Who takes Procrit

[usaf1125]

How many people are taking Procrit, I inject weekly. The only treatments that I see on the Forums are,Revlimid, Vidaza, ATG, Novpogen.

[Donna E]

Hi my Dad took Procrit for many years and had success with it. He also took Neupogen for many years. His MDS was under control for many years with these drugs. I know they also tried Vidaza but am not sure how that was.
Keep up the fight . . . and ALWAYS hold onto HOPE.

[Birgitta-A]

Hi usaf1125,
You know you probably belong to the 5 - 10 % MDS patients with refractory anemia . These patients have the best prognosis of the MDS patients. They can manage very well with treatment with EPO drugs like Procrit, Aranesp and similar drugs that stimulate the bone marrow so it will make red blood cell.

Other patients like me have all counts low at dx. My kidneys were trying to stimulate my bone marrow and were desperately releasing EPO into my blood without effect on the very fibrotic bone marrow. My own EPO was more than 800 and when it is so high Procrit won't help me.

90 % of us sooner or later don't manage with supportive therapy alone so we have to start more active therapy with Revlimid, Vidaza or other drugs.
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, supportive therapy with txs until 2010 when I started taking Thalidomide with good effect.

[Lisa V]

Probably the reason you don't see it listed on the forum as a treatment is because, like transfusions, Procrit is considered supportive therapy rather than a curative treatment. In other words, it will not do anything to alleviate the underlying condition, but it can help keep you going.

Ken took Procrit following his first ATG, through his second round and for a couple of years afterwards. It helped him keep his Hgb higher than transfusions alone. Fortunately for him, he was eventually able to discontinue it, thanks to the ATG/cyclo.

[soft92evo]

taking procrit since 10/28/11 with revlimid and predisone down to 2.5 mg. My hgb is up from a 7.9 10/28 to a 12.9 12/30/11. Procrit was weekly, now chgd to bi-weekly.

[annmonster]

I have Procrit injections every other week since last Sept. So far it has not (apparently) helped since I require transfusions every two weeks.....I hope that it works better for you !! : )

[Susan]

My hem told me in all his years I'm the only one who's had an apparent allergic reaction to Procrit. I had a torso rash, very ichy and annoying. Was a two week shot (like an extended release) so had to wait it out and then stopped taking it.

Has anyone else had a negative reaction of some sort and did you try a diffent brand or other EPO with success? The manufacturer's scientific advisor told me most likely it's an allergy to the mammal the drug was grown in. Looked it up, mammal is also Chinese Hamster Ovary.

My hospital pharmacist told me there's only two brands/types availble in the U.S. Other must be Aranesp. But also from CHO.

Please let me know if you know of another EPO on the market.

[Lisa V]

There's also Epogen, which is essentially the same as Procrit. Both are epoetin alfa. Aranesp is darbepoetin alfa, a longer lasting formula. There are other brand names, but I don't know how many of them are available in the US. http://en.wikipedia.org/wiki/Erythropoietin

[usaf1125]

Originally Posted by annmonster

I have Procrit injections every other week since last Sept. So far it has not (apparently) helped since I require transfusions every two weeks.....I hope that it works better for you !! : )

I have injected myself with approx. 360 or 365 injections of Procrit since 2005. Still getting 2 units of blood every 2 weeks. It keeps me going. Still get tired easily, I'll be 80 in another month and no sign of Leukemia so I'm happy. I hope that 2012 will bring a discovery of a new major treatment. God Bless and keep positive

[Susan]

Leo, Wonderful and so happy for you.
Lisa, thx for link if plts keep falling going to the NIH in a few months to ck my options.
Researching many kinds of immunosuppressants and an ITP med, looking for alternatives to cyclo. Almost all made with various rodents, & if allergic to 1, not supposed to take any. Kind of funny but not funny.

But seems everyone who wrote on site about their experience with Campath (made using rodent) did get a rash. Doubt all are allergic to rodents. So....just maybe my reaction was a side effect not an allergy. Going to NIH few mos will try to find out.