[Gladys Mize]

I was diagnosed in 2014 with MDS & started taking Procrit in 2015 & did so for several years with 3-4 transfusions a year. Last September the Procrit stopped working for me and I was having transfusion weekly. I was taken off of Procrit & in February I had a round of Dacugen (chemo- 1 hour per day for 5 days) without any major side effects. In March my numbers dropped significantly & I ended up in the ER with a hospital stay of 6 days. I got out and COVID hit so we had been prolonging starting the chemo again & I have been receiving transfusions monthly. My HGB numbers get to 8.9 the highest. I read about Luspatercept & asked my doctor if we could try it. I had my first shot last Monday (7/20) and go back today (7/27) to see where my number is. The worse part is I have no energy, worse then when my HGB is low. Luckily, I’m working remote so I can rest & work with my laptop on my lap. I have heard good things about the results so I’m staying positive. Will update you all later. I’m grateful to not have other worse side effects & it’s good to hear it’s work for people. My ferritin level is close to 4000 so that’s another issue but not as bad as having low HGB. One day at a time.

[Gladys Mize]

I have been on 60,000 units of Procrit once a week for several years now. My HGB numbers haven’t gone above 9.0. Lately HGB is 6.1-8.1. I’m having to have a transfusion once a month. It seems I only need them July/August to December and then I’m good. My doctor is saying the Procrit is no longer working & wanting to try other options (chemo). I’ve tried DoTerra DDR that worked for a while & a blood booster I found on Amazon but I’m running out of options. I had thought of using CBD oil but wasn’t sure if it would help so I’m glad to see it has for some folks. I’m planning to see a holistic doctor in January for other options. My HGB is 6.1 today & I am really struggling with energy levels, it’s an effort to walk to the bathroom. thanks for sharing your stories. I wish you all the best, feel better.

[Gladys Mize]

Hi Lynne,
I had been on 40,000 units for 3 years & in July my blood levels stopped rising so they raised me to 60,000 units but it doesn’t seem to be working. I have never had any bad side effects. They are now talking about chemo. Anyone else have these issues? What did they put you on to help after the Procrit?

[Gladys Mize]

Yes, I’ve been on Procrit 40,000 units for 3 years without any side effects but each person is different. In June my blood levels were not rising so I had blood transfusions in June & July. The doctor raised my Procrit to 60,000 units a month ago. this week I am struggling to feel well & I think my blood levels are low again. I go back to the doctor 9/6 and will see how I’m doing.

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