MDS and walking.

@joanmroby Thank you for sharing about azacytadine being a common treatment for MDS. It’s one of several meds which can be used to help patients with myelodyplastic syndromes. Some meds help control or slow the progression. Other meds can be used to assist with symptoms such helping to raise red and white blood cell counts, along with transfusions for blood and platelets, etc. That’s why I’m a bit perplexed with another member being told there are no treatment options. Perhaps it was because treatment wasn’t warranted yet so his doctor didn’t mention it? Not sure. Anyway, thank you so much for your input.

How have you been? Are you still receiving occasional platelet transfusions?

I’m a 59 yo female and I was diagnosed with MDS about 18 months ago and I suspect that I was suffering from it for 3 years or so prior. But one of the most obvious symptoms I initially had was the inability to walk any distance without getting winded, fatigued and having muscle pain. I wasn’t even able to walk to my car without these issues. This was troubling because just 5 years before I could have walked 3-5 miles without any problems even though I have back and joint issues. I’ve been receiving treatments since January of 2025; I have blood draws and Procrit injections every two weeks, routine iron infusions and take a lot of supplements each day. My oncologist has been reluctant to perform any blood transfusions or bone marrow transplants. But I still can’t walk any distance or for long periods of time. I need a grocery cart to walk from my car and throughout stores even if I don’t get anything. So your not alone.

@joyoushipsspine7 I joy. You sound very much like myself. Although I can walk a little more. I might be able to walk around a foot ball field but about 1/2 way around my hips are hurting an my legs feel like clubs. I have had no treatments yet, only a bag of iron a couple months ago. I get a blood draw next week and see my new oncologist the week after.
Before I was diagnosed MDS, I had itching problems and my reg family doc sent me to a Dermatogist, and for 1 1/2 yrs he prescribed creams/saves (sp) but nothing worked. I had to see him the other day and told him about my MDS. We talked for a while and I told him that my Oncologist said I had 6-9 years before things might get bad. He said he is very aware of MDS and he has other patients with it because of itching. I don't know if he knows what hes talking about, but he said not to worry because he has heard that there has been much improvement and there are cures in the near future. I hope he knows but I don't know about that. Thank you for you post.

@twitt1949
I’ve had itching as well but I’ve suffered from allergies since I’ve been little so they always say it’s that. I too was told to take iron, D3, Magnesium and Copper supplements. I also have a prescription for D3. MDS was officially diagnosed after a bone marrow biopsy. My oncologist said with the treatment advances that I may never progress into leukemia or other complications. I have noticed some improvement since beginning treatments; I no longer get as winded upon walking and have a little more energy. In November I started to get tired, less energy, more headaches/muscle aches and an increase in pain. On my next doctor visit (I see him every 6-weeks); he reviewed my blood draws before my last visit and the ones I had gotten from my Procrit injections. He then decided I needed another six weeks of iron infusions. It took awhile for it to work but it does help so we discussed doing them every six months. It did take what seemed like forever to get a diagnosis. My PCP treated me for anemia for 3-4 years before referring me to the specialist; so I had been on oral iron supplements since then and that made NO difference. We did discuss blood transfusions at one point but he’s reluctant to perform them because of complications but he wanted to try these other options first. Good luck and keep me posted. Know your NOT alone.

Hi @joyoushipsspine7 Offering my official welcome to Connect though I see you’ve been a member for quite a while. So happy to see you join in the discussion, especially to offer some reassurances and share your story with @twitt1949. That’s what Connect is all about!

It’s not easy when life forces us to slow down long before we’re ready. But your positivity with these changes is very inspiring. It sounds like you have a great oncologist who working with you to help keep you enjoying life. You mentioned receiving iron injections every 6 months or so. Does that seem to help your muscle pain?

I recieved a diagnosis of MDS from a BMByopsy about 3 yrs ago after my platlets went below normal. I had recieved a treatment for anemia there after. I have never been told that my low platlets were from MDS. I recieve IvIg every 3 weeks for neuropathy and they keep an eye on my blood counts.