Fumaderm after Ciclosporin

[Closed account 1259]

I am posting on behalf of my 76 year old husband. We are having a lot of problems controlling the psoriasis although we are seeing the dermatologist on a regular basis. Ciclosporin did work but sadly blood tests showed that it also affected the liver and kidney function. The Doctor then tried reducing the dose but this did not help. My husband has been started on Fumaderm and took his first tablet on Wednesday night. He felt very sick today but I realise that this might be a side affect and am going to encourage him to keep taking it. He is still on Acetretin because the dermo felt he needed the overlap to prevent flare ups. I would say that the flare ups have been very bad and he has had to have antibiotics due to the infections. He is having a lot of problems walking due to the skin on his heels peeling.
I just wondered how others coped with Fumaderm?  The Dermo did say that around a  third of people have to come off it due to the side affects.....
If it does not work, the next option is injections but my husband is very against these. Also he has anaemia which is being investigated and the dermo wanted to find the cause of the anaemia before going down this route. He also has Lupus which is thankfully dormant at the moment. I do now understand that some of the medications initially used to treat the Lupus may well have made the psoriasis worse or even sparked it.
Thank you for reading. I do feel very out of my depth trying to help my husband - I am his carer, and he does get quite depressed at times especially when he is really struggling to walk or get his shoes on.

[jiml]

I am posting on behalf of my 76 year old husband. We are having a lot of problems controlling the psoriasis although we are seeing the dermatologist on a regular basis. Ciclosporin did work but sadly blood tests showed that it also affected the liver and kidney function. The Doctor then tried reducing the dose but this did not help. My husband has been started on Fumaderm and took his first tablet on Wednesday night. He felt very sick today but I realise that this might be a side affect and am going to encourage him to keep taking it. He is still on Acetretin because the dermo felt he needed the overlap to prevent flare ups. I would say that the flare ups have been very bad and he has had to have antibiotics due to the infections. He is having a lot of problems walking due to the skin on his heels peeling.
I just wondered how others coped with Fumaderm?  The Dermo did say that around a  third of people have to come off it due to the side affects.....
If it does not work, the next option is injections but my husband is very against these. Also he has anaemia which is being investigated and the dermo wanted to find the cause of the anaemia before going down this route. He also has Lupus which is thankfully dormant at the moment. I do now understand that some of the medications initially used to treat the Lupus may well have made the psoriasis worse or even sparked it.
Thank you for reading. I do feel very out of my depth trying to help my husband - I am his carer, and he does get quite depressed at times especially when he is really struggling to walk or get his shoes on.

Hi Quish and to the forum you have come to a great place for support it is always available here for sufferers, and their carers of course . Psoriasis can cause depression as it is a very unpleasant disease to have and most of us have been depressed because of it . So your predicament is well understood here

We as a forum/club have a small and friendly bunch of sufferers always ready with a word of support or advice ...so never feel out of your depth again because we will help you with as much advice as possible

You do say your husband has anaemia already so knowing his lymphocyte count is quite important
As fumaderm and cyclosporine can cause your lymphocyte count to drop ... But I wouldn't be too concerned with that. As long as your dermatologist is doing regular blood tests
I'm assuming he is on the 30mg White tablets which are called fumaderm initial .... I'm surprised that the first one made him feel very sick ...
But yes if he can get over the initial side effects the drug is very good at controlling the psoriasis long term ...for me it has been 4 years virtually clear ( there's always a little spot somewhere to remind me I have it)
Ask away here with any questions we have several members on fumaderm and other dmf type treatments ...so you should get answers

Welcome again and don't feel out of your depth we are all in the same boat  
Jim

[Caroline]

Hi Quish,

Welcome to Psoriasisclub.

I see Jim has sent you a welcome already, with some hopefully interesting information for you.

The way you husband is feeling sick should be in the form that he may have some cramps in the belly. That is the most annoying for people who start with Fumaderm. You have to get through this.
Also he may suffer a so called flush, he will become red and hot on his skin, starting with his head. This might last for 20-30 minutes and than it will be gone. You may feel a bit of nausea then, but that will finish quite quickly.

If your husband feels different please tell us what he feels.

The lymphocyte count is important, but your derm knows this and he should keep an eye on that.

There may be some interaction between Acetretin and Fumaderm, do you already have a build down schedule for Acetretin?

Please feel free to ask anything. If we know it, we will point you to possible options.

Caroline.

[Closed account 1259]

Thanks Jiml and Caroline - very touched by your replies. The Lymphocyte count was 0.68 in June which I realise is low. Not sure what latest is, but he has to have more blood tests after 2 weeks. I think we see the dermo in a month and then he will discuss weaning down the acitretin but he was very insistent that Eric keeps taking it initially - I did check this. The psoriasis is quite bad on his legs and I know the dermo wants to try and avoid a flare up - the acitretin is only just keeping it under control.
He also has to have more tests and an endoscopy to try and rule out anything sinister such as internal bleeding - he has lost over 2st in weight but initially we put this down to the ciclosporin which caused a loss of appetite.
I do find it frustrating that GP's and Consultants do not talk to one another! We do have a long wait to see the Dermo so I now ask nurse to send copy of blood tests to the GP in case there is anything sinister. I know that the creatine was dangerously high on the Ciclosporin to the extent that the GP told us to stop taking it immediately and that he would fax the Dermo. He duly did but the fax 'went missing' and Dermo never got it. He does a lot of private work so in fairness, is not at the hospital that often. So frankly, if blood tests are bad, not sure I would trust the Dermo to pick it up quickly! I do realise that with some of these medications the side affects can be quite bad, especially given Eric;s age and co morbidities but the various creams did not do anything!
At the last appointment, Eric's file was 'missing' - it was at the infirmary where he saw the specialist for the anaemia investigations! I sort of hoped the blood tests would be on the computer?
Yes, we start on a tablet a day for a week, then 2 tablets, then 3, then we go onto the higher strength ones.
I will see if I can encourage him to at least have a quick look at this site - it would really help him I think. 
Thank you again, just knowing others are going through what Eric is going through really helps.

[jiml]

No need for thanks I'm just glad you found us and we will offer support and advice any time. If you can get Eric to read some of the things on here I'm sure that will reassure him .
With regard to age I'm not that far behind him at 68 and I would not be without the support this site has given me
0.68 is a low reading and I'm not sure if the dermatologist should keep him on (is he on Acetretin or cyclosporine) and Fumaderm at the same time with his lymphocyte count being low (normal between 1-3) but with both drugs in his system it will be difficult to decide which one is pulling the count down and he may blame Fumaderm when it's the Other drug  ...
I wish him luck with his endoscopy ( had one a couple of months ago ) do ensure you have bloods done very regularly as you don't want them to get dangerously low. It seems as if you have more idea than your dermo
And I'm sure you will keep an eye on levels as the health service seems poor as it keeps  losing your  information

[Caroline]

Hello Quish,

Lymphocytes are always difficult. As they seem to differ over countries in the sense that a different measurement is chosen. At least it is not consistent.

Mine were the last 1,5 years, 0.5, 0.6, 0.7, respectively on 6x 120mg of DMF (the active ingredient of Fumaderm)

The absolute lowest value is 0.2. If you measure that you immediately have to stop the medication otherwise you have a risk on lymphocytus which can cause PML.

You did not answer my questions yet on how Eric feels the side effects. Maybe you can describe them?

The problems with "documentation" in hospitals is known to me.. With the increasing number of computers, that should maker everything better, it only got worse. The dossier under your arm with all your information is still the best.


Eric should feel free to read and chat on the forum. We are all very kind people and would like to chat with him.

Cheers,
Caroline

[Closed account 1259]

Eric is still in bed Caroline but I will ask him how he feels - he basically said he felt as if he wanted to be sick and felt dizzy but I agree if he has only had 2 pills it seems a little soon? But I will try to get him to at least  look at this site - third person is quite  hard because I am trying to explain how HE feels - be much easier if he would do it directly to this group . I wonder if anyone on here has Lupus and Psoriasis? I know it is a challenge for the Dermo because light therapy could re activate the lupus? Don't worry I have learnt that I have to be pro active to get the best from the NHS - sadly most of the people are lovely and do their best but the system does reduce me to tears of frustration at times....

[Closed account 1259]

To give you some background, I have no medical training but I do breed cats and have had pedigrees since 1994. So I am used to googling and challenging vets. I am ok about asking for blood test results. I did say to Eric's Gp that if he were one  of my older neuters the weight loss and the anaemia would indicate internal bleeding/liver/kidney problems but it must be different with humans? He was actually really lovely and said it wasn't really and this worried me dreadfully although I do appreciate that he was honest. I have no problems with the GP - he really does do his best and I can talk to him. I think the dermo is doing his best too but he is Russian and until he moved Eric to the local hospital where I could go with him, there were huge problems. Eric is quite deaf and the  dermo does have a strong accent so it was really communication. In fairness, when I ask questions the derm is actually quite good with me and he does try to explain. I always take a note book now. It is much easier dealing with vets than doctors!!!!!

[Fred]

Hello Quish to Psoriasis Club

Your husband is welcome to join us if he wishes, you will both be made very welcome. We have other members that have joined on another's behalf. friends and family are welcome here as much as patients.  

Should Eric want to join let me know if he has any problems registering as sometimes the software may refuse registrations from the same place, it's nothing against you or him it's just a spam protection process. But I can bypass it should he have any problems.

I notice you said he is against injections, but they are very good I've been on my latest one over 5 years now and it has given me my life back. But like Caroline and Jim has said I would get him to stick with it for now and see how it goes, it can take our body a while to get used to a new treatment.

Regards.

Fred.

Oh and I changed your subject from "Fumaderm" to "Fumaderm after Ciclosporin" as we have a lot of Fumaderm threads and will help it get noticed better in search results.

[jiml]

Well Quish you seem a very able person who through determination and reasearch have been able to find a lot of answers to your questions . I have been here for a couple of years and I don't remember anyone mentioning lupus... I could be wrong
I thank you for your background it is always nice to know a bit more about who you are talking to you can see some of my problems here
Fumaderm and hormone injections
Now we know a bit about each other
I look forward to talking more with you or Eric anytime