Health Boards
Wed-10-06-2015, 20:53 PM
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
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