Fumaderm - questions.

[Caroline]

Thanks Jim. I agree with you about the tablets, but my preference is DMF powder with a big meal. I think that the dosing regimen has come about from an attempt to minimise the gastric upset. The few hours of tummy upset I bear happily with the knowledge that I am giving the disease a good kick in return.

Cheers,

Bill

I guess the same Bill. The idea of spreading in Psorinovo is meant to reduce the effects in the tummy.

From your approach it appears that peaking the levels have a better effect.

Cheers,
Caroline

[Debbie]

Hi Debbie

Sorry to hear things aren't great, hopefully maintaining your dose will sort it all out and you will be like Jim and the others who have success with Fumaderm. I really did hold out hope for me with them but it wasn't to be. Side effects were just to much for not having great improvement with skin. Also with lymphocytes being 0.5 , the odds were against me.  Now that I am taking 2 or 3 tabs a day (depending on trips to the loo) I am back to scratching at night, scalp p back, legs rubbish and arms and hands getting more spots by the day. So they did help but just not enough.  Good luck with them Debbie.  

Jim & Fred- yep you are both right. I think the quote was "once you have taken the shot there is no turning back", yes this was in relation to others being weekly etc, and not 12 weeks. Sorry, I should concentrate when reading.  

Well at derm today , she told me she had the apremilast paperwork on her desk. Although she wasn't sure they had been approved yet, but I told her they had been on Monday by the SMC.  I said that I had some reservations about them, ie: not great write ups , more sickness , diarrhoea, headaches side effects (after having this for 5 months, I really don't know if I can do more) . She said it would take 4 weeks for paperwork and have to give them 16 weeks to work. If this had been 6 months ago I would have happily accepted.

Long story short, she suggested injections. I asked which she would recommend and humira and stelara were her preferences.  I have opted for stelara, had bloods done, to go back for tb test and await funding etc. not sure why I opted for this one, I think through reading this seems a better one, but also know everyone's different.

She offered me. Cyclosporine in the mean time which I politely declined due to rebounds previously. So I'm keeping taking Fumaderm , will try and up dosage.

Well that's about it really, just wait and see if it all goes through ok.

Hope all are well,

Angie  

Hi Angie good luck with , stelara. I havent been on funaderm long enough yet so will keep on persevering- its the nights that are so bad - itching, and then the tiredness due to lack of sleep, i could have easily fallen asleep at work thos afternoon!
Good luck Debbie

[Angie]

Hi all

Just a wee update. Have had all tests for pre- stelara.  All good so far. Awaiting results of tb test .

Still taking only 2 Fumaderm a day. Still getting D and flushes. But nothing like previously. Lymphos now at 0.8. Still appear to be taking a while to increase.

Skin not good. Small patches on face, which pro topic usually takes care of, so will increase usage of that.

Legs - rubbish. All dots joining up nicely! Back to only being able to lie on one side as skin on hip sore. Arms not great either.

I'm thinking of maybe just stopping Fumaderm altogether as still having the side effects and low lymphocyte count and absolutely no benefit to skin. Though I would not know if the 2 a day are maybe holding it off a little.  

May try occlusion, after reading Quest's advice elsewhere.

I'll keep updating with anything new.

Hope all are well.

Angie  

[jiml]

Hi all

Just a wee update. Have had all tests for pre- stelara.  All good so far. Awaiting results of tb test .

Still taking only 2 Fumaderm a day. Still getting D and flushes. But nothing like previously. Lymphos now at 0.8. Still appear to be taking a while to increase.

Skin not good. Small patches on face, which pro topic usually takes care of, so will increase usage of that.

Legs - rubbish. All dots joining up nicely! Back to only being able to lie on one side as skin on hip sore. Arms not great either.

I'm thinking of maybe just stopping Fumaderm altogether as still having the side effects and low lymphocyte count and absolutely no benefit to skin. Though I would not know if the 2 a day are maybe holding it off a little.  

May try occlusion, after reading Quest's advice elsewhere.

I'll keep updating with anything new.

Hope all are well.

Angie  

Glad things are looking good for stelara lets hope the TB test comes back ok
I'm like you thinking the fumaderm is not doing much except giving you the side effects .... It's a problem not knowing what will happen if you stop... It may come back or it might stay as it is ..
Any idea when you might get started on stelara, have they given you a date

Yes Quest swears by occlusion it may well be worth a go
Thanks for the update and very good luck, it can't be long to wait now

[Angie]

Jim my consultant said 2 - 6 weeks.

Said the secretary would call me to sign form or something like that.

Though when speaking with junior Doc the other day when getting TB bloods done , she said I probably wouldn't hear until my next appointment in 7 weeks time! So the answer is who knows . Ha ha

Hope your well .

Angie  

[jiml]

Jim my consultant said 2 - 6 weeks.

Said the secretary would call me to sign form or something like that.

Though when speaking with junior Doc the other day when getting TB bloods done , she said I probably wouldn't hear until my next appointment in 7 weeks time! So the answer is who knows . Ha ha

Hope your well .

Angie  

I'm fine and staying clear with just my daily hot flushes ...... It's a shame it didn't agree with you, but it just shows that not everything works for everybody ..... But I was so hopeful for you

7 weeks is a long time with summer arriving, we were hoping you would be clear for the summer, bloody shame......

Maybe you should ring after a week and ask if the tests were ok, and tell them you are having a big breakout ( even if you're not) they might get you in a bit quicker

I will wait to hear of a success story from you in the future. But in the meantime keep coming back and perhaps I may see you in the off topic section, for a chat sometime

[Angie]

Thanks Jim

[Debbie]

Hi all

Just a wee update. Have had all tests for pre- stelara.  All good so far. Awaiting results of tb test .

Still taking only 2 Fumaderm a day. Still getting D and flushes. But nothing like previously. Lymphos now at 0.8. Still appear to be taking a while to increase.

Skin not good. Small patches on face, which pro topic usually takes care of, so will increase usage of that.

Legs - rubbish. All dots joining up nicely! Back to only being able to lie on one side as skin on hip sore. Arms not great either.

I'm thinking of maybe just stopping Fumaderm altogether as still having the side effects and low lymphocyte count and absolutely no benefit to skin. Though I would not know if the 2 a day are maybe holding it off a little.  

May try occlusion, after reading Quest's advice elsewhere.

I'll keep updating with anything new.

Hope all are well.

Angie  

Hi Angie, glad stelara looking good. So hard to know if Fumaderm is doing any good, psoraisis so miserable, most side effects worth persevering if you get good results!
So far I find fumerderm not persistant, psoraisis and side effects good and bad days - I,m back to hospital next week
Hope you can soon try stelars Angie
Good luck

[jiml]

Debbie don't forget to ask at the hospital why they are increasing your dose so slowly

[Fred]

Ouch TB results 7 weeks, I got mine the next day.

As for stopping the Fumaderm, I would stop it now. It's very unlikely if you have been offered Stelara to find there is a problem with the TB result, so stop it now and yes the psoriasis may get a bit worse but Fumaderm is not for you so give it up now and watch the results of Stelara work it's magic.

I always think the best way to judge how good a treatment is, is to have as much psoriasis as you can.