General Forum for discussing Cpn issues and questions.

Summer sun and doxycycline.

Submitted by Sarah on Thu, 2019-03-07 13:34

I want to get in quick this year before this becomes a problem.  Not being a person addicted to sunbathing I tend to forget mentioning it, but you can  get rather severe sunburn whilst taking doxycycline, or any tetracyclines come to that.  It is easy to avoid it though: sit in the shade, wear lightweight linen clothing with arms covered and wear a sunhat, wear high factor sunscreen and don't fall asleep in the shade if you are likely to not wake up until the sun has changed it's position too much.

New Patient Stories.

Submitted by Sarah on Sat, 2019-01-26 14:39

"Patient Stories" is vastly out of date.  It seems as though Jim had not put anything new up for years.  Many people have come, got better and gone without having their stories told.  Now we have much more spare space, so please send me your story and we will put it up.  People still part-way through treatment are as welcome as anyone, maybe more so. 

Let's start this year as we mean to go on!

Fampridine versus biotin

Submitted by supaguy on Wed, 2019-01-16 09:37

Has anyone with MS tried Fampyra (fampridine). From what I have seen, it looks like exactly the thing that I need. I saw a neurologist today and she explained that they can't prescribe it because it's not cost-effective in NICE guidelines. It does indeed seem to cost a lot of money ... but nothing like the sort of money that they are spending giving people  Tysabri. it is basically just a potassium channel blocker that speeds up impulses down the axons.


This drug is another one of those (like to Tysabri) that is made by Biogen.