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Jane_scoobs
01-30-2012, 04:24 AM
Hi, my dog suffers from auto immune disease which was first diagnosed about a year ago. He is now 2 years old but has developed cushings from the medication that he is on - Prednisone (preds). I know that this is what has caused his cushings but without the Preds his body goes into self destruct and starts destroying itself. Have tried other non-steroidal medication such as Atopica but all with no effect, the only medication that has ever worked are the preds. I have tried reducing the dosage since hes showed signs of cushings, but as soon as I reduced it slightly his body flared up and started destroying itself again so I have had to up the dose to stop this happening. he also has hyper-thyroid which hes also on medication for. I haven't had the cushing tests done as both myself and my vet think it is unnecessary to prove it so I have no results to post. He shows all the classic signs - ie. severe hair loss, pot bellied appearance, thin skin, excess thirst/urination, he has also gained some weight although he exercises a lot and is on a very low fat diet due to food allergies. He also gets a lot of infections from the auto immune disease so is on and off antibiotics at the moment.
My question is whether anyone else has ever encountered this type of cushings before and if so whether they had any sucess at keeping it under control.
In discussions with my vet, his prognosis is poor as I am in a 'can't win' situation with his meds. I know the only way to cure the cushings is to withdraw the preds but without these his body will destroy itself from the auto immune disease.
He is now only 2 years old and is such a shame as he is a gorgeous little dog. Any ideas / inspiration would be greatly appreciated!!

Moderator's Note: I have manually approved your first post, so other members can start responding. Please check your e-mail, especially your junk or spam folders, for a note from k9cushings. which you will need to answer so we can get your membership approved.

mytil
01-30-2012, 07:00 AM
Oh Jane,

I have just a sec, but wanted to say I am so sorry for your little boy. If you do not mind, can you let us know what auto immune disease this is?

Is your vet working with a specialist on this?

Terry

Jane_scoobs
01-30-2012, 07:14 AM
Hi Terry,
Thanks. The autoimmune disease he has is Pemphigus vulgaris which is quite rare. My vet has only a very limited knowledge of this so has been speaking to and working with specialists in order to reach a diagnosis and treatment.

mytil
01-30-2012, 07:18 AM
Hi again Jane,

Just wanted to let you know your membership status is still in what is called moderation and that is why you do not see your posts right away. Look in your email box and complete the registration so your posts will appear right away - you may have to look in your spam folder.

I am not that familiar with this, but will be looking it up and I know other members will be chiming in shortly.

Are you giving the medication topically or orally?

More later....
Terry

Jane_scoobs
01-30-2012, 07:39 AM
Thanks for that. Just had a look at my emails and nothing has arrived yet!! Will keep my eye on it until it does to speed up my responses!!
All his medication is given orally.
Thanks
Jane

mytil
01-30-2012, 08:59 AM
You have been approved so no need to go back and find the email. :)

labblab
01-30-2012, 09:02 AM
Hi Terry,
Thanks. The autoimmune disease he has is Pemphigus vulgaris which is quite rare. My vet has only a very limited knowledge of this so has been speaking to and working with specialists in order to reach a diagnosis and treatment.
Hello, Jane.

I am so very sorry to hear about your dilemma. As luck would have it, my husband suffers from a very rare human variant of Pemphigus ("Benign familial pemphigus"). In his case, the variant is an inherited genetic defect that is not classified as being autoimmune as is the case with Pemphigus vulgaris. But regardless (to the puzzlement of his specialists since immunosuppression ought not to make a big different for him), steroids in one form or another also seem to be the only thing that really help his awful skin lesions during outbreaks. It must just be the anti-inflammatory benefit.

I so wish I could offer out some words of wisdom. But I am guessing that the only thing that would help in your baby's situation is if some other, nonsteroidal immunosuppressive agent would help. Has Imuran (azathioprine) been considered? I do believe that we've had a pup here who gained some relief from that drug, although of course the dog was not suffering from the same disease as your baby.

Are skin lesions the primary issue for your dog? I will tell you that my husband's dermatologist has just told him about some experimental human studies involving botox injections at the site of the eruptions. But whether this is being considered as treatment for just my husband's variant or instead for pemphigus, in general, I do not know.

Again, I am so terribly sorry for both you and your dog. From years of living with this disease -- both with my mother-in-law and also my husband -- I know how it affects quality of life :( :(. Please do remain with us and keep us updated.

Marianne

Jane_scoobs
01-30-2012, 09:49 AM
Hi Marianne,
Sorry to hear about your husband - its an awful disease to have to live with. The only consolation (& I hope its the same for your husband) is that because the body is doing it to itself he doesn't feel any pain or irritation.
I haven't heard of Imuran. Will mention it on my next visit to the vets to see if it has been considered and if not whether it would or could work for him.
Yes, the main problem for him is severe skin lesions. He has lost parts of his ear where it has eaten it away - but it all adds to his character!!! Unfortunately, since the onset of the cushings the auto immune is becoming much more difficult to control as his skin has thinned and the lesions (particularly on the underside of his belly) are getting much worse. He has also developed hyperthyroid since being on the preds but as far as I know it is only his thyroid and skin that are affected by the autoimmune up to now.
He is still happy in himself and still lively most days so I wish I could find something to slow it down or that could help the cushings side of his illnesses.
Thanks for your comments and best wishes to both you and your husband

Cyn719
01-30-2012, 02:08 PM
Hello Jane I want to welcome you to the forum and I am so sorry for the reasons you are here. As you can see members have already starting posting with you and if there is any advice they can offer or links they can pass on to you they surely will - they are wonderful and knowledgeable people. Please hang in there - I know how hard it is for you.

Sending you tons of support - strength - prayers - love and hugs xo

marie adams
01-30-2012, 02:52 PM
Hello Jane,

Welcome to the forum. Sorry you are dealing with Cushings, but so glad you found us. I can see you are already being helped and there are many more members who are very knowledgeable or will research more for you.

Hang in there; you are doing a great job for Scoobs (is that his name?). :)

Sabre's Mum
01-30-2012, 05:05 PM
Hi Jane

Our 2 1/2 year old Vizsla is in remission but was diagnosed with SRMA (Steriod Responsive Meningitis) at the age of 6 months ... after about 5 weeks of high doses of prednisone, and no stomach protectant (which the vet said no to .. although I did ask) he then was diagnosed with IMHA (Immune Mediated Hemolytic Anemia). We then added azathioprine (Imuran). Over a long duration of reducing doses we eliminated the prednisone and continued solely on the the azathioprine then we were lucky to bring him off his meds completely.

I also know of another Vizsla here in NZ who has relapsed again from IMHA but the one med they are going to continue for life is the azathioprine.

I am a member of a Yahoo group http://pets.groups.yahoo.com/group/CIMDAsupport/ and this is what the site owner wrote about Azathioprine-


Azathioprine has superior immunosuppressive activity. So it has the ability to significantly suppress the immune system enabling the prednisolone to be lowered and its side effects reduced, whilst still maintaining a good level of immunosuppression.

Obviously Flynn did not have the condition that your dog has but I have just done a quick google and some sites did suggest azathioprine for treatment. So ... it may be worth suggesting this to your vet. Just out of interest what dose of prednisone is yout dog on? And what is the dog's weight? There are other non-steroidal treatments that are used for other immune-mediated diseases (I am mainly familiar with the ones for IMHA) that may also be appropriate for Pemphigus vulgaris which your vet may look into.

All the best
Angela

Jane_scoobs
01-31-2012, 04:25 AM
Hi Angela,

That is really interesting about Azathioprine/Imuran - have not heard of it until came on this website & will defo speak to vet about it to see what they think. Its good to know that you managed to withdraw the preds completely.
He is currently on quite a high dose of preds for his weight. He is now 9.1kg (due to a kg and a half weight gain in the last 2 mths) and is on 15mg prednisone twice daily - ie 30mg a day. In addition to this he is on 0.2mg twice daily of soloxine - which is for his thyroid.
I have tried non-steroidal treatment before - Atopica and a couple of others that I would have to look the names up, non of which worked. Also tried a steroidal spray to put on his lesions rather than him having to take too much orally, but this seemed to have no effect either.
I'm definately going to look into Azathioprine so thanks for the info.
& thanks also to everyone else whos offered their support for Scoobs.

Jane_scoobs
01-31-2012, 05:35 AM
Hi everyone, just a quick note about Azathioprine / Imuran - I live in the UK and Azathioprine is not available under vetinary prescription over here, which I guess is why its never been considered as an option.....

labblab
01-31-2012, 08:37 AM
Hi again, Jane.

I'm sorry that Imuran is not easily available to you. Of course, there's no knowing in advance whether or not it would help. But it would be nice to at least have it as an option to try. Is there any mechanism there for a vet to apply for a special waiver? I only ask because a number of us here in the U.S. had to go through a fair amount of hassle in order to import trilostane (a Cushing's med) from the U.K. before it was approved and available in the U.S., and t was not generally known at the time that it was even possible. So I don't know if the reverse is true there -- if Imuran could be imported from the U.S., for example, if it is not available there for veterinary use...

Does Scoob have lesions present most all the time, or do they flare and remit? If it is more of a cyclical thing, perhaps the prednisone could be periodically reduced? That is the experience that my family members have had. Both my husband and his mom received steroid injections during times of flares, and both also were given steroid ointments to apply directly. His mom was also sometimes placed on oral pred, too. And usually, for them, the lesions then end up resolving for a time and they are/were "off" the steroids during the interim, until the next flare. And that at least gives a break from the constant onslaught from the steroids. But if Scoob's lesions never really resolve, that would be a different story.

Also, my husband has recently been given a really powerful steroid cream (much stronger than anything available over-the-counter), and we have been surprised at how well it has worked on "baby" lesions when they first erupt. It has kept them from advancing, and he hasn't needed an injection now for a couple of years. The cream is "clobetasol propionate," and is labelled as being in the "super-high" range of steroid potency. As a result, use of this cream alone can induce Cushing's, and there are specific warnings about use with children that might apply to animals, as well. But for my husband, a little bit of the cream directly applied for a few days has really reduced the magnitude of his flares significantly. Once again, just a thought to throw out there.

I will try to keep Googling info on your behalf, too. And perhaps we can locate a veterinary specialist somewhere in the world who has taken a special interest in this type of disorder. For us, that has been one of the most disheartening aspects of the whole thing. The disorder is so rare that there has been very little motivation for anybody to research treatment options very thoroughly -- it's one of those "orphan" diseases that doesn't catch much attention. But for those of us who have to live with it -- like your little Scoob -- it would be such a blessing if a rememdy could be found!

Marianne

Squirt's Mom
01-31-2012, 11:12 AM
Hi Jane,

I have been reading along but have nothing to offer other than my support and compassion - which you have in spades. So I just wanted you to know that there are many of us sitting out here reading Scoob's story and sending you all kinds of positive thoughts and love even tho we may not speak.

If I were able, I would twitch my nose like that famous TV witch and make Scoob, and Marianne's hubby, all well. You are a great mom and Scoob is so very lucky to have you on his side.

Hugs, prayers, and healing white light,
Leslie and the gang

Sabre's Mum
01-31-2012, 01:29 PM
Hi Jane

I am a little surprised that Imuran is not available in the UK. I wonder whether you can get it as another name? Ours was branded "Azamun" . I will pop over to the Yahoo group forum now and see if I can get a reply as they are an international bunch and the list owner is from the UK.

Angela

Sabre's Mum
01-31-2012, 01:40 PM
I just searched the net and found this:


Azathioprine is not available as a veterinary preparation in the UK. Your veterinary surgeon may ask you to sign a consent form so a preparation licensed for humans can be used to treat your pet.

So it would seem that you can still source it.

I will post the info from the Yahoo group when someone answers.

Angela

Jane_scoobs
01-31-2012, 02:07 PM
Hi,
Just seen your note about using a human prescription. Will do some research on the web tonight and speak to my vet again in the morning. It may or may not work but would definately be worth a try!
He does have lesions present most of the time. I have managed to control it in the past on a reduced dose of preds (compared to what hes on now) but hes never been able to come completely off them in order to give his body a break. I tried again a couple of months ago in line with my vet to reduce them by a few mg a day but he had a massive flair up within a few days which is only just starting to get back under control. I've found that the summer months he seems to be able to cope better but is more prone to skin infections (rather than the lesions....??).
As you say there is very little known about Scoobs' disease as is so rare. My vets have never come across it before which has meant they've been great at researching it and speaking to skin specialists on my behalf as they have an interest in his case but in terms of sourcing non steroidal medication that may control it (in order to reverse the cushings) we have drawn a blank. Hence my joining this forum!!!
Thanks everyone for your support & information. As far as I can see trying Imuran seems like the only option I can try at the moment.
If anyone has ever moved from predisone to Imuran in the past can you tell me whether you changed the drugs gradually. ie. withdraw the preds alongside increasing the Imuran, as I know that it can be detrimental to withdraw predisone immediately under normal circumstances.
Thanks again for your help.

labblab
01-31-2012, 02:26 PM
Jane, here's a veterinary specialist with whom your own vet might be able to consult. Dr. Olivry is located here in the U.S., but he is a past-president of the European College of Veterinary Dermatology. And his listed area of particular interest is: "Canine atopic dermatitis and autoimmune diseases (especially pemphigus)."

http://cvm.ncsu.edu/docs/personnel/olivry_thierry.html

Here's an article on pemphigus foliaceus that he recently co-authored. I'm guessing that he is also very well versed in pemphigus vulgaris, as well. He has published a number of research studies related to canine blistering diseases.

http://veterinarymedicine.dvm360.com/vetmed/article/articleDetail.jsp?id=653149

I'll bet Dr. Olivry would be willing to offer some thoughts and guidance to your vet...

Marianne

P.S. I believe this is Dr. Olivry's email address: tolivry@ncsu.edu.

Jane_scoobs
01-31-2012, 03:08 PM
Hi Marianne,
Thanks for those links. Have just read the article and apart from the look of the lesions, the 2 diseases seem very, very similar. Was interesting to read about the recommended drugs and their side effects as would imagine these would also apply to Pemphigus Vulgaris.
Have written some information down to take with me when I speak to my vet. Would love him to be able to get in touch with Dr Olivry as seems he has done a lot of research into this family of diseases. I have a lot of questions about the disease that I would love to be answered!!
Thanks again - was really useful
Jane & Scoobs

Sabre's Mum
01-31-2012, 03:17 PM
Hi Jane

I am really trying to recall our dosing regime ... funny how you go from writing everything down for a cushings dog .... then another wee gem comes along (ie Flynn's illnesses) and my meticulous recording goes out the door! We started with the azathioprine at the recommended dosage ... or close to it. We kept the azathioprine at this level and then reduced the prednisone. At some stage we did reduce the azathioprine as well but only one med reduction change at a time. Our reductions for the pred were about 25% each dosage change and on it for 3 weeks - a month. We did this over a long duration (sometimes we kept him on the dose for a couple of months due to possible stress timings things like us going on holiday)... our choice and the vet was happy with this.

Sorry I can't be of more help here remembering his dosage changes!

Angela

Jane_scoobs
01-31-2012, 03:36 PM
Thats great Angela, seems like the predisone dose is reduced normally - ie 25% at a time, but alongside the Imuran. Just wanted to make sure as I guess theres not going to be too much info on it in the UK!
Thanks, Jane

Sabre's Mum
01-31-2012, 07:47 PM
Hi Jane

I received a few replies from members on the other forum re azathioprine - you can get a script from the vet and get it filled at a pharmacy. I know I have done this in NZ for carafate as it was considerably cheaper through the chemist!

I had so much info on the use of azathioprine and pred but everything would have related to IMHA. Generally with IMHA if the numbers are OK the pred reduction can be between 25% and 50%.

All the best
Angela

Jane_scoobs
02-01-2012, 02:27 AM
Thanks - will let you know how I get on.
Jane