GP visit today with a list!

[Scully]

Morning Everybody,

 

I hope you all had a good weekend.

 

Visit to GP this morning to enquire about the drug 'Fampyra' which has now been licensed here in the UK and is supposed to aid walking and help with spasticity.

 

My mobility is pretty bad now, uncoordinated, slow and painful. So I thought I'd ask him.

 

Not surprisingly he hadn't heard of it, but has agreed to do some research and get costings etc. I gather it is pretty expensive so it will depend on whether our ailing NHS will fund it or not. I will keep you posted.

 

The muscle spasms are increasing so we agreed to increase the baclofen. The only other alternative he could offer was a tranquilizer. Im not keen to go down the tranquilizer path, so I will up my daily baclofen. Now 50mg per day.

 

Whilst I was there, I had him look at some sore and irritated skin on both my outer thighs which appeared a few weeks ago and won't go away. Apparently it's eczema!! Never ever had any skin problems whatsoever, so was a tad stunned! He also mentioned that eczema tends to be symmetrical which is why it's on both thighs, in the same place. I didn't know that. He's given me some steroid creams to use and it should be gone inside 2 weeks.

 

Scully

x

Edited 23 Jan 2012, 12:21 pm by Scully

[Babs 9292]

Hi Scully I would be really interested to find out how you get on with your g.p re "Fampyra" as you prob know I have Secondary Progressive MS and on LDN at the Moment but I am stuggling so much with my walking and spasticity in my legs. I am finding it difficult to bend my legs to get up a step or stairs and in and out of the car I am not sure whether to go on Baclofen as I did try it some years ago and found it made me very sleepy all the time so I came off it. Do you find this happens to you whilst taking it? or do the benefits out way the side effects?

Sorry to hear about your eczema especially if you have always had good skin.....Something else to deal with but hopefully it will clear up with the steroid cream quite quickly.

 

Babsx

[Hezza]

Hi Scully,

It sounds like you had a productive appointment. Keep us informed on what your GP has to say about Fampyra.

 

I've had a long history with Eczema. In my teens I developed it severely on my face. It was around my lips and eyes. At one point it was so severe that my Dad took one look at me one morning and rushed me to A&E. At that point my GP ran out of options and ideas and sent me to a dermatologist. The verdict was that it had started as an allergic reaction to washing powder or some cosmetics but that once it had taken hold stress exacerbated it. The dermatologist prescribed some special recipe for a potion and that knocked it on the head with only occasional flare ups.

 

It has flared up again, on my hands this time, and I've had it for a couple of months now. I'm pretty sure that vanish stain remover used in the washing machine was the trigger. My GP prescribed steroid ointment and Dermol Lotion which does help but I can't shift it completely and it gets pretty painful. I'll be making an appointment to discuss "what next?" with my doctor. I do suspect that stress may be playing a part in this too, it clears up to a point but then flares again

 

I hope yours isn't as stubborn as mine and clears up ok with the steroid ointment. Fingers crossed x

Edited 23 Jan 2012, 1:35 pm by Hezza
Typos

[Scully]

Thank you.

 

Babs. I am Primary Progressive. Re the Baclofen. It does make you sleepy or sleep-ier at first. As is usual with most of these meds. I started on a low dose and gradually built it up. The sleepiness wears off after a few weeks. It does help with the spasms and I'm not quite so spastic taking it. Like you, my leg muscles get so tight it's difficult to bend ankles and knees at times. I think without the Baclofen it would be much worse.

 

Hezza. Sorry to hear about your eczema too. I've never had skin problems at all, but there may be an element of stress involved. Also I've found that since the cold weather and I've been wearing tights it seems to aggravate it. Think I'll have to go back to trouser wearing!

 

Will let you all know how things progress getting hold of the Fampyra.

 

Scully

x

[PaulX]

Hi Scully,

I will be interested to see how you get on as I suspect that I am heading down that route, though I am hoping for glacial progress.

Paul

[Scully]

Hello All,

 

Just an update on the request for Fampyra after seeing my GP some weeks ago.

 

Unfortunatey, my PCT have refused funding for this. Apparently it is mega expensive, possibly because it's the new kid on the block.

 

We cannot fund the drug privately ourselves, it looks to be in many thousands of pounds per year although nobody will give me the exact cost.

 

Apparently Fampyra will deliver results in just a few weeks, if it doesn't then it's unlikely to work at all for some individuals. I asked if I could have it for the initial 2 weeks, just to see if it works, but they are not keen, possibly as if it does work, I will want more!

 

I can only wait it out for a while and try agin next year when the cost may have reduced, or the PCT has a huge injection of cash, which is unlikely, given the current economic and government cut backs.

 

Sorry to deliver the news, it may be different in your area of course, so it's probably worth asking the question.

 

Scully

x

[Christina]

Hi Scully

That's disappointing for you. Humpf!

I think most PCTs will be taking the same line and there will be very few who will get this drug.

 

Chris x

[lisa]

Hi scully

 

I asked my neuro about fampyra on Monday he didn't seem to think it was any good but his hospital (as he travels to the hospital where he sees me) were gona do some trials on it soon if I wanted my name putting forward oh yes please ! ! So I'm hopeing I get lucky an get picked ! ! I have read to if it doesn't work in the first couple of weeks its not likely to be of any help ! ! If I'm lucky enough to get picked will tell you all ! !

 

Lisa x

[PaulX]

Hi Scully,It just seems so unfair that they can put a price on your condition and judge you not to be worth the expense. It is something that makes me really cross.

I hope that it is not too long before it does become available.

Paul