Lymphangiectasia - An Uphill Battle?

[Jiffer]

I've waited to post anything about this hoping that we would be able to kick it on our own, but at some point, even just getting well wishes and healing thoughts is enough to make one feel better.

 

I guess I have a bit of a long story so I'll try to keep it as short as I can.

 

Last summer around when our old man crossed the bridge, Miss Mojito developed a sore neck. We spent the rest of the summer and a good chunk of the fall trying everything to get it under control. In the end, we had a diagnosis of tendonitis and were treating it with 1/4 tab of 75mg Deramaxx daily. Her starting weight was in the 70lb range (this is important later).

 

About mid-December, I brought her in for a checkup and to renew our prescription. Her tendonitis was well controlled at this point and she was feeling on the up. At the time, I mentioned to the vet that her belly looked swollen and it was very strange that she had gained some weight. The vet blew it off since I had been unable to walk the crew for a few weeks, having had surgery myself.

 

One week to the day later, she was still bloated looking except now she had swollen hocks. I called the vet and brought her in the same day. Ascites and pit edema. Her weight was up 77lbs, likely all fluid. The vet pulled her off the Deramaxx immediately and we ran blood work, thinking that perhaps the Deramaxx was causing the issues. Her blood work came back showing low globulin, albumin and total protein; increased WBC and RBC; clumping platelets. The vet started to think that we were dealing with IBD, so she recommended placing her on a hypoallergenic food so we started Iams Veterinary Formula Fish and Potato. Xrays of her abdomen showed little, thanks to the fluid accumulation. It was clear that she was losing her protein into her abdomen. Urinalysis showed normal readings, no protein loss.

 

At this time, I also started her on Slippery Elm about half an hour before mealtimes. With this, the ascites and edema disappeared for about a week, but then returned again. She continued on this cycle and so we decided it was time for an ultrasound. We did two more blood tests and remarkably, her protein levels were identical in all three tests.

 

The Ultrasound was done mid-February. Her weight was down to 65lbs the day of the ultrasound. The report showed that we are dealing with Lymphangiectasia or possible severe IBD, but the latter was the most likely given her history. We started her on Flagyl (metronidozole) for one week, prednisone (25mg twice a day), and Purina Veterinary EN (Gastroenteric Diet).

 

Last week, she developed a severe infection in her cheek. She bit her cheek while eating her breakfast (she's incredibly ravenous thanks to the pred), so upon her visit to the vet, we found her weight was at an alarming 54lbs. I knew she had been dropping in weight, but I had no idea it was that low. I should also mention that we are feeding her more than the recommended amount (recommended was 2.4 cups, and I was feeding about 3.5 - 4 cups).

We agreed to reduce her pred to 20mg twice a day and change her to Purina HA (Hypoallergenic) which uses MCT's instead of LCT's so it's supposed to respond better for Lymphangiectasia patients with severe protein loss. She was to be fed 3.5 - 4 cups of this food. We also added in B12 shots (1 a week for 4 weeks, then once a month). Her bloodwork was repeated and showed the first positive sign we've seen yet.. her globulin, total protein and albumin were in the low normal range! My vet was so excited that we were seeing a positive result that she had to call me as soon as the results arrived.. I was later told she even did a little dance.

 

As of last evening, she's made the full transition to the new food. In addition, I've also added in an extra meal so she's probably getting closer to 5 cups/day. I noticed on the weekend that she's definitely acting more playful and wiggly than she has in a while. I'm hoping that is a sign of improvement. Even her coat condition has improved.

She's going in for a quick weigh in tonight and I am praying that she hasn't lost any more weight. It's so hard to see my little tomboy looking so fragile.

 

I'm guarded that we can get this condition under control and put it into remission, but at the same time, the information out there suggests that the severe weight loss is abnormal. I'm quite sure that it's entirely attributed to the prednisone (10lbs in one week is a lot!). I'm also incredibly blessed to have my local vet team (2 vets, 3 techs), a veterinary friend named Shelley, and a consulting internal specialist working to help my girl. (A big thank you to all of them, especially Shelley, for keeping me sane and calm and for getting us this far)

Anyway, is there anyone out there who has dealt with this condition or has had to use Pred with similar results? I guess I'm just looking for hope right now. That the past four months of stress, worry and repeated vet visits hasn't been for naught.

 

[Remolacha]

No knowledge of this condition, but lots of for your girl!

[cello]

Background: Our nine year old girl Lady has been dealing with Protein Losing Enteropathy and Lymphangiectasia since April 2013. We discovered her illness during routine blood work before a dental. Good thing we did the blood tests as our vet said that she would have likely bled out during the extractions since her protein was so low. We took her to a large specialty vet clinic to see a Board Certified Internal Medicine specialist. We did more blood tests, then she had an ultrasound. Our IM vet says that PLE and Lymphangiectasia cannot be accurately diagnosed without doing biopsies, so we then did an endoscopy with lots and lots of biopsies.

 

Treatment:

 

Lady was immediately put on an extremely low fat diet of prescription kibble. We use a combination of Hills ID Low Fat Restore and Royal Canine Gastrointestinal Low Fat. Lady hates both of these kibbles, but they are literally our only choices. Our vet has allowed me to add plain boiled pasta and boneless/skinless chicken breasts to augment the tasteless kibble. Lady now gets about 1.5 cups of a mix of the two kibbles, plus a generous one cup of pasta, plus one ounce of chicken for each meal. She eats it grudgingly and it takes at least four tries to get the two meals into her. This is a HUGE improvement from where we were last spring. At one point I was feeding her one kibble at a time by hand. It was awful. Feeding her took me close to four hours each and every day. Then we added the pasta and life improved! She starting gaining back some of the ten pounds she lost and life was much better for everyone.

 

Lady started out on 40mg of prednisone each day. In most dogs pred makes them ravenous. With Lady, it completely shut down any appetite at all. We had to add an appetite stimulant to get her to eat anything. Almost one year later we are down to 10mg of prednisone three times a week. We did have her down to twice a week, but her protein levels dropped a bit and she was eating even worse. She is still on the appetite stimulant. She goes back to see her IM vet at the end of this month, and we will see if adding back that third prednisone dose each week has helped her protein levels to rebound.

 

This is a horrible disease to deal with. We know that there is no cure - only the hope of a remission of sorts. I have lived the past 11 months feeling like I am waiting for the other shoe to drop. I thank God that at least for right now, I have my happy bouncy girl still with us. Eating will always be a challenge, but other than those issues, you would never know just how sick Lady really is. She has gained back all the lost weight plus an extra four pounds! Her coat is now shiny and healthy looking and her belly has lost the prednisone pouch.

 

I sincerely wish you the best of luck. Please feel free to PM if I can be of any help.

Carol Ann.

[MaryJane]

I wanted to commiserate a bit ...

 

Lucy is my seizure dog and after worsening seizures last year, we finally got her under control in August by adding another seizure medicine to the 2 she was already on. In addition, she was diagnosed as hypothyroid and went on thyroid supplement. Lat fall, she looked like she was loosing weight and I upped her food intake and at a ER visit for another matter, we noticed that her weight was down from 70 to 67 pounds.

 

In the past two months even though she was being fed more, she was not gaining weight and looked like she dropped a bit more. She was also having problems keeping food in her mouth and swallowing it and this can be a side effect of the Kbr she is on - so visit to neurologist (she kept on dropping food but eventually ate it all). Neurologist concerned about weight loss, now at 63 from 70 last year (10%) and not as concerned on the swallowing at this time. Changed from one seizure medicine of KBR to Sodium Bromide as it is more gentle on GI tract. Also dropped/decreased some other seizure meds as they could also be of concern in IBD situations. Referred to internist about IBD and after ultrasound - decision to put her on a homemade fish/rice/potato diet, add probiotics, and I have to give weekly B12 shots for 6 weeks then monthly.

 

If no improvement in weight either increasing or stabilizing, then next is a biopsy and then maybe adding an immune suppresant but, that is last on the last on the options because of all the other medicines she is already on. Because some of the seizure meds can cause GI distress, the neurologist and I were decreasing her other meds and .... of course she has 2 seizures. The biopsy would require overnight stay and a harsh laxative and could trigger more seizures.

 

I'm hoping that my girl stabilizes with the B12 shots and the different diet. I try to just think a few days ahead and take each day as it comes ....

[tbhounds]

Your story sounds very typical for an IBD hound. I'm going to guess that her recent weight loss is from the prednisone use--it's astonishingly how much muscle mass they can lose and so quickly for pred use sounds like you are on a soild treatment plan. The only other suggestion I can make for you is to switch your corticosteroid choice. Many internal medicine Drs are now using budesonide rather than pred for conditions as IBD. Budesonide is a very strong corticosteroid that stays primarily within the gut therefore, you don't see all of the negative systemic side effects that you would see if prednisone or prednisolone (pu/pd, panting, muscle loss, thinning skin and hair). To give an example an average dose would be 3mgs a day. I was able to maintain my IBD boy for 3 yrs by using 3 mg every 3rd day--or course each individuals response will vary.

Edited March 10, 2014 by tbhounds

[MaryJane]

I forgot to add that we also discussed putting Lucy on Flagyl as it can have anti-inflammatory properties with GI issues but with all the meds she is already on, the internist was hesitant to add another medicine at this time.

[MP_the4pack]

My Topaz had protein losing enteropathy. I was taking her to a specialty clinic and they were all working on it being an intestinal disease (Lymphangiectasia or Chrones). I went to U of Penn where they did a liver function test.(this is not the liver tests that are the routine tests done, that's liver enzymes.) Her liver enzyme tests were completely normal, the liver function tests were completely off the charts. While this was just supposed to be a second opinion for her, they told me she wasn't going to make it to the weekend. (this was Thursday). I lost her there.

So you might want to make sure it's not liver disease.

[claudiav]

I feel for each of you with picky eaters and compounded health problems. I adopted Sarge 9 months ago. The first 6 months were torture. He has never eaten anything for more than 3 consecutive days. He had recurring diarrhea and dehydration due to constant food changes. There was NOTHING I could get into him with any measure of consistency. Vet diagnosed him with IBD without biopsies as I never wanted to put him thru that, @ 11 yrs old. He raced at 78 lbs, was a bag of bones @ 70 when I adopted him, and was losing more and more weight. Anything we found that worked and helped him, would not last . It was a constant roller coaster of emotions. I spent about $10K on several hospitalizations for severe dehydration, countless tests, meds, 5 different antibiotics, steroids, appetite stimulants, etc.... The last awful flareup @ the beginning of the year landed him in the ER for 4 days. The ER vet suggested a feeding tube. No one had previously suggested this. I didn't know anything about it, so I came here and asked for advice/experience. No one had experience with feeding tubes either, except for Dunquin who had lost majority of his lower jaw.

 

After two full months, I can truly say the feeding tube saved his life!!! He will continue getting weekly B-12 shots, stay on Budesonide, Sulfasalazine, Sulcrafate, and another med for life, which all work on the GI tract. But feeding him is not the horror, torture that I endured for 6 months. He stays on the Royal Canine Gastrointestinal Blend HIGH ENERGY food, but it gets blended into a liquid and pushed down the feeding tube by syringe (without needle). He was down to 59.5 lbs at the beginning of the year @ the ER, when I almost lost him. He was up to 70 lbs the last vet visit, exactly one month ago. He is looking better than I could ever have imagined and must surely be close to 80 lbs now. I have to take him to a Petsmart and weigh him to satisfy my curiosity. His coat is smooth and shining. His eyes are bright and full of life. He finally looks like a greyhound, not a stick figure. He has energy and stamina, which he didn't have when he was so sick. He is vocal and curious and follows me around the house, and cries if he can't see me. I invested in a $400 Vitamix blender to adequately puree his food, so it could go down the tube. The feeding tube has literally changed his life, and mine. It is placed on the side of the neck, and it stays covered all the time, so no more neck collars. He wears a harness to go for walkies. I clean the incision and surrounding skin, and change his bandage once a week, to ensure there is no infection. The actual feeding takes 15 minutes, 3 times a day. He gets 1500 calories/day and that's how he has gained weight and his GI tract started absorbing the nutrients form the food and working properly. There was no other way I could have reached this milestone with him.

 

I am stunned that no one had experience or suggested this as a viable option. Short- or long-term. The feeding tube does not interfere with him eating. If he wants to eat, he is perfectly able to do so. Unfortunately, he is the same picky dog I have known since adopting him 9 months ago. He liked the kibble for a few days, then refused it. He liked the canned food for a few days, than refused it. We tried mixing it up and surprising him, thinking he needs variety, but that didn't last more than a few days either. If/When he ate regular prescription food, I would adjust the liquid food, making sure he remained at the 1500 calories/day limit. He pretty much has stopped eating dog food. He eats treats sometimes. Mostly, he wants what we're eating, but he can't have that with IBD, so he just gives up begging and sits down eventually. The actual feeding via syringe, is a pleasure. He doesn't look at it like force feeding. He's sleeping thru it. I'm half watching tv while pumping liquid down the tube. There's no fear or resentment, and no begging and pleading with him to eat. If he ever decides to eat his food on his own, we can always take the tube out, but I don't see that happening. And it's fine. It will stay with him the rest of his life. At least it was the best solution to getting him healthy, and I don't mind blending his food every nite, and pumping it into him 3/day for the rest of his life. When he goes, if won't be for refusing to eat, or not getting nutrients into him. I am thankful everyday for that ER vet suggesting this option, and still dumbfounded that vets don't recommend it more when nothing else works.

 

I wish you all luck in finding something that works for your pups, but know that there is this option out there, and I am available as a resource ANYTIME.

 

Claudia

[rascalsmom]

My boy, Jack (in my avatar) had lymphangiectasia. His was diagnosed after he was losing protein--we did an ultrasound which found a mass. They operated to figure out what the mass was, and it turned out that it was 'clogged lymphatics'. He started on the special food, and prednisolone. He was losing weight alarmingly, in spite of these measures. One day he was lame; x rays showed nothing. The next day his front leg was swollen....the vet felt sure it was blood clots. We had him put down at that point, since the only options were more veterinary specialists, and Jack was a mess at the vet--very, very stressed. After he was gone the vet was looking closely at him, and he had a lot of bruising on the inside of his back legs--so she said it was definitely clots. From start to finish, this was all about a month's time. He was gone so quickly. I did not even get three years with him, and he was such a good dog.

[galgrey]

So sorry you are all dealing with these medical issues with your beloved hounds.

[greytpups]

No advice Jen, just sending good thoughts.

[HeidisMum]

We had 1.5 years after the first symptoms of Lymphangictasia with IBD with my first greyhound Heidi. I am blessed to have had that time and credit that length of time to varying doses of prednisone and metronidazole. Medication and diet can help to control it. The meds and food that work for one pup won't work for a different one, so you are left with trial and error to figure out what works for your pup. My only advice is to stick to any diet that works for your pup without exception. If you find something that works do not stray from it by even one kibble. It is much easier to maintain a remission than to get a flare up back under control.

 

I'm sending all the healing thoughts possible.

[Jiffer]

Thanks everyone for your kind words and your inspiration.

Just a little update. We had our checkup last night (and second B12 shot), and the good news is that she has not lost any more weight this week. Our vet wants to see her for a weigh in on Saturday morning. We're feeling like perhaps it's starting to turn around.

 

I should mention, because it's buried in my long rambly post... at this point, the Lymphangiectasia is seemingly under control (all bloodwork has come back normal; and other than weight/muscle loss, she's physically in good shape). The problem is likely the prednisone side effects and that her body went without much protein in her system for several months before we finally figured this out.

 

We've been lucky with Mojito in that her appetite is very excellent. She's eating 3 hearty meals (instead of our usual 2) every day without hesitation. I guess I should also say that she's 9.5 years old.

 

You've all been so kind in sharing your stories that I feel I should answer each:

 

@cello: Thank you! I'm glad to read that you've been able to get Lady's under control. There have been a few days where I felt like I was just a hamster on a wheel. Like nothing we were going to do for her was going to make a lick of difference. Your post gives me hope that we can get it into remission and reduce her pred levels so we can avoid these nasty side effects. You are right, this disease is horrible! I was all the more shocked because of the way it blindsided us. There was nothing to indicate that this was her problem until the ascites and edema began.

 

@Mary Jane: Have you considered adding in Slippery Elm to help with GI distress? My first grey was an epileptic so I know that struggle all too well. Slippery Elm is what got Mojito through the first five weeks of this condition. It's made from tree bark and acts like Pepto Bismol or Sulcrate. I have a powder which I suspend in water (1/4 tsp to 1/4 cup hot water; give a "Metacam" syringe full before a meal) and it also comes in capsule form from health food stores. But because it coats the stomach and GI, you should separate dosing it away from any medications. Something to discuss with your vet?

 

@tbhounds: Thanks for the suggestion. I talked to our vet about the Budesonide last night. She tells me that it takes 4 - 5 weeks to become effective which is why we haven't used it, but that it is an alternative if this continues. In the long term of course, we're planning to ween her down off the pred to as low a dose as possible.

 

@MP: You make a good point. I've been told we can rule out liver disease (poor girl is probably starting to feel like somewhat of a pincushion with all the tests we've run on her ..) Initially when the ascites started, we were concerned that it was liver or heart disease so those were tested for early on. We also made sure to test for pancreatitis. The possibility that we're still looking at IBD or even some type of cancer is not out of the question either.

 

@Claudia: Now that is dedication and true love! I commend you for your strength with your boy and for fighting for him. He sounds like a darling. I can only imagine the struggle when you have a dog who is food picky AND dealing with IBD.

 

@rascalsmom: Wow The chance of blood clots is something I've thought a lot about since looking into this disease. One of the proteins it effects is the one responsible for reducing clumping in platelets, so if that protein is reduced, clots will form. I remember when you brought him home... I'm sorry he had to leave so soon.

 

@HeidisMum: Definitely, I've had to be extremely diligent with what she gets now. It's difficult because I'd share my food with her and her brothers... her breeder/owner taught her to eat so politely off of a fork or spoon. Now I have to endure her boring a hole in me with her eyes trying to will the food to jump from my plate into her mouth. I keep telling her it's for her own good, but I don't think she believes me. Silly girl.

Edited March 11, 2014 by Jiffer

[rascalsmom]

Jiffer, I never knew that about the protein/platelet thing. The vet thought the clots were related to the prednisolone he was on. She prescribed that to try and quickly get the disease under control, and then we were going to switch him to prednisone. He never made it that far. He did so well after the VERY invasive surgery--recovered very well from that--was eating like a pig (thanks to the pred, no doubt), probably upwards of 7 cups a day---but just kept losing weight. We were actually making a little progress with his protein numbers when the clots developed.

[Guest budsmom]

Robin from the Lexus Project has been through severe IBD with her boy, Beau. You may want to reach out to her, also. She has been through H*ll and back with it, but has never given up and I think eventually found that talapia was something he could eat.

[Jiffer]

For anyone who was following my saga.. It's been another month and we're excited to say that Miss Mojito has gained weight: 56.4lbs and is looking happy and healthy again. Her lowest recorded weight was 53.2lbs.

 

Her bloodwork results have been repeated twice with good numbers and improvements on both. We've had a few infection issues thanks to the prednisone keeping her immunity down, but antibiotics have fixed that up quickly and easily.

The plan is two more weeks on 10mg Pred. twice a day, repeat blood, and we'll then consider a reduction again. She's also getting Milk Thistle to protect her Liver since she's been on so many drugs lately.

 

For the first time in I can't remember how long, she gave me a hug this past weekend. It was that moment I realized, I'm getting my girl back.

Edited April 9, 2014 by Jiffer

[GreyPoopon]

What a great report!

 

I hope Mojito continues to improve. And give you lots of hugs.

[rascalsmom]

I'm so happy to hear this.

[MP_the4pack]

[Rickiesmom]

What a great update! Hope Mojito continues to improve as the Pred is reduced!

[carronstar]

What a wonderful report!

[galgrey]

So glad to see this positive update!

[Charlies_Dad]

That is an excellent update!

[tbhounds]

Greyt news!!

[cello]

Greyt news!

 

Lady is also doing well. We are at the one year mark this week in dealing with PLE and Lymphangiectasia. Lady's check up last week at her Internal Medicine specialist went well, and her blood tests are all completely normal! We did have her weaned down to 10mg of Prednisone twice a week, but her blood protein levels fell at that dosage, so we had to raise her back up to 10mg three times per week. That seems to be the dosage that she needs to maintain normal protein levels.

 

As far as eating .... well things still somewhat suck in that department. She still hates the two prescription foods that she has to eat, but pasta is keeping her going. This past month I had to reduce the kibble a little and increase the pasta to keep her eating. Even with the mirtazapine appetite stimulant, getting Lady to eat is a huge daily challenge. I admit that there are some days when the first thing I think of when I wake up is "Oh great. I need to get Lady to eat again." It is difficult to know what is the disease and what is behavior related. She wants me to scoop out a handful of food at a time and put it on the dog bed she is lying on. It has to have the exactly correct ratio of kibble to pasta or she won't even touch it. She eats half a meal then refuses to eat any more. Later I give the other half to her on her bed in the family room, and then she will eat it out of the bowl.

 

Lady's weight dropped by one kilogram (2.2 pounds) over the past eight weeks, but the vet is still happy. Lady had actually gained seven pounds more than her starting weight, so she still has some extra. Her normal weight was 69 pounds and she is now 74 pounds. (She has always been the size of a male Greyhound.)

 

Next vet appointment with her specialist is in 3-4 months, so that is a great deal of progress!! I am not fooling myself. I know that this is a disease that will likely one day take her life, but for the moment, she is happy and as healthy as she can be. Her tenth birthday is exactly six months away. I told the vet that that was my next goal - to see her turn 10 years old. The vet said that HER goal was for much longer! I hope that she is right.