28 year old male (ITP 14 years +)

Hello Im 28 year old male living with ITP 14 years, I was born with a disability called hipotonia its a nerves disorder anyways at 14 i was diagnosed with ITP after bruising in my hands and mouth appeared that time platelets transfusion and prednisone worked no biggie gained weight but lost it because i would walk at school. At 16 i got anemia a blood transfusion and prednisone helped lost the weight again. Then the ITP came back at 21 this time platelets fusion dont work anymore i even got chemo that time but lucky it went back to my normal 200,000 this has been going on every two year (21,23,25,27,28) now im wheelchair bound because of the weight gain and my disability cant handle so much weight on me. I already had splenectomy at 25 didnt work had to spend 2 months in the hospital after surgery even was given 500mg prednisone daily for 3 weeks didnt work until they gave me two shots of nplate rose my count to 600,000 that time. My latest happened last week monday i saw bruising on my arm so went to my doctor and my count was 1k he gave me 100mg a day on Wednesday it went to 9k and friday to 22k so he told me to take 60mg daily and today monday i got bruising again so i know im at 1k again couldnt go to his office because of memorial day so i started 100mgs again until i see him tomorrow........ was the dosage cut too drastic for my body?. what i note-rest that ever time i try doing exercise to get up i get ITP should i just stay wheelchair bound? is not having a healthy eating causing ITP (i eat less 2 times a day sometimes 1 i just wanna lose weight i dont over eat) any advice will help from MEDS to what i should eat and im uninsured will plans under omabacare cover ITP related doctors and meds? . im despered its taken over my life every two years

Hello,

I am sorry that you have had to battle itp for so long. I'm 29 and have had it for only a year and a half and that seems like forever to me. I do not have Obamacare. However my boyfriend works in the medical field and said that there are programs to meet the needs of all patients. I would call an agent and see what they say. That drop in roids does seem like a lot. I see that Nplate has worked for you in the past. I know Amgen has a great drug assistance program. I was on it for 6 months. The annoying part is having to go every week.

One more question. You said that you were anemic? My friend and I are trying to figure out if there is a correlation between the two. My hemoglobin was low, my counts were low. They got my iron up and my counts shot up. The same with her. Did you notice anything? Sorry to get off topic

I hope you find the info you need here! We are always here to support one another!

Thank you for your reply. I got anemia only once so i wouldnt know if it has to do with ITP too im sorry i just knew i had because i turned yellow in color in both my eyes and skin also felt tried very sleepy so i had a cbc and it confrimed it. i did get nplate but it was a last resort for me good thing it worked that time. how do i get in contact with amgen because i get tired of my doctors giving me just one option in meds.

I really wonder about your doctors and all that prednisone.. the Mayo Clinic website warns "the treatments for ITP can be worse than the disease". Something we all have to watch out for. I would find a new doctor or at least second opinion.

Check into Promacta, its similar to NPlate except that its a pill. You can get Promacta for free if you are low income and don't have insurance. Its the Promacta Cares program from GlaxoSmith Kline- your doctor must prescribe it and help sign you up. Its fast and easy to get, GlaxoSmith responds quickly with the drug as soon as the paperwork is faxed in. And they ship for free overnight Fed Ex.

yes, find out about Obama Care. If your income is very low the insurance is free. I believe there is an enrollment period coming up. Find a counselor to help you. I found a counselor at a health clinic in my town. You can get NPlate with ObamaCare- there is a pricey copay but also copay assistance from the drug company. (ps. you can't contact Amgen yourself to get NPlate, it has to be prescribed by a doctor)

thats your homework assignment! :lol: good luck!

i got back from my doctor today im back at 1k count he said it was his fault for lowering the prednisone too quick from 100 to 60mg so im back where i started except no bruising and now his gonna try Promacta after much hesitation i just need to take the social worker some paper and wait a week to get a respond back if i get them at a low cost or none at all. i already talked to a obamacare rep and told me i have wait until NOV.

My question is are there other independent insurances out there that would be affordable for you I'm the mean time. I agree with posey mint. Try to find a counselor to work with you. I worked with one when I was an independent contractor about 4 years ago and she was able to find a plan for me that was affordable.

I have to be honest I was curious because I didn't know what hipotania was so I looked it up. I agree with you I don't think the steroids and weight gain is good with your disability. I don't think exercise effects platelet counts. I went to an itp specialist in Cleveland. He told me to eat 3 well balanced meals with lots of greens and to not become a vegetarian or vegan ( I'm anemic as well). He does not see a correlation between diet and platelet counts. However, I feel that having a healthy lifestyle ( eating well and exercise) is essential for me being as healthy of a person as possible. Maybe it will help my body ward off other diseases in the long run.

I'm glad your hema recommended Promacta. I was on Nplate for 6 months and then Promacta since September. They both work really well for me. My only side effect was from Nplate and it was achiness. However, once my counts were above 50,000 and stable my doc said I could take ibuprofen if it got bad. I have no side effects on Promacta. It's great because once you're stable, you only have to go for CBC's once a month. It really changed my life. As posey mint said Glaxo works really fast with paperwork. There are 2 programs. I just have co-pay assistance since my co-pay with my insurance was 250 a month.

I know it's hard, especially without insurance, but have you thought about getting a 2nd opinion from another doctor?

unfortunately with out insurance this is the only cancer center in my arena willing to work with me they have 3 hemas in the center 1 is more understanding of my money situation only giving me cbcs calling me by phone onces in awhile but the other two want me to pay for cbc and office visit every time but i am look into independent insurances . can i get denied for health insurance for my past history?

As of 2014, the good news is you can not be denied based on pre existing conditions.

Hi
I'm also 28 and have had itp for 11 years steroids were brutal but it is possible to lose that weight but eating once a day isn't the answer I'm not gonna say im your numbers will improve but it's still not healthy to eat once a day esp for weight loss. I was once at 210 after continuous Iv steroids that brought my counts to 20, if that. I lost over 60 pounds eating fruit, salads and regular dinners don't stress you can do it. As far as meds everyone's right Amgen helped me with nplate when I had no insurance.

well yesterday i got my cbc and im 6k and doc told me to keep taking 100mg prednisone until my next cbc results on Tuesday and now im holding alot of water in my legs and blurry vision on and off. Hopefully i get approve for promacta by this week ill keep you guys updated on my progress.

Hang in there!

Ok so i just got back from my doctors office and got a cbc done im at 144k today i was 6k on Thursday he still has me on 100mg pred until next Tuesday i guess he hesitates lowering my dose to quick like last time.

Well this is good news

ok 4 weeks ago i got promacta 50 mg and 50mg pred for 2 weeks they went down to 132k last week i was 50mg promacta and 20mg pred i came down with pneumonia on June 25, had cbc on June 28 315k hemo on watch didnt take promacta away it wasnt until July 3 that i bugged them for a cbc 524k that they took away the promacta and gave a blood thinner shot.ive been on 20mg pred and a aspirin since the hospital discharge and awhile ago just came from my docs office my count is 922k he told me to keep takin 20mg pred and a aspirin also keep active.what should i do stop the pred?

I am very confused as to why your hema put you on Promacta before completely weaning you off prednisone. Can you please explain his/her reasoning. I'm confused.

he told me he couldnt just take away the pred so quick after being on it 100mg pred for a month

Your doctor is right. You can't stop the pred quickly or you will have a serious reaction which can result in death. You have to taper slowly off pred to allow the body time to adjust. He can however stop and start the promacta with no problem so that is what he is doing. A high count with promacta is worriesome hence the aspirin to thin the blood. Your doctor is on the case. Good luck.

Sorry I should have scrolled up farther. Now I see why you were on Promacta. I wonder if it took awhile for you to respond to prednisone and then you responded to Promacta as well making your counts sky rocket. I really hope your counts go into the normal range ASAP.