Fumaderm and kidney problems

[krug22]

Well as soon as the kidney damage was picked up via the cyclosporin, he was put on the Fumaderm starting on the lowest dose and blood tests were done every 14 days. There was an interval of around 14 days wait for the Fumaderm because it had to come from Germany. We gradually built up to the higher dose and the consultant did not seem to wan to reduce it when I saw him in January although we did. 
I am amazed that the damage was not picked up sooner via the blood tests. But maybe it is easier to pick up in aurine test? To be fair, the consultant found blood in the urine last year and sent my husband to the GP but the GP re rested and said that there was no blood. The Consultant re tested in January and sent off for analysis and found blood and protein, hence referral to the Nephrologist and the Urology Department.
At the moment, I am trying to contact the Consultant because I feel that 22nd April too  long to wait without any medication for the psoriasis. But I do feel Eric is very limited to what can be used. I do hope he gets some kidney function back now he is off the tablets. I am not sure if the Ciclosporin has caused lasting damage. It is very difficult because my husband is 76 and I did not go to the Nephrology app with him - ambulance won't take me and he is rather deaf. I do go to the Dermo app as it is at our local hospital and much easier to get to. How reliable are blood tests when it comes to kidney damage being detected?
Well thanks for your comments - reassured that many people cope well with Fumaderm but sadly my husband is one that can't!

[Bill]

Thank you so much. As a user of DMF I am very interested in avoiding problems, but I scratch my head wondering why the damage from the cyclosporin was not properly evaluated and why fumaderm was started straight away. From the guidelines that I found:

<FAE therapy is contraindicated in patients with severe concomitant conditions including severe or chronic gastrointestinal disease or kidney disease, >

and

<Current guidelines recommend a gradual increase in oral FAE dose to determine each patient's maximum tolerable dose, and advise against concomitant use of topical fumaric acid derivatives to avoid exceeding the maximum dose through percutaneous absorption.[74,75] When used according to these guidelines in controlled clinical trials, no nephrotoxicity has been observed.[74,87] Nevertheless, sufficient fluid intake should be encouraged during FAE therapy,[75,82] and renal function should be monitored throughout treatment.>

So I am of the opinion that the damage was caused by cyclosporin and the Fumaderm was used against the guidelines. However, plenty of testing was done and treatment was ceased as soon as a problem was found. It may be a case of Fumaderm being the only drug available that did not entail long NHS waiting times as Grizzly has been unhappily enduring. Jim has been on Fumaderm for several years with great results and no harm, yet the guidelines I read would have excluded him from treatment also!

Thanks again for sharing your information and I hope all goes well.

[krug22]

Thank you so much. As a user of DMF I am very interested in avoiding problems, but I scratch my head wondering why the damage from the cyclosporin was not properly evaluated and why fumaderm was started straight away. From the guidelines that I found:

<FAE therapy is contraindicated in patients with severe concomitant conditions including severe or chronic gastrointestinal disease or kidney disease, >

and

<Current guidelines recommend a gradual increase in oral FAE dose to determine each patient's maximum tolerable dose, and advise against concomitant use of topical fumaric acid derivatives to avoid exceeding the maximum dose through percutaneous absorption.[74,75] When used according to these guidelines in controlled clinical trials, no nephrotoxicity has been observed.[74,87] Nevertheless, sufficient fluid intake should be encouraged during FAE therapy,[75,82] and renal function should be monitored throughout treatment.>

So I am of the opinion that the damage was caused by cyclosporin and the Fumaderm was used against the guidelines. However, plenty of testing was done and treatment was ceased as soon as a problem was found. It may be a case of Fumaderm being the only drug available that did not entail long NHS waiting times as Grizzly has been unhappily enduring. Jim has been on Fumaderm for several years with great results and no harm, yet the guidelines I read would have excluded him from treatment also!

Thanks again for sharing your information and I hope all goes well.

[jiml]

So I am of the opinion that the damage was caused by cyclosporin and the Fumaderm was used against the guidelines. However, plenty of testing was done and treatment was ceased as soon as a problem was found. It may be a case of Fumaderm being the only drug available that did not entail long NHS waiting times as Grizzly has been unhappily enduring. Jim has been on Fumaderm for several years with great results and no harm, yet the guidelines I read would have excluded him from treatment also!

I'm inclined to agree with Bill that your husband probably should not have been started on Fumaderm if ther was already taken of one drug ( cyclosporine ) because it was damaging his kidneys

@ Bill I can't see any reason I should not have started on Fumaderm ......please enlighten me

[krug22]

In fairness Bill, I feel Fumaderm was a last resort approach as Acetretin did  not control it and Cyclosporin caused problems. The Dermo was suggesting injections and indeed sent my husband for the pre tests necessary in case the Fumaderm did not work. My only reservation with the treatment was why he was allowed to stay on such a high dose and not weaned off although we did take it down to 5 a day instead of 6 in January. But his psoriasis was very very bad with frequent infections...so I guess it was a loss/gain analysis. But yes I do worry that it was not picked up in the blood tests.  When we had problems with the Ciclosporin the Dermo asked us what we wanted to do and I asked if it was worth trying a lower dose- with feline medicine, we try the very lowest dose of potentially toxic medication to keep the sypmtons under control. The Dermo agreed, but blood tests did not improve so he had no choice but to take my husband off it. But the fact he asked us what we wanted to do, suggested that there was no easy answer.....but please remember Eric is 77 and with the anemia may well have other co-morbidities so Fumaderm may well be a great drug for most people.

[Caroline]

So I am of the opinion that the damage was caused by cyclosporin and the Fumaderm was used against the guidelines. However, plenty of testing was done and treatment was ceased as soon as a problem was found. It may be a case of Fumaderm being the only drug available that did not entail long NHS waiting times as Grizzly has been unhappily enduring. Jim has been on Fumaderm for several years with great results and no harm, yet the guidelines I read would have excluded him from treatment also!

I'm inclined to agree with Bill that your husband probably should not have been started on Fumaderm if ther was already taken of one drug ( cyclosporine ) because it was damaging his kidneys

@ Bill I can't see any reason I should not have started on Fumaderm ......please enlighten me  

Indeed, I don't get Bills remark either.

[Caroline]

In fairness Bill, I feel Fumaderm was a last resort approach as Acetretin did  not control it and Cyclosporin caused problems. The Dermo was suggesting injections and indeed sent my husband for the pre tests necessary in case the Fumaderm did not work. My only reservation with the treatment was why he was allowed to stay on such a high dose and not weaned off although we did take it down to 5 a day instead of 6 in January. But his psoriasis was very very bad with frequent infections...so I guess it was a loss/gain analysis. But yes I do worry that it was not picked up in the blood tests.  When we had problems with the Ciclosporin the Dermo asked us what we wanted to do and I asked if it was worth trying a lower dose- with feline medicine, we try the very lowest dose of potentially toxic medication to keep the sypmtons under control. The Dermo agreed, but blood tests did not improve so he had no choice but to take my husband off it. But the fact he asked us what we wanted to do, suggested that there was no easy answer.....but please remember Eric is 77 and with the anemia may well have other co-morbidities so Fumaderm may well be a great drug for most people.

It might have been better to order Psorinovo from the Netherlands. It has several advantages over Fumaderm. One of them being no MMF in it, which is known to be toxic.
You could say that it is not in the guidelines, but over here in NL we order in fact the working substance, so ordering Fumaderm, Psorinovo or others DMF variant which exist over here with us, is all ok and covered by the insurance.

[Bill]

I think that your husband is getting an excellent standard of care. It is a horrible disease and no treatment is without risk. Regarding the dosage, I was on the six a day equivalent and it was not strong enough, so I had to change my regime. Like any drug, if you dont take the right dosage it does not work.

Jim, it is hardly the OED, but it stated:

<Although there has been no evidence of an increased risk of malignancy in patients receiving FAE therapy for psoriasis, current guidelines advise against treatment of patients with malignant diseases or a history of malignancy>

Cheers,

Bill

[jiml]

I think that your husband is getting an excellent standard of care. It is a horrible disease and no treatment is without risk. Regarding the dosage, I was on the six a day equivalent and it was not strong enough, so I had to change my regime. Like any drug, if you dont take the right dosage it does not work.

Jim, it is hardly the OED, but it stated:

<Although there has been no evidence of an increased risk of malignancy in patients receiving FAE therapy for psoriasis, current guidelines advise against treatment of patients with malignant diseases or a history of malignancy>

Cheers,

Bill

I won't take this thread further but Bill read this and answer there thanks RE: Fumaderm and hormone injections

[mataribot]

I think that your husband is getting an excellent standard of care. It is a horrible disease and no treatment is without risk. Regarding the dosage, I was on the six a day equivalent and it was not strong enough, so I had to change my regime. Like any drug, if you dont take the right dosage it does not work.

Jim, it is hardly the OED, but it stated:

<Although there has been no evidence of an increased risk of malignancy in patients receiving FAE therapy for psoriasis, current guidelines advise against treatment of patients with malignant diseases or a history of malignancy>

Cheers,

Bill

Excellent standard of care? Who gives an elderly patient with an already suppressed immune system one of the most immunosuppressive drug on the planet? Cyclosporine has a host of problems and can only be used for a year at max. Why bother?