Fumaderm - questions.

[Kat]

Hi Kat

Not at all, it didn't sound like that and I'm grateful for all advise.

Come October I will probably be so fed up with the scottish weather,
that I'll go anywhere for the sun and streak down the beach!! Ha ha
Just kidding.  

Thanks again Kat, much appreciated.

Angie  

When we were in the military, I kept hoping we'd get stationed in Scotland (Edzell). We never did though.

I look forward to your updates and hope you're out streaking soon!

[jiml]

Me to let me know which beach

[Debbie]

Kat,  That's good you enjoyed yourself.  I'm just not quite there yet, and would hate to go abroad and it be very warm to sit
on balcony for the duration, well until night time.  

Rather than holding off any longer, I have decided to give the holiday a miss this summer and asked my o/h to take the kids
himself.  I'm sure they will survive.  If all goes well I will try and get away during the school holidays in October.

Hope your well Kat and thanks for the reply.

Take care

Angie  

I totally understand.  I hope I didn't sound like I was trying to change your mind, simply your post made me remember how hesitant I was to go last year and that for me, in the end it turned out ok.  I'll be hoping you get clear and that you can look forward to doing something in October.  

Hi there, yes it is embarrassing - I have my feet permanently in tubular bandage, I find it hard towear boots because they either rub or maje my feet too hot and then they go crazy! Most if the time I wear a clog type shoe so that I can easily slip my foot in and out, but this does make it noticeable even with trousers and long skirts

[Angie]

Hi everyone

Just a wee quick update .  Still on 5 a day, lymphos still 0.5.  Side effects - still not good.

Had rubbish weekend, stayed in as couldn't go far from loo. Lots of lost sleep, and I think I have counted the tiles in the bathroom lots and lots !  That's when I'm not trying to get rid of the pins and needles in my feet from sitting for so long! Ha ha

Just when I think my system is getting used to them I seem to go backwards.  Not sure why as I don't change anything. Can go 2 days with just one visit to the loo - though usually woken up at an ungodly hour. Then ok for rest of day , then crash, bang, wallop next three days horrendous. I've actually reduced to 3 over the last three days as bloody tired of it.

Skin much the same, arms ok, legs rubbish, some scale appearing back on ears and eyebrows .  So not sure the next step.

I have derm appointment tomorrow so will see what she thinks -- not holding my breath for any good suggestions from her as I find it's a case of keep taking the meds and see you next time.

I hope your all well.

Angie  

[Fred]

Hello Angie thank you for the update, sorry I'm feeling to lazy to check your posts but have you tried the Bio treatments? [thread=77]

If not it may be worth reading the above and arming yourself with information, not all treatments work for everyone we are all different and it may be that Fumaderm is not for you.

Better get reading if you've not tried them, as you've left it a bit late.  

Good luck though and please do report back as your information could help others.

[jiml]

Hi everyone

Just a wee quick update .  Still on 5 a day, lymphos still 0.5.  Side effects - still not good.

Had rubbish weekend, stayed in as couldn't go far from loo. Lots of lost sleep, and I think I have counted the tiles in the bathroom lots and lots !  That's when I'm not trying to get rid of the pins and needles in my feet from sitting for so long! Ha ha

Just when I think my system is getting used to them I seem to go backwards.  Not sure why as I don't change anything. Can go 2 days with just one visit to the loo - though usually woken up at an ungodly hour. Then ok for rest of day , then crash, bang, wallop next three days horrendous. I've actually reduced to 3 over the last three days as bloody tired of it.

Skin much the same, arms ok, legs rubbish, some scale appearing back on ears and eyebrows .  So not sure the next step.

I have derm appointment tomorrow so will see what she thinks -- not holding my breath for any good suggestions from her as I find it's a case of keep taking the meds and see you next time.

I hope your all well.

Angie  

Hi Angie got to admit it's not looking good for you and Fumaderm, you seem to have tried very hard to make it work, but the side effects aren't reducing and your skin is not responding, you say you are getting new scales.
Is it four or five months now? It's time you should have seen improvement and a reduction in side effects in my opinion
Only you know if it's worth the torment carrying on, I would say stick with it if there was some improvement, but if it's just not working and you have been very poorly on it . Then I think it may be time to ask for a change .
Fred has suggested Biological drugs, that may be the way to go
I wish you luck tomorrow with your dermatology appointment, don't accept the idea of keeping on with it if you are uncomfortable.
Your lymphocytes are still low and should have started to come up in a month. Read this it's an excerpt from the Fumaderm leaflet about when to cease the therapy

Quote:

---

This is from the package leaflet

1.. What is FUMADERM and what is it used for
2.. What you need to know before you take FUMERDERM
3.. How to Take Fumaderm
4.. Possible side effects
5.. How to store fumaderm
6.. Contents of the pack and other information

1. What is FUMADERM and what is it used for

FUMADERM contains fumeric acid ester and is a medicine for the treatment of psoriasis

FUMADERM is used for the treatment of moderately severe to severe forms of psoriasis vulgaris if an exclusively external therapy is insufficient. Prior tolerability adjustment with FUMADERM initial is required

2. What you need to know before you take FUMADERM
Do not take FUMADERM
If you are allergic to dimethyl 1 fumerate, ethyl 1 hydrogen fumerate calcium, magnesium or zinc salt or any of the other ingredients listed in section 6.
 
In the presence of severe gastrointestinal diseases, such as gastric or doudenal ulcer

In the presence of hepatic or renal disease

In mild forms of psoriasis vulgaris e.g. localised plaque psoriasis or chronic stationary plaque psoriasis covering less than 10% of the body surface due to treatment risks ( benefit / risk ratio)

In psoriasis pustulosa due to the lack of sufficient clinical experience. Whereas isolated case reports provide evidence of efficacy

In Patients below 18 years of age

During pregnancy and breastfeeding

Laboratory monitoring

Blood count .. Prior to initiation of treatment with FUMADERM, a blood count (including a differential blood count and platelet count ) must be performed . In the presence of values outside the normal range, treatment with FUMADERM must not be instituted. During the course of treatment full blood counts (leukocyte count and differential blood count) must be monitored on a regular basis

After starting the therapy. Laboratory testing should be performed every 14 days for the first 3 months. If laboratory findings remain normal, monthly performance of blood count is sufficient.

Blood and Urinary Values
To identify any adverse effects on liver and kidney, activity of SGOT[AST] DGPT [ALT],gamma-GT.AP, the level of the renal function value serum creatinine of the blood,as well as urine protine and sediment should be tested prior to the start of treatment and regularely during therapy (every 14 days during the first 4 weeks and every four weeks thereafter)

Criteria for discontinuation of therapy

Leukopenia ( reduction of white blood cells)  Treatment with FUMADERM must be discontinued immediatly in the presence of a significant reduction in leukocyte count- particularly if values are below 3,000ul

Lymphopenia ( reduction in specific white cells   if the lymphocyte count drops below 500ul treatment must be discontinued immediately

if the lymphocyte countdrops below 700ul the dose should be halved. If during the follow up check after 2 to 4 weeks the absolute lymphocyte count remains below 700ul then treatment must be discontinued. Alternative causes of lymphopenia should be excluded .

If therapy is continued in presence of severe prolonged lymphopenia the risk of an opportunistic infection cannot be ruled out

Other blood diseases   Treatment should be discontinued immediately and caution should be excersised if there are other pathological changes in blood count

In all cases, the bloodcount should be monitored until normalisation

Other laboratory abnormalities  Therapy must be discontinues in any case of increased creatinine levels above the normal range ( see section 4)

So I think from this quote biogen's advice is to stop if lymphocytes stay low below .7 (700ul) for the time period yours has
Good luck please let us know the outcome tomorrow
Jim

[Grizzly Bear]

Awwww Angie, you poor wee lassie you.

I hope that your dermatologist listens to you and what you are going through.

Fingers and paws are crossed for you

[Angie]

Hi Fred, Jim and Mr Bear,

Thanks for replies.

Fred- thanks , yes I had a read previously and tried to work out which ones were better than others, but didn't really come to a conclusion.  I had a read through different posts looking for the side effects etc, but as everyone is different I haven't came up with an answer.  I wonder if the derm has guideline to follow when prescribing these ? Ie cheapest first?? I should have did my homework earlier, but have always hid away from biologics.  But yes it would appear I have tried everything else and still no real quality of life.  If you have tried different ones, is your preference Stelera. ( the one that's working for you- ha) silly question    

Jim- yep not looking good at all, I have persevered and it's been 5 months almost . I am really disappointed as I have seen these as my last chance salon , because of fear of biologics , but hey maybe it's time to bite the bullet and  man up  

Thanks for extract which I have read and although I didn't half my dose I did drop 1 tab a day, lymphos staying the same.   I do have improvement in skin but only from the waist up. I know legs are always last to improve (gravity!!) but they are covered and would have expected an improvement 5 months in.  Thank you Jim . I'll let you know how it goes .

Mr Bear- thanks, yeah I hope she listens to , will probably depend on how late she's running.  
May need to tie wrap myself to her chair until she talks sense. Ha

Be back later, take care.

Angie

[Fred]

Fred- thanks , yes I had a read previously and tried to work out which ones were better than others, but didn't really come to a conclusion.  I had a read through different posts looking for the side effects etc, but as everyone is different I haven't came up with an answer.  I wonder if the derm has guideline to follow when prescribing these ? Ie cheapest first?? I should have did my homework earlier, but have always hid away from biologics.  But yes it would appear I have tried everything else and still no real quality of life.  If you have tried different ones, is your preference Stelera. ( the one that's working for you- ha) silly question    

Hello Angie, yes your dermatologist has a protocol to follow. Creams, Light, Pills, Bio's. As you can see the Bio's are always last, a lot of it is down to cost but they also say it's because the Bio's lower your immune system. (I agree they do, but so does Methorexate and it's poison) Moving on.  

Yes I prefer Stelara, and yes that's probably because it's been good to me over the past 5 years and it's just one simple teeny injection that I do at home every three months. Something like Enbrel was twice a week, it doesn't hurt or anything it just get boring doing it that often. Th upside with Enbrel is if you get an infection you can stop, but with Stelara once you've took the shot there's no turning back. Having said that I've only ever had the usual colds or bought of flu that we all get, I don't have the flu jab, and sometimes Mrs Fred will have a cold but I don't.

Which one is best? No one knows which one is best as it does depend on the individual. Some get great results from Humira but I ended up in hospital for a week after having a reaction to it, Remicade was my first and it was amazing but after a few months I had a reaction to that too so had to come off it. (which I didn't mind as Remicade is given intravenously and you sit around in hospital for hours)

Enbrel was probably the best it was fantastic for psoriatic arthritis, not so good for psoriasis but it did keep it down. Unfortunately it just stopped working, so the last one available then was Stelara luckily it worked. But that was for me you and others may be different, but having tried 4 of them I'm a big fan if your life is being ruined by psoriasis and/or psoriatic arthritis go for it, you can always stop and try another or come off them completely should it not be for you and there more becoming available so soon there will be a wide choice.

I would say in summing up, if one can manage on creams stick with it. I can't comment on the pills as I've only ever tried Methotrexate, and I would say to everyone avoid it at all costs. But is life is S**t then give the Bio's a try and claim back your life.

[Angie]

Just back from derm.

Long story short, she says my body is not liking Fumaderm , according to bloods and side effects continuing.

She knows I have never been keen to try the biologics ( though wasn't keen on systemics either, now had them all) , she has suggested Apremilast, which have just been given the go ahead (or any day now) by the S.M.C.  I have heard of them but not looked closely. She says they work in a completely  different way from everything else I have tried and it's still a tablet . Apparently they are the same cost as Fumaderm.

Had a quick read earlier and the common side effects are sickness and the dreaded D! Well I'm an expert in them so hopefully it will subside with use.  She also did point out , as I was leaving that if I had went the injection route, I would be clear by now.

I will do  my homework and try to find info on here, not sure how long they have been used in America?

I've to continue on the reduced dose of 3 a day and return to her in 4 weeks when it should be in place .

I would very much appreciate any info if anyone has any.

Thanks

Angie