Fumaderm - questions.

[Angie]

Hi all

Sorry to be a nuisance, I have a couple of quick questions. Think i have maybe asked one on the introduction thread, when I should have stared a new thread, in the right place.

Caroline I seen somewhere, you said about the rules to follow when taking fumaderm, (not sure rules is the right word you used but hopefully you know what I mean).  I have read about eating when taking them (certain foods, yoghurt etc) but apart from that I am not doing anything else different.  Did you mean things that interact with them or things to help the side effects? thanks.

Jiml, I looked at the info you had put on about the 16 week mark, thanks.  I have not found decent info on what levels should be or not. i.e lymphocytes etc.  Is this something you can help me with?

My bloods on Wednesday show Lymph at 0.8.  Are there others I should keep an eye on?  Not been feeling great this week since going up to 6 and wondered if it could be settling into that dose or i'm just a hypochondriac ! ha

Thanks for reading.

Angie

[Fred]

I'll leave them to answer you Angie, but I just wanted to say you're not a nuisance. We encourage our members to post, so never hesitate to ask or answer if you can.

All input is helpful to others.  

[jiml]

You aren't being a nuisance at all

The yogurt and eating thing are to get the tablets into your intestines so they are where they need to be to do their work
No the food shouldn't interact with the Fumaderm ( no need to be careful) the Yoghurt is to ease the cramps I think ...
Lymphocyte levels normal is between 1-3 but yours at 0.8 is acceptable but should be kept an eye on mine has gone lower than that then I reduced the tablets and they came back up again
The others are Liver and Kidney function to keep an eye on
I will be offline for a few hours now if you have any more questions I know Caroline will answer them
Don't worry about asking it's the only way to find out
Jim

[Caroline]

Angie.
Jim is right take the Fumaderm with yoghurt, that protects your stomach and prevents problems there.
Other rule... Build up slowly, slow increase of the medication is better. That is because there is a reaction of the lymphocytes. They go lower but normally gradually recover when you get used to it. With a slow build up this recovery process works better.
Other rule.. If your lymphocyte count goes below 0.5 that reduce the dose !

There are more bloodvalues that are important. Those are the bloodvalues that tell you about the condition of your kidneys and liver. Specifically the latter. But... Most important are the lymphocytes.

Then there is also a diet you may follow. For some people that works.

I hope this answers a bit of what you want to know.

If you have other questions, just do ask them!

Caroline.

[Angie]

Thank you , Fred, Jiml and Caroline .

I've started back on the yoghurt , and upping my fluids. Since being on the 6 tabs the nausea is almost constant. Not being sick at all but wrenching a lot . Using Vicks under my nose as I can't seem to deal with the slightest odd smell . ( feels like being pregnant all over again - I'm definitely not) strange . Still suffering from cramps and visiting the bathroom 2-3 times during the night.  Jiml I read over some of your previous posts and you say you got the stomach cramps generally so long after taking your tabs, I don't have that pattern, some days I can go all day fine and then be up most of the night. Not sure why.

Jim and Caroline you both commented on the lymphocytes - mine being at 0.8 last week, should I keep continuing with the dose I'm on and see how the count is in one months time? Which is when I have to go to my local nurse to have them done. Or should I have them done a wee bit earlier? Also should I hand in a urine sample when getting my bloods done as I've never been asked to do this since starting on Fumaderm.

I'm tired and feeling pretty rubbish really.  My legs are aching, which for some reason happened with methotrexate as well and they are two different drugs! When I told my derm I had muscle pains In my legs while on methotrexate she said it was bizarre ! So didn't mention it this time.

Thanks for reading and any advice is appreciated.

Thanks

Angle

[Caroline]

Hi Angie,

On the lymphocyte count, I don't think it will be a problem as you I are now on 0.8. But main rule is that if you are feeling uncomfortable with it, then you should have it checked. Continously worrying is not good.

A bit of nauseous feeling in your intestines is recognizable. I have that in times also and I learned to ignore it. But also it gradually will be better when getting more used to DMF.

Cramps.... That is the area of Jim, I don't have them. But certainly occasionally I can have quite some pressure so I need to look for a close toilet.
In the night I hardly have problems, my intestines can be quite busy, but I never have to leave my bed for that. In the morning though I am always carefully try to prefeel what is going to happen, because having intestinal pressure while riding the motorcycle is not very nice.

I don't have aching or muscle pain, but I am spinning twice a week, I try to be and keep in a good condition.

Caroline

[jiml]

Hi Angie im sorry you are still getting the cramps through the night and you are having to make a run for it  
It never affected me that way, my cramps would come on after a while and I'm not sure if there was a pattern because it was along time ago and before I found this forum and I didn't keep notes. I do remember the cramps although intense they were never long lasting and never made me need the loo in a hurry  

In my opinion and it is just an opinion if you are struggling with the side effects ... Take a step back for a week or so till things calm down go back to 5 tablets a day and see how it goes .

Secondly your lymphocyte count has dropped by 0.2  since your post on the 15th of February , or was that a previous months reading?
If it has dropped 0.2 in a week I would not want to wait a month for another however if the tests were a month apart then wait the month round. I've never given a urine sample but in view of some of the other things going on with your health it might be an idea to phone the nurse and ask if she would like one

It has not affected my smell, or made me feel rubbish or my legs ache.( and I know the rubbish methotrexate feeling well from my time on it)
I would mention these effects they may be unrelated to the tablets and they should be made aware

[Caroline]

I don't know if a urine sample makes sense. I have never have had to give one.

Caroline

[jiml]

I don't know if a urine sample makes sense. I have never have had to give one.

Caroline

I have never given a urine sample either but thought some of the side effects like aching legs and smell affected don't sound related to Fumaderm ....

[Caroline]

I don't know if a urine sample makes sense. I have never have had to give one.

Caroline

I have never given a urine sample either but thought some of the side effects like aching legs and smell affected don't sound related to Fumaderm ....

No indeed not Jim.

But aching legs can be trained by exercise ! That is very important.