Myelodysplastic Syndrome (MDS)

Posted by jaylevel1 @jaylevel1, Nov 16, 2018

is there a natural alternative that has shown success in promoting more red blood cells. Currently I am receiving shots of Vidaza but not helping at all. I did better when I had a port but my body rejected it, so now I gt the shots in the back of my arm in the muscle. Strong dosed of vitamin b12 don’t help either. With the port I was holding 11 12 easy in red blood cell counts. Normal range in males is 13 to 18. But anything over 10 is great. With the shots I can’t break 9 and just had to have a transfusion when my blood counts dropped to 7.2 I don’t have cancer but there is risk at that low of having it set in. I was just looking to see if anyone that has this have other suggestions to try. I’ve bought and tried Prohemia which promises increases of red blood cells but I’ve tried it for a couple of months with no improvement in counts.

Hello @jaylevel1, welcome to Connect. It is my understanding, and I am not a medical professional, that Vidaza is a medication that is supposed to help red blood cells mature. If you don't mind sharing, has your provider discussed taking any other medications that are prescribed for MDS that are meant to stimulate growth of red blood cells [epoetin alfa (Epogen, Procrit) or darbepoetin alfa (Aranesp)]? Here is a little more information from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/diagnosis-treatment/drc-20366980. I'd like to invite @reibur1951 to this discussion as they have discussed MDS in-depth and may have some insight on the disease to share. You can also read some of rebur1951's posts here, https://connect.mayoclinic.org/discussion/melodysplastic-syndrome-unspecified-myelofibroisis-1/.

@jaylevel1, how are you feeling with this disease? Many people talk a bout experiencing fatigue, are you finding this to be true?

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@JustinMcClanahan

Hello @jaylevel1, welcome to Connect. It is my understanding, and I am not a medical professional, that Vidaza is a medication that is supposed to help red blood cells mature. If you don't mind sharing, has your provider discussed taking any other medications that are prescribed for MDS that are meant to stimulate growth of red blood cells [epoetin alfa (Epogen, Procrit) or darbepoetin alfa (Aranesp)]? Here is a little more information from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/diagnosis-treatment/drc-20366980. I'd like to invite @reibur1951 to this discussion as they have discussed MDS in-depth and may have some insight on the disease to share. You can also read some of rebur1951's posts here, https://connect.mayoclinic.org/discussion/melodysplastic-syndrome-unspecified-myelofibroisis-1/.

@jaylevel1, how are you feeling with this disease? Many people talk a bout experiencing fatigue, are you finding this to be true?

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A week ago I had to have a transfusion. 2 units. My red blood count fell to 7.2. A year ago I had another transfusion for much of the same reason. I had 2 different ports put in over 3 years cause they kept getting infected. Now I have none and recieve the Vidaza in the form of shots. In addition I get a shot of arnies (sp?). My red blood counts dropped real fast and a little over a year ago I had my 2nd bone marrow biopsi. Results came back negitive nothing abnormal. My hemotoligist said the results were great and continue with the shots. I believe he said It came back as less than 2 percent, whatever that means. Prior to a year ago I was doing great red blood cell counrs were 11 to 12.5. But a year ago I had a transfusion and they put it through my port and because it was still infected I went into septic shock and had to be rushed upstairs at the hospital where I was getting the transfusion. Thankfully I survived fully and within a week in the hospital I was fully recovered. I get my blood checked ever two weeks and although my numbers are not where I'd like my white blood cells, plattelets lymphnods are all great. I have high iron but thats because of the transfusion. I'm told it takes a long time for it to get back down.

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I am interested in talking to anyone who has went thru this and results,what to expect .

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@cybears

I am interested in talking to anyone who has went thru this and results,what to expect .

Jump to this post

Hello @cybears, welcome to Connect. I moved you discussion and combined it with an existing one titled Myelodysplastic Syndrome (MDS). You also had asked about bone marrow transplant. I would like to share with you another conversation on Mayo Clinic Connect that is titled "Bone marrow transplant support thread," https://connect.mayoclinic.org/discussion/would-like-a-stem-cell-transplant-support-thread/. That may be another conversation to click on, read through, and participate where you feel comfortable.

@cybears, if you don't mind and are comfortable sharing, how are you doing with your MDS diagnosis?

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I am doing well, fatigue when I exercise climb stairs etc. but have felt better recently,Drs started me on B 12 and my last hemoglobin level was 13.1,had been 11/12 range.My delima is the Drs feel I should have a Boone marrow transplant sooner than later,and have a non family match from the Be the Match registry . But after meeting with counselor s etc.,the length of the process, possible complications, financial repercussions have me questioning whether to do it now or continue to monitor and wait?

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I have been doing very well with Procrit shots every 4-5 months, in a series of 4 or 5 weekly injections. Then when my red count goes down I start the injections again. I was once told by a good dermatologist that my all-over itchy skin is part of my myelodysplastic syndrome. It's very disturbing trying to control the itching. Anyone out there have this condition?? @

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