Myelodysplastic/Myeloproliferative Neoplasm with Ring Sideroblasts

Hi Robin. Welcome to Mayo Connect. I’m trying to recollect a member who has both MDS and MPN with (ET). Hopefully they’ll pop into the conversation.
Ring sideroblasts always make me think of a fast food order.☺️ However, basically those little gems are culprits producing anemia in conditions such as MDS. The anemia may likely be causing your aches and fatigue.
I found this little informational article from Biology Insights that has a good explanation of Ring sideroblasts. You might find it interesting.
https://biologyinsights.com/ring-sideroblasts-formation-and-associated-conditions/
The hydroxyurea you’re taking, is helping to keep the excess platelet production under control. It may not necessarily help with the anemia conditions. That’s such a miserable feeling to be so sluggish. How are your hemoglobin level and ferritin levels?
To answer one concern you have, yes, with blood conditions the lab results may fluctuate from one test to another. It can be startling to see how quickly blood cells are impacted. When I was having blood work daily for a period of about 2 months and then every few days for months, it was astounding but fascinating to see how rapidly numbers changed. Because there are fluctuations in lab results, doctors tend to look at overall trends to determine the significance.

Have you talked to your doctor about the change in your symptoms? Are you working with a hematologist who specializes in MDS or MPNs?

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@loribmt Thank you for replying. I have informed them of the bone pain that has been slowly coming on. This past weekend just seems to be getting worse.
My hemoglobin as of Dec. 31st was really good. Ferritin level was a 8 in July which was the last test that was done. I see Oncology/hematology and they both seem to know a lot about this. Dr has informed me that its just a matter of time before this develops into Leukemia. Were just trying to hold it off for as long as we can. I did blood work every 2 weeks for the first 7 months and in Nov. we went to once a month but Nov blood work showed stable but platelets started climbing.. not out of normal range but going up. Dec. again showed a rise, more than Nov. showed. This blood work fluctuation is just mind blowing, how fast your body changes. 2 week or 1 month.
My question is that I wondered if Hyrea could be part of the bone, body aches?

Hi @robinh06 I’m not sure if hydroxyurea is contributing to your bone pain and body aches. We have several members taking that med so I’m expecting someone will pop into the conversation and share their experience. Most side effects that were posted were fatigue and headaches.

One thing I do know with blood cancers it may take some tweaking to find the sweet spot with dosages or even mediation changes to get a balance between efficacy and side effects. There can also be changes within the blood condition itself. That’s why there are more frequent labs if a doctor notes changes.

Has your doctor discussed long term treatment options for you? Has an allogeneic bone marrow transplant been discussed or other medications?

@loribmt oh yes the fatigue and headaches are a pain. The headaches have definitely gotten
better than what they were.
Both oncology/hematology have told me it could take a year or more to regulate my blood.
Just patiently waiting. lol Oncologist told me that the headaches probably was not a side affect from the Hydroxy . Had to do a head MRI.. showed all clear. I knew it would. I have read on here alot of headaches and fatigue.
We have not talked long term treatment options. He just says we will deal with the changes as they come.
Very thankful for this page to have see what others say.
Thank you for helping.. 🙂