My DMF adventures

[ImtheIinteam]

I'm finishing my second week or so of dimethyl fumarate. Week 1, I took 30mg daily (based on initial Fumaderm dosing), although I just have the powdered DMF from a chemist) with N-Acetyl-Cysteine, and this week I took 100mg daily for a few days before switching to 200mg every other day. I don't plan to increase this dosage until I get new labs and have been on it for another 6 weeks or so, although I'm welcome to other ideas. I've been having some hair loss lately, but that started before I started the DMF, so I'm not sure what the cause is. New supplements I am taking for it include zinc, a bioavailable B5 (Pyroxidal 5 Phosphate), lithium (5mg to help drive B vitamins into cells) and boron. I pour the correct dose of each one into one giant capsule and swallow it. I haven't had any side effects, so today at lunch I tried the DMF without cysteine--still no cramps, flushing, or heartburn. I do tend to have an iron-clad stomach and regularly take 20 supplements a day, including various digestive enzymes and probiotics, so this doesn't surprise me. My neck, which seems to be a cross of guttate and plaque psoriasis, is actually getting worse, as it often does when I try taking zinc and B vitamins such as P5P. The reason seems to be that zinc releases unbound copper, which irritates skin as the body tries to clear it, but I'm going to see a new practitioner soon to see his take on it--the dermatologist wants steroids or methotrexate, and is admitting that the Otezla is no longer doing anything for me: I might just stop it for a while.

[Bill]

Hi Nick,

At present you are working your way up to tolerating a therapeutic dose, and I would guess that you are still somewhat short of it. When I started self medicating I jumped in at the deep end and took three lots of 240 mg daily. This was pretty dumb, and even dumber was my belief that I only needed a blood test six-monthly. I think that there is far more sense in taking combined doses every second or even every third day, certainly for reasons of increased efficacy and giving your digestive tract a bit of recovery time, and perhaps also for keeping your lymphocyte count a bit higher; So please post your cell counts if you can. Regarding cysteine pre-dosing, I am taking about two grams the day before and three and a half grams at least an hour before dosing. Bacon and eggs on toast with a large glass of milk has worked well for me as a meal prior to dosing.

You sure take a lot of supplements: Have you cross-checked them all for interactions? I take multiB, C and folate daily, zinc and selenium a couple of times weekly, and have a bit of magnesium (epsom salts) when I get leg cramps.

It is really good that you have started a thread. Please ask away if you feel the need to.

Cheers,

Bill

[Caroline]

Hi Nick,

Thanks for publishing. Bill has some good suggestions.

On our side the build up is always very slowly, with only 30 mg increase per week. That is mentioned in the protocol that is used it will prevent your lymphocytes going too low.

Cheers,
Caroline

[Bill]

You know, Caroline, I would still be as impatient as a bloody kid at Christmas. 30 mg increments? I would imagine myself to be taking 800 mg doses by the first weekend, barring severe headaches and tummy upsets. So my commendations go to Nick for his restraint.

Cheers,

Bill

[Caroline]

You know, Caroline, I would still be as impatient as a bloody kid at Christmas. 30 mg increments? I would imagine myself to be taking 800 mg doses by the first weekend, barring severe headaches and tummy upsets. So my commendations go to Nick for his restraint.

Cheers,

Bill

I understand you Bill. Maybe because you know the results.
But there are several points to that.

• As you say, a sudden increase can hit you hard, I even didn't know you could get headaches, but your tummy cannot get used to it.
  
• There is quite an influence on your Lympho's.
  
• At least that is what my doc says
  
• And that is what the Tecfidera approach shows. As they go
  • The first week 240
    
  • The second week 480
    
  • and.... while they were in the beginning bragging with "no PML case",  now they have several on there status, and
    
• Going relaxed is much easier.
  

And in this sense it is very sensible of Nick go to restrained.

Cheers,
Caroline

[jiml]

Yes well done Nick, good to see you've started this thread it will be a great way to keep track on your progress .
Well done starting on a low dose that's very sensible, and with a slow build up you will hopefully not get severe side effects ( still expect some though) , as Bill and Caroline say feel free to ask if you are in doubt about anything or you begin to struggle with the side effects

Have you had a blood test yet? I would also suggest that you record you blood values here ( or at least the lymphocyte count) so you can look back easily and see if there's a trend upwards or down . Keep an eye on liver and kidney function as well

You say you were able to obtain the powdered DMF from a chemist, did he look strangely at you when you ordered it ...and were you able to source it easily ?

I'm not one for supplements myself I try to get all mine from the food I eat and it's served me well so far in life

Good luck and thanks again for starting this thread

[Fred]

Good luck Nick.

I take it this is Not a prescribed treatment? So I'll move it too Psoriasis And Psoriatic Arthritis Topics for now, but if it is prescribed please let me know and I'll put it back.

[ImtheIinteam]

Correct, this is all my own doing, although my dermatologist is aware.  Different mineral and amono acid supplements do interact, so I hope to scale back after I talk to a new practitioner tomorrow. This almost fits under "Natural Treatments." Also, I do take 3mg LDN nightly, and I bought a narrow spectrum UVB lamp last year to do my own phototherapy, although half the time 3 minutes with the lamp makes my skin red or scaly and the other half of the time the redness fades.

[Bill]

Yes, Caroline, really bad headaches that would last almost a day. Ibuprofen didnt bring much relief either. One comment I would make on a slow buildup is that the total dosage would be slightly less if you started with 200 mg twice weekly and built up with weekly increments of 200 mg. You would hit your maximum dosage from week four.

Cheers,

Bill

[Caroline]

Yes, Caroline, really bad headaches that would last almost a day. Ibuprofen didnt bring much relief either. One comment I would make on a slow buildup is that the total dosage would be slightly less if you started with 200 mg twice weekly and built up with weekly increments of 200 mg. You would hit your maximum dosage from week four.

Cheers,

Bill

Interesting in a way, cause I have never had them headaches, really never.
Maybe because of my very slow build up? It took me at least three months to come to a working dose. Remember that my medication has theoretically no limit, I know that there are people in NL who use 12 pills of 120mg to get completely clear.

Cheers,
Caroline