Mucocutaneous Lupus - Any Advice Please?

[DocsDoctor]

Ken was diagnosed with this last week by a specialist dermatologist vet, following a skin biopsy. He started a course of prednisolone on Friday and I'm happy to report that it is working well - already his toes, eyes and nose have dried out considerably and he is clearly feeling much happier and more comfortable. We go back to our own vet's next Friday to review progress and talk about longer-term treatment/ maintenance options. Meanwhile I thought maybe some of you might have had experience of this condition and would have good advice to give on what had worked for your dogs. I would be most grateful if so! The dermatologist did note that it's something she seems to be seeing increasingly often in greyhounds and whippets here in the UK.

 

Background: I adopted Ken in June 2015. He'd come into the greyhound rescue a couple of months earlier with raw, bleeding nailbeds. This was thought to be just a bad infection, perhaps from being left sitting around on wet bedding - NB he also has distinctly flat feet, probably more vulnerable to injuries and other issues than the normal greyhound 'cat' foot - and it's always the back right foot (the one that gets the hardest work on the track, when cornering) that suffers most. The problem had been cleared up with antibiotics by the time I adopted him. However it came back in March 2016, requiring another course of antibiotics. Vet and I agreed that the shape of his feet made them vulnerable - he advised me to check them daily and keep them clean with Hibiscrub baths as required. Again they were fine for a while, but this spring/summer began to deteriorate again - iodine baths (as recommended by another vet) helped for a while, but the feet didn't clear up and he developed a sore on his nose as well.

 

We were referred to the dermatologist, who noted that the problem was just beginning to affect the inner corner of his eyelids as well - something I hadn't noticed. She put him on antibiotics to clear up any secondary infections and then did the skin biopsy on his feet and nose, resulting in the diagnosis of mucocutaneous lupus, i.e. an immune issue involving the skin and mucous membrane.

 

Hopefully when we go back to the vet on Friday we can begin reducing the dose of prednisolone, and start discussing longer-term options. I would as I say be most grateful if any of you have any input on that. Medications mentioned by the specialist at this point were cyclosporine and azathioprine. However she did warn me that both were very expensive, though probably safer than giving a steroid like Prednisolone long-term. But with any of them he will need regular blood-tests, etc, to monitor his condition. (He had one a month ago and all was good.)

 

It's all a bit daunting I must say - though a relief to see him already feeling so much better. So I would be most grateful for all your thoughts on medication, as I say - also, I was also wondering if there were any supplements that would prove helpful? And I have seen a few recommendations to switch to a grain-free diet - is there actually any science to this, or is it just part of the "all grain is evil" fad?

 

Many thanks!

 

Clare and Ken

[greysmom]

I don't have much advice, but just wanted to add some encouragement! Autoimmune diseases are scary to deal with, but it *can* be done successfully for long term management!

 

I don't think I've heard of long term steroid use with this, only increased omega 3s and vitamin E. I think the "grain free" thing is something that comes up any time there's an issue like this. If you can talk about it with your dermatologist, s/he might have some insight as to whether a grain intolerance usually accompanies other symptoms. A high quality, maybe even presciption, diet is a must.

 

Azathioprine and cyclosporine are immune suppressants used in human medicine for autoimmune diseases.

 

If you're on Facebook I know there are Lupus groups that deal specifically with this disease and are really helpful. You can search around for the exact pages, or ask on the FB Greytalk group page. If you're not a FB GT member, let me know and I'll ask for you if you don't want to join).

Edited August 27, 2017 by greysmom

[macoduck]

There is also a new-ish Greytalk Health and Medical page on Facebook.

[DocsDoctor]

Thank you both very much for that! Greysmom I am a Facebook refusenik so if you can ask on our behalves that would be most helpful - thank you very much for offering

 

We'll see our local vet on Friday, it's unfortunate that she's new to us (our last excellent vet alas recently moved on) but she seems competent and helpful so armed with this information we can begin discussing diet and supplements as well as medications. I think he will need to be 'tapered off' the prednisolone before he starts on anything else, then we will be going back to the dermatologist next month or in October, depending on progress.

 

He gets omega 3 fish oil and sardines already but the vitamin E sounds a good idea and for sure we can look at changing his food if that would help. Hopefully once we get him back on an even keel we can find a way forward that works for us - I talked about it last night to a friend who has an autoimmune condition herself (rheumatoid arthritis) and she was very encouraging about it being a question of finding the right regime that works most of the time, and not getting too het up about the occasional flareup. The dermatologist did say that there were quite a number of different options to explore so we will just have to be patient and openminded.

 

If anyone else can chime in with advice meanwhile that would be great, and I will provide updates here anyway as appropriate in case they are helpful for others.

[NeylasMom]

Here's what I'm going to say in consideration of a grain free diet with the caveat that I know nothing about the disease you are dealing with. There does seem to be very strong evidence for a gut connection to many issues in people, including autoimmune disorders. Inappropriate diets seem to cause inflammation and inappropriate flora in the gut, which can cause stomach issues or larger systemic problems. It makes sense to me that the same would be true of our dogs and that feeding a species appropriate diet would be likely to help a dog suffering with an autoimmune disease. I don't really think grain free kibble is exactly that (they typically still have a lot of starch, usually via potato instead), but it's a step in the right direction. An even better option would be a home cooked diet, or you might even consider raw. At the very least, add a probiotic and a digestive enzyme to his meals.

[DocsDoctor]

Thank you, Neylasmom. We're just actually coming to the end of a bag of kibble so we'll try a grain-free option from the same, usually reliable British manufacturer instead. As you say that contains potato and sweet potato - some kind of starch I believe is necessary to make the kibble stick together. I'm not ruling out raw/homecooked but whenever I have researched it, it works out considerably more expensive - and my freezer space in a small townhouse is very limited. Anyway we can see how a grainfree kibble suits him before we see the dermatologist again. Diet is not something she has mentioned to date but I think we should certainly discuss it.

[greysmom]

Clare, I was wrong about the FB group. There are a couple for SLO, which is related, but nothing for lupus. Sorry...

[Trekkysmom7]

I adopted my boy Cooper in December 2013 knowing he had Lupus. He was only on some supplements initially at his adoption group. I took him to my vet and we started him on a regimen of Niacin 500 mg twice daily and Tetracycline 500 mg twice daily. He has been doing well. He started to lose his nails more frequently so we added salmon oil 2 squirts twice daily and he has stabilized. Cooper's lupus affects his nose which is cracked and peeling and his toenails. He now loses about 1 toenail every few months on this medication regimen. The toenail will just crack, bleed, and fall off. These medications are not expensive. They have kept him comfortable for 4 years. I do feed him a grain free diet. I feed 4Health grain free Beef and Potato.

Kim and greyhounds Kaylee, Rico, Cooper, Petey and galgos Boogie and Livvie

 

[DocsDoctor]

Thank you greysmom and trekkysmom7!

[tbhounds]

Thank you greysmom and trekkysmom7!

Just want to point out that I'm sure Trekkysmom meant to say niacinamide not niacin ;-)

[Trekkysmom7]

Just want to point out that I'm sure Trekkysmom meant to say niacinamide not niacin ;-)

 

No. I meant to say Niacin (Vitamin B3). Most readily available supplements at pharmacies, grocery stores, and Targets are labeled as Niacin. Niacin is what people use to help lower their triglyceride level.

 

 

Kim and greyhounds Kaylee, Rico, Cooper, Petey and galgos Boogie and Livvie

Edited August 31, 2017 by Trekkysmom7

[tbhounds]

 

No. I meant to say Niacin (Vitamin B3). Most readily available supplements at pharmacies, grocery stores, and Targets are labeled as Niacin. Niacin is what people use to help lower their triglyceride level.

 

 

Kim and greyhounds Kaylee, Rico, Cooper, Petey and galgos Boogie and Livvie

I don't mean to be disrespectful but...

http://veterinarycalendar.dvm360.com/tetracyclines-and-niacinamide-canine-dermatology-proceedings

[DocsDoctor]

Quick update: our local vet was very pleased with the improvement with Ken's feet when we went in today. As per the dermatologist's notes we are going to start him on a 2-week course of cyclosporin now, while beginning to taper off the steroids. Meanwhile local vet removed the remaining stitches from the skin biopsy (cue Greyhound Scream of Death!) and took photos to email to the dermatologist. She will also ask her for her thoughts on Vitamin D and diet. The tetracycline/ niacinamide combo is one of the long term treatments mentioned in the dermatologist's notes, but obviously there are issues with giving an antibiotic (the tetracycline) longterm. Looks like there are a number of different options ahead and it will be a question of finding the one that works best for Ken. Meanwhile I tried him with a little of the new grain-free food yesterday and he seemed enthusiastic - mind you he loves all food, I have never yet known him turn anything down!

[EllenEveBaz]

One of my dogs, dear Scout, had SLO, not lupus, and I don't know how the regimens would compare, although many of the meds/supplements listed above are the same. But just to give some general cheerleading -- as you posted above, after the initial shock-and-awe loading doses, we found what seemed to work best for Scout and it became a manageable and almost minor issue.

[DofSweetPotatos]

Yardman had lupus the tetracycline/niacinimide combo worked wonders. Eventually we stayed with the niaciniminde and pulsed the tetracycline.

Also eliminating chemical preservatives in his food seemed to help as well. We added CoQ10 to boost his healthy immune system.

Too many of the good "skin oriented" vitamins and supplements actually set him into overdrive and made symptoms worse.