[Split From] Stelara round two

[D Foster]

I have had a quick look at the two threads and I must look at this closer , it's very complex all the information but to me it seems that there is an awful lot they still do not know about it. I will look at it further because I find it rather fascinating and reserve my opinion till a later date. I find it a little bit peculiar to buy a kilo of the stuff to sprinkle it on my cornflakes with no monitoring in place to check on things .

[Caroline]

I have had a quick look at the two threads and I must look at this closer , it's very complex all the information but to me it seems that there is an awful lot they still do not know about it. I will look at it further because I find it rather fascinating and reserve my opinion till a later date. I find it a little bit peculiar to buy a kilo of the stuff to sprinkle it on my cornflakes with no monitoring in place to check on things .

In an earlier reaction I already said that there is a careful protocol of monitoring in place. Certainly during the build up phase. As this is a non-Big-Pharma product, the doctors that have developed it are very careful not to get problems with it. Perhaps even over careful. So the monitoring is maybe even better than it is in normal circumstances. Even now, after years of using I am checked every half year. 30 years of experience have learnt that most important are the lymphocytes and liver and kidney functions. In these years over thousands of patients, there have been two problems. One kidney problem, in fact caused by something else but became more critical by the DMF, and one PML case where obviously the protocol was not followed, lympho's became too low, no checks were done and the treatment was not stopped.

So to my idea there is nothing peculiar.

[D Foster]

I have had a quick look at the two threads and I must look at this closer , it's very complex all the information but to me it seems that there is an awful lot they still do not know about it. I will look at it further because I find it rather fascinating and reserve my opinion till a later date. I find it a little bit peculiar to buy a kilo of the stuff to sprinkle it on my cornflakes with no monitoring in place to check on things .

In an earlier reaction I already said that there is a careful protocol of monitoring in place. Certainly during the build up phase. As this is a non-Big-Pharma product, the doctors that have developed it are very careful not to get problems with it. Perhaps even over careful. So the monitoring is maybe even better than it is in normal circumstances. Even now, after years of using I am checked every half year. 30 years of experience have learnt that most important are the lymphocytes and liver and kidney functions. In these years over thousands of patients, there have been two problems. One kidney problem, in fact caused by something else but became more critical by the DMF, and one PML case where obviously the protocol was not followed, lympho's became too low, no checks were done and the treatment was not stopped.

So to my idea there is nothing peculiar.

Does our friend in OZ get checked after sprinkling on his food, if it's checked and looked after then fine and if it works then great.
There are a great many drugs that I would not take unless I really had to and MTX is one of them however sometimes you do not have a choice.

[jiml]

I have had a quick look at the two threads and I must look at this closer , it's very complex all the information but to me it seems that there is an awful lot they still do not know about it. I will look at it further because I find it rather fascinating and reserve my opinion till a later date. I find it a little bit peculiar to buy a kilo of the stuff to sprinkle it on my cornflakes with no monitoring in place to check on things .

In an earlier reaction I already said that there is a careful protocol of monitoring in place. Certainly during the build up phase. As this is a non-Big-Pharma product, the doctors that have developed it are very careful not to get problems with it. Perhaps even over careful. So the monitoring is maybe even better than it is in normal circumstances. Even now, after years of using I am checked every half year. 30 years of experience have learnt that most important are the lymphocytes and liver and kidney functions. In these years over thousands of patients, there have been two problems. One kidney problem, in fact caused by something else but became more critical by the DMF, and one PML case where obviously the protocol was not followed, lympho's became too low, no checks were done and the treatment was not stopped.

So to my idea there is nothing peculiar.

Does our friend in OZ get checked after sprinkling on his food, if it's checked and looked after then fine and if it works then great.
There are a great many drugs that I would not take unless I really had to and MTX is one of them however sometimes you do not have a choice.

Yes he does read this post Dave  RE: Bill's pure dimethylfumarate thread

[D Foster]

I have had a quick look at the two threads and I must look at this closer , it's very complex all the information but to me it seems that there is an awful lot they still do not know about it. I will look at it further because I find it rather fascinating and reserve my opinion till a later date. I find it a little bit peculiar to buy a kilo of the stuff to sprinkle it on my cornflakes with no monitoring in place to check on things .

In an earlier reaction I already said that there is a careful protocol of monitoring in place. Certainly during the build up phase. As this is a non-Big-Pharma product, the doctors that have developed it are very careful not to get problems with it. Perhaps even over careful. So the monitoring is maybe even better than it is in normal circumstances. Even now, after years of using I am checked every half year. 30 years of experience have learnt that most important are the lymphocytes and liver and kidney functions. In these years over thousands of patients, there have been two problems. One kidney problem, in fact caused by something else but became more critical by the DMF, and one PML case where obviously the protocol was not followed, lympho's became too low, no checks were done and the treatment was not stopped.

So to my idea there is nothing peculiar.

Does our friend in OZ get checked after sprinkling on his food, if it's checked and looked after then fine and if it works then great.
There are a great many drugs that I would not take unless I really had to and MTX is one of them however sometimes you do not have a choice.

Yes he does read this post Dave  RE: Bill's pure dimethylfumarate thread

I have read his post Jim and while I reiterate that we have to take what works some of the high doses he talks about seem worrying ,there are quite a few side effects with it ,Caroline mentioned one PML case but on the US site drugs dot com it does indicate that this is not quite as rare as one case but these are MS sufferers that they are looking at. Whatever works , they do say on drugs dot com that Aspirin half an hour before helps with the flushing.

[Caroline]

I have read his post Jim and while I reiterate that we have to take what works some of the high doses he talks about seem worrying ,there are quite a few side effects with it ,Caroline mentioned one PML case but on the US site drugs dot com it does indicate that this is not quite as rare as one case but these are MS sufferers that they are looking at. Whatever works , they do say on drugs dot com that Aspirin half an hour before helps with the flushing.

Dave can you tell me more on that?
There is one case of PML after the use of Psorinovo,
As far as I know there is also one case of PML after the use of Tecfidera.

In both cases it must have been the not following of the protocol. At least Psorinovo has this protocol. I don't know the protocol of Tecfidera. They may be sloppy.

Remember though that MTX has hundreds of PML cases !!!!

And again, I think for the 17th time i say this, the flushing is no big deal. There is totally no problem with that even it is a bit funny. For people with meunieres the flushes may even work as a cure.

There are not few side effects... Apart from the flushing, there is only one side effect that you really may feel and that is a bit of mumble intestines.
Remember also that the US has hardly any history with DMF. Almost all knowledge is in Germany and the Netherlands. I am not so confident in what a US drugs site thinks of it. Do they really use it? How long?
Or is it from hearing saying, than it is totally unreliable.

[jiml]

Probably the problem with Tecfidera is that they start on a high dose .... No slow build up. If the monitoring is sloppy on high dose it's quite possible for the lymphosite count to drop to very dangerous level .....

[Caroline]

Probably the problem with Tecfidera is that they start on a high dose .... No slow build up. If the monitoring is sloppy on high dose it's quite possible for the lymphosite count to drop to very dangerous level .....

If they start on a high dose, than that is The recipe for trouble.
They have told that they did a lot of research and that story is positioned as being the cause for the high price, but if they didn't even work out the fact that you have to start in a gradual build up phase, then I am really starting to question the quality and duration of their research.

Good thinking Jim!

[Fred]

Tecfidera

Starting dose:

120 mg twice a day.

Take this starting dose for the first 7 days, then take the regular dose.

Regular dose:

240 mg twice a day.

Swallow each capsule whole, with some water. Do not divide, crush, dissolve, suck or chew the capsule as this may increase some side effects.

Take Tecfidera with food – it may help to reduce some of the very common side effects.

What Tecfidera contains:

The active substance is dimethyl fumarate. Tecfidera 120 mg: Each capsule contains 120 mg of dimethyl fumarate. Tecfidera 240 mg: Each capsule contains 240 mg of dimethyl fumarate.

The other ingredients are microcrystalline cellulose, croscarmellose sodium, talc, silica, hydrophobic colloidal, magnesium stearate, triethyl citrate, methacrylic acid – methyl methacrylate copolymer (1:1), methacrylic acid – ethyl acrylate copolymer (1:1) dispersion 30%, simeticone, sodium laurilsulfate , polysorbate 80, gelatin, titanium dioxide (E171), brilliant blue FCF (E133), yellow iron oxide (E172), shellac, potassium hydroxide and black iron oxide (E172).

---

On a side note which interested me:

Consumption of more than a small quantity (more than 50 ml) of strong alcoholic drinks (more than 30% alcohol by volume, e.g. spirits) should be avoided within an hour of taking Tecfidera, as alcohol can interact with this medicine. This could cause inflammation of the stomach (gastritis), especially in people already prone to gastritis.

Sorry carry on.

EDIT: *Please remember readers that Tecfidera is prescribed for MS and not Psoriasis, and this discussion is about dimethylfumarate (DMF)

[jiml]

I hadn't read that Fred .... If the same applies to all DMF Tablets then I'm doing it wrong washing them down with a pint of beer or cider   ( not the breakfast oneš though )