# started fampyra **URL:** \ **Category:** Primary progressive MS\ **Created:** [6 July 2014 15:28 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676 "2014-07-06T15:28:41Z")\ **Posts on this page:** 18\ **Page:** 1
**Author:** ![Inactive\_User](https://avatars.discourse-cdn.com/v4/letter/i/3e96dc/32.png) [@Inactive\_User](https://forum.mssociety.org.uk/u/Inactive_User)\ **Post date:** [6 July 2014 15:28 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/1 "2014-07-06T15:28:41Z")
started fampyra friday am, only side effect so far is feeling light headed. no walking improvement yet but husband said hes using a lot less effort to help me up ---
**Author:** ![Snow\_Leopard](https://avatars.discourse-cdn.com/v4/letter/s/e79b87/32.png) [@Snow\_Leopard](https://forum.mssociety.org.uk/u/Snow_Leopard)\ **Post date:** [6 July 2014 16:46 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/2 "2014-07-06T16:46:44Z")
Sounds good Joy!!! Fingers crossed you get some good results with it. Keep us informed. Pat xx ---
**Author:** ![Inactive\_User](https://avatars.discourse-cdn.com/v4/letter/i/3e96dc/32.png) [@Inactive\_User](https://forum.mssociety.org.uk/u/Inactive_User)\ **Post date:** [6 July 2014 16:59 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/3 "2014-07-06T16:59:29Z")
I’ve been taking Fampyra for almost a year. I started to feel walking improvements about day 3, and then steadily for a couple of weeks. I walk with a rollator and I can be quite speedy! Sometimes, I can walk with only my stick. Other ms people have found good benefit, but only after three or four weeks. It helps othe symptoms as well, and I found improved balance, bladder and especially fatigue. Just remember that many ‘responders’ don’t see a benefit until after a few weeks. Johnh ---
**Author:** ![Inactive\_User](https://avatars.discourse-cdn.com/v4/letter/i/3e96dc/32.png) [@Inactive\_User](https://forum.mssociety.org.uk/u/Inactive_User)\ **Post date:** [6 July 2014 17:12 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/4 "2014-07-06T17:12:03Z")
thank you johnh i shall remain optomistic. joy ---
**Author:** ![Inactive\_User](https://avatars.discourse-cdn.com/v4/letter/i/3e96dc/32.png) [@Inactive\_User](https://forum.mssociety.org.uk/u/Inactive_User)\ **Post date:** [11 July 2014 09:47 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/5 "2014-07-11T09:47:01Z")
1 week now, legs are stronger can lift arms much better but im not walking any better yet, my legs are burning, anyone else had that ---
**Author:** ![Ninagrace7](https://avatars.discourse-cdn.com/v4/letter/n/779978/32.png) [@Ninagrace7](https://forum.mssociety.org.uk/u/Ninagrace7)\ **Post date:** [11 July 2014 10:31 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/6 "2014-07-11T10:31:31Z")
Hi Joy, When I tried framyra my walking improved slowly over the course of about ten days. By the end of the trial my walking was amazing. I had hoped it would help with fatigue but in fact, due to the side effects I had with it, my fatigue levels actually became worse. Everyone seems to react so differently, its worth hanging on until the end of the trial. Good luck! Nina x ---
**Author:** ![Inactive\_User](https://avatars.discourse-cdn.com/v4/letter/i/3e96dc/32.png) [@Inactive\_User](https://forum.mssociety.org.uk/u/Inactive_User)\ **Post date:** [11 July 2014 10:49 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/7 "2014-07-11T10:49:25Z")
thank you nina, ive 2nd timed walk 21st july ---
**Author:** ![Inactive\_User](https://avatars.discourse-cdn.com/v4/letter/i/3e96dc/32.png) [@Inactive\_User](https://forum.mssociety.org.uk/u/Inactive_User)\ **Post date:** [17 July 2014 10:22 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/8 "2014-07-17T10:22:21Z")
yesterday day 14, bad spasms in back couldnt move, doc gave me diazepam took 2mg helped greatly… found i had a water infection `so antibiotics as well. didnt take last nights fampyra could see difference in leg stength couldnt stand back on fampyra today leg strength much better. waiting for call back off ms nurse!!! weathers no help soooo muggy ---
**Author:** ![Ninagrace7](https://avatars.discourse-cdn.com/v4/letter/n/779978/32.png) [@Ninagrace7](https://forum.mssociety.org.uk/u/Ninagrace7)\ **Post date:** [17 July 2014 11:28 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/9 "2014-07-17T11:28:23Z")
So sorry Joy, nothing is ever straight forward is it. Hope the infection soon clears. Have you noticed any side effects from the fampyra? I take diazepam for back spasms too, initially they worked on their own but now I find I need to take two strong painkillers at the same time. However bad my spasms are I never take them too often, in the hope of not becoming addicted to them! Hope you will soon be feeling much better, Nina x ---
**Author:** ![Inactive\_User](https://avatars.discourse-cdn.com/v4/letter/i/3e96dc/32.png) [@Inactive\_User](https://forum.mssociety.org.uk/u/Inactive_User)\ **Post date:** [17 July 2014 13:56 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/10 "2014-07-17T13:56:50Z")
hi, only side effect was lightheaded for 2 days and water infection, hopefully that will clear soon ---
**Author:** ![Ninagrace7](https://avatars.discourse-cdn.com/v4/letter/n/779978/32.png) [@Ninagrace7](https://forum.mssociety.org.uk/u/Ninagrace7)\ **Post date:** [17 July 2014 16:01 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/11 "2014-07-17T16:01:48Z")
That is great…well, not the UTI of course! I had several side effects…felt very depressed, which was horrible, especially as it was over Christmas! The worst thing for me though was that I was so exhausted and for some reason they stopped me sleeping. They were amazing for my walking though…my second timed walk was about five times faster than my first one. After a lot of consideration I decided not to continue with them but I am so pleaded they are not giving you those problems. Good luck for the rest of your trial Joy. Nina x ---
**Author:** ![skippysprite](https://dub1.discourse-cdn.com/mssociety/user_avatar/forum.mssociety.org.uk/skippysprite/32/912_2.png) [@skippysprite](https://forum.mssociety.org.uk/u/skippysprite)\ **Post date:** [17 July 2014 16:53 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/12 "2014-07-17T16:53:49Z")
Hi Joy Sorry about the water infection, but Famprya does appear to be helping, well done. Mind you I don’t think this weather is helping us, completely wipes me out. Pam x ---
**Author:** ![Inactive\_User](https://avatars.discourse-cdn.com/v4/letter/i/3e96dc/32.png) [@Inactive\_User](https://forum.mssociety.org.uk/u/Inactive_User)\ **Post date:** [21 July 2014 09:55 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/13 "2014-07-21T09:55:39Z")
have had to cancel second walk due to heat. said to rearrange november if its cool. i want to do it but heats to much and it might be here til sept ---
**Author:** ![Snow\_Leopard](https://avatars.discourse-cdn.com/v4/letter/s/e79b87/32.png) [@Snow\_Leopard](https://forum.mssociety.org.uk/u/Snow_Leopard)\ **Post date:** [21 July 2014 10:06 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/14 "2014-07-21T10:06:54Z")
Don’t despair Joy. A lot of us struggle in this heat. It makes doing anything very hard. One thing you can rely on in the UK… it won’t last! Take care and hope the water infection has cleared up. Pat xx ---
**Author:** ![Inactive\_User](https://avatars.discourse-cdn.com/v4/letter/i/3e96dc/32.png) [@Inactive\_User](https://forum.mssociety.org.uk/u/Inactive_User)\ **Post date:** [21 July 2014 10:33 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/15 "2014-07-21T10:33:27Z")
water infection gone, mentally i feel great thanks x ---
**Author:** ![Snow\_Leopard](https://avatars.discourse-cdn.com/v4/letter/s/e79b87/32.png) [@Snow\_Leopard](https://forum.mssociety.org.uk/u/Snow_Leopard)\ **Post date:** [21 July 2014 10:41 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/16 "2014-07-21T10:41:10Z")
Glad to hear it! Pat xx ---
**Author:** ![Inactive\_User](https://avatars.discourse-cdn.com/v4/letter/i/3e96dc/32.png) [@Inactive\_User](https://forum.mssociety.org.uk/u/Inactive_User)\ **Post date:** [22 July 2014 11:31 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/17 "2014-07-22T11:31:24Z")
day 18 yesterday was out in full sun 1 1/2 hours got home and got off scooter with husbands help first time, thats definately not normal. every day little things. glad im able to try it ---
**Author:** ![Inactive\_User](https://avatars.discourse-cdn.com/v4/letter/i/3e96dc/32.png) [@Inactive\_User](https://forum.mssociety.org.uk/u/Inactive_User)\ **Post date:** [22 July 2014 17:41 UTC](https://forum.mssociety.org.uk/t/started-fampyra/30676/18 "2014-07-22T17:41:02Z")
sorry anon was me dont know what i did. also im peeing more and not as often