Skilarence part 2

[OneBigItch]

Thanks everyone. 

I think 0.9 is the lowest my lymphocyte count has been. Is this numer ok?

[Caroline]

Thanks everyone. 

I think 0.9 is the lowest my lymphocyte count has been. Is this number ok?

You should discuss that with you doc of course.
But in the latest guidelines in the Netherlands it says that the lowest value for the lymphocyte count when using DMF, can be 0.7, if it is that they normally ask you to lower the dose of the medication.
The previous guideline even mentioned the lowest point at 0.5, why they have changed that a few years ago, I don’t know why they did that.

In the past I have regularly been on 0.7, even once on 0.4, then I stopped for a while of course.

Normally the lymphocytes go down and in the long term use of a steady dose, they tend to go up again, but you need a regular check.

There is one interesting aspect and that is that the lowering of the lymphocytes tend to have an association with the functioning of the medication, so that should be a comforting thought.

[jiml]

Hi and great that you are mostly clear again on just the one tablet and pleased that you will be upping the dose soon, although in view of your continuing cramps it might be wise to take 1 one day and 2 the next that way you are only increasing the dose by 50% instead of doubling it, if after a week you're tolerating it well then increase to 2 a day (just my thoughts) but that may also help the lymphocytes getting back to above 1 again

0.9 is quite a safe level for the lymphocyte count mine are often that low although currently at 1.04 mine have been as low as 0.7 . But the beauty of the treatment is that if you reduce the dose or stop the count will recover ...

Normal count is anything between 1-3 so you're just under but not dangerous

[Bill]

I'd second Jim, but don't take things for granted. My count is stable for the most part, but it has dropped rapidly on occasion. One time I got very tired and caught a bad cold, the other time I had no indication (both counts of 0.6). Recovery of the count will generally occur with a pause or cut in dosage, but the rate of recovery isn't predictable. I have paused dosing for a month a few times and observed both a doubling of the lymphocyte and no change. Regular blood testing is essential with dmf (says me who hasn't had a blood test since August- oh dear).

[OneBigItch]

For some reason I still get cramps on just one tablet, so I've been taking a few breaks to just give myself a rest from the aches, it's draining. 

I've often stopped for 3 to 4 days then started up again. I don't know if this is a good thing to do or not, but sometimes I just need a break from feeling crappy. I now have some patches coming back so after another 3 day rest I'm back on one tablet a day.

Is it ok and safe to keep stopping like this?

[jiml]

For some reason I still get cramps on just one tablet, so I've been taking a few breaks to just give myself a rest from the aches, it's draining. 

I've often stopped for 3 to 4 days then started up again. I don't know if this is a good thing to do or not, but sometimes I just need a break from feeling crappy. I now have some patches coming back so after another 3 day rest I'm back on one tablet a day.

Is it ok and safe to keep stopping like this?

I'm sorry that you still experience the cramps after all this time, as for me they eased off after a few months ... I can't think of an answer as you always take with a meal and plenty of fluid, I can't remember but have you tried a yogurt before the tablet ? Or changing the time you take it to after your evening meal ?

And I stopped taking mine for a few days  while I had covid and started on 5 a day straight after covid was clear. So I can't see any problem especially as you are on a low dose

[Caroline]

For some reason I still get cramps on just one tablet, so I've been taking a few breaks to just give myself a rest from the aches, it's draining. 

I've often stopped for 3 to 4 days then started up again. I don't know if this is a good thing to do or not, but sometimes I just need a break from feeling crappy. I now have some patches coming back so after another 3 day rest I'm back on one tablet a day.

Is it ok and safe to keep stopping like this?

Yes, as far as I know there is no problem with that.
The developer doctor of our slow release version in the Netherlands, Psorinovo, even did state that it was sensible to use the pills during the week and skip taking them in the weekend.
If you ask Bill, he takes his dose only twice a week, and with him it works flawlessly.

You could ask for instead of one tablet, for the smaller dose of 30 mg and then take 4 of them over the day. That would mimick a slow release and could reduce the side effects.

[Bill]

I don't think any psoriasis treatment works flawlessly, Caroline. I think that taking some n-acetyl cysteine (about 1.5 grams) about an hour before taking dmf seems to reduce the side effects for me. I also take glutamine and creatine with the cysteine. I think the combination useful, but I don't know that it is. I also have no idea if it would be of any help with a pharmaceutical form of dmf. If I cannot use dmf I will have to try other treatments. I'd rather keep using something that works well for me. I suspect that there is a cumulative benefit from long term dmf use, in my case allowing a reduction in dosage, but not acting on a shingles infection early has been unpleasant.

[Forest Walker]

Do you have shingles, now?  Ouch!

[Caroline]

I also see the cumulative benefit Bill. My dosage is currently very low.