The little things (and drugs)

Everyday living
1

Afternoon All,

Where has the sunshine gone? I was looking forward to escaping work and getting some VitD!

Anyway, to what I wanted to ask… I am newly diagnosed with RRMS (this Feb) and finally have an appointment with a neurologist to discuss drug options. My question to you lovely lot…

Is there anything you wished you had asked when you first talked about DMD’s and MS management?

Secondly I have had to tell my employers about my diagnosis because I am a Chemistry teacher, and I work in the lab with kids and chemicals, not a great thing when mixed together at times. I absolutely love my job and could not imagine doing anything else! I have a meeting with the head honcho’s at my school about ‘how they can help me’ with timetable and other things - I have several ideas to put by them but I was wondering if anyone out there had any other little tips? Thinks that they have done/discovered in their home or work place?

My list currently consists of not having to move so much around our MASSIVE school site, a new comfy chair at my desk because my posture is terrible and not having to sit through 3 hours of staff training with no break! (seriously, we would be strung up if we did that to the kids!) Any other hints and tips would be welcomed with open arms!

Many thanks and Happy Friday,

Jenny

2

Hi Jenny,

There are many disease modifying drugs now. I have been on Rebif 44 for 15 years and it’s been a good drug for me. At the time of diagnosis, I applied to get on to the Campath trial. Campath is called Lemtrada now and in my opinion, it’s the very best treatment to reduce RRMS to a minor annoyance.

You will read about % s of effectiveness, but these are statistics. Whatever drug you are offered/choose, there will be someone for whom it didn’t work.

All drugs have side effects, MS is after all, a serious disease. Mine haven’t bothered me over the years, just big red blotches, at injection sites. Others have headaches, flu like symptoms, pain and others won’t.

I have discovered thanks to the MS research blog from Barts hospital, that it looks as though I am a super-responder. This means that I haven’t progressed in 15 years, but I have had terrible relapses. One lasted 9 months. I haven’t had a relapse for 3 years now, so I’m probably due one. It may not happen and no one can predict if it will arrive or not.

I did stop work for some years, but started a new job last September. I had been struggling a bit with walking and was offered Fampyra, which has been a miracle. I can stand up for as long as I need (which is important when you are a musician). I get tired, but just about manage the fatigue.

I have nerve pain in my lower limbs (neuropathic pain) which gets worse when I’m tired. I’ve been taking amitriptyline since 2002, which helps.

I hope this has been of some help to you,

best wishes,

K

3

hi jenny

the drugs are either:

  • injections

  • tablets

  • infusions

the injections are not as scary as they sound, the main problems is around injection sites.

some injections are weekly or 2-3 times a week

copaxone is a daily jab.

some are intra muscular and some are sub-cutaneous.

the tablets are a relatively new thing.

they are aubaggio, tecfidera and gilenya.

the infusions are lemtrada and tysabri.

these are the big guns.

i personally started on copaxone and did well on it for 5 years but then my injection sites became painful.

i was unable to rotate sites and was only using 3 of the 8 resulting in a bad case of lipotrophy which my ms nurse was appalled by.

i am now on tecfidera.

one thing i wish i’d known about sooner is the ms therapy centres.

these are brilliant places where you can try a range of therapies at a subsidised cost.

i got for HBOT (hyper-barric oxygen therapy) which involves sitting in a decompression tank wearing a mask through which we breath oxygen for 60 minutes. it takes 15 mins to get to the right pressure, 60 mins breathing the oxygen and 15 mins coming back to the normal pressure. you absolutely need something to read in there or you’d go mad with boredom. i love it because it gives me 90 mins of uninterrupted reading time.

your ms nurse will discuss all the medications with you.

don’t panic, look at it as a way of fighting back!!

carole xx

4

I wish I’d asked for an effective drug (Campath or Tysabri) - I think I’d be in a different and better place now. Oh, and I suppose I wish those drugs had existed when I was diagnosed. I’m joking about that but the research shows much better outcomes for people who start on the really good drugs soon after diagnosis and if I was in your position I wouldn’t delay.

Good luck!

5

Hi - how is it going? I was finally diagnosed with RRMS almost four years ago, having suffered several falls (two broken wrists, ankle & shoulder in 4 different falls). I can no longer walk far, especially when I am tired, so use a mobility scooter everywhere, rain, wind or shine as after a couple of years of severe spasms, both my feet and hands are now numb almost 24/7)

I take Baclofen, - up to 6 a day, and always before going to the gym twice weekly. I use a vitamin D spray (3000) daily. Bods without MS need 400 a day, but we need 4000 daily. My GP would only prescribe vitamin D with calcium, nasty, chewy, strawberry flavour with only 200 per tablet. Holland and Barrett sell the 3000 spray, but half the price on-line. Also I have done a course of Chinese Acupuncture (£200 frightening cost) but it has certainly improved my circulation, as my hands and feet previously were blocks of ice. My next Neuro appointment is end June, so hopefully she can give me some new advice on my increasing symptoms.

My MS nurse suggested asking the GP for Amrtripbyline, but not happy as this it is an antidepressant.

You say that are only recently diagnosed, sadly the symptoms are so varying, therefore it is often difficult for even the professionals to suggest the correct solution.

Initially, I found my GP, MS nurse and physio very helpful and supportive, but progressively less so. I had to change GP when I moved last year, my old one was brilliant, only saw her about 6 times in three years, but always listened and very positive. Sadly my new GP will only give me an appointment for things non-MS related. Mothers Day, I fell over backwards after putting my beautiful flowers in water, feet gave way, collapsed, demolished my kitchen vegetable rack, badly bruised my arms, big lump on my head and landed on my butt on a cold tiled floor. GP suggested frozen peas on my head bump, and lots of bed rest for my back, I pointed out the reason for my fall was related to total numbness in my feet, and she suggested I wait for my next Nuero appointment to discuss that.

So I can only suggest that you see your specialist when any symptoms progress, or you have new ones. Build a good relationship with your MS nurse, mine is fantastic, but so busy, I only manage about 2-3 appointments a year. Also if your G.P. is not supportive, look for a new one.

This forum is great, as if you ask any questions, someone out in this big fuzzy world of MS has gone through the same as you. So take care and look after yourself - Mary