My DMD/DMT journey

Everyday living
1

The journey started back when the drugs were called DMDs!

  • November 2005: Copaxone. For about 2 months.

The welts got bigger and bigger, until I had one that was the size of an egg on my thigh. The neuro saw it and pulled me off immediately, citing an allergic reaction… It took weeks for that welt to go down.

  • February 2006: Avonex. For about 8 years.

I never stopped getting flu-like symptoms although they did lessen somewhat after a couple of years. MS seemed to be getting worse though, and I lost energy and strength and got really bad tremor in my hands and arms and sometimes legs. I had twitches, bladder & bowel problems but…

it turned out the Avonex had caused thyroid dysfunction which was missed at successive annual neuro check-ups. Thyroid dysfunction is a known risk of all beta-interferons. All those extra problems were the thyroid dysfunction, which nearly killed me, causing racing heart for hours on end and damaging my heart. This was finally spotted by a neurology registrar. I have huge respect for registrars. (It’s not the only time a registrar has saved me.) The GP said I was a week off heart-failure. The thyroid dysfunction became Graves Disease, which was treated for over 2 years but has not resolved. It couldn’t, because I was still taking the problem Avonex.

  • December 2014: Aubagio. For 8 months

I had to fight to get on Aubagio, because my local primary care trust won’t swap you from one DMT to another. I wrote several letters to the neuro explaining how the thyroid problem had nearly killed me, how I wasn’t able to get better because I was still taking the beta-interferon and how there was nothing else I could take (as a RRMS patient) because the others are beta-interferons or copaxone, to which we know I am allergic.

I was on aubagio for 8 months. I had morning headache every day for the first 2 to 3 months of treatment and continued to have abnormal stools right through the treatment. Not as bad as diarrhoea, though. But my white cell counts have plummeted, particularly neutrophils (that fight bacteria). Initially I was put on a tablet every other day instead of daily, but the count continued to drop. I was pulled off aubagio last week when the neutrophil count reached 0.7 billion/litre (should be at least 2) but the count has dropped further to 0.6 since because the drug has a long (90 day) half-life. I am on weekly blood-tests to check the white cell counts. I have been warned by a letter from the neuro to go straight to the nearest hospital if I get an infection - not GP, but hospital. Ugh.

And I still have the thyroid problems, though they are lessening now.

So, is this it? Is this the end of my DMT journey?

2

Gosh Hilo, you have had quite a journey with those DMT’s.

GP’s dealing with infections can be so slow, too slow, sending off urine samples to the lab, waiting for the results and getting antibiotics.

I bypass the GP surgery now if I have an infection, I check my urine at home with a dipstick kit. I phone 111 if I have an infection and get a same day appointment at the hospital out of hours GP. They do a UTI test at the hospital and they have before handed me antibiotics to start straight away.

If I had a letter like your one from your neuro I would photocopy it and leave a copy in my handbag ready to show the hospital doctor if I had an infection.

xx

3

But with your low cell count your neuro could be advising you go to A&E rather than hospital out of hours GP if you have an infection? I don’t know, would be best to get that clarified.

4

Crumbs, what rotten luck you have had with the DMDs. What does the neuro say your options are now? Leaving out the things that you have tried already or will obviously need to avoid for related reasons will cross a good few off the menu, won’t it? It is so disappointing when drugs that we hope will be terrific for us turn out not to be. I hope that you find something to suit - if indeed you intend to pursue it. You must surely be feeling a bit fed up with it all - I’m sure I would be.

Alison

5

Dear HiLo.

I think Chapter Four of your trials with DMDs might be entitled Tecfidera.

You will of course have to wait for body to be free of Aubagio, by which time your blood cell count will hopefully look a bit more respectable. Reasons for tecfidera:

  • no injections; therefore no thigh egg welts
  • no flu like symptoms (there are other symptoms, but i doubt they will compare to what you have already endured)
  • it is reportedly the most effective RRMS DMD on the market right now
  • if it doesn’t work for you, it can be out of your body in less than 24 hours (not 90 days, but less than 1!!!)

The very abso-frikkin-lutely best of luck to you!