Bill's pure dimethylfumarate thread

[Bill]

Another update. Six months this time, but that is because there is not much to report other than a small drop in lymphocytes (bugger!). Now, do I have a plan? Of course I do. For a bit over the past month I have been upping the exercise (back on the bike, weights, more walking). The blood test showed a drop in cholesterol from 5.2 to 4.4 and the liver function parameters all returned to normal levels. But, blood haemoglobin and lymphocytes dropped slightly. This leads me to suspect that the increase in white cells I saw a few years ago may be related to a combination of exercise and B vitamin and iron supplementation, so I will test the idea. Basically B12/folate injections fortnightly and 330mg ferric sulphate orally daily for six weeks, then twice weekly until my next blood test in August. Currently I am taking 430mg of dimethyl fumarate twice weekly and continue to maintain excellent control of the psoriasis and arthritis. I trust and hope that you are all keeping well in these shitty times.

Cheers

[jiml]

Looking very good Bill you are managing to keep it under control with a very low dose of DMF and managing to keep the bloods looking good, ok the lymphocyte count is a bit low but still acceptable in my opinion
Great update Bill stay safe in these uncertain times 

[Fred]

All good here Bill thank you for asking. I hope all is well for you and yours.

Not much to report is good, thank you for updating.

[Bill]

Thanks, Jim. The low count is at the lower end of what I want: Not great but not a major problem and another three months to see how things change.

Thank you, Fred. Barring a few bureaucratic stuff ups, Australia has dodged a bullet with covid-19. Being an island has helped a lot.

Cheers

[jiml]

Thanks, Jim. The low count is at the lower end of what I want: Not great but not a major problem and another three months to see how things change.

Thank you, Fred. Barring a few bureaucratic stuff ups, Australia has dodged a bullet with covid-19. Being an island has helped a lot.

Cheers

Sadly being an island didn't help us Bill we just kept letting the planes come in

[Bill]

It is so sad, Jim, but all too easy to look back and think what ought to have been. I certainly had no idea of the severe storm approaching. Fortunately for me there are only 20 active cases in Queensland, 3 in ICU, 6 in hospital, and 11 in home quarantine. There does not seem to be any spread by asymptomatic carriers, which would suggest that there are no asymptomatic carriers in the state, so I hope to see things improve markedly very soon.

[Caroline]

It is so sad, Jim, but all too easy to look back and think what ought to have been. I certainly had no idea of the severe storm approaching. Fortunately for me there are only 20 active cases in Queensland, 3 in ICU, 6 in hospital, and 11 in home quarantine. There does not seem to be any spread by asymptomatic carriers, which would suggest that there are no asymptomatic carriers in the state, so I hope to see things improve markedly very soon.

Still Bill, the virus will not go away just because it has not visited your surrounding. I fear it is here to stay and because we are in the 21st century, it will not cease to spread. Even in the middel ages, something like the pest was able to spread quite far.
So inevitable some day it will reach anyone in the world unless we are able to make a good vaccine so we can reach a state where the virus is not able to spread as most of the people are immune and thus will not spread it.

[Bill]

Quarantine and social distancing can work, Caroline, as does the urban sprawl in Australia. I just hope that an effective therapy is soon developed for the severe cases. Stay safe, Caroline.

[Bill]

The latest test result showed a drop in lymphocytes, so I will be on a DMF holiday before getting another test in about four weeks time.



So why the change? I believe that NAC is an antagonist of DMF, but I stopped taking it long ago. I exercise a lot more lately (since late March) and have lost about seven kilograms, so that may well be a factor. I have taken iron supplements less than weekly, but I don't see great relevance as my blood haemoglobin has increased. I have had B12/folate shots less than monthly, but again I don't see this as a factor. Whatever the cause(s), the upshot is that I appear to be getting more sensitive to the medication, so when I hopefully resume dosing in a month's time I will be reducing from 430mg to a lower dose that still causes a flush: An arbitrary parameter, but a common symptom in patients getting a result from the drug. My disease remains very inactive.

I hope you are staying covid free and wish you well.

Cheers

[Caroline]

Hi  Bill,

Thanks for the report.
Indeed sensible to have a DMF vacation and reduce the dose.

I can add to that, that I experience the same change in sensitivity. Where a number off years ago I needed 4 to 5 pills I now, since my stop and restart after the autovaccine therapy treatment, need only one sometimes two, pills to keep the disease at bay. And indeed I also still experience the flushes, despite the low dose. Gonna do a test in about a week myself also.

Have a great continuation of your scheme and stay safe