Fumaderm and hormone injections

[Caroline]

It is one of the known problems with DMF, your lymphocyte count can go down.
Still seeing your count you are still far away from problems.

During the total life of my DMF medication, we had 1 person that came into kidney trouble and one person that got PML, caused by an inadequate reaction (of the doctor) to a far too low lymphocyte count. This last case was totally blown up in the press order to damage DMF.
I will bet, that this will not happen anymore now Tecfidera is on the market….

By the way, the number of people who got PML from a too low lymphocyte count caused by using MTX is about 250.

[web]https://www.ehealthme.com/ds/methotrexate/progressive+multifocal+leukoencephalopathy[/web]

[jiml]

It is one of the known problems with DMF, your lymphocyte count can go down.
Still seeing your count you are still far away from problems.

During the total life of my DMF medication, we had 1 person that came into kidney trouble and one person that got PML, caused by an inadequate reaction (of the doctor) to a far too low lymphocyte count. This last case was totally blown up in the press order to damage DMF.
I will bet, that this will not happen anymore now Tecfidera is on the market….

By the way, the number of people who got PML from a too low lymphocyte count caused by using MTX is about 250.

[web]https://www.ehealthme.com/ds/methotrexate/progressive+multifocal+leukoencephalopathy[/web]

Thanks Caroline I will have a better idea Friday when I see the dermatologist

[Fred]

Had a letter today saying full blood count down to 0.76 where normal is between 1 and 3
Talking of reducing Fumaderm, if bloods go any lower.
They must consider radiotherapy can also have the same effect so I may have an argument.
Dermatologists appointment at hospital Friday will update post after visit

I would say stick with it for the moment as you're not way way to low, and you have been through a lot lately. So give things a little longer to settle down before making any decisions, yes keep an eye on it but give it time.

My Eosinophils have always been high using Stelara, but on my last check they were almost normal. And I've never had any problems, so give it a bit longer before making a move away from Fumaderm as it's working for you.

[jiml]

Had a letter today saying full blood count down to 0.76 where normal is between 1 and 3
Talking of reducing Fumaderm, if bloods go any lower.
They must consider radiotherapy can also have the same effect so I may have an argument.
Dermatologists appointment at hospital Friday will update post after visit

I would say stick with it for the moment as you're not way way to low, and you have been through a lot lately. So give things a little longer to settle down before making any decisions, yes keep an eye on it but give it time.

My Eosinophils have always been high using Stelara, but on my last check they were almost normal. And I've never had any problems, so give it a bit longer before making a move away from Fumaderm as it's working for you.

Thanks for the advice I will fight to stay on it obviously if it drops way down then I will reconsider

[Bill]

Hi Jim,

Surely a low white cell count represents an immediate and greater risk to your health than the return of a few plaques? A few months into treatment I started to get a cold but didn't take a break from the DMF. The cold got a lot worse and I ceased taking the drug for about a week. Now I stop the drug for a few days when I start to get a sniffle, though thankfully I have not been sick for several months. Stopping or reducing DMF does not carry the risk of an aggressive rebound of psoriatic plaques as do other treatments, and hopefully you can resume taking Fumaderm when your leukopenia resolves. Think of it as a strategic retreat before a further offensive.

All the best,

Bill

[jiml]

Hi Jim,

Surely a low white cell count represents an immediate and greater risk to your health than the return of a few plaques? A few months into treatment I started to get a cold but didn't take a break from the DMF. The cold got a lot worse and I ceased taking the drug for about a week. Now I stop the drug for a few days when I start to get a sniffle, though thankfully I have not been sick for several months. Stopping or reducing DMF does not carry the risk of an aggressive rebound of psoriatic plaques as do other treatments, and hopefully you can resume taking Fumaderm when your leukopenia resolves. Think of it as a strategic retreat before a further offensive.

All the best,

Bill

Thanks Bill so you think it may be a good idea to at least reduce the dose, I will bear that in mind and if the hospital insists on reducing it I will take comfort from your words regarding the reappearance of plaques and the hope I can increase the dose when blood count is better
Thanks again
Jim

[Caroline]

Hi Jim,

Surely a low white cell count represents an immediate and greater risk to your health than the return of a few plaques? A few months into treatment I started to get a cold but didn't take a break from the DMF. The cold got a lot worse and I ceased taking the drug for about a week. Now I stop the drug for a few days when I start to get a sniffle, though thankfully I have not been sick for several months. Stopping or reducing DMF does not carry the risk of an aggressive rebound of psoriatic plaques as do other treatments, and hopefully you can resume taking Fumaderm when your leukopenia resolves. Think of it as a strategic retreat before a further offensive.

All the best,

Bill

Hi Bill,
At my side I have a different experience.
As soon I am lowering on the dose, then in a few days I will get pain in mainly my feet and then some later the feeling as if someone sometimes is putting a needle in the joints of my fingers.
So the effect of not using DMF is quite strong.

On the other hand, I am almost never sick. The sniff/illness I had a few weeks ago was much less then others in my environment have had at about the same time. Basically only twice a year I have a little cold, that's it.

Are you keeping an eye on your lympho's by the way?

[jiml]

Hi Jim,

Surely a low white cell count represents an immediate and greater risk to your health than the return of a few plaques? A few months into treatment I started to get a cold but didn't take a break from the DMF. The cold got a lot worse and I ceased taking the drug for about a week. Now I stop the drug for a few days when I start to get a sniffle, though thankfully I have not been sick for several months. Stopping or reducing DMF does not carry the risk of an aggressive rebound of psoriatic plaques as do other treatments, and hopefully you can resume taking Fumaderm when your leukopenia resolves. Think of it as a strategic retreat before a further offensive.

All the best,

Bill

Hi Bill,
At my side I have a different experience.
As soon I am lowering on the dose, then in a few days I will get pain in mainly my feet and then some later the feeling as if someone sometimes is putting a needle in the joints of my fingers.
So the effect of not using DMF is quite strong.

On the other hand, I am almost never sick. The sniff/illness I had a few weeks ago was much less then others in my environment have had at about the same time. Basically only twice a year I have a little cold, that's it.

Are you keeping an eye on your lympho's by the way?

Well I'm not keeping an eye on them at the moment the hospital will give me the full picture on Friday. I will Know better then.... BTW I dont have PSA just plain old plaque Psoriasis
thanks for responding much appreciated

[Bill]

Hi Caroline,

That sounds pretty horrible. My plaques get a bit hot and itchy after a few days, but my disease has been reducing over the past few months so I really dont notice much difference over weekends other than the absence of tummy upsets.

I think I must have had a significant immunosuppression as I was quite fatigued also, which was another reason I took a break from treatment. A blood test a few months after was normal. I dont get fatigued now like I used to when I started with DMF, and I am aware of what to look out for. I also test my urine regularly and can happily say that I am in no danger of dying from liver or kidney failure in the near future either.

Cheers,

Bill

[Caroline]

Hi Bill,

Well luckily it is not that bad. I normally take my medication so all goes well. The only thing that is hard that is that I realize that I cannot do without, that sometimes makes me sad.

On the other side I am quite healthy and fit. If I scratch myself at something or whatever, that heals always very quickly.
I never have something like you describe as "fatigue", I can always continue. Or if I am a bit tired, power up myself and go again. But.. I can get quite sleepy, I really need my sleep.

btw. good for you that most of your fatigue is now gone ! An interesting side effect of DMF?

Cheers,
Caroline