have been through the majority of treatments and have not really found any one treatment that will continue to increase my platelet count. You will probably never know what has caused your ITP and at this stage there is no cure. It is a good idea to try all the different treatments as you could find one that does work and if you do not try you will never know. I have lived with a count of around 3 for many years without any treatment and I got used to the consequences but as there was no treatment that increased my count I had no choice. I am now taking Promacta with some increase but nothing remarkable but I do feel quite a bit better and it is nice not to have bleeding issues nearly every day.

I wish you luck and remember everyone is different and we all have our own minimum thresholds, but to take care of yourself....sailing might not be a good idea with a count below 20.

Hey Ann just curious as to how much prednisone you would take once your count went below 5 with blood blisters...I just could not handle the steriods anymore and today is day 1 of no steriods..I am going to keep it up until I can't handle the blisters in my mouth. I too have never been a bleeder or a unexplained bruiser...I just can't handle the blisters in the mouth. My count today was 111 only cause I was on 25mg...

Hey Ann just curious as to how much prednisone you would take once your count went below 5 with blood blisters...I just could not handle the steriods anymore and today is day 1 of no steriods..I am going to keep it up until I can't handle the blisters in my mouth. I too have never been a bleeder or a unexplained bruiser...I just can't handle the blisters in the mouth. My count today was 111 only cause I was on 25mg...

Hi JJ....
just dropped in to chk abt ur platelets.
did u get a CBC done after a count of 11k ?

They slowly made their way to 15 after two months. (And varied in size to boot!!)
I am now doing a water fast to see if I can really get my system in gear... Labs on Wednesday! Can't wait!!!