Hi,
After battling with Psoriasis for many, many years and after trying Acitretin which seemed to make my skin worse, I have finally been put onto Fumaderm which I am going to start taking on Saturday.
Now I am somewhat of a hypercondriac (slight understatement) and so I'm now worrying that when I start taking the medication I am sure to get PML, which I have read is a fatal brain disorder.
I know how rediculous that sounds but I don't normally get regular illnesses, I get the rare ones. I know PLM is a rare side effect but what are the odds of me actually getting it?
Is this something I should be worrying about because it's playing on my mind to the point of, even with my psoriasis as bad as it is, wondering whether to actually take the medication or not.
I'll be happy for you to tell me to stop being silly.
Stop being silly.
The DMF gang will know more, but I would say your chance of getting it are about the same as you finding a voucher for a free 1st class flight around the moon and back in your packet of corn flakes.
But if it does worry you that much then you shouldn't take it.
Ok stop being silly
Now for the reason to stop and think ....PML very rare and virtually unheard of in patients that are monitored
I think there have been about 2 cases ( if that many) on Fumaderm, if you read the case notes you will see that they had very low lymphocyte count due to lack of monitoring
You have more chance on being hit by an asteroid than getting PML ....Even more cases have been reported on methotrexate ....a simple search or the Internet will show that fact
I've been on it 5 years and have done my research and I feel safer on Fumaderm than methotrexate and all the steroid ointments I've been on over the years
Exactly what I wanted to hear, thanks!
I am definately going to take them, they are currently sat in my cupboard waiting until Saturday. I don't want to take them this week as I'm in meetings around the county this week and don't want to have to worry about flushes, cramps and sudden 'toilet cravings' if you know what I mean
It's typical of how my brain works though, I see a rare side effect and immediately think that I will get it, that I will be the million to one person that it happens to. I assume no one on the forum has heard of anyone having this with it being so rare?
(Tue-03-01-2017, 20:44 PM)OneBigItch Wrote: NO LINKS ALLOWEDExactly what I wanted to hear, thanks!
I am definately going to take them, they are currently sat in my cupboard waiting until Saturday. I don't want to take them this week as I'm in meetings around the county this week and don't want to have to worry about flushes, cramps and sudden 'toilet cravings' if you know what I mean
It's typical of how my brain works though, I see a rare side effect and immediately think that I will get it, that I will be the million to one person that it happens to. I assume no one on the forum has heard of anyone having this with it being so rare?
I think Caroline looked at the case, but I'm not sure,
I look forward to reading of your journey and ask as many questions as you have, we will try to allay any unfounded fears you can think of
Ask advice if you are concerned about dosing
And most important have a blood test before you start and record your levels , I do mine in my journal here
Jim's Fumaderm and hormone treatment
(Tue-03-01-2017, 20:44 PM)OneBigItch Wrote: NO LINKS ALLOWEDExactly what I wanted to hear, thanks!
I am definately going to take them, they are currently sat in my cupboard waiting until Saturday. I don't want to take them this week as I'm in meetings around the county this week and don't want to have to worry about flushes, cramps and sudden 'toilet cravings' if you know what I mean
It's typical of how my brain works though, I see a rare side effect and immediately think that I will get it, that I will be the million to one person that it happens to. I assume no one on the forum has heard of anyone having this with it being so rare?
Hi OneBigItch,
I am totally agreeing with Jim and Fred, you are being very silly.
I have been on DMF, not Fumaderm, but the Dutch version for more than 10 years, no problem at all.
Just keep being monitored. The guidelines in the Netherlands have been made stronger on the point of monitoring, with EU minimal suggestions on the minimum of lymphocytes, and I thought a 3 month interval on monitoring.
This change of the guidelines is the result of a few PML cases on many thousands of psoriasis patients, it's a bit overrated reaction but it's not bad as the new guideline now in fact makes use of DMF easier and even more safe to prescribe by dermatologists.
Sorry about the workings of your brain.... hihi. It happens to the best, that is clear.
Your assumption that no one on the forum has heard of anyone is not true. I know who the only person in the Netherlands is who got PML after no good monitoring of the blood values. Sorry.
Thanks guys, it's good to get the confirmation of what I kinda knew, I just needed to hear it from people that have been there , done it and bought the brochure!
I've already had my baseline bloods taken and I have my Derm appointment in Feb so I will have another test just before I go back.
I will be on one tablet of initial for two weeks, then two for two weeks, and so on...
Is it true that they are best taken with large meals? What do you do at breakfast which is normally one of the smaller meals I have (porridge) - is that enough for when I have to take one in the morning?
I'm not looking forward to the cramps and flushing but I will forge ahead as hopefully the benefits will be worth it!
When you have your bloods done ask for a copy of them
Otherwise when you ask what your levels are they will just say within normal range....you are better knowing what the reading is yourself record it somewhere preferably here so you can see if there's a trend down ....then you can adjust the dose down until the levels recover ...they may not go down but it's worth keeping an eye on it yourself
Se here what your dose you should take
Fumaderm leaflet
Yes takevthem with a meal and plenty of fluid
If the medication lowers your immunity slightly, do you eat or take anything to help it - vitamins, probiotics, certain foods etc? Or does it not need it?
I will keep a diary on here when I start taking them, I've read many peoples posts and it's helped me so hopefully mine will help others too.
Thanks yes your journey will help others if you do keep a log here
I take no supplements and I get the odd cold occasionally, although they seem to miss me mostly
The medication doesn't lower your immunity as far as I know, but it does modify it,
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