Doberman with AIHA

[Vally]

Message from Sheena

Oh Karyn, you are such a sweetheart – don’t get too despondent. I promise it’s early days – I would never lie to you – you must give him at least a couple of weeks to respond. The key to this is T-lymphocyte suppression & this takes 7-10 days on azathioprine for example. There isn’t much info on timings of other drugs, BUT from experience on here, you don’t see a response for a couple of weeks. Side effects – you have to ride them, you have no choice. We’ve all seen them & they can be bad for all of us. Accepting that is hard & we cannot give up.

Maybe the vet leaving will help. The new person may be more open to ideas, but I wouldn’t count on it. Although IMHA is the most common immune-mediated disease in dogs, I would still not call it common. My vets had never seen a case. My specialist had treated 5 cases since moving back to France – to me that is not common – if it were, maybe there would be some good protocols around in the UK! Yes, “ordinary” anaemia is common as muck, as it is in humans.

Do not let them push you on Monday, please don’t – he’s your baby & YOU decide. He needs more time. I’m so very sorry you’ve had such an awful time with the vets. I’m not commenting further on the thyroxine as we are banging our heads against a brick wall at the moment & it’s breaking your heart. I know he either hasn’t read Jean Dodds papers or has chosen to dismiss them. They are clinical proof.

And yes he may be making new blood cells, but again the calculation I sent you for them as to adequacy of response – no answer came the loud reply I presume? It’s so frustrating for you to not get any results at all. I am also really angry about this.

That cliff – you have every single person on here holding onto you & Louis – we refuse to let you fall.

Much love as always

Sheena xxxxxxxxxx

[Vally]

Yep, hanging on to that rope – you won’t fall.

[jill]

Hi Karan , thinking if you and Louis , keep strong hun , remember never give up ! We are all here with you , love Jill & Snoops xxx

[admin]

Message from Karyn who is unable to post:

I’ve just got back from Rutland, it’s funny how we get to know our dogs so well, that they can almost speak to us.
Louis’s PCV has dropped to 13%, he is currently waiting for a blood transfusion, much to the dismay of Stefano, I think he wants us to call it at day now, because nothing is working.
One thing that has really helped us is Louis’s blog, because I have captured every single minute of this terrible journey, it has allowed us to track back what happens just before his PCV drops, and the common theme is the introduction of a new immune suppressant other than prednisolone.
So we have been proven right yet again, the introduction of his latest drug has caused another crash in PCV. He paws and legs have also started to swell, so he’s really found it hard to get about.
We have pushed Stefano into giving him another blood transfusion, for a number of reasons.
1) Louis is still eating, and interested in food, so much so he pinches Olga’s when she’s not looking.
2) His stomach is fine, he has normal poops.
3) He is still following us around the house when we go into another room.
4) He’s drinking well.
5) When we take him out for a wander around he still carries and chew’s his Frisbee.
6) He’s put weight on.

Stefano mentioned a paper he had found on the internet and has done some research on a drug called Liposomal Clodronate. He explained that this drug has been used on dogs with AIHA, in a small trail and it’s had good results BUT.. and there’s always a but… he said in his opinion there hasn’t been enough trials done for it to be considered as a treatment in the UK. It can only be sourced from USA, and that means import and medical certificates, which all take time.
Which is where I jumped in and said a blood transfusion will buy him time, for you to do your research and to find out if and how we can get our hands on this stuff.
I asked what it does and he said it acts like a Trojan horse to infiltrate the body, and it latches onto the cells that are killing his red blood cells and destroys them, he said the only thing that is causing him real concern is that all of the dogs in the trials had spleens and Louis doesn’t. There was a long silence in the room at this point.
Without wanting to sound like we are using Louis as a ‘test case’ I said “None of the normal immune suppressants, like cyclosporine, mycophenolate etc have worked, so as long as you can assure us that Louis isn’t in any pain then I think we should at least try to see if we can actually get hold of the stuff. Stefano said Louis isn’t in pain, he is just finding it difficult to get about, he said he is breathless and will probably feel dizzy, but his’s not in pain.
I know we keep saying this is his last chance, but we have come so far I am not ready to give up, not that we could ever be accused of giving up but you know what I mean.
If anyone has heard of this drug Liposomal Clodronate then please let me know.
Hopefully I can pick him up later tonight after his transfusion, at least it will keep the cost down a bit.
Love Karyn
xx

[admin]

Hi Karyn

Sorry to hear about the drop, but it really is too early for the drug (leflunomide) to have worked in my opinion – going to have a look & see if I can find out more.

YES! I mentioned the liposomal clodronate to you in the 25th July message I sent about all the other drugs available – absolutely worth a try. I came across a study on this a while back – hence I mentioned it to you & it sounds good as an adjunct to therapy for sure.

If Louis was human, the hospital would just keep transfusing until a solution was found. Why should our dogs be treated any differently? Well done you for keeping going – Louis is not giving up, so why should anyone else?

I will get back to you with more info on the study.

Much love always

Sheena xxxxx

[Vally]

Karyn, absolutely agree with Sheena AND you AND Louis. He’s still hungry – that’s one of the first criteria to bear in mind in quality of life.

[admin]

Liposomal clodronate studies:
From as early as 2006!
http://www.ncbi.nlm.nih.gov/pubmed/16982332

http://www.exphem.org/article/S0301-472X(06)00331-6/abstract?cc=y=

Says:
Five dogs with spontaneous IMHA were treated once with liposomal clodronate at the 0.5 ml/kg dose. Though erythrocyte clearance was not completely blocked, the drug was well-tolerated and all 5 dogs survived to leave the hospital. These studies suggest that liposomal clodronate may be an effective agent for temporary suppression of erythrocyte destruction in IMHA. Additional studies, including evaluation of higher doses of liposomal clodronate, are warranted in dogs with spontaneous IMHA.

Which in plain English means it stops red cell destruction, which is Louis main problem.

See also
http://www.avsg.net/files/7614/0511/6749/ImmuneMediatedHemolyticAnemiaHeatherMineoDVMDACVECC.pdf
Which says
“Liposome-Encapsulated Clodronate
This investigational drug is a liposome-encapsulated bisphosphonate. Phagocytosis of the liposomes by macrophages in the liver and spleen leads to rapid apoptosis of the macrophages. This results in a rapid reduction in red cell opsonization and allows time for additional drugs to act against other arms of the immune system. The effects of clodronate last approximately one week and a pilot study at CSU showed improved survival times in dogs treated at low doses in combination with prednisone, azathioprine and heparin.”

There is also mention of leflunomide in that paper.

http://vetfolio-vetstreet.s3.amazonaws.com/mmah/1c/533bd548c2472d83d8a1095cfa0658/filePV_31_01_33_0.pdf

Quote on page 39 leflunomide section:

“Most of the dogs had mild to
moderate disease or partial response to conventional
therapy, affording sufficient time for
leflunomide to exert its immunosuppressive
effects”

– which makes me think it will take longer than some other drugs.

Hang on in there Karyn!

Love Sheena xxxxx

[jill]

Hi Karan so sorry to read Louis Pcv has dropped , but so glad to hear he is receiving the blood transfusion , you are doing the right thing , if it was me I’m afraid if there’s any chance I would take it to ! Never give up ! I totally agree with Sheena & Valley , Louis is a fighter ! He’s still eating ,drinking ect he’s not giving up so why should we, Thinking of you always , you are great fur perants , stay strong love Jill & Snoops xxxxx

[Vally]

Message from Sheena

Oh Karyn, you are such a sweetheart – don’t get too despondent. I promise it’s early days – I would never lie to you – you must give him at least a couple of weeks to respond. The key to this is T-lymphocyte suppression & this takes 7-10 days on azathioprine for example. There isn’t much info on timings of other drugs, BUT from experience on here, you don’t see a response for a couple of weeks. Side effects – you have to ride them, you have no choice. We’ve all seen them & they can be bad for all of us. Accepting that is hard & we cannot give up.

Maybe the vet leaving will help. The new person may be more open to ideas, but I wouldn’t count on it. Although IMHA is the most common immune-mediated disease in dogs, I would still not call it common. My vets had never seen a case. My specialist had treated 5 cases since moving back to France – to me that is not common – if it were, maybe there would be some good protocols around in the UK! Yes, “ordinary” anaemia is common as muck, as it is in humans.

Do not let them push you on Monday, please don’t – he’s your baby & YOU decide. He needs more time. I’m so very sorry you’ve had such an awful time with the vets. I’m not commenting further on the thyroxine as we are banging our heads against a brick wall at the moment & it’s breaking your heart. I know he either hasn’t read Jean Dodds papers or has chosen to dismiss them. They are clinical proof.

And yes he may be making new blood cells, but again the calculation I sent you for them as to adequacy of response – no answer came the loud reply I presume? It’s so frustrating for you to not get any results at all. I am also really angry about this.

That cliff – you have every single person on here holding onto you & Louis – we refuse to let you fall.

Much love as always

Sheena xxxxxxxxxx

[Vally]

Yep, hanging on to that rope – you won’t fall.

[jill]

Hi Karan , thinking if you and Louis , keep strong hun , remember never give up ! We are all here with you , love Jill & Snoops xxx

[admin]

Message from Karyn who is unable to post:

I’ve just got back from Rutland, it’s funny how we get to know our dogs so well, that they can almost speak to us.
Louis’s PCV has dropped to 13%, he is currently waiting for a blood transfusion, much to the dismay of Stefano, I think he wants us to call it at day now, because nothing is working.
One thing that has really helped us is Louis’s blog, because I have captured every single minute of this terrible journey, it has allowed us to track back what happens just before his PCV drops, and the common theme is the introduction of a new immune suppressant other than prednisolone.
So we have been proven right yet again, the introduction of his latest drug has caused another crash in PCV. He paws and legs have also started to swell, so he’s really found it hard to get about.
We have pushed Stefano into giving him another blood transfusion, for a number of reasons.
1) Louis is still eating, and interested in food, so much so he pinches Olga’s when she’s not looking.
2) His stomach is fine, he has normal poops.
3) He is still following us around the house when we go into another room.
4) He’s drinking well.
5) When we take him out for a wander around he still carries and chew’s his Frisbee.
6) He’s put weight on.

Stefano mentioned a paper he had found on the internet and has done some research on a drug called Liposomal Clodronate. He explained that this drug has been used on dogs with AIHA, in a small trail and it’s had good results BUT.. and there’s always a but… he said in his opinion there hasn’t been enough trials done for it to be considered as a treatment in the UK. It can only be sourced from USA, and that means import and medical certificates, which all take time.
Which is where I jumped in and said a blood transfusion will buy him time, for you to do your research and to find out if and how we can get our hands on this stuff.
I asked what it does and he said it acts like a Trojan horse to infiltrate the body, and it latches onto the cells that are killing his red blood cells and destroys them, he said the only thing that is causing him real concern is that all of the dogs in the trials had spleens and Louis doesn’t. There was a long silence in the room at this point.
Without wanting to sound like we are using Louis as a ‘test case’ I said “None of the normal immune suppressants, like cyclosporine, mycophenolate etc have worked, so as long as you can assure us that Louis isn’t in any pain then I think we should at least try to see if we can actually get hold of the stuff. Stefano said Louis isn’t in pain, he is just finding it difficult to get about, he said he is breathless and will probably feel dizzy, but his’s not in pain.
I know we keep saying this is his last chance, but we have come so far I am not ready to give up, not that we could ever be accused of giving up but you know what I mean.
If anyone has heard of this drug Liposomal Clodronate then please let me know.
Hopefully I can pick him up later tonight after his transfusion, at least it will keep the cost down a bit.
Love Karyn
xx

[admin]

Hi Karyn

Sorry to hear about the drop, but it really is too early for the drug (leflunomide) to have worked in my opinion – going to have a look & see if I can find out more.

YES! I mentioned the liposomal clodronate to you in the 25th July message I sent about all the other drugs available – absolutely worth a try. I came across a study on this a while back – hence I mentioned it to you & it sounds good as an adjunct to therapy for sure.

If Louis was human, the hospital would just keep transfusing until a solution was found. Why should our dogs be treated any differently? Well done you for keeping going – Louis is not giving up, so why should anyone else?

I will get back to you with more info on the study.

Much love always

Sheena xxxxx

[Vally]

Karyn, absolutely agree with Sheena AND you AND Louis. He’s still hungry – that’s one of the first criteria to bear in mind in quality of life.

[admin]

Liposomal clodronate studies:
From as early as 2006!
http://www.ncbi.nlm.nih.gov/pubmed/16982332

http://www.exphem.org/article/S0301-472X(06)00331-6/abstract?cc=y=

Says:
Five dogs with spontaneous IMHA were treated once with liposomal clodronate at the 0.5 ml/kg dose. Though erythrocyte clearance was not completely blocked, the drug was well-tolerated and all 5 dogs survived to leave the hospital. These studies suggest that liposomal clodronate may be an effective agent for temporary suppression of erythrocyte destruction in IMHA. Additional studies, including evaluation of higher doses of liposomal clodronate, are warranted in dogs with spontaneous IMHA.

Which in plain English means it stops red cell destruction, which is Louis main problem.

See also
http://www.avsg.net/files/7614/0511/6749/ImmuneMediatedHemolyticAnemiaHeatherMineoDVMDACVECC.pdf
Which says
“Liposome-Encapsulated Clodronate
This investigational drug is a liposome-encapsulated bisphosphonate. Phagocytosis of the liposomes by macrophages in the liver and spleen leads to rapid apoptosis of the macrophages. This results in a rapid reduction in red cell opsonization and allows time for additional drugs to act against other arms of the immune system. The effects of clodronate last approximately one week and a pilot study at CSU showed improved survival times in dogs treated at low doses in combination with prednisone, azathioprine and heparin.”

There is also mention of leflunomide in that paper.

http://vetfolio-vetstreet.s3.amazonaws.com/mmah/1c/533bd548c2472d83d8a1095cfa0658/filePV_31_01_33_0.pdf

Quote on page 39 leflunomide section:

“Most of the dogs had mild to
moderate disease or partial response to conventional
therapy, affording sufficient time for
leflunomide to exert its immunosuppressive
effects”

– which makes me think it will take longer than some other drugs.

Hang on in there Karyn!

Love Sheena xxxxx

[jill]

Hi Karan so sorry to read Louis Pcv has dropped , but so glad to hear he is receiving the blood transfusion , you are doing the right thing , if it was me I’m afraid if there’s any chance I would take it to ! Never give up ! I totally agree with Sheena & Valley , Louis is a fighter ! He’s still eating ,drinking ect he’s not giving up so why should we, Thinking of you always , you are great fur perants , stay strong love Jill & Snoops xxxxx