Relapsing during CyA???

[paulaespada]

Hello!



As many of you may remember my husband had a AA relapse on June 2010, had 2nd ATG + CyA that is on 140 mg/day since ATG.
Until last September he had "normal" values - even for any person. His platelets that always drop first were on 159.
His doctor decreased CyA to 120 mg/day.
Since then, Platelets started to drop and today they are at 103 (in last month dropping more than 10 per week).
Last week his doctor raised CyA to 180 mg/day. But today platelets were 103.
We're upset and worried because we "already saw this film before".
But relapsing during CyA???
We were not expecting this - 18 months ago it was after stopping medication.
Now his doctor says my husband may be resisting CyA.

We live very far away where he has his main doctor.

Some input is welcome. It's always starting over again.
I wonder if this will be fixed some day.
I'm starting to believe that he will have a BMT - he is 48 years old and we don't know if there is any match donor in this world...

I wish you all the best . and Seasons Greatings - for us it will be hugged and crying that's what we have done since yesterday...

[Hopeful]

Hi,

Unless your husband is a very small man, he may be at too low a dosage of cyclosporine. A typical therapeutic dose is 4-5 mg/kg/day. A dose of 180 mg/day would be a typical therapeutic dose for a 45 kg (or 99 lb) person. So perhaps that is why he keeps relapsing??? Perhaps the cyclosporine dosage is too low to make a difference, and he is relying mostly on the ATG effects.

[triumphe64]

I have PRCA which is a little different from AA. But, some of the treatments are the same. I have not had ATG. I have always had prednisone as part of my treatment. As soon as the prednisone was eliminated my red cells fell. I now take a very small amount (1/2 mg every other day) with my other drugs. Even that small amount has a positive effect.

[paulaespada]

Originally Posted by Hopeful

Hi,

Unless your husband is a very small man, he may be at too low a dosage of cyclosporine. A typical therapeutic dose is 4-5 mg/kg/day. A dose of 180 mg/day would be a typical therapeutic dose for a 45 kg (or 99 lb) person. So perhaps that is why he keeps relapsing??? Perhaps the cyclosporine dosage is too low to make a difference, and he is relying mostly on the ATG effects.

Yes, I read the same and I'm more and more confused.
I even emailed Dr. Andrea Bacigalupo (Genoa Hospital, Italy, cientist and author on the European Protocol). I got his answer back that my husband CyA is fine at 120 mg/day. I really don't understand nor don't know what to think more.

[Hopeful]

What is his trough measurement? Perhaps his body isn't clearing it out rapidly and that is why he is on such a low dose. Is he tolerating it well?

Dr. Andrea Bacigalupo is a world renowned expert. Has your husband been seen by him in person? If you haven't officially seen him, I doubt he would question another doctor's protocol without knowing more about your husband's individual case.

[paulaespada]

Originally Posted by Hopeful

What is his trough measurement? Perhaps his body isn't clearing it out rapidly and that is why he is on such a low dose. Is he tolerating it well?

Dr. Andrea Bacigalupo is a world renowned expert. Has your husband been seen by him in person? If you haven't officially seen him, I doubt he would question another doctor's protocol without knowing more about your husband's individual case.

My husband tolerates CyA without problems. Trough measurement was what established dosis at 140 mg/day.

More than 1 year ago I emailed Dr. Andrea Bacigalupo and 2 more (1 at Spain and 1 at UK). All renowned. From UK I never had an answer. I was telling them that we'd go to consult them. Both from Spain and Dr. Bacigalupo (Italy) were very kind and have beeing guide telling "don't come, I'll guide you from here". Well, his answer was, now: "Dear Paula

The counts of your husband are fine
He should continue CyA 60 mgx2 /day
Keep me informed
All the best"

Which is a dosis lower than my husband has.

Anyway, we have decided that if Jorge is relapsing again, we'll have other opinion. Jorge trust his doctor, maybe too much and I must told him that that trust can't jeopardize his life.

I'm still confused and preparing to other "saga" but considereeing other Hospital.

Jorge doctor told something about him being CyA "resisting" or "dependent". Has you or anyone heard about it?

[Hopeful]

I've never heard of cyclosporine resistance. Cyclosporine dependency is not that unusual though.

I think consulting with another doctor in person for a second opinion would be wise. My doctor told me (as I was tapering) that 2mg/kg/day was the *minimum* therapeutic dosage for cyclosporine. Unless your husband weighs 60 kg or less, he is below this dosage while taking 120 mg/day.

Has your husband been sick recently, had surgery, or anything else that would challenge his immune system?

[paulaespada]

Although I'm quite afraid of acknowleding it, I had to confront my husband with your posts and scientific evidence - he relies too much on me but now is becoming a burden.
I'm quite sure you're right. My husband is in a low dosage.
He is 85 Kg.

I don't understand why dr. Andrea answered that while he writes the opposite. This has been a crazy whirlpool.

We must hear other opinion - anyway, 2 ATG's and CyA are very serious and haven't prevent relapse because of a stupid low dosis and my husband refusing to see what is going on.

I'm sorry I may aparent anger. I am!
His doctor is afraid of CyA and doesn't hear what I ask and tell. And my husband prefers to don't see. It has been too much because his answer to ATG is great and then cyclosporine dosis is low. That's quite stupid. I feel drained.

Thank you for your advice.

[paulaespada]

Hello,


It's me again.

I'm so sorry to vent so strongly yesterday.
Of course I was mad with life, Jorge and his doctor. Not anyone else!

My husband position of denial and blind confidence in his doctor has brought us too far.
I had to confront him with literature and he decided to go to other hospital to a second opinion.

I'm very grateful for Marrowforums and for your guidance. Thank you Hopeful!

[Karenish]

In the UK I weigh 15stone (not sure what that is in kg - let me see if the internet can help).....ok 95kg
my cyclo is 200mg twice a day so 400mg per day in total - this is the standard dose following our UK protocol. Your husband needs to up his dosage I think. good luck x

[paulaespada]

Originally Posted by Karenish

In the UK I weigh 15stone (not sure what that is in kg - let me see if the internet can help).....ok 95kg
my cyclo is 200mg twice a day so 400mg per day in total - this is the standard dose following our UK protocol. Your husband needs to up his dosage I think. good luck x

Thank you very much!
How long are you taking it?
Indeed it must be done. The highest dosis he had, during ATG was 300 mg perday (150+150).
We're waiting for a second opinion in Lisbon - hopefully before he totally relapse again.
Doctor in the local hospital doen't want to assume - AA is treated at 4 hospitals in the country and we live in the Azores (in the middle of Atlantic).
Some communications are made in order he'll be sent to a second opinion in Lisbon. Even if go at our expenses.
I will keep you updated.
Thank you very much!

[Karenish]

I have been on cyclo now since ATG in Feb of this year, so nearly a whole year....counts are just beginning to climb now, so I can safely presume I will be on it for another year yet. good luck, you do need specialists in this disease, its so different for everyone. xxx

[paulaespada]

Originally Posted by Karenish

I have been on cyclo now since ATG in Feb of this year, so nearly a whole year....counts are just beginning to climb now, so I can safely presume I will be on it for another year yet. good luck, you do need specialists in this disease, its so different for everyone. xxx

We are waiting for a second opinion.
It's sad to see how my husband goes through ATG (5 days course and 3 weeks at the hospital) without any problems, recovers normal CBC (both times) and then relapses.
Only in this forum I was told by Helpful that his dosis may be too low - then I started to search and yes, too low.
Isn't it completely crazy???