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Anyone Dealing With Idiopathic Encephalitis, Possible Long Term Steroi


Guest Stargirl
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Guest Stargirl

I've posted on this before I knew what my female grey had, and after a spinal tap she was diagnosed with idiopathic encephalitis. Pretty much

the neurologist can't say how she got it and the titers showed it wasn't bacterial, fungal or any of the other diagnosable forms. Thus, there is a 33% chance that meds will cure it, 33% she will need to manage it with steroids, or 33% she will just get worse and it can't be managed. I haven't seen much about it on this forum, but I also wonder if it goes undiagnosed. I just met another grey owner who's dog died after having unexplained neurological issues...don't think they did a spinal tap. A dog in my neighborhood (non-grey) had the exact same symptoms as mine...fever, lethargy, stiffness...but with antibiotics and prednisone she got over it and it didn't come back. My regular vet first treated mine with antibiotics and prednisone, but within 2 weeks after finishing meds, the symptoms reappeared. Different vet/same clinic prescribed prednisone again (6 week regimen). 2 weeks after finishing prednisone, the symptoms begin again, so that is when the neurologist did the spinal tap. He prescribed another heavier dose of antibiotics even though they generally do nothing for the idiopathic type (he didn't have test results yet and didn't want to wait) and a longer prednisone/prednisolone regimen to see what happens. She is currently still take the prednisolone, down to 5mg/day from 15mg/day. My gut tells me she will need the steroids to control it, which isn't great for long term use I don't think. Still, just wondering if anyone else has had this diagnosis and had to use steroids for a loooong time.

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Guest hlpnhounds

I am currently fostering a hound that has been under the care of a neurologist since August '09. She has been diagnosed with an autoimmune menigioencephalitis and has been on various doses of pred since her initial diagnosis and through a recent set-back in her recovery. She is currently on 25mg pred twice a day along with GI protectants.

This is the dose she started on in August after her first MRI showed inflammation so great that doing a CSF tap at that time may have been a deadly move. We opted instead to treat with high doses of pred and wean slowly---a 30 day period between each step.

We had finally gotten down to a point in her dosing that we were going to be able to plan her spay and get her on her way to her forever home this past January----well that was the plan, anyway.

Then in December, just before Christmas, she did't want to go outside to play, would rather just lay on one of the many dog beds, wanting to be left alone most of the time. She was also not eating very well for a day or two. I took her in for a recheck and we found that her neck pain had returned. We decided it was time to perform her CSF tap at that time to get a definitive diagnosis for her. Results came back as the autoimmune meningioencephalitis and she was placed back on the high doses of pred again bt for a longer period before we begin to wean again. We are at our 60 day mark now at that dose. She goes for a recheck tomorrow.

 

Because her problem is her own body fighting itself and not a virus or bacteria, it could very well be that she will have to remain on some dose of pred for the rest of her life. Hopefully, her recheck will bring good news. There may be other meds we can try---some chemo meds have been used in cases like this in the past to some success.

In the meantime, she is thankfully under the financial care of Greyhounds Only---you can see her story on their Hounds in Need page. I happen to work as an ER/ICU tech at the referral/specialty hospital that is handling her care. She is in good hands and has a fabulous team of DVM's looking after her and a generous group of donors helping to offset the cost of all of her testing---so far, 2 MRI's, one CSF tap, a rhinoscopy, radiographs, ultrasound, bloodwork, etc etc etc and counting.

 

I'm hoping the road to recovery is quicker for your hound. I'm just happy that Sis is otherwise a happy, well-adjusted hound that is able to enjoy home life with my own 2 hounds. She is a very special little girl.

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Guest Stargirl

Wow, 25mg of pred/twice a day. Man, I know you are taking her out to pee 50 times a day with that dosage. That is the worst side effect of that medicine. Very exhausting. It sounds like our two are in a similar boat. I opted not to do an MRI because it would cost $2500 and I got the impression it would not have been very definitive, whereas the CSF tap would give actual test results on infection or not. Also, we had dealt with this mystery illness 2 times before using prednisone and it responded to it, so the doctor had a pretty good idea before doing the test what the result might be. Did your dog get a fever too? Still, the first clues are the dog not being excited about food and wanting to stay in bed. Poor doggies, I just hope they don't endure a lot of pain before we start noticing they aren't right.

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Did the neurologist mention GME (granulomatous meningoencephalitis)? This is an inflammatory brain disease. Generally, lumbar puncture will identify granuloma's (especially if confirmed by MRI, which I know is way too expensive).

 

This disease can often be controlled using immunosupressants and immunomodulators (even chemotherapy), in an attempt to wean the dogs off steroids, or at least decrease the dose as much as possible.

 

There is a great GME board on Yahoo new GMEdog website that is very helpful. There is a neurologist in Boston, Dr. Sisson, who is very well-versed on this. If you google GME you should be able to get more info.

 

You may also want to PM 3greys2cats, as Roberta's Sarah is a GME survivor.

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Guest Stargirl

I did ask if he thought it was GME, and he stated he did not as that was not supposed to be responsive to steroids, and what she has apparently is responding to steroids. At least I am 90% sure that is the reason he gave, I made sure to ask about GME, and he discounted it.

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I did ask if he thought it was GME, and he stated he did not as that was not supposed to be responsive to steroids, and what she has apparently is responding to steroids. At least I am 90% sure that is the reason he gave, I made sure to ask about GME, and he discounted it.

 

GME, given that it's an inflammatory disease, usually does respond to steroids, depending upon the type of GME that is present. It responds (to a variable degree) to drugs which will suppress the immune system -- including steroids.

 

Encephalitis can also be due to infection, but I'm sure your vet ruled this out by testing the fluid obtained from his lumbar puncture.

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Different diagnosis, but Beau has been on prednesone for a while. Over a year. He started out on 50 mg of pred with 50 mg of imuran. When we got his IBD under control and he started to regain the weight he had lost, we lowered the pred. For several months, we would take him out every 3 hours round the clock (set an alarm for 3AM) and we would feed him as well. He needed to gain, the pred made him ravenous so it worked out. I had someone (my son) come by the house during the day to let him out to pee and feed him. That went on for 6 months.

 

Holding at between 7.5 mg and 10 mg (which is low for a gh and not the therapeutic dose) he seemed kinda flat. We weren't sure if it were the pred, imuran or just Beau.

 

Because of the pred, he is suseptable to skin issues, he has lost a lot of hair. He used to have a thick lush coat. Now it is very thin. But he is alive and doing OK. How can I complain about hair!!!

 

With greyt reluctance we switched from pred to budesonide (Fewer side affects) and we are at about 2 weeks now. I am not 100% sure how it's working right now, but he doesn't seem to be as flat so we will see.

 

There are some other dogs on GT that have been on pred for a while. Hopefully, they will chime in.

Edited by RobinM

 

 

ROBIN ~ Mom to: Beau Think It Aint, Chloe JC Allthewayhome, Teddy ICU Drunk Sailor, Elsie N Fracine , Ollie RG's Travertine, Ponch A's Jupiter~ Yoshi, Zoobie & Belle, the kitties.

Waiting at the bridge Angel Polli Bohemian Ocean , Rocky, Blue,Sasha & Zoobie & Bobbi

Greyhound Angels Adoption (GAA) The Lexus Project

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Guest abbysmom

My Abby was diagnosed with immune-mediated hepatitis, and spent 4 years on Pred. Her dosages varried, but for most of that time she was maintained on 10 mgs twice a day. The effects she had were generally very manageable. It did affect her appetite--she was always hungry, and she did develop pica and dug in the yard to eat the dirt. But, by and large, she was a normal, happy dog on that dosage of pred. She was more prone to infections--especially when she scraped her feet or toes, so we did find ourselves doing courses of antibiotics for infected toes. We did have some issues fighting one particuar wound (eventually the internist found the magic combination of antibiotics, thank heaven). The pred helped keep her alive (and happy/active)from age 10 to age 14 1/2, so I'm glad we had it.

 

I wish you best of luck with your pup.

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I did ask if he thought it was GME, and he stated he did not as that was not supposed to be responsive to steroids, and what she has apparently is responding to steroids. At least I am 90% sure that is the reason he gave, I made sure to ask about GME, and he discounted it.

 

GME, given that it's an inflammatory disease, usually does respond to steroids, depending upon the type of GME that is present. It responds (to a variable degree) to drugs which will suppress the immune system -- including steroids.

 

Encephalitis can also be due to infection, but I'm sure your vet ruled this out by testing the fluid obtained from his lumbar puncture.

 

 

I agree w/Jordan here, when Sara was diagnosed in 3/07 w/GME, her neurologist did an MRI and the spinal on the same day. The MRI showed several areas of lesions/inflammation and it was determined to "most likely" be Multifocal GME. The results of the spinal indicated high white cell count. She started her on prednisone, 2 antibiotics, pepcid and carafate. Three days later she had a cluster of seizures and was not coming out of it so her neurologist admitted her back into ICU and injected her 1st round of chemo drugs(Cytarabine). For Sara's case of GME(inflammatory brain disease)she needed the prednisone & chemo drugs & phenabarb & the antibiotics were discontinued after 2 weeks. She stayed on prednisone (high dose) and chemo injections for 10 months. She has been off the meds entirely since 1/08 and has not had any relapse of her condition. She literally had to be carried, could not walk w/out wobbling and falling over, she would just lay in her crate when 1st diagnosed. I have only heard of a few Greyhounds that have survived this/ most have had relapses and had to continue w/prednisone. Prednisone is used to supress the immune system and reduce imflammation but sometimes another med can be added such as a chemo drug.

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Roberta & Michael with Furkids- Flower (Shasta Flowers 6/7/06) & Rascal the kitty - Missing our sweet angels - Max(M's Mad Max) 10/12/02 - 12/3/15, Sara (Sara Raves 6/30/01 - 4/13/12) Queenie & Pandora the kitties - gone but never forgotten

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Guest Stargirl

Wow, thanks for some insight, it does help explain some things that have been happening. Before the prednisone my dog was not interested in

poop eating, but now she can find every spot she has pooped at even if it is under 5 inches of snow. I do pick them up, but there must still be an odor, or small remnants and she is borderline obsessive about poop hunting. Her walks consist of stopping at every known past poop spot to see if there is anything left to munch on. I think it has tapered off a bit with the decreased dosage, but in her mind, her poop=a delightful snack. Plus, she has little ouchies on her 'knees' and they are taking forever to heal up. I hadn't realized the medicine was probably causing some of these issues. And RobinM, I think I get what you mean about flat. I just don't feel that my dog is right, I feel like I am waiting for the other shoe to drop sometimes. Well, she seems happy, gained the weight she lost, so I won't complain. Least not too much. No seizures either.

 

And yes, her spinal fluid was tested for all the known causes of encephalitis, all negative, thus vet called it idiopathic. Vet said encephalitis is still a "mysterious disease". Another 6 weeks of prednisolone to go and then we see what happens. Time to go scratch Starry's head and see what she is up to...or where she is napping most likely.

Edited by Stargirl
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Guest GryffinSong

Different diagnosis, but I had a borzoi on longterm steroids for an autoimmune disorder. It was not prednisone, but I can't remember what it was. My vet at the time liked whatever-it-was much more than pred. Anyway, my borzoi was on it for YEARS, and finally went into remission. She lived until the ripe old age of 16+ (could have been older, but she was a rescue and we had no history on her.

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