Steroid free therapy

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Soobee
Posts: 51
Joined: Fri May 23, 2014 1:09 pm

Steroid free therapy

Post by Soobee »

Hi guys,

I have been doing some reading and confused myself (as usual!).

After discussing what level of match to accept from the paired donation scheme yesterday I was thinking about the levels of immune suppression I would need if I took a match less than a 111 (which is their current aim).

There seems to be a lot of development in steroid free therapy (although I only found 4 posts in the archives here - all from about 2004)
am I right in thinking that Prograf and Cellcept are not steroids (but still have similar side effects?)

Are many people steroid free? What do you take?

As I have not had a transplant yet I'm not familiar with the immune suppressing drugs yet and there seem to be a lot! :D

Many thanks, S
Tibbs
Posts: 1081
Joined: Wed Nov 30, 2011 11:59 am

Re: Steroid free therapy

Post by Tibbs »

Hammersmith uses a steroid free protocol, after the initial hospital stay.

They may reintroduce it (as they did with me) if you have a rejection episode.

Tacro and MMF are not steroid based, and have their own side effect issues.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
Soobee
Posts: 51
Joined: Fri May 23, 2014 1:09 pm

Re: Steroid free therapy

Post by Soobee »

Thanks Tibbs, I don't suppose I will have much choice but it's good to know what to expect.....

I have dialysis clinic next week so I can ask the consultant what I will be given when the time eventually comes.
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: Steroid free therapy

Post by SKM23435 »

13 weeks post transplant. I currently take tacrolimus, MMF and prednisolone. I'm currently awaiting the results of a protocol biopsy of my new kidney. My kidney was a perfect match but I had antibodies so am classed as a high immunological risk. I'm told that if the biopsy is satisfactory I will stop the MMF. If I didn't have the antibodies I would also have stopped the prednisolone. Having said that the prednisolone is only 5mg daily, which according to my GP is only a small dose and doesn't usually cause any problems.

I didn't realise how grotty I felt until I felt so much better post transplant.
Good Luck with your wait and search for a kidney.

Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Steroid free therapy

Post by rheaybou »

Sheffield like the 5mg maintainance dose of Prednisolone for the life of the TX. It is something that I have accepted and apart from a little weight gainit has not had any side effect on me yet.

If your transplant unit runs steroid free then go for it, if not the it's better than any side effect of the dialysis treatment thats for sure
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
Soobee
Posts: 51
Joined: Fri May 23, 2014 1:09 pm

Re: Steroid free therapy

Post by Soobee »

I think you might be right about feeling bette Sue, I'm not sure I can remember what I felt like before dialysis, I think I feel ok at the moment (except being tired and rumbling pains, oh and nausea, maybe not quite so ok then :D ).

rheaybo, which side effects of dialysis do you mean, physical damage to my body or symptoms like tiredness etc? I think I'm going to have to make a decision about accepting a lower match or staying on dialysis for a while longer (a year so far and 6 runs at the paired exchange) so would be really interested on thoughts about accepting a poor match sooner (and all that comes with it - e.g. higher levels of post transplant drugs etc.....)
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Steroid free therapy

Post by rheaybou »

Soobee wrote: rheaybo, which side effects of dialysis do you mean, physical damage to my body or symptoms like tiredness etc? I think I'm going to have to make a decision about accepting a lower match or staying on dialysis for a while longer (a year so far and 6 runs at the paired exchange) so would be really interested on thoughts about accepting a poor match sooner (and all that comes with it - e.g. higher levels of post transplant drugs etc.....)
I would accept any sort of match on the paired exchange list, a living donor organ has a better graft survival rate in the early years compared to a deceased organ. How long however any transplant lasts is a lottery, could be a week or a lifetime. The level of medication in my understanding is not based on the match and more how you absorb/metabolise the medication. The sooner you can come off dialysis the better prospects are for long term health.

Side effects of the TX medication can vary from person to person. I have night sweats, terror dreams, insomnia.(not all the time) Loss of concentration and a forgetful mind are something that could be put against the transplant and also what I have been through on my personal journey.

The decision is a very personal one, but you could hold out for the perfect match and never get what you wish for.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
Dixie1
Posts: 283
Joined: Mon Apr 15, 2013 4:19 pm

Re: Steroid free therapy

Post by Dixie1 »

Hi Soobee

I agree with rheaybou - if you have a chance at a living donor transplant, grab it. I don't really know what your '111' match means and can only talk from my personal experience. My husband was hoping to donate to me and during the workup we were told that we only matched on 2 of 6, which wasn't great but nevertheless not a problem. Apparently, even if we didn't match on any level, a kidney from a living donor that wasn't such a good match would always be favourable to a better match from a cadaveric donor. Also, I specifically asked the question about the level of suppression etc after transplant and whether that fact we weren't a great match would effect how much suppression I needed and was told it was never as straight forward as that. Everyone is totally individual and apparently you can get good matches that end up requiring a higher level of drugs than someone who has had a kidney from a less good match. So, in my opinion, you should go for it! Good luck.
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: Steroid free therapy

Post by SKM23435 »

On the subject of steroid free therapy - my recent biopsy showed no evidence of rejection. I am to continue on the tacrolimus and was given the choice of stopping either the prednisolone or the MMF. I gather NICE is due to publish new guidance on the subject over the next year.
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
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