My husbands platelets were on a dive down to 19 from May through Sept and then increased for a few months and recently leveled off. I think high platelets are good-keep the bleeding to a minimum. Weight was also on a dive from May-June but stabilized when he started taking Vitamin D. So many unknowns.

I sure think I would get a 2nd opinion. Your doctor should be giving you more information that he has so you know exactly what is going on. You should be getting copies of his blood work which should show you where the platelets are supposed to be. You need to understand this disease and the information should come from you doctor. Is he a hemotologist?

I think your dad's platelet count seems pretty good! I met a lady the other day that has mds and she is on exjade and having really good results.

TM, I am new here. In fact this is my firt reply. However I can respond to your question. My own father is an MDS patient. He has been helped with blood infusions but - as we expected - developed elevated iron levels. His Hem/Onc ordered Exjade and the results are - questionable. It is an angry drug that seems to create havok on the patient. I am sorry you are also a victim as a caregiver. I know your pain and your hatred of the disease. I know also the frustration from just not knowing. There is an alternative to Exjade but it is not an oral form of med. It is a subcutaneous (spelling?) injection somewhat like an IV that takes about 12 hours to complete. The ability to take a pill instead of 12 hours of pump is what mades Exjade popular. Supposedly the alternative injection has little to no affects.
Also from my experience, the Hem/Onc are very slow to categorize their patients in buckes of risk factors i.e. low moderate high.
Your father's symptoms and my father's symptoms are very similar. In fact as I am typing this, my father - who has lost about 17 pounds in the past 2 plus years - is sleeping under many layers of blanket.
If I can help, email me. If not, I commend you as a caregiver.

Thanks to everyone for the replies. I know it is a good thing that his platelets are getting higher, I guess I just don't understand why. Last test they were 457. Can they get too high?

Barry - Looks like we are going through a lot of the same things. To top it off, my Dad had cataract surgery about 1 1/2 years ago. Last December he noticed something weird in one eye. Ended up he had a detached retina. The surgery was very intrusive - looked like someone smacked him with a baseball bat. He now sees double and is can't see real great out of the other eye. He can't drive now. He hates being dependent and this just makes it worse. His will seems to be declining daily. They haven't started the Exjade yet and I think the iron overload is taking it's toll.

I have been anemic my whole life receiving my first blood transfusion at the age of 6 months. At the age of 19, I was diagnosed correctly with a rare form of anemia, hereditary sidroblastic anemia. My body absorbs iron correctly but doesn't convert it to red blood cells.

On top of my body naturally storing large amounts of iron, the doctors gave me iron supplements when I was younger and the blood transfusions dumped large amounts of iron into my body.

My ferritin levels rose to toxic levels. My blood tests were coming back low on my liver functions, my spleen was very enlarged, and there were concerns about my heart as well.

I was one of the people that was searching the internet daily waiting for the USDA to approve exjade. Being 17 and having to hook up to an IV everyday in your stomach for 12 hours was no fun. The scar tissue was unbearable to stick through everyday.

Exjade doesn't taste the greatest (chalky), it causes me gas pains quite often, and it takes about 30-45 minutes to prepare each night because of waiting for the tablets to dissolve. But it works faster getting the iron levels down, it's cheaper, less painful, and it has less of an impact on my digestive system than desferal. And now as a 31 year old father of a 7 year old, it enables me to remain active and coach my sons sports.

Exjade has been a blessing for me

I have Hemochromatosis (excess iron), a gene from both my mother and father. To correct excess iron most patients have
phlebotomies, but taking blood was not an option due to the anemia.
I haven't had blood transfusions yet, but I'm about to start as my HGB was 8.1 and if it drops below 8, a transfusion has been ordered. We'll see on Tues if the Danazol is working.

With both MDS & Hemochromatosis, I started a drug Exjade about a year ago. I started taking 1,000 mg a day. Now I'm taking 750 mg. However, I'm tested once a month, if the levels are down, I take a month off and the following month I usually go back up.

It's a tough decision to make as there are so many side effects.
I wish you all the best.