Confused granddaughter looking for answers

[Tia]

My grandfather just died recently from Sweets Syndrome. He developed open sores all over his body, especially in his mouth and on his hands. At first they thought this was from the medication he was on (Revlimid)so they treated him using antibiotics. A few days after having the antibiotics they gave him morphine and he passed. Right now I’m just really confused and if anyone could elaborate on Sweets Syndrome or share some personal experiences with me I would appreciate it greatly. Thank you.

[Tia]

I was looking through a few articles on the internet and came up with another question. Is Sweet’s sydrome reversible? And if so, what kind of medicine would they use to treat it?

[Tia]

Also, if this helps, he actually died of respitory failure. I’m not sure because the details are sketchy, but I believe the lesions moved onto his lungs. He also seemed to have a bit of emphazyme. I’m not really sure if that connects at all, but I just heard about it and thought it’d be helpful if you new.

[Bkwits]

Hi Tia,
I’m very sorry for the loss of your grandfather. There are others on the forum who have dealt with Sweets Syndrome, but I really can’t help you with that. I do know that what is listed as the cause of death is not necessarily what is really the underlying problem. I hope someone else answers your questions about Sweets.

Barb

[patti]

Tia,

I know very little about sweets. I know someone from this forum that has it and it’s a very difficult thing to deal with. The normal treatment for sweets is prednisone. It has many side effects and is not good to be on long term – however, as best I know, it’s the only medical treatment available for sweets. The one person I know of that has it used some chinese medicine salves to heal up the sweets sores and that worked very well for healing them. But at last check (it’s been quite some time) he had not been able to heal the sweets. Short of healing the underlying disease that causes sweets (in his case the bone marrow disease) I’m not sure there is a cure for it.

Hope this helps a little bit. I’m sorry about your grandfather.

Patti

[Tia]

Thank you both. That’s at least cleared up what happened to my grandfather to some extent. At first we thought that Sweet’s may have been curable, but now I know otherwise. Thank you once again.

[Jerry]

How could that advice possibly help anyone ??? You say some Chinese medicine salves were used to heal up the sweets sores and that worked very well for healing them and then you say he had not been able to heal the sweets. You also say that Prednisone is the normal treatment. Do you know why they did not give it to her grandfather?? Me neither.

BE CAREFUL PATTI THAT YOU DON’T CONVINCE THIS LADY THAT HER GRANDFATHER WAS MISTREATED. YOU MIGHT BE CALLED AS A WITNESS.

Jerry

[Tia]

They didn’t give him the prednizone because they thought the sores on his body were caused from the revlimid. They said, “Sweet’s syndrome is so rare that they weren’t even looking for it.”

[Tia]

And I don’t in anyway think that my grandfather was mistreated. I’m too young to make an decisions. That’ll be left up to my parents. I was just looking for someone to explain a few things to me because my family is to distraught at the moment.

[willie]

Tia My wife was originally diagnosed with Sweet’s and prednisone was the only apparent treatment. It was a precursor to MDS and 6 months later the sores outbreak came back. Throughout those 6 months all 3 of her blood lines had been decreasing and a BMB determined that she had MDS. Her doctor said that she could have had the disease for 15 years and it just now manifested itself. I would encourage all who have Sweet’s to get a BMB. Willie

[patti]

Jerry,

I wasn’t trying to give her advice. I was trying to share with her the few things I have learned about sweets. I only mentioned the salves as a way to express that as far as I know, there really isn’t any cure for sweets. She asked about treatment. I mentioned the prednisone because that is usually the course of treatment. That doesn’t mean everyone gets it and that didn’t mean I thought her grandfather should have. She was trying to learn about sweets, not treat anybody.

Healing the sweets lesions and healing sweets syndrome are not the same. The lesions come and go; the syndrome does not. Nowhere did I say anything about her grandfather being mistreated!

Good grief, Jerry. Lay off of me. I can’t even try and help someone learn something without you climbing on my back. I said nothing wrong. I gave what information I could to a young girl. No one else here was answering her post (I waited to see) so I thought I’d give her what info I could.

As for other posts recommending natural therapies – I did what you asked. So much for an honest truce. Would you please quit being a jackass?

patti

[willie]

Tia My wife’s sores were treated topically with Neosporin but I don’t think that they would have had a solution for an internal issue other than prednisone. You can get on a Sweet’s website but her family doctor had to look it up since he did not know what it was. In my opinion, your grandfather was probably unlucky. I know that that is not a very satisfying statement but that is all that we were given. Willie

[willie]

Tia A followup. Terry’s sores were first seen and treated by a dermatologist. We would have been 6 months further along if the dermatologist and her doctor would have ordered a BMB. It may not have changed anything however – just got the appropriate treatment sooner.

[Jimbob]

Tia,
I am sorry to hear of your grandfather’s death. I was not aware that Sweets could cause death. As Patti noted, there is a person who used to psot a lot on the forum (John in GR) has Sweets Syndrome. He hasn’t posted since June but I have talked with him since them. I believe that the information Patti gave you is correct that there is no viable cure for Sweets but there are some treatments, like salves and meds, that can reduce the symptoms and the discomfort. Unfortunately, when one has Sweets or any form of MDS they also are more susceptible to other life threatening problems than other people. whatever the cause of your grandfather’s death, it was quick possibly unavoidable. May God’s love give you peace beyond your understanding.
Jim

[eve]

jimbob

how is john in gr doing

eve

[Author]

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