Bill's pure dimethylfumarate thread

[Caroline]

Good to hear Bill !
Come over your cold quickly.

In my experience it always takes a bit of time before the PsA starts coming up when I lower or do not take my pills. But that may be due to the slow release of Psorinovo, although I expect that it still will be released within 24 hrs.

[jiml]

Over a week between doses Bill that's a big gap... Look forward to when you resume to see if it's still as effective
Get well soon

[Bill]

Thanks for your positive thoughts. I have no reason to suspect that DMF will not work as well as ever for me, but I dont see the point of taking any risks with my disease so well controlled. DMF suppresses the T killer cell (cd8) count, so reducing one's ability to deal with viral infections. The low cd8 count may not be evident from the total lymphocyte count, so recognising any symptoms of lowered immunity is important. Yes, I am probably being overly cautious, but the increase in symptoms has not been dramatic, and the worsening arthritis may have been more a symptom of my cold.

So many p treatments are like walls to keep the wolf out, and those walls often fail. Hopefully my continued treatment, underpinned with DMF, will turn the wolf into a pussy cat.

Cheers,

Bill

[Caroline]

Thanks for your positive thoughts. I have no reason to suspect that DMF will not work as well as ever for me, but I dont see the point of taking any risks with my disease so well controlled. DMF suppresses the T killer cell (cd8) count, so reducing one's ability to deal with viral infections. The low cd8 count may not be evident from the total lymphocyte count, so recognising any symptoms of lowered immunity is important. Yes, I am probably being overly cautious, but the increase in symptoms has not been dramatic, and the worsening arthritis may have been more a symptom of my cold.

So many p treatments are like walls to keep the wolf out, and those walls often fail. Hopefully my continued treatment, underpinned with DMF, will turn the wolf into a pussy cat.

Cheers,

Bill

A pussy cat is indeed much nicer and controllable Bill

Me too, I keep a very good eye to myself concerning viral infections like the flu and my resistance to anything. Up to now I have never met any signal that I might be vulnerable more than others. Even a bit opposite, of course I sometimes have a flu also, but mostly I seem to be fitter than the people around me like my colleagues and family.
This doesn't prevent me to stay alert and to keep looking for those signals. I know that most of the doctors, inclusive dermatologists, do not have an eye for that in their busy businesses. Sometimes I even have the idea that they are also more or less experimenting on the basis of an educated guess.

Cheers,

Caroline

[Fred]

No Bill I don't think you are being over cautious, I think you are being sensible. It's so easy for someone treating themselves to miss out on regular checks or noticing if something is wrong, but the way I read your posts you are doing as much as a professional would (or probably more)

I don't suppose there is anyway of telling if the fatigue and sore throat is do to a cold, or your treatment. As you know the Bio's can cause cold/flu like feelings, I'm not saying your treatment can but just wondered if it is possible?

At least you have one advantage over my treatment, you can stop whereas I'm stuck with it for three months.

Get well soon Bill, and lets hope it's just a cold and will pass soon.

[Bill]

Thank you, Fred. I'm pretty sure it was the prelude to a viral infection. What is surprising me is how little redness there is in my plaques and how little the arthritis has changed. I have taken only one dose of analgesics since I stopped the DMF. Whether it is the cysteine or the randomness of the disease I do not know. I might stay on the cysteine alone and see how long my disease remains unchanged.

Cheers,

Bill

[jiml]

Thank you, Fred. I'm pretty sure it was the prelude to a viral infection. What is surprising me is how little redness there is in my plaques and how little the arthritis has changed. I have taken only one dose of analgesics since I stopped the DMF. Whether it is the cysteine or the randomness of the disease I do not know. I might stay on the cysteine alone and see how long my disease remains unchanged.

Cheers,

Bill

It's great things are still looking good with your joints and skin .... Sounds like you have a good plan. I hope it works out for you ..., you will always have the DMF to fall back on ... If it goes pear shaped ... Good luck
Jim

[Bill]

An update. I had a blood count earlier this week. Total wbc 4.7 and lymphocyte count 1.0. A diy count that I did at the same time was 5.5 and 1.18, so my counts seem to be overestimating by a bit over 15%. WBC and lymphocyte counts can drop with influenza, so hopefully that was the cause. I will get another count in about a month's time. I have been nearly five weeks without DMF, and while the skin has remained surprisingly clear I have noticed a bit more arthritis in my spine: Not a great amount, but enough to remind me of a place I do not wish to return to. I will resume taking DMF at 800mg twice weekly from tomorrow.

Cheers,

Bill

[Caroline]

Thanks for update Bill.
Good luck with the restart.

[Bill]

Thanks, Caroline. I am pleased with how little the psa deteriorated, but I dont want it to worsen any further. I am hoping that two doses a week will be enough together with the cysteine.

Cheers,

Bill