IHD people on steroid-free protocols

[Sugarlump]

Anyone on a steroid free protocol could you let me know what meds you take instead and if its working well with the transplant,

[Chris]

I was on CellCept and Prograf for 10 years with intermittent use of Myfortic instead of CellCept. I developed problems taking CellCept and was switched to Rapamune last September. I was told I am one of the very few who develop an intolerance to taking either CellCept or Myfortic after so many years. I have had my transplant for almost 11 years, so I say it has worked well for me.
 
I am on a low dose o prednisone now for arthritis tho now of 2.5 mg a day

[okarol]

Jenna is 4 yrs, 3 month post transplant - taking CellCept and Prograf, had steroids for 3 days following her transplant. Had a rejection episode a year ago and had 2 days of prednisone. No other steroids used.

[Sugarlump]

I was on CellCept and Prograf for 10 years with intermittant use of Myfortic instead of CellCept. I developed problems taking CellCept and was switched to Rapamune last September. I was told I am one of the very few who develope an intolerance to taking eith CellCept or Myfortic after so many years. I have had my transplant for almost 11 years, so I say it has worked well for me.
 
I am on a low dose o prednisone now for arthritis tho now of 2.5 mg a day

Chris were you started on prednisolone immediately after transplant for a while and if so how long?
If not, did they give a reason for this?
11 years is going some     

[rsudock]

what class of drugs does Cellcept and Myfortic fall into? These drugs do not hamper your body's immune system then?

[Sugarlump]

Cellcept/ Myfortic acid are both very toxic immune suppressors, increases the risk of cancers significantly.

[paris]

I had an IV round of steroids during the surgery, but that was all (also a round of chemo during surgery).  Prograf and Cellcept are my immune suppressors.  I feel fortunate to not be on steroids.   I'm still new to the transplant meds and adjusting to the side effects.

[Chris]

I was on CellCept and Prograf for 10 years with intermittant use of Myfortic instead of CellCept. I developed problems taking CellCept and was switched to Rapamune last September. I was told I am one of the very few who develope an intolerance to taking eith CellCept or Myfortic after so many years. I have had my transplant for almost 11 years, so I say it has worked well for me.
 
I am on a low dose o prednisone now for arthritis tho now of 2.5 mg a day

Chris were you started on prednisolone immediately after transplant for a while and if so how long?
If not, did they give a reason for this?
11 years is going some 

There may have been a steroid used for one day post transplant thru the IV, but nothing after, but I can't remember the name of it. I know it wasn't prednisone or the one that starts with a C that for some reason is skipping my memory.
 
As far as the cancer risk, I thought it was prednisone and  (I hate memory problems, but it is the one that is taken with orange juice) that were at a higher risk of cancer compared to CellCept and Myfortic from what I read years ago. Either way it is a given risk of transplantation.
 
I am going to have to dig out my books to get name of the immunosuppressant names.

[kellyt]

I was started on 40 mg of Prednisone the day I admitted for my transplant (Nov 4, 2008 the day before surgery) and I was finally completely off the Prednisone on May 31, 2010.  I take no other meds other than my Prograf, Cellcept, Pepcid, BP med, cholesterol med, a nd Acyclovire.

[kellyt]

I was on CellCept and Prograf for 10 years with intermittant use of Myfortic instead of CellCept. I developed problems taking CellCept and was switched to Rapamune last September. I was told I am one of the very few who develope an intolerance to taking eith CellCept or Myfortic after so many years. I have had my transplant for almost 11 years, so I say it has worked well for me.
 
I am on a low dose o prednisone now for arthritis tho now of 2.5 mg a day

Chris were you started on prednisolone immediately after transplant for a while and if so how long?
If not, did they give a reason for this?
11 years is going some 

There may have been a steroid used for one day post transplant thru the IV, but nothing after, but I can't remember the name of it. I know it wasn't prednisone or the one that starts with a C that for some reason is skipping my memory.
 
As far as the cancer risk, I thought it was prednisone and  (I hate memory problems, but it is the one that is taken with orange juice) that were at a higher risk of cancer compared to CellCept and Myfortic from what I read years ago. Either way it is a given risk of transplantation.
 
I am going to have to dig out my books to get name of the immunosuppressant names.

cyclosporine?

[Chris]

Yes Kelly, I just thought of it and came here and saw you posted it.
 
Thought of it while updating the software on my TV, odd aren't I?

[coravh]

My first year and a half I was on rapa and prograf. I developed prograf toxicity and was switched to myfortic. I was back on the rapa for about a year after my pancreas tx, but am now back on the rapamune and myfortic combo. It's worked well for me for over 8 years and (knock on wood) I've never had an episode of rejection.

Cora

[kellyt]

That's great, Cora.  I haven't had one yet, either, but I'm just a little over 2 years out.  I pray it never happens...for me or you!   

[Sugarlump]

I asked the doctor today why I couldn't be on a steroid-free drug regime (to avoid all the side effects) and he said I'm a too high-risk patient (high levels of antibodies\ previous transplant failure\ earlier episodes of rejection) but I now have to have a whole set of different blood tests to ascertain what the steroids are doing to my hormone and thyroid levels! They did reduce the dosage though.

[staceyand joe92]

I am on Cellcept/Prograf/Fluconazole. My center in Phoenix doesn't use steroids.

[Sugarlump]

I'd like to print out these replies and put it down in front of my doctor and say Hey look no steroids!!!!

Apparently tacrolimus (I'm on Advagraf) makes the steroid (Prednisolone) react more strongly which could explain why I'm getting such
strong symptoms this time. I'd like to be steroid free (eventually)

[kellyt]

Sugar, did you received a cadavar or living donor?  I wonder if that makes a difference??? 

[Sugarlump]

Cadaver transplant though I can't see why that would affect the choice of meds except can't give much pre-transplant as not much time before actual transplant?

[kellyt]

I received a live donor and I'm off steroids. 

[Chris]

I was cadaver, but that wouldn't have mattered with my transplant center because they want to avoid steroids as much as possible unless it is needed.

[skyedogrocks]

Rob is on a steroid free regime since he is a Type 1 diabetic.  He had a few rounds of Predinisone right after his transplant in the hospital, but didn't go home with any.  Right now he just takes Cellcept and Prograf.

[sgcline]

My clinic at IU Hopsital in Indianapolis is steroid free.  I had a large dose of steroids during surgery.  I was on it for 4 days while in the hospital to wean me off of it and that was the last I had.  I'm very thankful for it too. 

[Sugarlump]

Back to clinic tomorrow. Seen 3 different doctors this week , 2 of whom agree its the steroids causing my problems. Just have to convince my neph that we need to change them now. Overactive thyroid. Overactive hormones. Equals one crazy lady!!!!!