Nelly's Story

Her journey with a GME diagnosis

Nelly’s GME Treatment

2/17/04 – Dr. Berg prescribes dexamethasone 0.25 mg TID (three times a day) for 7 days, then BID (twice  a day) as directed by response.

(Because my memory is fuzzy around this time, I do not know what her steroid schedule was like.  When I called Dr. Berg’s office to get her records, they did not have them anymore, and they were surprised to hear that Nelly was still alive!  Basically, though, her steroid schedule was likely a 4-month taper.  We moved to California in April 2004.)

6/24/04 – Nelly is taking dexamethasone 0.25 mg QOD (every other day).  She is showing no signs of decline since her initial diagnosis.

8/2/04 – Nelly is getting recurrent skin infections.  Her vet at VCA Arden Animal Hospital in Glendale prescribes Clavamox 125 mg BID for 14 days.  She has CBC, chemistry panel, heartworm test, and urinalysis; out of range levels are: platelet count 426 (high), ALK 182 (high), trace protein in urine (high).

8/16/04 – Nelly’s skin is improving.  Extends Clavamox for another 7 days.

8/28/04 – Nelly’s skin is getting worse.  Prescribes Baytril 68 mg – 1/2 pill per day for 14 days and Gentocin topical spray.  Nelly is taking dexamethasone 0.25 mg every 3 days.  Local vet encourages us to have Nelly re-evaluated with a vet neurologist.  Dr. Berg recommends Dr. Stephen M. Hanson at the Veterinary Neurology Center in Tustin, CA.

9/11/04 – Nelly’s skin is getting much better.  Extends Baytril for another 14 days.

9/21/04 – Nelly has her first visit with Dr. Hanson.  His notes are as follows:  Mentation: BAR; Posture: moderate right head tilt; Gait: mild ataxia; Vision-Maze: normal; Vision-Menace: absent OD; Pupils-Resting Size: normal; Pupils-Direct PLR: normal; Pupils-Consensual PLR: normal; Dazzle Reflex: normal; Facial Sensation: slightly decreased on the right; Eye Position: mild lateral strabismus OU; Masticatory Muscle Mass: normal; Jaw Tone: normal; Facial Muscles: normal; Nystagmus: mild rotary nystagmus with the fast phase to the right – transient occurence after a change in head position; Gag Relfex: normal; Tongue Tone/Mobility: normal; Proprioceptive Positioning-Thoracic Limb: normal on left, absent on right; Proprioceptive Positioning-Pelvic Limb: normal on left, absent on right; Hopping-Thoracic Limb: normal on left, absent on right; Hopping-Pelvic Limb: normal on left, absent on right; Tactile Placing-Thoracic Limb: normal on left, decreased on right; Tactile Placing-Pelvic Limb: normal on left, absent on right; Withdrawal Reflex-Thoracic Limb: normal; Withdrawal Reflex-Pelvic Limb: normal; Muscle Mass: normal; Hyperesthesia: none evident; Other comments: PLN normal, abdomen normal, H/L normal, mm pink/moist, CRT<2 sec; Neuroanatomical Localization: multifocal CNS (suspect progression of left cerebral lesion, plus new lesion in medulla or cerebellum).  After going through her history and re-examining her, he suggests that she probably does not have PDE (Pug Dog Encephalitis), because she would probably not be alive still.  He diagnoses her with GME (Granulomatous Meningoencephalomyelitis), which has similar symptoms.  He notices that Nelly has a slight head tilt, which indicates inflammation in the brain stem.  Because of the seriousness of that location, he continues her dexamethasone 0.25 mg Q3d (every 3 days) and adds procarbazine 15 mg.

10/6/04 – Nelly has a re-check with Dr. Hanson, along with blood work (CBC).  His notes are as follows: seemed to get a little worse over first couple of days after last exam, but improving over the last few days; finished with antibiotics, still on dex q3d and procarbazine QD; exam – alert/happy, tendency to circle left, absent menace OD, slight decrease in facial sensation on right, sl decreased CP on right, absent placing/hopping on right, subtle transient positional nystagmus; slight improvement; recommend continue same regimen for now.  CBC results are all normal, except monocyte level is low (112).

10/22/04 – Nelly gets CBC done.  Results are all within range.

11/3/04 – Nelly has a re-check with Dr. Hanson.  His notes: seems slightly better; on dex BID (it’s actually QOD), normal stool, good appetite; exam – BAR, moderate/intermittent right head tilt, moderate ataxia with hypermetrial on right fore, absent CP/placing/hopping on R side, absent menace OD; abdomen normal; dog seems to be back at status she has at initial presentation; recommend increasing procarbazine dose, check CBC in 2 weeks, attempt to decrease dex to SID in several days as planned.  Nelly’s head tilt is getting better, and her vision appears to be improving.

11/18/04 – CBC results show HGB 11.9 (low), MCV 81 (high), Neutrophils 11815 (high).

12/14/04 – Re-check with Dr. Hanson, along with blood work.  His notes: doing better per owner, owner feels dog is regaining some peripheral vision OD; exam – BAR, mild left head tilt, subtle/transitional positional nystagmus (rotary with the fast phase right), slight inconsistency in CP on right; markedly improved neuro status; recommend tapering dex if CBC WNL.  CBC results are all within range.

1/25/05 – Re-check with Dr. Hanson, along with blood work.  His notes: seems to be doing well on current regimen of procarbazine QD and dex QOD (every other day); exam – BAR, moderate circling to L, normal CP, normal menace OU, moderate anisocoria (OD>OS), very mild positional rotary nystagmus.  Nelly’s symptoms have improved.  The vision in her right eye is showing improvement, she is circling less, her head tilt has disappeared, and her right side is responding better to the basic neurological tests.  Dr. Hanson recommends continuing her treatment.  CBC results are normal, except lymphocyte count is low (728) and auto platelets are low (126).

3/20/05 – (Although this is not directly related to her GME treatment, I still felt it was important to include.)  Nelly has been sick for the past few days with vomiting and lethargy.  On this day, she could not get up and would not eat.  We took her to the emergency vet clinic to be evaluated.  The lab results show ALK 382 (high), PHOS 7.1 (high), lymphocytes 0.23 (low), monocytes 0.17 (low), and platelets 54 (low).  The vet concluded that she had a virus that she could not fight off (possibly because of her suppressed immune system).  She put Nelly on IV fluids to help her to be able to fight the virus.  After the fluids, Nelly perks up and quickly gets back to her normal self.

4/13/05 – Re-check with Dr. Hanson and blood work.  His notes: seems to be doing pretty well, no new symptoms, no current GI signs (stool sl loose – improving); exam – BAR, turning to left, decreased menace OD, slightly decreased CP on RF and RH, mild positional rotary nystagmus; sl deterioration from last time; discussed possible switch to Cytosar, due to procarbazine becoming cost-prohibitive.  Nelly’s emergency visit may have affected her neurological symptoms.  Continue treatment plan.  CBC abnormal results are MCV 81 (high), lymphocytes 472 (low), platelet count 112 (low).

5/3/05 – CBC results: lymphocytes 0.40 (low), HCT 36.1% (low), RBC 4.86 (low), platelets 77 (low).

5/17/05 – CBC results: NRBC 4 (high), Bands 552 (high), Neutrophils 11316 (high).  Comment on platelets – A mild neutrophilia is present with a left shift indicating inflammation.  The reported platelet number is 98,000/ul.  However, platelets appear adequate in the smear and a few platelet clumps are present which are likely causing a false decrease in the reported platelet number.

5/31/05 – CBC results are all within range.

6/27/05 – Recent blood work is showing that Nelly’s platelet counts are dangerously low, due to the procarbazine.  Dr. Hanson discontinues procarbazine therapy and prescribes Cytosar injections – 4 injections over 48 hours, every 3 weeks (I do not have the dosage.)  Nelly is still taking dexamethasone 0.25 mg QOD.

7/8/05 – CBC results: Lymphocytes 392 (low).

8/8/05 – CBC results: WBC 19.2 (high), Neutrophils 15936 (high), Lymphocytes 576 (low), Monocytes 1728 (high).

8/12/05 – Dr. Hanson switches to Cytarabine AQ 100mg/5ml injections – (4) 1 mL(cc) injections over 48 hours, every 3 weeks – instead of Cytosar injections.  I’m not clear on the reason behind the switch, but Dr. Hanson said that the two medications are basically the same thing.  Again, Nelly remains on dexamethasone 0.25 mg QOD.

9/1/05 – CBC results: Neutrophils 11869 (high).

10/11/05 – CBC and full panel results: ALK 934 (high), Amylase 320 (low), T4 0.6 (low).  Lab report says the following about T4 results – Dogs with subnormal T4 results may be hypothyroid or euthyroid sick.  Dogs with T4 results in the grey zone may be hypothyroid.  In dogs with consistent clinical signs consider adding on a free T4 by Equilibrium Dialysis and endogenous TSH to aid in confirming hypothyroidism.  For dogs on thyroid supplement, acceptable 4-6 hour post pill total T4 values will generally fall within the higher end of the reference range and up to 6.0 u/dL.

10/13/05 – Blood work shows ALK levels are high (934).  Nelly is prescribed Denosyl SD4 for 30 days to improve her liver function.

10/19/05 – Nelly begins Prescription R/D food to help with diarrhea.

11/12/05 – Re-check with Dr. Hanson.  His notes: doing well, normal stool (on r/d), on dex QOD, just finished a course of cytarabine, just finished a 30 day course of denosyl; exam – BAR, moderate left head tilt, tight circling L, normal CP, absent menace OD, normal PLRs, abd normal, H/L normal, PL N normal; recommend continue same drug regimen, recheck CBC after every other round of cytarabine.  Because Nelly has not shown any worsening of her neurological symptoms and she is responding well to her treatment plan, he believes she is in remission and can be re-checked once a year.

12/19/05 – Nelly’s diarrhea has gotten better, so she returns to her normal food.

3/16/06 – CBC results: WBC 16.7 (high), Neutrophils 14362 (high).

8/9/06 – CBC and full panel results: MCHC 36.1 (high), ALK 1165 (high).

12/16/06 – Re-check with Dr. Hanson and blood work.  His notes: still on dex QOD, cytosine q3wk; recurring skin infections; exam – mild left tilt, circles left, negative menace OD – no other neurological deficits; normal abd, normal H/L, normal PLN, small papules on ventral abdomen; recommend CBC q4 months, taper dex to q3d.  No worsening of condition.  Taper dex dose to 0.25 mg every 3 days.  CBC results: WBC 21.9 (high), Neutrophils 17082 (high), Monocytes 1533 (high), platelet count 403 (high).

7/9/07 – CBC results: Lymphocytes 936 (low).

12/8/07 – Re-check with Dr. Hanson and blood work.  His notes: on dex QOD (head tilt increased after a month on q3d admin); cytosar q3wk healthy otherwise; exam – BAR, absent menace OD, decreased PLRs OU, moderate head tilt left, positional rotary nystagmus with fast phase right, unable to assess CP due to voluntary movement, decreased hopping/placing on right fore/hind, normal abd palp, normal PLN; fairly stable neurological condition, suspect dog would not be able to tolerate tapering of meds; recommend panel/CBC.  Dr. Hanson reports that it is possible that Nelly can remain like this indefinitely.  CBC and full panel results: ALK 735 (high), TC02 bicarbonate 25 (high), Platelets 539 (high).

(3/25/08 – Nelly sees the holistic vet for the first time.  The vet notes that she circles to the left, her heart & lungs are ok, and her teeth have tartar and gingivitis.)

(6/17/08 – Nelly starts on Clavamov 125 mg – 3/4 pill BID for 10 days in preparation for her dental.)

6/20/08 – CBC and full panel results: platelet count 486 (high), no differential performed because WBC are too degenerated, ALK 822 (high), potassium 5.8 (high), Na/K ratio 25 (low), triglyceride 397 (high).  Nelly also gets her teeth cleaned without being sedated.

(10/17/08 – Nelly sees her holistic vet to evaluate black growths on skin.  Vet notes: 3-4 black pedunculated 1/4-1/2″ growths ventral tail and ishium (left), (had similar ones removed, dx benign), all growths are cauliflower like and have greasy black discharge, small 2mm sebaceous cyst medial left flank expressed and cleaned w/ betadine, nipples are blackened, rec clean areas daily with mild soap & water.)

3/16/09 – Re-check with Dr. Hanson and blood work.  His notes: owner feels she is about the same, no new medical conditions, no change in the medical regimen; exam – BAR, absent menace OU, absent PLRs OU, moderate left head tilt, hypermetric, circles left, intermittent spontaneous rotary nystagmus, normal CP, no spinal pain, normal abd palpation, normal PLN; slight decline in neurological function; recommend panel/CBC, consider dose increase (owner reluctant to do this – has not done well on a higher dex dose in the past).  Dr. Hanson reports a slight loss of vision in her left eye, possibly due to her condition or old age.  He comments on Nelly’s allergies and recommends giving her Benadryl.  CBC and full panel results: ALK 811 (high), triglyceride 375 (high), WBC 19.5 (high), Neutrophils 15795 (high), monocytes 1365 (high), Eosinophils 1560 (high), platelets 433 (high).

(5/29/09 – Nelly sees the holistic vet for a red bump on her eyelid that goes down, but then swells back up.  Vet notes: upper right eye lid in middle has small meibobian cyst mild scleral redness, negative stain, no tearing or squinting, eye does not appear dry either.  The diagnosis is meibomian gland adenoma and she is given Neopoly Bac/Dex Opthalmic Drops to put in 1 drop in right eye every 12 hours for 1 week.  If the cyst continues after the drops are gone, then they recommend seeing an ophthalmologist for surgical removal.)

(8/1/09 – When drops are discontinued, Nelly’s eye gets red, so Nelly gets another eye stain to make sure everything is ok.  The stain is negative, so rec continuing drops for now.)

8/4/09 – Evaluation with Dr. Hanson.  Nelly’s vision from both eyes seemed to be worsening.  She is bumping into things more often and having difficulty locating you when you call her.  His notes: seems to have lost vision completely; exam – QAR, marked left head tilt, positional rotary nystagmus (fast phase right), absent menace/tracking OU, absent PLRs OU, mild forelimb hypermetria, markedly decreased CP on right, moderate hepatomegaly, PLN normal, pulses strong/regular; declining neurological function – suspect recurrence of immune-mediated encephalitis; recommendations: increased dexamethasone to 0.25 mg QD, owner to call in 2 weeks – if no improvement, consider switching back to procarbazine, trying cyclosporine, etc.  Dr. Hanson confirms that she has minimal vision with both eyes, and her pupils do not react to light.  He reports increased weakness on her right side.  He suggests she is definitely showing a decline, most likely due to GME inflammation.  He says that it’s possible to get Nelly into a second remission.  We discuss other treatment ideas such as cyclosporine and leflunomide.  He states that he hasn’t had any success with cyclosporine with GME and leflunomide does not have enough data to warrant the risk.  He increased Nelly’s dexamethasone treatment to 0.25 mg QD (each day) and asks me to contact him in 2 weeks.  If her condition worsens, he asks me to call him immediately.

*This recap of Nelly’s GME treatment is her entire plan preceding the start of this blog.  Any treatment changes are reflected in the blog posts.

9 Comments»

  Marie wrote @

Hi, my name is Marie. My 7 year old long-haired chihuahua “Bubby” was just diagnosed with GME a few weeks ago. I was wondering if we can talk about this disease some? I read all your posts, but have tons of questions I’d like to ask.

  Josh wrote @

Hello Marie,

My girl, Cheech, was just diagnosed with GME today. I have decided to start the steroid today to reduce the inflammation. The doctor suggested Cytosar as a more aggressive treatment, but I wanted to start with the steroid and wait on the chemo (Cytosar) being that there are so many other tests involved. She has been through so much this week and I am completely crushed. I was wondering if you would talk to me about the progression of “Bubby”. I do not want to put my girl through a miserable time. I have read very little success with the treatment, however the vet has told me she has a good success rate. Any input you can offer will help.

Thank you for your time,

Josh

  Kathy wrote @

Hi. My Matti was recently diagnosed with GME (when everything else was ruled out). She is not handling the Prednisone, Phenobarbital, and antibiotics all that great. Lots of panting and pacing at night. Seems like I can really feel her bones. This happened suddenly after she was stressed about a visit with an orthopedic specialist. She was fine before that, except not wanting to climb stairs. I was thinking about going holistic instead of conventional drugs. It sounds like you didn’t move totally away from conventional drugs. I’d appreciate talking to you about GME. I’ve done a lot of research since this happened, but would really like to talk to those that are or have also gone through this nightmare. Thanks.

  Debbie wrote @

Our peke has been diagnosed with GME and started cyclosporine which according to the specialist is best treatment,due to the GME she is parelised in ber back legs,does anyone know how soon she would regain use of her legs and how quick should we see results from the medication

  cjohans wrote @

Hi Debbie,

I’ll send you a personal email, too.

Usually, steroids (like prednisone) are used initially to reduce inflammation, which is likely causing the paralysis in your peke’s back legs. Cyclosporine works well for some dogs and not so well for other dogs. There are many different treatments for GME (steroids, cyclo, leflunomide, lomustine, cytarabine, azathioprine), but nothing works as fast as steroids do. Cyclosporine exerts its effect within a day, so you should be seeing results already. If not, then please contact your specialist to inquire about other options for medications.

Much love,
Crystal

  Lisa wrote @

Hi,

Our little Yorkie Oscar was diagnosed with GME 3 months ago. In a matter of a few days, he went from lifting his back leg when he walked to knuckling and falling down. After a few days on Dex he was walking again. After a month of acupuncture and rehabilitation he was back up and running. After 2 weeks he was put on prednisone and seemed to be responding really well. A month and a half in he started showing a little weakness in his back legs which made us worry..his neurologist agreed and told us to double his dose of pred. When we didnt notice much of a change, we brought him in for a check up and he was put on cyclosporine on top of the pred. It has been 2 weeks and he seems much more lively and more co-ordinated. This is the hardest thing to go through never knowing if he is really responding to the meds or if his condition will worsen. Oscar is only a year and a half and he is the sweetest little guy. It is just heart breaking. I hope there is a cure on the horizon :(

  Suzanne wrote @

My little girl Yorkie, Emmy Joyce, was diag. in Jan 2010. Sent home with prednisone, antibiotics, and a good-luck wish. I was told no treatment could be done, surgery, and she would possibly not live till April 2010. She had a very severe head tilt and paralisis on her left side, could not eat on her own. Today, Nov. 18th, 2010, she is happy, bouncy, no paralisis, eating on her own and 4 months off prednisone. Im praying that it was a misdiagnosis of encephalitis, nonbacteria, and she will be alright. This pat weel my 21/2 yr old boy, Krefflo, started with the same symptoms. I have been told it is impossible for him to have this rare disease too. He is her brother. I am treating him with pred and antibiotics. Please keep us in your thoughts and prayers. I too, pray for a cure!!!!

  Kim wrote @

Hello all. My chihuahua, Pavlov, was diagnosed with GME in August of 2009. He began showing symptoms (seizures, head tilt, etc.) in March of ’09. My local vet treated him with prednisonce and phenobarbital, but when Pavlov did not get any better, I took him to my university vet school for an MRI. This is when the GME was diagnosed. Since August of ’09, Pavlov has been taking 50mg of cyclosporine twice a day. It took about a month for him to get back to normal, but now he has lived with this disease and been normal for a year and four months. I highly recommend speaking to your vets about this drug. So far, cyclosporine has saved my dogs life.

  Mike wrote @

Hi my daughters 7 year old chihuahua has gme symptoms as she went blind and with prednisone has got her sight back the vet wants her to have cyclosporine treatments every month for the rest of her life.Has any one had any luck with this treatment or other treatments out there she is such a sweet little dog 5.5 lbs.After getting her sight back she is acting so normal.


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