Almost there

[jiml]

Imagine you take 3x Fumaderm and 4x 120 mg DMF.
I think that would be feasible.
They will still monitor your blood. And the increase can be done.

I'll get out and leave you to it now, you know my thoughts on doing that. If you're under a dermatologist and also go it alone, then that is wrong in my opinion. You're not only wasting their time, you're also flushing NHS money down the toilet.  

And what about if it all goes wrong ?

No I will stop.  

I have to agree with you Fred ( if there were no other options and we didn't have a health service I would think differently )

[Caroline]

Imagine you take 3x Fumaderm and 4x 120 mg DMF.
I think that would be feasible.
They will still monitor your blood. And the increase can be done.

I'll get out and leave you to it now, you know my thoughts on doing that. If you're under a dermatologist and also go it alone, then that is wrong in my opinion. You're not only wasting their time, you're also flushing NHS money down the toilet.  

And what about if it all goes wrong ?

No I will stop.  

I have to agree with you Fred ( if there were no other options and we didn't have a health service I would think differently )

In the mean time I have learned that the NHS version in the Netherlands is far from knowledged. They are restricted by stupid rules and the insurances get more and more influence. They even seem to be able to look into the Electronic Patients Files, which are hosted with CSC an American company
Next to that I am not flushing anything into the toilet, I make use of the system for my own health. AND I keep an eye on my own health BECAUSE IT IS MY HEALTH they are dealing with. And more and more I come to the conclusion that a good doctor is difficult to find. So I have to deal with what there is available and make use of what is available. That is why I want to know all information about my blood, to be able to compare and check them, just like Bill is doing.

[Bill]

My aim in using DMF is to minimise my dosage: I would not advise sprinkling it on cereal, not least because you would want to know exactly how much DMF you were taking. Try at least to reduce your DMF dosage by the concomitant use of alternative treatments: In my case I found that larger doses taken less frequently were more effective, allowing me to halve the dosage and get more effect from the DMF. I am now controlling my p and psa with cysteine: I will resume taking DMF if I need to, but be aware that DMF can kill you, and all deaths occurred in patients under the care of specialists, so you would want to be very cautious. Harm yourself and you might also spoil an opportunity for others.

Try a bit of cysteine if you must dabble: A few grams a day wont kill you and might reduce your need for DMF. But measure it carefully and dont sprinkle it on your cornflakes unless you want them to taste disgusting.

Cheers,

Bill

[jiml]

Thanks Bill i agree with your sentiments so a good cautionary note  

And while deaths from PML occured whilst under the supposed care of professionals ..... It was lack of monitoring of the blood that caused the death not the drug itself

[Bill]

Hi Jim,

As it happens, one pml case developed with a blood count that was thought to be in a safe range. The risk is small, but the aim of treatment should be to maximise the benefit and minimise the risk. Increasing your dosage will generally increase your risk.

Cheers,

Bill

[Caroline]

Thanks Bill i agree with your sentiments so a good cautionary note  

And while deaths from PML occured whilst under the supposed care of professionals ..... It was lack of monitoring of the blood that caused the death not the drug itself

Although my reaction seems more militant, I certainly agree with Bill.
But Jim, as Bill says. DMF can kill you.
He also says: "that all cases of death occurred under the care of specialists" !!!

That gives food to my attitude. I don't want to leave it to the specialists, as it might kill me, I do want to know as much of it as possible and to know what the ranges and limitations are. So that I can be very carefully with what I consume. I shall try to gather more information on cysteine. That is one thing for sure.

Hi Jim,

As it happens, one pml case developed with a blood count that was thought to be in a safe range. The risk is small, but the aim of treatment should be to maximise the benefit and minimise the risk. Increasing your dosage will generally increase your risk.

Cheers,

Bill

Bill,
Which case do you mean?
For psoriasis there are only two cases known worldwide.
For MS, in the short time of it existance, there is already one case known. In my opinion the do make mistakes during the build up phase which goes too fast.

The PML case in the Netherlands, well I know her, and I for sure know that she, or her GP, did not follow the protocol when he lympho counts became too low.

Cheers,
Caroline.

[Bill]

This one, Caroline.

PML in a Patient without Severe Lymphocytopenia Receiving Dimethyl Fumarate

Cheers,

Bill

[Caroline]

This one, Caroline.

PML in a Patient without Severe Lymphocytopenia Receiving Dimethyl Fumarate

Cheers,

Bill

Bill,

I did not yet know of this.

My idea.... Is that it seems that someone deliberately is trying to discredit Psorinovo.

Why do I think that ?
Well can you please tell me the definition of "compound" ?
For me a compound is a mixture of two or more chemicals or 'things', so in that case Fumaderm is a compound of monoethylfumarate, dymethylfumarate and a number of salts.
But it may be that there are different definitions, I am not a natural English speaker, so please enlighten me.


Psorinovo however consists of "one" thing, only DMF, and that in a slow release form. This slow release is a trick that uses a complete harmless and non active ingredient called pumice. It just dissolves in your intestines and has no reaction whatsoever with its environment.
So this means for me that there is something rotten in the state of Denmark, an expression that we also use over here in the Netherlands.

I think I am going to contact the producer of it and talk about this case, and will try to find what has happened.
Of course I will report on that.

Cheers,
Caroline.

[Bill]

Hi Caroline,

My understanding is that a compounding pharmacy makes the pills on site. The concern of the authors seemed to be that DMF could deactivate lymphocytes, so an apparently safe count could mask a dangerously compromised immunity. They wanted more specific testing which would be far more expensive. By maintaining higher counts I hope that I am not at risk.

Cheers,

Bill

[Caroline]

Hi Caroline,

My understanding is that a compounding pharmacy makes the pills on site. The concern of the authors seemed to be that DMF could deactivate lymphocytes, so an apparently safe count could mask a dangerously compromised immunity. They wanted more specific testing which would be far more expensive. By maintaining higher counts I hope that I am not at risk.

Cheers,

Bill

So the word "compound" in this sense makes no sense.
Being it made by a pharmacy or big pharma is equal...