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MDS with Sweets Syndrome, lung nodules

This topic has 6 replies, 3 voices, and was last updated 5 years, 1 month ago by Rose eden Guanzon.

Viewing 7 posts - 1 through 7 (of 7 total)

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December 20, 2018 at 2:29 pm #44765

Roger Hennicke
Participant

I have low grade MDS. I now have Sweets Syndrome also. The Sweets Syndrome started with fever, sores and nodules on my skin. It now has progressed to having nuetropholic nodules in my lungs. I am on 40,000 units of Procrit a week and 40 mg of Prednisone. I am looking for a center that specializes in the complication of Sweets Syndrome with MDS. I live in north Florida. Mayo was not able to diagnose the Swwets Syndrome. Most physicians have never heard of Sweets Syndrome and even fewer have heard of it attaching major organs. If anyone has any reccomendations please let me know. Right now the Sweets syndrome is of great concern. Thanks
Roger

February 18, 2019 at 11:26 am #45113

brook2016
Participant

Roger, were you able to get help for the sweets? My dad has the same thing. Steroid helped initially but has stopped. We are in Texas and no one seems to know what else to try.

February 18, 2019 at 11:44 am #45114

Roger Hennicke
Participant

Brook, unfortunately I have not found any other thing other than the Prednisone. I am going to my Infectious disease doctor Thursday and I am going to see if there is something else I can try. I have tried 5 times to tapper off the prednisone without success. Sweets always comes back.
Good luck with your Dad’s battle and let me know if you find anyone that helps.
Roger

February 19, 2019 at 2:38 pm #45127
brook2016
Participant
I have read that potassium iodide can work. We mentioned that to his doctor and I think they are going to try that for my dad. I’ll let you know if it is successful. Good luck to you as well.
- This reply was modified 5 years, 2 months ago by brook2016.
February 20, 2019 at 7:25 am #45140

Roger Hennicke
Participant

Hi Brooke, Thanks for the info on the potassium iodide. I am going to run it by my doctor on Thursday. Thanks for all the help that you are providing your Dad. So few people understand sweets and all the ways you body reacts to it. I know your Dad is going through a brutal time and I will keep him in my prayers. Stay in touch and I will as well. We need to find something or someone that can kick the sweets so we can focus on the MDS.

February 20, 2019 at 3:51 pm #45145

brook2016
Participant

Thank you so much for your prayers. I will be praying for you as well. MDS is bad enough…sweets is just making things so much worse. I’m so sorry you are having to go through it. If it’s not too late you can ask your doctor about colchicine As well. I read it is another drug that can treat sweets. I hope you get some relief and can get off the steroids soon!

March 4, 2019 at 11:30 pm #45777

Rose eden Guanzon
Participant

Praying for both of you…
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