Anyone with Kimura's disease?

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Re: Anyone with Kimura's disease?

Postby bigbuzzard » Fri Jul 11, 2014 8:16 am

That all sounds very similar to the post-transplant drug regime, which does start of with antivirals and something like bactrim. They tend to stop after a month or three, when we're left with something like steroid+one or two others (eg tacrolimus, ciclosporin), or sometimes no steroids.
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Re: Anyone with Kimura's disease?

Postby foam » Sat Jul 12, 2014 2:36 pm

Thanks bigbuzzard. Hopefully the 8 months on tacrolimus puts me into some kind of lasting remission. If not well I guess I'll be staying on it. I did quite a bit of reading on cyclosporin vs tacrolimus regarding kidney toxicity and it seems quite clear tacrolimus is the better option if you tolerate it. The problem for me was that I have to buy the tacrolimus myself as rare diseases aren't covered by our medical system but I've been offered it at cost price for now. The company that makes cyclosporin were going to give that to me for free but because tacrolimus seemed like it was more effective and safer I went for that option. Seems we made the right decision because its proving very effective. I'll have to link some before and after pictures tomorrow, you will be amazed..
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Re: Anyone with Kimura's disease?

Postby foam » Mon Jul 21, 2014 2:22 pm

Went to my hematologist today for my first post starting tacrolimus checkup. Blood results were very improved, kidneys holding steady. Eosinophil levels were normal for the first time in at least 20 years. We upped the dosage to 1mg twice a day to see if that makes things better even faster. Still on 25mg prednisone. I'm tolerating that really well so no hurry to taper down just yet. In a few months I'll get down to 12mg. Kind of a live running experiment here because I'm just the second person being treated for this with tacrolimus.
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Re: Anyone with Kimura's disease?

Postby foam » Tue Feb 17, 2015 8:26 am

I just came to update this.
Have been on tacrolimus for eight months, improved my diet a bit more and I'm in remission from Kimuras disease.
eGFR is currently 90 (was down to 50 a year ago). I couldn't complain about the tacrolimus, its been a wonder drug for me. I'm on 4mg of prednisone still (very slow taper). The tacrolimus dose is 1mg twice a day.
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Re: Anyone with Kimura's disease?

Postby gnarledcrayon » Wed Apr 27, 2016 9:46 am

foam wrote:Oh I'm only on 50mg the first week, then 37, 25, the following two weeks, I'm just finishing the 50 week tomorrow.. I'll stay on 12.5 then for four months perhaps tapering after that. The initial high dose is just to try and smash things into order while the tacrolimus levels come up. Do all you guys take antivirals and Bactrim all the time too?. I was given these as part of the deal.


I do.

On a daily basis, I'm currently taking: Prednisolone (15 mg), Ciclophosphamide (100 mg), Bactrim (i don't know the dosis, I get them from the hospital's pharmacy), calcium (400mg), d-vitamin (54 micrograms), pantoprazole (40 mg), enalapril (10 mg), furosemide (40 mg), and acetylsalicylic acid (75 mg).
On top of that, I take 70mg of Alendronic acid per week.
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Re: Anyone with Kimura's disease?

Postby foam » Wed May 04, 2016 1:02 pm

gnarledcrayon wrote:
foam wrote:Oh I'm only on 50mg the first week, then 37, 25, the following two weeks, I'm just finishing the 50 week tomorrow.. I'll stay on 12.5 then for four months perhaps tapering after that. The initial high dose is just to try and smash things into order while the tacrolimus levels come up. Do all you guys take antivirals and Bactrim all the time too?. I was given these as part of the deal.


I do.

On a daily basis, I'm currently taking: Prednisolone (15 mg), Ciclophosphamide (100 mg), Bactrim (i don't know the dosis, I get them from the hospital's pharmacy), calcium (400mg), d-vitamin (54 micrograms), pantoprazole (40 mg), enalapril (10 mg), furosemide (40 mg), and acetylsalicylic acid (75 mg).
On top of that, I take 70mg of Alendronic acid per week.


My tumour came back at 5mg Prednisone. We got rid of the Tacrolimus and went with just 10mg Prednisone with the idea that I'll need drug support maybe permanently at that for now is the safest option.
I also had to get mine at the hospital.
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