Low energy levels on fumaderm

[braye lodge]

. If you are so old as Jim and Fred, you can be tired of course.  

tiredness is not something I recognise   even at my age

You got your answer Braye,

Angel  

Haha i balme work i do 24hr shifts sometimes and have bad sleep patterns. But for the most part i'm fit and healthy.

[Caroline]

Yes, Blood checks must be done regularly.
Your doctor will guide you in that.
I guess it started, with very quite regular, e.g. every month, but then it slowly can take longer periods of time in between. I am on a half year scheme, but have used it already much longer than you.

24 hr shifts, sounds heavy to me. No wonder you have bad sleeping patterns and feel a bit fatigued, let me tell you then that this work shifts are more likely the cause and not the fumaderm.

Good to hear that you are fit and healthy. That is also my target, to stay as fit as possible.

[jiml]

Just a small interruption
With Fumaderm the bloods should be checked every 2 weeks for the first three months and monthly testing after that .... Don't let it go too long between tests
See laboratory testing on this link Fumaderm leaflet

[braye lodge]

Hi caroline, is it normal to have low energy levels on fumaderm?

Hi Braye,

I have read somewhere on the forum, that there are some who feel more fatigue with Fumaderm. But I myself do not feel anything different since I use DMF. I always am full of energy. Ready to kick.
I think Jim has also no problems with his energy levels.

Caroline

Im due a blood test so it might show up low blood count. I hope all is fine. I get tierd every now and again , always on the go.

So i got the results of my blood test and my lymphocytes are 0.5 which is the lowest that can be allowed. The dosage i'm on hasn't been increased due to that. Got a 3 month perscription to do me till may. If i don't get into dermatology back in ireland, i think i might stay longer in guernsey. Not ideal

[jiml]

Braye I'm sorry to but in as I know you are asking Caroline........but seeing what you have written I couldn't let it go without a few words of warning......
Firstly with a lymphocyte count of 0.5 you should at best reduce your dose by at least one tablet a day in the hope that the count will come back up....

Secondly with the count so low you need close monitoring as you are getting close to dangerous levels, when my levels went to 0.7 I was having monthly blood tests, ideally you should have yours done every 2 weeks to see if there is any change , either up or down....if the trend is down ....you should stop taking them
However if the blood is recovering i.e. Blood count increasing ...then stretch the blood tests out to monthly

Sorry to jump in but those figures are concerning

[braye lodge]

Braye I'm sorry to but in as I know you are asking Caroline........but seeing what you have written I couldn't let it go without a few words of warning......
Firstly with a lymphocyte count of 0.5 you should at best reduce your dose by at least one tablet a day in the hope that the count will come back up....

Secondly with the count so low you need close monitoring as you are getting close to dangerous levels, when my levels went to 0.7 I was having monthly blood tests, ideally you should have yours done every 2 weeks to see if there is any change , either up or down....if the trend is down ....you should stop taking them
However if the blood is recovering i.e. Blood count increasing ...then stretch the blood tests out to monthly

Sorry to jump in but those figures are concerning

Wow my dermatogist didn't seem concerned and wont have another appointment till may. No even guarateed it. I'll have to do it on my own accord so. He said i wouldn't need a blood test until anothwr 3 months

[jiml]

Braye these are the manufacturers words from the leaflet link I put in an earlier post

Quote:

---

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 protein and sediment should be tested prior to the start of treatment and regularly 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 immediately 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 count drops 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

I'm not trying to scare you but to be honest if you leave blood tests for 3 months you could get in serious health trouble .... The whole idea of monitoring is to determine the best way forward ...and for you it's not continue the same and blood test in three months.... That is so wrong

[braye lodge]

Braye these are the manufacturers words from the leaflet link I put in an earlier post

Quote:

---

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 protein and sediment should be tested prior to the start of treatment and regularly 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 immediately 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 count drops 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

I'm not trying to scare you but to be honest if you leave blood tests for 3 months you could get in serious health trouble .... The whole idea of monitoring is to determine the best way forward ...and for you it's not continue the same and blood test in three months.... That is so wrong

What health implications does it cause? I didn't realise it was that serious, only for you telling me this

[jiml]

When your lymphocyte count is very low you are left wide open for opportunistic diseases to attack you, I am not a doctor but have read enough to worry about the way your dermatologist is prepared to wait three months before seeing you or doing any more tests  

The worst case could be PML ..( progressive multi focal leukoencephalopathy) this is caused by the JC virus the virus only causes disease when the immune system is seriously weakened ... There have been a few cases and all caused by lack of proper monitoring and could have been reversed if caught in time ..


Incidentally it would be a good idea to move some of these comments to a separate thread if you don't mind as this ask thread is really a thread to find out about Caroline

[Caroline]

JIM !!!!!!!

You are on my thread !!!! And also not correct....  

What you are saying is only partly true, and way overrated.
I have been years on a level between 0.5 and 0.7, and I am hardly ever ill nor is my immune system against viruses less than normal, which is well known, at least with the community over here in NL, when you use DMF.