Fumaderm side effects - my worst case senario

[Bill]

Hi Jim,

Is there any specified reasoning for fortnightly testing? It sounds a bit German to me.

Cheers,

Bill

[jiml]

Hi Jim,

Is there any specified reasoning for fortnightly testing? It sounds a bit German to me.

Cheers,

Bill

When first starting on the tablets, while your body is getting used to the invasion, it is important, as at that time the lymphocyte count can drop rapidly  and monthly monitoring, or worse 3 monthly the drop could be to a dangerous level ...whereas if regular 2 weekly tests are carried out any abnormal readings can be addressed by either stopping the treatment or reducing the dose...
That's the way I interpret the instructions

I have made an edit to the Fumaderm leaflet

[To see links please register here]

to add in an extra concern regarding a rare occurrence of Fanconi Syndrome

[Bill]

Thanks, Jim. The risk from a low lymphocyte count comes from being below 0.8 for more than six months, and in any event it is very hard to imagine a big drop in lymphocytes in the first few months of treatment, especially with the small initial doses. I would think it more to do with monitoring liver and kidney function.

Cheers,

Bill

[jiml]

Yes Bill on reflection you're probably right

[OneBigItch]

First week over and so far all I've had no real side effects. I've had a few flushed episodes but I've slept through most of them.

My skin hasn't changed, it's still very red and angry on my legs especially, but I don't expect it to be any different yet. I think I'm itching more though.

According to my instructions I have another week of one initinitial tablet a day before I move on. I thought that I'd move on quicker than this but I've got to stick to the rules I suppose.

[jiml]

Yes it's wise to stick to the rules. It's a slow steady build up allowing your body to adjust. Be patient and things will start to happen as the dose increases  

[OneBigItch]

Yes it's easy to be impatient, I'll stick to the rules   plus I'm not looking forward to the higher dose anyway, those cramps don't sound great.

[Caroline]

Yes it's easy to be impatient, I'll stick to the rules   plus I'm not looking forward to the higher dose anyway, those cramps don't sound great.

Obi,
It is a slow treatment. The fact that you have flushes already is to my opinion a good signal as there is an interaction between you and the stuff.
Stay strong ! True it is difficult to be patient, but if it finally is worth it you will be happy.

The cramps can be reduced by a smart use of food during the taking of the medication. DMF and your intestines are no friends, so the use of food should take care of the spreading of the DMF over time. E.g. yoghurt or milky things form a layer and may reduce the effects.

[jiml]

Yes it's easy to be impatient, I'll stick to the rules   plus I'm not looking forward to the higher dose anyway, those cramps don't sound great.

You might not get them but if you do it will be short term and well worth the discomfort to get clear. I haven't had  any cramps for years ... and you could be lucky and not get any

[OneBigItch]

Well my legs are so red and inflamed I am desperate to use some elecon ointment to try and relieve the pain and itching. Iassume it's still ok to use steroid cream when on fumaderm?

I don't know what else I can use to give some relief. The itching seems to know no end at the moment!