| Author |
Message |
MR H
Member
Username: Mr_h
Post Number: 1
Registered: 02-2011
| | Posted on Thursday, February 24, 2011 - 02:38 pm: | 
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I have recently started taking sirolimus instead of cycosprin 6 weeks ago to stop skin cancer, however there seems to be a number of sidel effects occuring. These include itching, shortness of breath and running to the loo a bit more often.
My question is does anyone else take this drug and if so what side effects have they had, listening to my consultant a number of patients give up with this drug.
Thanks |
Ted
Member
Username: Ted
Post Number: 22
Registered: 06-2003
| | Posted on Thursday, February 24, 2011 - 03:11 pm: |
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I have been taking sirolimus for 8 years now. When I first started taking it I got mouth ulcers on several occasions but they eventually went away and haven't returned since. I didn't do anything different to stop this side-effect - it just stopped on it's own.
I've also heard that it's supposed to help stop skin cancer but I've had numerous skin cancer spots that have been removed. So I can't say that it really helps there. I've also been affected with acme-type sores that come on occasion and one transplant hospital told me this was from sirolimus but I've had transplants at 2 different tx centers and the other one didn't seem to be aware of this problem. |
Cora
Member
Username: Cora
Post Number: 228
Registered: 06-2007
| | Posted on Thursday, February 24, 2011 - 07:00 pm: |
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I've been on it for 8 years also. When I first started, I had some leg pain when they increased my dose, but it went away. I do have a bit of a problem with anemia and take aranesp, but that's it for the side effects for me. I'm happy on it.
Cora
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008 |
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Solomon
Member
Username: Selvasolomon
Post Number: 21
Registered: 02-2008
| | Posted on Friday, February 25, 2011 - 05:22 am: |
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I got mouth ulcers and little stomach upset. Sirolimus( Siromus 1mg 1-0-1) was changed to Everolimus (Certican 0.75 mg 1-0-1)after being taken the former for one year,
Selva Solomon
| Tx on MAy 2006 from sister |
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MR H
Member
Username: Mr_h
Post Number: 3
Registered: 02-2011
| | Posted on Friday, February 25, 2011 - 01:25 pm: |
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I have now been told to stop taking sirolimus by my GP due to getting a rash and itchy skin. However been told not to take cyclosprin anymore |
Cora
Member
Username: Cora
Post Number: 230
Registered: 06-2007
| | Posted on Friday, February 25, 2011 - 03:29 pm: |
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Mr H, I would never allow my GP to alter my transplant meds. I would only allow my transplant center to do that. Call them and see what they think.
Cora
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008 |
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Diane
Member
Username: Diane
Post Number: 18
Registered: 06-2003
| | Posted on Friday, February 25, 2011 - 03:31 pm: |
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I would not stop any transplant medication without consulting with my transplant center. I to am taking Prograf and had my first episode with skin cancer. For now I am still on Rrograf because Rapamune caused my cholesterol to sky rocket well go over 300 even with cholesterol lowering medication. |
Erock
Member
Username: Erock
Post Number: 1
Registered: 04-2011
| | Posted on Tuesday, April 05, 2011 - 08:45 pm: |
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I've been on sirolimus for a year. To prevent the ulcers in the mouth I first fill my mouth with water then separate the sirolimus away from the rest of your meds, drop all the sirolimus into the back of your mouth and immediately swallow then take the rest of your meds. The more time in your mouth the more chance of getting an ulcer. |
simone
Member
Username: Simone
Post Number: 38
Registered: 11-2006
| | Posted on Wednesday, April 06, 2011 - 03:35 am: |
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Erock, this is a story that I have heard a few times and, to be honest, i really doubt it works...I took Sirolimus from 2003 to May 2010, then replaced by Everolimus: severe mouth ulcers started immediately and never left me till 11/2009, from then on I have never suffered of them anymore. It's the med, nothing to do with "if it touches your mouth etc" in my opinion. |
