ITP Newbie - Prefers Natural Remedies

Hello fellow ITP sufferers ... My name is Amber, my husband was dx with ITP in May of 2011. He went for his routine blood work and we received an urgent call from his Dr stating to get to the emergency room asap, that his platelet levels were at a 1! Of course being a young couple with two young children, I freaked out with not knowing the unexpected. Since than he has been admitted into the hospital twice, both times with levels under 3. I guess we are just looking for answers, like everyone else. This has to be the hardest dx because there is no magic treatment, it seems like it's all trial and error. Upon my husbands first stay in the hospital they had him on Decadron(?) which really boosted his platelets up, after 5 days he was released and put on 80mg of Prednisone, after 3 weeks, his levels went back down to 2. The Dr spoke of removing his spleen, but I have read so many cases that after the removal of the spleen, the platelets continue to drop. They did numerous tests in the hospital and ruled every contributor out (so they say). The second time they dropped, the same Dr did the same treatment and it failed to work again! He than had Rituxan treatment once a week for 4 weeks and it took until the 3rd treatment until his platelets starting to increase. After a month of finishing the Rituxan his platelets were up to 283,000. BUT, I was also making him fresh smoothies everyday with spinach and flax seeds or flax seed oil, I guess we became so confident that I stopped the smoothies and his platelets went down. One can't help but wonder if the Flax seed oil was helping contribute to his high level of platelets. We are really against the therapy drugs, they don't seem to work and have nasty side effects. Than a week later (last week) he went down to 196,000. We have since than switched Drs and are now at Cleveland Clinic of Florida. Just wondering if anyone out there has had any sucess with natural alternatives? My husband also suffered from asthma as a child and once in a while as an adult. I wonder if that can be a contributer as well. If any one out there reading this is from Broward County, Florida area and know of a support group or would like to come together to star one, we are interested. In numbers there is strength!

196 is a normal count so it seems that the rituximab is working. Normal counts do fluctuate so that the fact that it's come down is not important. It's still well into the normal range.

Flaxseed oil is said to make the platelets less sticky so with a lower platelet count there would be more bleeding, so best to avoid with a low count.

There is a natural treatment forum on the board where you will see all the weird and wonderful things that others have tried. You may want to post there.

Thank you, ANN

There is so much contradictory information out there, I read that flax seed oil helps increase platelets and also read the tomatoes and blueberries help produce platelets and just read else where that tomatoes and blueberries should be avoided with ITP! Ugh ... so frustrating

Hello - glad you found us. Rituxan can take, on average, 4 to 12 weeks to begin to work, so your husband actually had a quick response. His counts are great and Ann is right, counts will and do fluctuate. You could have a count done twice a day and see a fluctuation. This is due to continuous production and destruction.

ITP is autoimmune, as is asthma. It is fairly common for people with one autoimmune disorder to develop others. They can be difficult to control at times since the treatments are varied and the side effects can be awful. I don't know of too many people who have had much luck raising counts with diet, but I will say that it never hurts to eat healthy. The treatments are trial and error because all treatments do not work for everyone. Most of us have gone down the treatment line until we found one that worked and didn't cause too much grief. The treatments for ITP have actually come a long way in the last 15 years.

ITP can sometimes go into remission and Rituxan can cause that to happen, so hopefully your husband will have a lasting one!

Hope you're right, Sandi. I wonder if it is also common to have anemia as well, the Dr. has ordered that next time he gives blood, because she said he may have it. He has been very tired and gets headaches more than ever before. Thank you so much

ITP affects platelets only, but there are several causes of anemia. That should show on his CBC.

crzy,
I get headaches and fatigue when my platelets are low, and I don't have anemia. Erica

Amber,

I would encourage you to read through the natural forum. While I do not believe diet alone can heal ITP, I do believe it is curable. You'll find several people's stories on the natural forum. Spend a lot of time reading and see what you think.

patti

Hi Crzy,

I live in Broward County and and treated through the University of Miami.... I haven't tried any natural methods because I have ITP, Lupus, Sjogrens, and Raynauds so initially I they were pretty aggressive with me because I was very ill. I have changed my eating habits and exercise when my body lets me. I am currently in a support group for Lupus, not one for the ITP. I honest don't know anyone else around me that suffers from this disease other than online. ITP for me has been very confusing. Right now it is being controlled with Plaquenil, Prednisone (slowly tapering), and Imuran.... I hate the drugs but they are keeping me healthy.