Posts: 27
Threads: 4
Joined: Jan 2016
Gender: Female
Location: UK
Treatment: fumaderm
I am sure Fumaderm is safe for most people but I wonder if long term tests have been done on elderly people?
My husband started Fumaderm in the Summer after being taken off ciclosporin due to blood tests results which I think was poor kidney function.
Today he has visited a nephrologist, after blood and protein was found in his urine. The Nephrologist has taken him off the Fumaderm because he thinks it has affected the kidney function which is down to 50% - my husband is 77.
He will write to the Dermatologist because he is aware that the psoriasis may well flare up again.
Frankly I am horrified. He was kept on the high dose of 6 a day, although I did ask if we could try to taper if off. He had fortnightly blood tests so am amazed this was not picked up earlier. I just hope his kidney function recovers. Surely it will if he is take off the tablets and they are the cause unless they have been damaged to an extent that they do not recover.
He has to see the Nephrologist again in 6 weeks unless the blood tests taken today indicate otherwise.
I wonder what other options he has left? Obviously Ciclosporin and Fumaderm appear not to be options. He has tried acitretin and that did not work. Infusions were mentioned if the Fumaderm did not work and it looks like we may have to go down that route.
I am not being critical about Fumaderm - it worked well and his legs are clear but the loss of kidney function does really worry me especially as it has not been picked up until now? Could it has happened suddenly? Apparently the kidney function was normal in May......
BTW I was Quish16 originally but forgot my password so re registered! Thanks for reading.....just feeling very concerned frankly.
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
Hi again ... They are right to stop the Fumaderm if the kidney function has dropped. It's not worth putting extra strain on the kidneys, and there may be some recovery but at 55% is not dangerous as long as it stays at that level....and doesn't continue to drop.
I have no idea why the function has dropped since May ....( do you know the % of function back then? ) but there could be other factors involved ..
How long was he on maximum dose? ....the idea of Fumaderm is you get to clearance and then reduce the dose to a level where psoriasis starts to reappear then up the dose by one tablet as a maintenance dose
I don't honestly think age matters much with Fumaderm ...but I stand to be corrected
But I hope they find the cause of the problem, and you get him onto one of the biological drugs, which may help him with the psoriasis
Jim
Posts: 27
Threads: 4
Joined: Jan 2016
Gender: Female
Location: UK
Treatment: fumaderm
Well I am getting things second hand but as far as the consultant told my husband his function was 'normal' in May but is now 50%. The Dermo Consultant is due in the local hospital next Tuesday so I shall phone him and ask if he can suggest anything - next appointment 22nd April.
I am still amazed blood tests did not pick this up.
Yes, I know that the Fumaderm should be decreased and the dose that should be prescribed should be the lowest possible to control the psoriasis. However, Dermatologist seemed to want to keep him on 6 a day - he had reached that level in October last year. I did negotiate and he agreed to let him try 5 a day, and I was going to suggest in April that if we had no flare ups, we could take it down to 4. In fairness, the psoriasis was very bad so I do understand the dermo's caution. ( I breed cats and I know with potentially toxic drugs long term, our aim is to keep the cat on the lowest dose that gives 'quality of life' and it can be real trial/error to find that dose).
You are right - it may well be something else too. He has to see a Urologist - appointment due yesterday but cancelled due to machine not working so hopefully it will come through soon. The blood and protein in the urine ddid seem to concern the Dermo and the Urology and the Nephrology appointments were instigated by him.
So I guess we wait and pray that the flare up does not happen too badly too quickly...
Have you any idea how long Fumaderm stays in the system?
Thanks for your reply - I am feeling somewhat as if I am going round in circles!
Posts: 71,228
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Joined: Aug 2011
Gender: Male
Location: France
Psoriasis Score: Zero
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
(Tue-15-03-2016, 12:51 PM)krug22 Wrote: BTW I was Quish16 originally but forgot my password so re registered!
*If you forget your password again please don't re register as it could cause problems and possibly get your email blacklisted.
There is a thread to explain how to retrieve a new password here: [thread=1076]
Or you can use the "Contact Us" form which you can find at the bottom of the page far left.
I have deleted your other account so as not to confuse the software and avoid problems with your new account.
Fred.
Posts: 27
Threads: 4
Joined: Jan 2016
Gender: Female
Location: UK
Treatment: fumaderm
Sorry Fred and thank you - won't do it again. Sorry if I put you to any trouble.
Posts: 9,829
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Joined: Aug 2014
Gender: Female
Location: GA
Psoriasis Score: 3
Treatment: Clobetasol Topical
I understand your concerns and it does seem odd that nothing showed up until he was at 50%. You'd think they would have noticed a decrease in function sooner, but I don't know how that all works. I wish you the best and hope you get answers and a treatment that helps.
Posts: 71,228
Threads: 4,130
Joined: Aug 2011
Gender: Male
Location: France
Psoriasis Score: Zero
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
(Tue-15-03-2016, 13:52 PM)krug22 Wrote: Sorry Fred and thank you - won't do it again. Sorry if I put you to any trouble.
You're welcome. No it's no trouble for me.
It's just that the system has a lot of built in anti spam measures and it could have caused problems for you, and I may not have know about it.
Posts: 28,480
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Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
The MMF in Fumaderm, monomethylfumarate, is mentioned in literature that it can affect the kidneys.
Therefore here in NL we have a version with only DMF.
There seems to be no reason that DMF is age limited, at least I have never heard of it.
Posts: 1,471
Threads: 42
Joined: Jun 2013
Gender: Male
Location: USA
Treatment: >_<
Cyclosporine is notorious for damaging the kidney. Just wondering if damage was done. Could be why the DMF may be effectiving the kidney. It may be worth asking about biologics since they are different type of treatment compared to most pills.
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
Kidneys can keep the body working at above ~25% of normal capacity. You have said that the cyclosporin was ceased due to kidney damage. What interval was there between ceasing the cyclosporin and commencing Fumaderm? Also, was your husband advised to take plenty of fluids with his Fumaderm? I ask this because I get very thirsty several hours after taking DMF unless I take it with plenty of fluids.
As Caroline pointed out, monoethyl fumarate is nephrotoxic, but so is DMF, so any fumaric ester needs careful monitoring, and it looks like this was done. Kidney damage from Fumaderm tends to be reversible if picked up early, and it sounds like it was.
Best wishes.