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Beginning aranesp treatment for low risk MDS

This topic has 9 replies, 5 voices, and was last updated 2 months, 1 week ago by Marie Yeager.

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February 14, 2023 at 2:46 am #59263
Joe Catalano
Participant
Diagnosed one and a half years ago. Was on watch and wait. Just now started aranesp- on it for six weeks. Red blood cells, and hemoglobin have risen slightly. Still mostly tired- Has anyone recently began aranesp ? How is it working for you? Thank you.
- This topic was modified 7 months, 1 week ago by Joe Catalano.
February 21, 2023 at 9:00 am #59305

Marie Yeager
Participant

Hi Joe,
My husband is also low-risk and started Aranesp 18 months ago. It took a good 4-6 months for it to really begin to work. We were very anxious looking for an immediate response with every blood test, but they warned us that it would take a while to start feeling better… and the doctor was right. Give it more time. It is very difficult to be patient when you aren’t feeling well, but it did eventually pay off! Hang in there!
Marie

March 3, 2023 at 9:07 am #59324

Joe Catalano
Participant

Thank you for your reply Maggie. It was very encouraging. And yes I will be patient. I had read for six weeks, so I was expecting that, but it’s good to know that it will eventually kick in. Once again, thank you and best of luck to you and your husband. Good health.

March 18, 2023 at 3:46 pm #59334

Scott Davey
Participant

I’m taking Aranesp, but also Granix to keep white blood cells up and Luspatercept, which does an excellent job keeping HgB numbers steady. None of these seem to affect my symptoms (shortness of breath) though.

March 26, 2023 at 1:28 pm #59341

Joe Catalano
Participant

I know, I replied to your comment, and thank you. It was uplifting. A question that has a reason is, did they have to increase the dosage for it to do its work. My numbers have gone up a bit and slowly and my doctor and I have discussed the possibility of increasing dosage

March 26, 2023 at 2:00 pm #59342

Scott Davey
Participant

No, I’m still on the same dosages they started me on. The only one I have the dosage on is the Neupogen: filgrastim 480mcg/1.6mL Soln
Commonly known as: Neupogen. Good luck!

April 28, 2023 at 6:58 pm #61832

lisab
Participant

My husband’s hemoglobin dropped due to kidney failure. They gave him aranesp. It took about 6 months for it to kick in. He is now at a good level for transplant.
On the positive side of things it gave him a taste of what my life is like with MDS.

June 29, 2023 at 11:40 am #63282

Joe Catalano
Participant

Thank you all for your replies just an update here I begin increased dosage from 300 to 500 units of our nurse two weeks ago.
So far, my red blood cells and hemoglobin are remaining about the same; no increase in either. Don’t know if that’s important to anybody but if you’ve got something to add, please let me know. Thank you.

July 5, 2023 at 2:10 am #63284

Darwin Thomas
Participant

hi

July 16, 2023 at 1:22 pm #63302

Marie Yeager
Participant

Hey Joe,
I hope you are seeing improvements! They started my husband on 500mg to start, so it seems your doc is taking a conservative approach to see how your body responds. You don’t want to ramp up to top unless you really need it. How often do you get your injections? My husband started out every three weeks and is now getting them every two weeks (for about the last 9 months). His hemoglobin was surprisingly high this last time, so thinking they might move him back to every 3 weeks. You should start seeing improvements over the coming weeks. (In energy too!)
Hope you are doing well,
Marie
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