If you do an internet search for “treatments for low platelets” you will find several FDA approved prescription pill form medications on the market. the choice will depend on the type of thrombocytopenia the person has. And they all have some degree of side effects, some of which may cause lowering of othe blood factors. An experienced hematologist very familiar with MDS should be able to offer you treatment options other than transfusions. The medications may be expensive, as are blood transfusions. If you do have choices, check with your insurance company to see if the drug you choose is covered. Keep researching for treatment options and discuss your findings with your hematologist. A bone marrow biopsy may be able to determine the type and reason for low platelet count, and help decide best treatment options.
Phil Fallacaro, Fair Lawn NJ I currently have MDS with all three blood cell counts on low side: white, red, and platelets. Ive been getting Procrit injections every two weeks to keep my hemoglobin from falling too low. I haven’t had any blood transfusions for the three years since MDS low risk diagnosis was discovered. I hope you get a response from someone taking a medication for low platelets and learn about the drug they are taking and it’s side effects. Best wishes for a resolution of low platelet problem.
Will, it never really worked although my transfusions were single units every 9 weeks opposed to 2 units. My HB would fall a week after the shot. Had an increase of mg dosage too. Like I stated side effects from the start. I feel I gave it chance at the end of the day. My Onc thought my body would get adjusted to it. Oh well. Procrit 60k units became Intolerant too. But going back on it for the time being. No cold turkey with this disease. I’ll have 2 units RBc now every 8 wks. I see my Dr @ Moffitt mid Oct. See whats maybe in the pipeline? Don’t want to do clinical trials because it’s uncharted with the side effects. Thank god people do these trials to help benefit others. GL Will keep us updated 🙂
I’ve been on it since early April. I’m stopping it now as the side effects or worse than the benefits. I’ve had extreme cognitive issues, fatigue & joint pain. My #’s are so so with it. A week ago had the shot HB 9.4. A week later 8.7. I’m going back to procrit 60k units. Luspatercept was approved with only 230 in the study. I’ve seen on FB groups more severe side effects than mine. I’ve reported my info to Bristol Myers & suggest others do so too. At the end of the day, quality of life is more important to me. GL to all,
read the side effects and get blood panels done too with list of side effects. I have. Very important
I was diagnosed with MDS-MLD-RS about two years ago. Started treatment with Procrit without success followed by Vidaza which helped for 18 months without need for transfusions. Then the Vidaza treatments began to fail and transfusions were required to maintain Hgb above 8.0. Had my first injection of luspatercept on July 13,20. One week later on 7/20/20 my Hgb had increased to 8.9 with no noticeable side effects from the injection. On 8/3/20 my Hgb had increased to 9.7 and I received my second shot of luspatercept. So far so good.
Jim M.
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.
Ian Palanglo, I have it mild compared to you. I’m not a BMT candidate. I’ve gotten my 3rd shot of Luspatercept but my HB is not responding,along with side effects. I’ve had 26 transfusions so far. Procrit didn’t work for me @ 60k units. I wish you well & thank you for sharing your journey. My thoughts are with you
Haydee, I also have MDS/MPN RS T. I posted several months ago and no one replied. It’s a rare branch of MDS. My Hemo/Onc said the same. I’m 60, with iron overload too. I told him quality of life. My wife can’t understand why I have to rest for an hr or 2 a day. My hemoglobin was @ 10.8 last Dec 2018. And has been going down since. When it got to 9.6 the hemo started me out on 40k units of Procrit. I go every 2wks for blood work. If I’m 10 no shot. I’ve been on it for 3 months now. Took awhile for the levels to get to 10. Nothing above. 4 weeks ago I was 9.7 and need a shot. 2 weeks ago I slipped to 9. It might no be working for me?? This Tue I see him with current blood work in hand. the lowest was 8.9 for me and that was 4 weeks after I started Procrit. No side effects. My Hemo said the FDA was fast tracking a drug named Luspatercept which he said maybe early 2020 it will come to market? Aranesp might be the next option if my level doesn’t rise.Fingers crossed. You have to be your spokesman. Your living with this not the Dr’s… I was given 8yr survival As you know its only 30% odds to transform to leukemia. Please feel free to call me. 239-247-2982. I’m in Florida. And stay positive.:) Best Jimmy
Has any one transitioned from Aranesp or Procrit to Dacogen? If yes, why was the change made and did it help? Any side effects?
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?
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.
My husband has RAEB and has been prescribed Procrit. Anyone used this, any side effects, did it help stimulate red blood cells, etc? Thanks as always.
Hi, I have same MDS as all of you, diagnosed in 2011. I was on Revlimid for 3 years. In the beginning, I took 5 mg every 3rd day. Later, i took 10 mg every 3rd day. These doses were settled on after a lot of trial and error with side effects. I had sporadic diarrhea the entire time. Hand tremors were one of the worst side effects I had from Revlimid. After about 2 years, I did mention that I was having loose stool for the last 3 months. Just to be safe, we decided to do a c-diff test. It was positive !!! Don’t write off all of your GI symptoms to the meds!!! You could have something. I believe that the Revlimid had ceased to work at that point and I should have gone off of it. I stayed on for another year until I got so sick and anemic, we all thought I was on the way out. In retrospect, I was also being under-treated. A case of benign neglect. A change of venues and doctors to an MDS Center of Excellence at UCSD turned everything around and I can’t recommend that course of action enough! The subsequent treatment was arduous and unpleasant because I had gotten much sicker by staying on Revlimid after it stopped working. They put me on IV Vidaza…..got a port placed…think I’ve had 20 rounds over the last 2 years. Biopsies show little change from last year and I’m not showing the 5Q Deletion anymore but there are different anomalies now(It may still be there they say….. but it has hidden for the last 5 biopsies if it is) The disease has weirdly stabilized in the White cell lines and gotten much worse in the Red Cell lines. Platelets are still ok. We think I’m at the end of Vidaza’s effectiveness as well. Procrit shots don’t work like they used to either. I am going with transfusions for now and enjoying some time off!! It’s hard to be “in treatment” actively for over 5 years. I had side effects to every drug they gave me and lots of GI issues. Good luck to the other patients starting on Revlimid. I hope it works for a long time for you.
I have been receiving Aranesp injections for almost two years for MDS. Because of changes to my insurance, they want me to switch to Procrit and also I will have to self inject. I haven’t really had any side
effects from the Aranesp and am worried about the side effects of Procrit. The side effects listed seem
to be worse than for Aranesp. Has anyone had a bad reaction from it? Has anyone taken both of these?
Was one more effective than the other?
My mother is 83 and has MDS. She has taken procrit since August and the Dr. raised her shot from 40 to 60 about 3 weeks ago. Her red blood count stayed up after getting 1 unit and increased for 2 weeks in a row. However, this week it had dropped from 9.1 to 7.2. We are bewildered at how and why it dropped so quickly. She has suffered terribly from the side effects of the higher dose, but was willing to suffer because her hemoglobin was going up. What in the world could have happened.
Discouraged
In Aug 2014 I was diagnosed with RARS. Low grade. I started out with 15 mg of revlimid which broke me out in a rash twice. I have now been on 10 mg revlimid going on 4 months. My HGB stays above 9 most of the time now which makes me feel better. I also take 50K mg of procrit once a week. So far this has been working for me pretty good. I cannot run a race but I feel better than I did for sure when I was not on the Revlimid and my HGB was 8.0 to 8.5. The revlimid does have some gastrointestinal side effects. If you eat fried or greasy foods you can be certain those will go through you. I take a daily probiotic, prebiotic, with enzymes which is in a powder form that I mix with an immunity booster (grape, reservatrol, cranberry etc cocktail) which helps immensely. Because it is not a pill and doesn’t have to process through my liver it works very fast and is very effective. I also eat one container of yogurt a day which is helping. I do sometimes get bone aches but procrit can sometimes do this to me. Just wanted to share this information with you in case it could help someone else on revlimid.
