Anyone with Kimura's disease?

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Anyone with Kimura's disease?

Postby aggie_lou » Thu Mar 20, 2014 1:50 am

My friend's son suffers from Kimura.He has been treated with steroids. Recently we read a lot about Revia medication.It helps in many medical problem.I wonder if anyone takes this med for Kimura?
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Re: Anyone with Kimura's disease?

Postby bigbuzzard » Thu Mar 20, 2014 9:48 am

This looks very much like spam/Google-ranking-hijackery. Unless the poster comes back with a bit more information, one of the moderators will remove this.

Or is there anyone here genuinely interested in the condition or medicine mentioned?
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Re: Anyone with Kimura's disease?

Postby Tibbs » Thu Mar 20, 2014 11:56 am

I must confess I was trying to figure out why a drug with a specific application to curing substace addiciton could be a help in a disease related to imflammation of the bowel, but there you go.

Also Kimura's doesn't seem to affect the kidney either, so I'm at a total loss!
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
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Re: Anyone with Kimura's disease?

Postby aggie_lou » Thu Mar 20, 2014 11:57 am

Im sorry if it looks like spam but it's not. Im just trying to help my friends son,and we are looking for any help.
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Re: Anyone with Kimura's disease?

Postby bigbuzzard » Thu Mar 20, 2014 2:11 pm

Hi Aggie

Well you've passed the first "is it real" testby replying.
Most of the experience here is about kidney-related issues. Though it's possible someone may be able to help.
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Re: Anyone with Kimura's disease?

Postby foam » Thu Mar 27, 2014 12:22 pm

Hi Aggie, I have Kimura's disease as you probably know (as it's exactly why you posted in a kidney forum). Kimuras disease and kidney disease go hand in hand. It's often thought to be firstly a kidney disease and the vast majority with Kimuras disease have kidney disease and will at some stage have kidney failure.

Also almost all treatments for Kimuras disease are the very same drugs used to stop rejection in kidney transplants.

Bowel disease... Well the bowel has something to do with every disease but no.. In the end no one knows what causes Kimuras disease and there are currently probably no more than 100 people in the world with it so ongoing research is almost impossible due to so very few patients. I do have a slightly dodgy bowel however after 20 years running constant inflammation more than 99.9% of people ever experience for one day of their lives you can't expect all systems to be running perfectly.

Anyway a Kidney transplant forum is probably the correct place to discuss the disease as that's the major concern with it. I couldn't imagine Revia doing anything for it, the usual drugs used are high dose steroids although they don't work when you lower the dose below 20mg and usually induce a flare when you do lower the dose. This flare can induce the tumour on the left side of the neck/face to swell and often a second tumour will grow on the right side. The other drugs used are cyclosporin and tacrolimus, again neither usually give a long term remission although tacrolimus shows the most potential to do so.

The only case I know of that's effectively been cured was by using IVIg, unfortunately this has only been tried once and as yet Kimuras disease isn't approved for IVIg in any country which is making a second trail a painfully slow wait.

Its one of the most annoying diseases ever, the disfigurement, never knowing when or why it's going to flare. The fact that no one in the world knows anything about it really puts a damper on your life. The fact its practically incurable, these really take its toll on your mental state so I have a great sympathy for your friend son. The most active discussion regarding the disease is called "People with Kimura's disease" on Facebook.

There's about 7? People with Kimuras disease in the group, male and female of all races, which is the biggest gathering of patients there's ever been, you should tell you friend or their son to go there. If you are in a country with a good medical system which will allow it and hopefully pay for it I would highly recommend you find a doctor that will try the IVIg perhaps combined with the steroids or tacrolimus, especially if your friends son is young there's some kind of a chance of a cure.

I found this post during my weekly Google search for the lost out there with Kimuras disease or anyone with the symptoms. No one deserves to go through the suffering of years of diagnostics tests and being suspected of Hodgkin's disease, Leukemia and any number of other diseases which Kimura's disease impersonates. The average time it takes to reach a diagnoses is seven years and they are very stressful years indeed.

That's why I feel the need to find everyone. Anyway you would be most welcomed to discuss it on the Facebook page. I may or may not remember to return here although I've wanted to join a transplasnt forum gor a long time because I'd love to hear some feedback from those on fk-506/tacrolimus as I'm going on it myself very soon and not sure what to expect regarding side effects.
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Re: Anyone with Kimura's disease?

Postby Rik » Thu Mar 27, 2014 12:55 pm

dammit!! :?
where is the 'LIKE' button when you need one!! :roll:
welcome to the Board Foam!! 8)
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Re: Anyone with Kimura's disease?

Postby foam » Thu Mar 27, 2014 5:15 pm

Thanks Rik, seems I made a few minor late night spelling errors above. Anyway, hopefully Aggie reads it and finds something useful.

I forgot to mention that most of us with Kimuras disease have skin sores/itching although the location on the body is different for everyone (makes no sense). We've all found antihistamines help with that part of the disease and they also lower the blood eosinophil levels slightly. I used to take zyrtec and loratadine and lots of them daily but now I'm trying to give my kidneys the least possible work to do I only take loratadine and only during a flare.

Regarding Kimura's disease and the kidneys and the discovery that anti rejection drugs sometimes really knock Kimura's disease around. There was a patient in the late 90s who upon receiving a kidney transplant was given cyclosporin and suddenly his Kimuras disease went away and his remaining native kidney started functioning again. I thought that was pretty interesting. Ever since then these kind of immune suppressants have been used to treat it. Sometimes the kidney function responds very well to the steroids too but I've avoided them because I really don't like the idea of doubling up on my already considerable tumour if it goes pear shaped when tapering the dose (and it almost always does). Another thing that's been used recently is the anti IgE drug omalizumab (Xolair) but interesting in the trial of four patients the IgE level of all four went up!. Yet the eosinophil levels came down and tumours became smaller. Still it wasn't that great of a result considering the cost of the drug. More interesting for the upside down IgE effect to me. You have to pay attention to everything strange about this disease if we are ever going to find out the cause.

There's another anti IgE drug in trials which I'm almost %100 sure would be super effective for treating Kimura's disease, its called Lumiliximab. Remember that one for the future, hopefully the company developing it continue on with the trials and it goes on the market.

Still the theory that IVIg wipes out a relatively common virus that causes a massively excessive and abnormal immune reaction and hence Kimura's disease in a very small amount of people is the only theory that adds up to me regarding the basic cause of the disease.
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Re: Anyone with Kimura's disease?

Postby bigbuzzard » Thu Mar 27, 2014 6:44 pm

Hi Foam

And another welcome from me too. Thanks for posting. My apologies for not doing enough due diligence about the connection between Kimura's disease and kidneys.

I've been on Tacolimus for several years now. After my first kidney transplant I went through ciclosporin, MMF, sirolimus, & azathioprine before ending up on a mix of prednisolone and tacrolimus. I didn't notice any particular side effects from the Tacro - certainly not compared to some of the others. However, it can have long term toxic effects on the kidney (certainly transplanted, I assume also on natives). It seems that for most people these take many years to have a big effect. HOwever, I was unlucky, and was told that the Tacrolimus toxicity had contributed to scarring on my 1st transplant which caused its function to decline so that I went back on dialysis after nearly 5 years. I've since had a second transplant, and am once again on Tacrolimus (3mg per day). So far it doesn't seem to be causing any problems for the transplant, and I'm not noticing any side effects.

Having said all this, over the past few years, I went through a period of extreme malabsorption of food, causing me to lose 30kg; for a while I was diagnosed as haveing Coeliac disease. The gastro people never got to the bottom of it after many tests and investigations. I ended up reckoning that it was probably all down to my gut flora being messed up by one or more of the antibiotics I was on at various times, though perhaps there was something else going on. Anyway, I avoided gluten for a while, but didn't notice making much difference. That's all in the past, and all those 30kg reappeared, and I'm back to being my overweight self. I don't know whether any of this is in any way relevant. But in all these things it seems like there are all sorts of potential connections that nobody is able to put together. You mention Lumiliximab - I assume that's related to Rituximab in some way which is being used as another antirejection drug these days.
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Re: Anyone with Kimura's disease?

Postby foam » Fri Mar 28, 2014 1:38 am

Hi Buzzad thanks and that's no problem. There's some kind of relationship of disease going on here. I also have malabsorption and highly suspected of having celiac disease all my life without knowing so.

Although no one can test for it now as I went off Gluten not long after I developed the tumour which then defines you as having Kimuras disease... However if you want to get down to it I already had the eosinophilia, IgE and sores more than a decade previously. Going off gluten did resolve most of my gut troubles but not all of them. I too seem to have messed up flora which I highly suspect to be a large part of the driving force behind the inflammation which is damaging kidneys. I've had bone marrow biopsies to rule out various things and test for gene errors and had genetic testing celiac disease (which was positive). Also had just about every diagnostic test known to man to look for auto immune markers, parasites, mast cell disease.. Everything points to it being a reactive immune response, the strange thing is there's no apparent cause.

The dosage of tacrolimus we are talking about is 2mg per day for six months followed by a 1mg taper for two months. Hopefully that will be enough to level everything out to the point where it'll be controlled. I realise it's kidney damaging but it seems less so than cyclosporin and much more potent.?. I'm juggling a two edged sword but don't have many options left having trialed and exhaust everything else other than IVIg which isn't available to me here in Australia.

On the alternative side of things I've noticed my levels are better during summer and sunlight seems to help a great deal I knocking down the inflammation but I believe a monumental change/fixing in gut flora would benefit myself more than anything else.

I've tried probiotics without much effect and reading further about each species a lot of them produce histamine which seems a problem as far as the flares with Kimura's disease goes. The bacteria present in infants and young kids seems the best, I'm lucky to have a young son who's healthy although may not have the best flora himself because he was induced plus born under antibiotics..... In any case fecal transplants might sound gross yet they are proving to be about the strongest medicine there is. Planing on trying this very soon. I think the more you read the more you realise everything to do with a humans health all comes down to which species of bacteria and fungi inhabit his gut. I'm sure our liberal use of anti biotics this last century has caused most of our ever increasing health problems.

Rituximab has been mentioned by my specialist but I think its the very strong anti fungal effect of cyclosporin and tacrolimus which give them a lot of their special powers (other than their immunosuppressive powers).
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Re: Anyone with Kimura's disease?

Postby bigbuzzard » Fri Mar 28, 2014 12:18 pm

Hi foam

I've no idea of the relative potencies of ciclosporin and Tacrolimus - just that Tacro is newer, and therefore, I guess more targeted. (I'm neither a doctor nor a immunologist - just an interested patient, with a vaguely scientific background).

When I was going through my gut problems, my (rather open-minded) nephrologist prescribed me a course of VSL #3. This claims to be the world's most concentrated probiotic (NB - anyone can buy t off-prescription as well). I didn't take that many doses of it, but my gut starting to sort itself out seemed to coincide with the few doses that I did take. Faecal transplants are fascinating! I read about them a few years ago in New Scientist as the only cure for C-Diff and perhaps Cholera (though I may be remembering that wrong). I see they're in the news regularly now. I think I read recently about them being made available in tablet form. I suspect you're right about the mass use of antibiotics as responsible for many unwelcome things.

Good luck.

PS - I see faecal transplants have been passed as safe by NICE in the UK in the last few days - http://www.bbc.co.uk/news/health-26753116
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Re: Anyone with Kimura's disease?

Postby foam » Sat Apr 05, 2014 12:00 pm

Thanks buzzard, unfortunately we seem to have lost Aggie to time but this thread will help someone else in the future. I'm aware of vsl#3 and even attempted to buy some awhile ago, however at the time it was out of production for a few weeks for some reason. Since then I've learnt more about these things and while its a very good probiotic some bacteria in it I'd rather not take. In the end a full balanced population with hundreds if not thousands of species from a human is a far far better way to go.

I'm signed up with a clinical trial database here in Australia not that any drug company would ever fund a trial for a disease 100 people in the world have. But they send me newsletters and this months was all about faecal transplant under the title "curing the incurable". Its a very exciting thing, so potent and I'd assume totally safe. In the article it mentioned some people being disgusted by the idea. The doctor responded with something along the lines that no one who's going to be helped by this has a problem with it. People who are sick have a different perspective on things :).

There's plenty of talk of it curing autoimmune even conditions such as MS. When you consider practically the entire immune system is controlled by what happens in the gut then why not.

I was avoiding heavy drugs myself and just doing big doses of antihistamines but after not doing any antihistamines for a couple of months I've realised I have a quite big problem (don't feel well at all at full levels of inflammation) so I think now is the right point to try and knock this out or at least lower it down a bit and put a lid on the fire so to speak. So I'll do the tacrolimus, I had a choice of a few drugs I guess but in the end that one has the best ratio of potentional effectiveness versus side effects. I think I'll do a steroid also at the same time just in case my kidneys respond well to that. Might offset the tacrolimus a bit.
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Re: Anyone with Kimura's disease?

Postby foam » Thu Jul 10, 2014 8:48 pm

Hey guys I thought I'd update this. My Kidney function dropped through the early part of this year from a long standing egfr of 80 to 70 to 60 to 50. In just a few months so I got off the mast cell stabilisers and anti histamines. I took DAO enzyme instead and it actually came up to 90+ which it had never been before at least not in the 8 years I've been tested.

In anycase I decided to start some serious treatment and I'm on 50mg prednisone and 1mg tacrolimus now. The Kimuras disease is practically gone already and I've only been taking them less that a week. Not sure what dosages I'll need to hold it at bay but no side effects yet, very promising so far.
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Re: Anyone with Kimura's disease?

Postby bigbuzzard » Thu Jul 10, 2014 10:12 pm

Wow - that sounds like a heavy dose of steroids to be on long term, though I may be wrong. I'm on 5mg per day, which I think is a standard 'low' maintenance dose. Though there have been times where I've had much larger doses for a short term.

Great to hear that things are looking positive.
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Re: Anyone with Kimura's disease?

Postby foam » Fri Jul 11, 2014 6:14 am

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.
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