(Tue-12-05-2015, 22:08 PM)Angie Wrote: 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: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
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)
Good luck please let us know the outcome tomorrow
Jim