Fumaderm - questions.

[Caroline]

It is a correct observation Debbie. It is not only for Fumaderm, but for the whole of DMF. The side effects swing around. I also can have four days of nothing and than suddenly some intestine trouble. The effect on my PsA however is more or less constant.
Under my own observation I find that if I am on holidays in the south of France the total of PsA gets better. (Think I am gonna live with Fred )

[Angie]

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  

[jiml]

Angie I'm sorry the Fumaderm wasn't for you you certainly persevered with it.
I wish you a speedy success with Stelara I hope you get it soon and you will keep us updated on your progress .
It's time you had some relief you have had a rough time and I for one will read with great interest how Stelara works for you .
I thank you for your honesty in your updates, they have made difficult reading some times, hearing of your struggles, but it does show that that not every drug suits everybody
Good luck I'm sure you have made a wise decision
Jim

[Fred]

@Angie Given the choice I would go for Stelara over Humira, I'm basing that on not only my own use of both but by also by what others have said here in the past and studies over the years. Yes that is the only problem with Stelara and I now remember saying "once you have taken the shot there is no turning back" what I mean by that is should one get an infection or bad bought of the flu for example you cant stop and let your body fight, but with something like Humira you can stop for a week or two. But for me I've never noticed any worse problems than my wife when colds and flu are about, and infections have not been a problem.

@Caroline There is always room at the Inn for you.

[Debbie]

Hi Debbie yes it is a strange drug and it affects us all differently, I have been lucky and got through all the side effects and got to a clear  skin
Can I ask this is week 10 or 11 for you if my memory is any good . So are you taking6 tablets a day?

If so you should start to get consistent results soon with clearing ,
Which side effects are bad for you is it cramps or diarrhoea . Ignore people with ignorant remarks.... It could be them next
Are you seeing much change in your skin?

Hi now on week 10, just taking 3 tablets thought this was full dose? It,s diarrhoea and that funny head flush which sometimes come with a skin reaction - its like heat rash from my waist upwards, my skin burns and itches for about 2 hours.
My hands are much better, but my feet seem to change on a daily basis from really quite manageble to some very painful cracks a day later. i am using Healan tape as well which does seem to help, but is only temporary

[jiml]

Hi Debbie yes it is a strange drug and it affects us all differently, I have been lucky and got through all the side effects and got to a clear  skin
Can I ask this is week 10 or 11 for you if my memory is any good . So are you taking6 tablets a day?

If so you should start to get consistent results soon with clearing ,
Which side effects are bad for you is it cramps or diarrhoea . Ignore people with ignorant remarks.... It could be them next
Are you seeing much change in your skin?

Hi now on week 10, just taking 3 tablets thought this was full dose? It,s diarrhoea and that funny head flush which sometimes come with a skin reaction - its like heat rash from my waist upwards, my skin burns and itches for about 2 hours.
My hands are much better, but my feet seem to change on a daily basis from really quite manageble to some very painful cracks a day later. i am using Healan tape as well which does seem to help, but is only temporary

Hi Debbie
You are not on the top dose but if you are struggling on three tablets I wouldn't rush to increase but the maximum dose is six tablets a day ... Have a read on this link  Fumaderm leaflet it may be a help to you

If you can stick the side effects and can increase the dose I am sure you will get clearance, as you are showing signs of improvement
Do you know what your blood lymphocyte count is and if your liver and kidney function are ok
If they are good you could increase the dose with the dermatologists approval

[Angie]

Thanks Jim and Fred.

I hope so too Jim. I will definitely keep you posted. And thanks for listening to me and answering my pm's.

Debbie - I too had the flush thing which gave me a heat rash from the chest up to my neck. My face burns like I have sunburn and feels really tight and itchy too . I could scratch my ears off when it happens. That's where the heat starts from one ear and works its way round and down - strange ! So I know what you are talking about and it is uncomfortable. I agree with jim , if your skin is improving I wouldn't rush the increase of dose.

I hope you keep posting as I'm interested to hear how you get on. I'm keeping my fingers crossed for you.

Angie  

[Bill]

Hi all.

My view is that the tummy upset directly relates to the speed of tummy emptying. The slower the emptying, the worse the symptoms. And anything that gives reflux or taking DMF with gastic reflux is asking for trouble. I also hold the view that the anti-psoriatic effect of the drug relates to the peak plasma concentration of the DMF, whereas the wbc suppression relates to the total dosage. Were I to have continued at a dosage of 240 mg three times daily, my disease would have stabilised at around 5-10% plaque coverage and eventually a falling lymphocyte would have forced me to cease taking the drug. Changing the way I take the DMF has allowed me to continue to erode the disease whilst allowing my wbc to return to normal levels.

Of course, it should be noted that I am a guinea pig. Such a station can have its privileges.

Cheers,

Bill

[jiml]

Hi all.

My view is that the tummy upset directly relates to the speed of tummy emptying. The slower the emptying, the worse the symptoms. And anything that gives reflux or taking DMF with gastic reflux is asking for trouble. I also hold the view that the anti-psoriatic effect of the drug relates to the peak plasma concentration of the DMF, whereas the wbc suppression relates to the total dosage. Were I to have continued at a dosage of 240 mg three times daily, my disease would have stabilised at around 5-10% plaque coverage and eventually a falling lymphocyte would have forced me to cease taking the drug. Changing the way I take the DMF has allowed me to continue to erode the disease whilst allowing my wbc to return to normal levels.

Of course, it should be noted that I am a guinea pig. Such a station can have its privileges.

Cheers,

Bill

You could well be right with your reckoning, you certainly have kept records on here of the effects different dosing regimes have worked for you, and I think you are right there is some merit in taking larger spaced out doses to give your blood time to recuperate.
I don't think it would work with Fumaderm though because of the added salts, but may well work on a pure DMF tablet like psorinovo.
Thanks again for keeping us up to date on your progress
Being a guinea pig has privileges as long as you are careful, and not a step to be taken lightly

[Bill]

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