Ashki – new thread

[Vally]

Tamara, I’m sorry to hear that Ashki’s PCV has dropped again. Yes, get that email off to Dr Dodds. Good to have put the pred back up by double. Need some serious pred to kick this back into line again.

Keep us posted.

Lots of love Vally & Bingo

[Tamara]

Thank you Vally. I will definitely.
xoxox
tamara

[admin]

Oh Tamara – sorry to hear about Ashki’s PCV; you must be worried sick. Keep strong and keep fighting

love

Lynda

[admin]

Dear Tamara.

I’m so sorry it isn’t better news yet, but I am sure Dr Dodds will come up with some good suggestions and fingers crossed the metronidazole and increased pred will help. How are his retics looking?

Thinking of you and sending get well hugs. Please do keep us posted.

Loads of love,

Mary and Mable x

[admin]

It’s the wee hours of the morning here and I’m up – fretting about this and that, that I haven’t done for the upcoming holidays. Go figure. It’s a mom, grandmom thing, I guess. Silly.

BUT, in being up, I read your post, and wanted to write immediately. I am so sorry you are going through this. I know this just grabs your heart and head. Can you tell me, not in detail, but quickly the daily dose(s) and what? And what supplements (being tummy, liver, anti-clotting)? Just a quick list?

I know how you feel – I have been down this road with Sadie now, three times – once with the original onset and then two relapses. It will nail you, but Tamara – you and Ashki can do this. Hang in there. Don’t forget to take care of yourself too – some of the best advice I got and continue to get from this wonderful, awesome, loving group/forum.

I wanted to tell you about something that I think has really helped keep Sadie stable and as much as I do believe in this stuff (PetTinic), I had been a bit relaxed about her dosage. This last relapse, mid-October, I e-mailed her prior vet, whom is now doing probably 98% rescue work and has moved out of our area – but we still keep in touch. And, I still think he’s an awesome vet, although through him we weaned too fast the first time, hence the first relapse. But through all this AIHA with Sadie, Dr. Hamilton and I have learned much together and he continues to check on her. But most importantly, he was the one, that upon his immediate, right-on-target diagnosis of AIHA with Sadie at onset, that put her on all the (right and needed) meds (prednisone and Atopica) and the needed supplements (below) AND PetTinic. I thought it interesting too, that Dr. Dodds recommended it too.

So, in his usual checking in on Sadie, I let him know about this last relapse (goodness, she was down to 2.5mg of prednisone daily). I told him we had put her back up to 20mg prednisone and all the usual supplements; Sucralfate – tummy, Denamarin – liver, Clopidogrel – anti-clotting. He immediately asked if Sadie was STILL on PetTinic. You know what – I had actually lowered it and at times, didn’t even give it to her. He said to put her back on it immediately and keep her on it. I did and he PCV started moving up right away.

I am not saying that adding PetTinic is a cure-all, but in reading about Ashki’s lowered PCV – I think NOW is a good time to ask your vet(s) and Dr. Dodds if it would be good for Ashki. I am not sure about this supplement with Ashki’s other problems, but it’s worth asking.

FYI – Two weeks ago, Sadie was holding at a 40ish PCV – holding was good, but she was doing just that, holding. She was still regenerating, so that was good, but not moving up – I thought, so this is going to be her “new” normal – 42 (she was 46 prior to this last relapse). After Dr. Hamilton’s e-mail and upping the PetTinic, maybe it was just timing and perhaps the weaning down on the prednisone (she’s currently weaned down to 10mg daily – 5mg in am and 5mg in pm), but her PCV jumped back up to 46 last Thursday. Goodness – I was just thinking the other day – I hope they continue making this stuff forever! :)

Also, I have some Soloxine, if the vets and Dr. Dodds want to try this with Ashki (although, now may not be a good time to change too much). At any rate – you or anyone else is welcome to it. Please let me know and I’ll mail it. :)

I am thinking of you both and sending much love and huge hugs.

Linda (and Sadie)

[admin]

Hi dear Tamara

I can only imagine the worry & angst you are feeling – not the news you wanted at all. I am relieved you have much knowledge & help around you & am sure they will come up with good, positive ideas.

All I can say is that I am thinking of you & Ashki constantly – this is really unfair. You have a huge amount of support from others on here who have lived through the horrible experience of relapses with their babies, so you know they can get through this & keep on fighting. You are right – the soloxine is very useful as it encourages red blood cell production. Dr Dodds will be looking at this I’m sure. I dearly wish I had the magic answer, Tamara. If you have to “start again” with the treatment, that’s OK. It just means more patience, which is hard to find.

Sending loads of love
Sheena, Worzel & Ollie xxxxx

[Tamara]

Hi all, thank you so much for your love and support. It does help so much to hear of your experience with relapse, Linda. It is discouraging, and yesterday morning I was thinking maybe I just need to accept that he is not responding to treatment, but then later I was going through his labs for the zillionth time and thought, no, he did respond and he will again.

I had a long talk with the specialist last night, going over different options and things to think about. We may do another ultrasound just to check on things; we may talk more about another bone marrow biopsy. She is wanting to consider adding another immunosuppressant, but I don’t like any of the options we have at this point. She emailed Dr. Jane Sykes at Davis to get some input from her, and I sent an incredibly long email to Jean and of course still forgot things in it. So frustrating.

Linda, Ashki is on
40mg pred (this specialist is having me try giving it all in the morning, she does this to cut down on nighttime urination; if he doesn’t tolerate that I’ll split it up);
100mg cyclosporine BID;
250mg mycophenolate BID;
250mg metronizadole BID;
10mg enalapril BID;
0.4mg soloxine BID;
1gm sucralfate at night;
18.75mg clopidogrel every other day;
425/35 denamarin SID
0.6 ml B12 weekly

He is on a boatload of additional supplements:
Rx Vitamins Hepatosupport BID
Standard Process Renal Support BID
Standard Process Enteric Support BID
Fish oil 1800mg DHA/EPA
Probiotics
Enzymes
Vit C 250mg BID
B complex SID
psyllium 1 t. SID
Vit E 100mg SID
Calcium carbonate 1 t.
Pet whole food multivitamin

I am not giving him Pet-tinic because his serum iron has been consistently high — a result we think of both bone marrow failure and anemia of inflammation.

I’m coping better. Had a very long talk with a very wise young friend of mine this week. The fact is I can’t control this situation — I can do all I can to support Ashki’s recovery, but I can’t control it beyond that. And Ashki is going to die — whether in a week or in 15 years, or sometime in between, and it will be awful. All I can do is love him and cherish him and take care of him. I do need to do more to take care of myself, I was going to yoga a couple times a week but that has fallen by the wayside, I need to work that in again as it is helpful.

Mary, his retics are good, for him – 30,000 this last week, 0.9%. Sheena, his MCV and MCHC were normal this week. Slight anisocytosis. No change in hemoglobin or RBC, HCT just down. We go back Wednesday for another CBC, I’ll have results Thursday.

love to you all,
tamara and ashki xoxoxo

[admin]

Hi Tamara

I’m going to roughly quote something Patrice told me during my dark, despondent days with Worzel – she talked to her vet & Dr Dodds about Chance not responding & asked when it would the time to stop trying. They both said that there is no such “time”. With humans, you would never “give up”, so why would you give up on your dog? You would continue to try & possibly need to transfuse (only when absolutely necessary).

Just as an example, people with some types of leukemia have to have regular transfusions & they live for years like that. My old dentist lived happily like that for 30 years – I never even knew he had been ill until he mentioned the transfusions! Of course, that would not be what you want for Ashki – you want regeneration & remission. You also need to feel that he’s a happy boy – he is most definitely happy, his quality of life is good (especially because you love him so much) & he is not suffering – these are the most important things in my world.

I don’t know if you know about Dunes, our dear friend Joe’s darling girl that passed last year. She fought this disease for a long, long time & had a great life, even though she never had a stable PCV. Dunes & Joe were (& are) an inspiration to many of us & she proved that you should never give in to this evil disease – dogs are incredibly resilient. I know Dr Dodds was involved in Dunes’s treatment – that is one of the reasons I have such faith in her abilities.

There is no reason why Ashki shouldn’t respond again & I completely agree with your reluctance to add another immuno-suppressant because there is that thought of over-medication in that back of your mind. The specialists are your guide on this, for sure. I know you know there is something underlying here – there has to be – for example, anaemia of chronic disease is often a real pig to deal with in humans – it could be that, or something else, that is keeping Ashki from making a full recovery. I wish I knew what the hell it was & could help you with all my heart. Although strictly “non-regenerative” as defined by retic figures, he is improving on that figure, so that bone marrow is trying hard. The body is so amazing that it will try anything to make red blood cells elsewhere if the marrow is unable to for some reason ( see
https://www.secondchanceaihadogs.com/AIHA_Terms/extramedullary-hematopoiesis/) – I know this is rare, but it happens. Patrice’s Chance was proof of that.

Keep up the good fight, dear friend. I know you will do everything in your power for Ashki. It takes a big toll on your health & stress levels battling with IMHA, so please take very good care of yourself.

Love & cuddles to you both
Sheena, Worzel & Ollie xxxxx

[Vally]

Tamara, I’m sorry to hear that Ashki’s PCV has dropped again. Yes, get that email off to Dr Dodds. Good to have put the pred back up by double. Need some serious pred to kick this back into line again.

Keep us posted.

Lots of love Vally & Bingo

[Tamara]

Thank you Vally. I will definitely.
xoxox
tamara

[admin]

Oh Tamara – sorry to hear about Ashki’s PCV; you must be worried sick. Keep strong and keep fighting

love

Lynda

[admin]

Dear Tamara.

I’m so sorry it isn’t better news yet, but I am sure Dr Dodds will come up with some good suggestions and fingers crossed the metronidazole and increased pred will help. How are his retics looking?

Thinking of you and sending get well hugs. Please do keep us posted.

Loads of love,

Mary and Mable x

[admin]

It’s the wee hours of the morning here and I’m up – fretting about this and that, that I haven’t done for the upcoming holidays. Go figure. It’s a mom, grandmom thing, I guess. Silly.

BUT, in being up, I read your post, and wanted to write immediately. I am so sorry you are going through this. I know this just grabs your heart and head. Can you tell me, not in detail, but quickly the daily dose(s) and what? And what supplements (being tummy, liver, anti-clotting)? Just a quick list?

I know how you feel – I have been down this road with Sadie now, three times – once with the original onset and then two relapses. It will nail you, but Tamara – you and Ashki can do this. Hang in there. Don’t forget to take care of yourself too – some of the best advice I got and continue to get from this wonderful, awesome, loving group/forum.

I wanted to tell you about something that I think has really helped keep Sadie stable and as much as I do believe in this stuff (PetTinic), I had been a bit relaxed about her dosage. This last relapse, mid-October, I e-mailed her prior vet, whom is now doing probably 98% rescue work and has moved out of our area – but we still keep in touch. And, I still think he’s an awesome vet, although through him we weaned too fast the first time, hence the first relapse. But through all this AIHA with Sadie, Dr. Hamilton and I have learned much together and he continues to check on her. But most importantly, he was the one, that upon his immediate, right-on-target diagnosis of AIHA with Sadie at onset, that put her on all the (right and needed) meds (prednisone and Atopica) and the needed supplements (below) AND PetTinic. I thought it interesting too, that Dr. Dodds recommended it too.

So, in his usual checking in on Sadie, I let him know about this last relapse (goodness, she was down to 2.5mg of prednisone daily). I told him we had put her back up to 20mg prednisone and all the usual supplements; Sucralfate – tummy, Denamarin – liver, Clopidogrel – anti-clotting. He immediately asked if Sadie was STILL on PetTinic. You know what – I had actually lowered it and at times, didn’t even give it to her. He said to put her back on it immediately and keep her on it. I did and he PCV started moving up right away.

I am not saying that adding PetTinic is a cure-all, but in reading about Ashki’s lowered PCV – I think NOW is a good time to ask your vet(s) and Dr. Dodds if it would be good for Ashki. I am not sure about this supplement with Ashki’s other problems, but it’s worth asking.

FYI – Two weeks ago, Sadie was holding at a 40ish PCV – holding was good, but she was doing just that, holding. She was still regenerating, so that was good, but not moving up – I thought, so this is going to be her “new” normal – 42 (she was 46 prior to this last relapse). After Dr. Hamilton’s e-mail and upping the PetTinic, maybe it was just timing and perhaps the weaning down on the prednisone (she’s currently weaned down to 10mg daily – 5mg in am and 5mg in pm), but her PCV jumped back up to 46 last Thursday. Goodness – I was just thinking the other day – I hope they continue making this stuff forever! :)

Also, I have some Soloxine, if the vets and Dr. Dodds want to try this with Ashki (although, now may not be a good time to change too much). At any rate – you or anyone else is welcome to it. Please let me know and I’ll mail it. :)

I am thinking of you both and sending much love and huge hugs.

Linda (and Sadie)

[admin]

Hi dear Tamara

I can only imagine the worry & angst you are feeling – not the news you wanted at all. I am relieved you have much knowledge & help around you & am sure they will come up with good, positive ideas.

All I can say is that I am thinking of you & Ashki constantly – this is really unfair. You have a huge amount of support from others on here who have lived through the horrible experience of relapses with their babies, so you know they can get through this & keep on fighting. You are right – the soloxine is very useful as it encourages red blood cell production. Dr Dodds will be looking at this I’m sure. I dearly wish I had the magic answer, Tamara. If you have to “start again” with the treatment, that’s OK. It just means more patience, which is hard to find.

Sending loads of love
Sheena, Worzel & Ollie xxxxx

[Tamara]

Hi all, thank you so much for your love and support. It does help so much to hear of your experience with relapse, Linda. It is discouraging, and yesterday morning I was thinking maybe I just need to accept that he is not responding to treatment, but then later I was going through his labs for the zillionth time and thought, no, he did respond and he will again.

I had a long talk with the specialist last night, going over different options and things to think about. We may do another ultrasound just to check on things; we may talk more about another bone marrow biopsy. She is wanting to consider adding another immunosuppressant, but I don’t like any of the options we have at this point. She emailed Dr. Jane Sykes at Davis to get some input from her, and I sent an incredibly long email to Jean and of course still forgot things in it. So frustrating.

Linda, Ashki is on
40mg pred (this specialist is having me try giving it all in the morning, she does this to cut down on nighttime urination; if he doesn’t tolerate that I’ll split it up);
100mg cyclosporine BID;
250mg mycophenolate BID;
250mg metronizadole BID;
10mg enalapril BID;
0.4mg soloxine BID;
1gm sucralfate at night;
18.75mg clopidogrel every other day;
425/35 denamarin SID
0.6 ml B12 weekly

He is on a boatload of additional supplements:
Rx Vitamins Hepatosupport BID
Standard Process Renal Support BID
Standard Process Enteric Support BID
Fish oil 1800mg DHA/EPA
Probiotics
Enzymes
Vit C 250mg BID
B complex SID
psyllium 1 t. SID
Vit E 100mg SID
Calcium carbonate 1 t.
Pet whole food multivitamin

I am not giving him Pet-tinic because his serum iron has been consistently high — a result we think of both bone marrow failure and anemia of inflammation.

I’m coping better. Had a very long talk with a very wise young friend of mine this week. The fact is I can’t control this situation — I can do all I can to support Ashki’s recovery, but I can’t control it beyond that. And Ashki is going to die — whether in a week or in 15 years, or sometime in between, and it will be awful. All I can do is love him and cherish him and take care of him. I do need to do more to take care of myself, I was going to yoga a couple times a week but that has fallen by the wayside, I need to work that in again as it is helpful.

Mary, his retics are good, for him – 30,000 this last week, 0.9%. Sheena, his MCV and MCHC were normal this week. Slight anisocytosis. No change in hemoglobin or RBC, HCT just down. We go back Wednesday for another CBC, I’ll have results Thursday.

love to you all,
tamara and ashki xoxoxo

[admin]

Hi Tamara

I’m going to roughly quote something Patrice told me during my dark, despondent days with Worzel – she talked to her vet & Dr Dodds about Chance not responding & asked when it would the time to stop trying. They both said that there is no such “time”. With humans, you would never “give up”, so why would you give up on your dog? You would continue to try & possibly need to transfuse (only when absolutely necessary).

Just as an example, people with some types of leukemia have to have regular transfusions & they live for years like that. My old dentist lived happily like that for 30 years – I never even knew he had been ill until he mentioned the transfusions! Of course, that would not be what you want for Ashki – you want regeneration & remission. You also need to feel that he’s a happy boy – he is most definitely happy, his quality of life is good (especially because you love him so much) & he is not suffering – these are the most important things in my world.

I don’t know if you know about Dunes, our dear friend Joe’s darling girl that passed last year. She fought this disease for a long, long time & had a great life, even though she never had a stable PCV. Dunes & Joe were (& are) an inspiration to many of us & she proved that you should never give in to this evil disease – dogs are incredibly resilient. I know Dr Dodds was involved in Dunes’s treatment – that is one of the reasons I have such faith in her abilities.

There is no reason why Ashki shouldn’t respond again & I completely agree with your reluctance to add another immuno-suppressant because there is that thought of over-medication in that back of your mind. The specialists are your guide on this, for sure. I know you know there is something underlying here – there has to be – for example, anaemia of chronic disease is often a real pig to deal with in humans – it could be that, or something else, that is keeping Ashki from making a full recovery. I wish I knew what the hell it was & could help you with all my heart. Although strictly “non-regenerative” as defined by retic figures, he is improving on that figure, so that bone marrow is trying hard. The body is so amazing that it will try anything to make red blood cells elsewhere if the marrow is unable to for some reason ( see
https://www.secondchanceaihadogs.com/AIHA_Terms/extramedullary-hematopoiesis/) – I know this is rare, but it happens. Patrice’s Chance was proof of that.

Keep up the good fight, dear friend. I know you will do everything in your power for Ashki. It takes a big toll on your health & stress levels battling with IMHA, so please take very good care of yourself.

Love & cuddles to you both
Sheena, Worzel & Ollie xxxxx