Fumaderm long term - proteinuria?

[krug22]

Hello

Back again on behalf of my 77 year old  husband, desperate for help and to find out if anyone has had anything similar experience wise. Fumaderm started in July and built up to full dose - 2x monthly blood tests - took a while, but the psoriasis did subside. In October consultant found blood in urine and sent us to the GP who thought it was an infection. Saw  consultant on 9th and again blood in the urine.  He then said he would refer to a haematologist. I then got a letter yesterday saying my husband had been referred to the Nephrology Team and the Heamaturia Clinic - the figure from the Urinalysis PCR showed protein to creatine ratio 72 - I think it should be below 30? My husband also has anaemia and low sodium.
I was somewhat surprised to read that proteinuria is a very rare side affect of Fumaderm. The Dermo has asked the Clinic Consultant Nephrologist if my husband should continue to take the Fumaderm but has said to stay on it until he hears back. I am concerned because my husband also has Lupus which I think puts him at higher risk anyway of kidney problems yet I do not want him to come off the Fumaderm unless really necessary.
GP is also suggesting a bladder scan - he also did extra tests on Tuesday for something but laughingly said he would not tell me what he was testing for because I would only 'google it'. !!!! My husband is 77 and weighs less than 8st - lost 3st since the Summer so I do not honestly think I am being neurotic. These test results seem to suggest a potential kidney problem to me! Also the blood test end of December showed a borderline Urea result and that is the one the GP wanted re tested. I am struggling to try and work out how these medical people work together and who is responsible for what! I guess I just wait for the appointments to come through and take it from there? I cannot easily go with my husband although he is quite deaf, because the ambulance service won't take me and a taxi would be £70 return. I think I will phone when I get the appointments and ask exactly what is going on because if he does have kidney disease and advice is given on how to manage it, I think I may well need to be there with him. Sorry for rant - basically I know some of you have been on Fumaderm long term and wondered how common this is or could it even be totally unconnected and more likely due to the Lupus. On the bright side, maybe the consultant is just being cautious and if there is kidney disease it is very mild. Thanks for reading.

[jiml]

Hello

Back again on behalf of my 77 year old  husband, desperate for help and to find out if anyone has had anything similar experience wise. Fumaderm started in July and built up to full dose - 2x monthly blood tests - took a while, but the psoriasis did subside. In October consultant found blood in urine and sent us to the GP who thought it was an infection. Saw  consultant on 9th and again blood in the urine.  He then said he would refer to a haematologist. I then got a letter yesterday saying my husband had been referred to the Nephrology Team and the Heamaturia Clinic - the figure from the Urinalysis PCR showed protein to creatine ratio 72 - I think it should be below 30? My husband also has anaemia and low sodium.
I was somewhat surprised to read that proteinuria is a very rare side affect of Fumaderm. The Dermo has asked the Clinic Consultant Nephrologist if my husband should continue to take the Fumaderm but has said to stay on it until he hears back. I am concerned because my husband also has Lupus which I think puts him at higher risk anyway of kidney problems yet I do not want him to come off the Fumaderm unless really necessary.
GP is also suggesting a bladder scan - he also did extra tests on Tuesday for something but laughingly said he would not tell me what he was testing for because I would only 'google it'. !!!! My husband is 77 and weighs less than 8st - lost 3st since the Summer so I do not honestly think I am being neurotic. These test results seem to suggest a potential kidney problem to me! Also the blood test end of December showed a borderline Urea result and that is the one the GP wanted re tested. I am struggling to try and work out how these medical people work together and who is responsible for what! I guess I just wait for the appointments to come through and take it from there? I cannot easily go with my husband although he is quite deaf, because the ambulance service won't take me and a taxi would be £70 return. I think I will phone when I get the appointments and ask exactly what is going on because if he does have kidney disease and advice is given on how to manage it, I think I may well need to be there with him. Sorry for rant - basically I know some of you have been on Fumaderm long term and wondered how common this is or could it even be totally unconnected and more likely due to the Lupus. On the bright side, maybe the consultant is just being cautious and if there is kidney disease it is very mild. Thanks for reading.

Hi Krug and welcome back although I don't recognise the name I remember reading of your husbands case, maybe you have reregistered,
Anyway the important thing is that you have returned

I have been on Fumaderm for over four years now and it hasn't affected my kidneys , however saying that does not mean it isn't affecting  your husbands although blood in the urine is usually a sign of something else

It does say on the Fumaderm leaflet ( see here Fumaderm leaflet ) if serum creatinine levels are increased above the normal range that the tablets should be stopped

But his medical team seem to have that covered and I would imagine it's something else .... But that is just my opinion

I would explain to the hospital that as his carer you need to attend with him and need transport with him, that should be doable in this day and age

I wish your husband good luck and will say he's very lucky to have you looking after him and investigating his problems
Jim

[krug22]

Thanks Jim - I had problems with my BT email so ended up having to re register. I am probably just being over cautious and I am not against Fumaderm - just worried about the high dose given my husbands age and his co morbidities. We visit the Consultant at the local hospital which is a £10/£!2 taxi and we are fine about that - ditto blood tests at the local hospital and GP surgery  but £70 is a little steep for us right now unless I felt I would really get somewhere and learn something about what is going on.

[jiml]

Thanks Jim - I had problems with my BT email so ended up having to re register. I am probably just being over cautious and I am not against Fumaderm - just worried about the high dose given my husbands age and his co morbidities. We visit the Consultant at the local hospital which is a £10/£!2 taxi and we are fine about that - ditto blood tests at the local hospital and GP surgery  but £70 is a little steep for us right now unless I felt I would really get somewhere and learn something about what is going on.

Just to say I'm no spring chicken I'm pushing 69 in a couple of months

I agree £70 is a lot to visit a hospital. I don't have an answer to that

But do return and let us know how you get on

Come back often if only to chat

[Fred]

I had problems with my BT email so ended up having to re register.

If you ever get any problems with your log in details please don't hesitate to contact me here or by the "Contact Us" button bottom left as I can save you having to register again.

It's not recommended to register two accounts without letting us know as I do sometimes ban people with two accounts and delete the accounts.

But in this case I have made a note and will leave your other account open.

Fred.

[Caroline]

Thanks Jim - I had problems with my BT email so ended up having to re register. I am probably just being over cautious and I am not against Fumaderm - just worried about the high dose given my husbands age and his co morbidities. We visit the Consultant at the local hospital which is a £10/£!2 taxi and we are fine about that - ditto blood tests at the local hospital and GP surgery  but £70 is a little steep for us right now unless I felt I would really get somewhere and learn something about what is going on.

Unfortunately Krug, I have some less good news.
It is possible to get kidney problems while using Fumaderm. This is because of the way Fumaderm is compounded together. It contains MonoEthylFumarate. This has the advantage of having a quicker reaction with Fumaderm, but has a disadvantage that it is toxic for your kidneys. Basically it is of no use for the psoriais. This has all been investigated in the Netherlands.
Therefore in the Netherlands a version of DMF without the MEF has been developed.

[jiml]

Thanks Jim - I had problems with my BT email so ended up having to re register. I am probably just being over cautious and I am not against Fumaderm - just worried about the high dose given my husbands age and his co morbidities. We visit the Consultant at the local hospital which is a £10/£!2 taxi and we are fine about that - ditto blood tests at the local hospital and GP surgery  but £70 is a little steep for us right now unless I felt I would really get somewhere and learn something about what is going on.

Unfortunately Krug, I have some less good news.
It is possible to get kidney problems while using Fumaderm. This is because of the way Fumaderm is compounded together. It contains MonoEthylFumarate. This has the advantage of having a quicker reaction with Fumaderm, but has a disadvantage that it is toxic for your kidneys. Basically it is of no use for the psoriais. This has all been investigated in the Netherlands.
Therefore in the Netherlands a version of DMF without the MEF has been developed.

I agree Caroline but it is rare I believe and the tests may show if it's the fumaderm or some other condition causing the kidney problems
I guess the easiest way to tell is to stop the treatment and see if the kidney improves

[ccarr06]

Hi Krug,

I haven't been on this site much, so I'm only seeing this thread now.

I also have proteinuria. For me, it turned out to be a kidney disease called IGA Nephropathy. According to the nephrologist, there is a small link between the 2. I'm also on fumaderm, and it was because of constant blood and urine checks that it was caught. As of now, I'm waiting to go back to my dermatologist and see if I can stay on the medication. The nephrologist didn't seem to this it would be a problem.

Fumaderm is rarely the cause of kidney problems according to the nephrologist I spoke to. If it doesn't change when you reduce the dose, chances are it's something else. My advice, is to push to see a nephrologist. They can give you the proper answer to what's causing it.

Hope your husband finds the answers to this.

CC