1. Community
  2. Heart Health
  3. Autoimmune Disorders

Lambert-Eaton Myasthenic Syndrome

Posted , 6 users are following.

Guest
Guest

I am really pleased to hear you are in remission and wish you all the best. I have been using 3,4DAP for about 5 years now and I find it really helps. I was taking 10mg every 4 hours for the first 2 years but now I take 10mg every 2hours. I think this is alot and I sometimes feel like if you shook me I'd rattle but without it I'm totally bedridden and cannot even talk. I have had no side effects and I find it the easiest method as I have a 2 year old and if we are going to the park or shopping I just need to take another tablet and it helps me get moving, I also find it takes effect quickly and thats handy too. I cannot give advice on other medications as this is the only form I've tried so far because I find it controls my lems at the moment, but the bad days are getting more frequent so I am hoping to try other treatments in the near future. (Sorry email address has been removed)

[i:dfd9bf4c23]This message was automatically imported from the original Patient Experience[/i:dfd9bf4c23]

0 likes, 13 replies

13 Replies

  • Guest
    Guest

    Posted

    Thanks for your reply. Do you use the 3,4-DAP from Jacobus or from another compounding pharmacy. My nureo can write the perscription but can not get the Dap from Jacobus. Are the pills in tablets or capsules? If you use a Pharmacy could you give me there name as the 3,4-Dap sure seems to work for you. Thanks

    Eldon

    [i:bd1ce68133]This message was automatically imported from the original Patient Experience[/i:bd1ce68133]

  • Guest
    Guest

    Posted

    Hi, How are you? I get my 3,4 DAP direct from Oxford Radcliffe Infirmary. I give them a call when i am running low and the send me usually 3 months supply by recorded delivery. I tried ordering my prescription through my local Pharmacy but there was a bit of a hold up and now i find getting them direct from oxford alot easier. Also my DAP comes in tablet form.

    Leazanne

    [i:32fcc325c6]This message was automatically imported from the original Patient Experience[/i:32fcc325c6]

    • bailie
      bailie Guest

      Posted

      Hi Leazanne,

      I'm working on a story in Cornwall about a patient who is having trouble getting 3, 4DAP. Would you be willing to chat to me? 01872475263

      Thanks, Martin

    • sai89758
      sai89758 bailie

      Posted

      Hi Bailie,

      My mother is advised to take 3,4 DAP. But I couldn't get it. I would like to know if you have any information regarding the availability of the medicine or any other alternatives which other patients are following. Please help. Thanks in advance.

  • Guest
    Guest

    Posted

    Thanks for your response. How much does LEMS affect you walking and do yoou have any problems with Balance.

    Eldon

    [i:f028043d65]This message was automatically imported from the original Patient Experience[/i:f028043d65]

  • stigsy
    stigsy

    Posted

    I have LEMS and can state that I am on Several different medications..

    The most effetive of which is 3-4 DAP.. I use the following

    Prednisolone (15mg daily)

    Azathioprine (6 tablets daily (cant remember the mg dosage)) hehe

    Pyridostigmine (60mg 4 times daily)

    3-4 DAP (10mg as needed, usually 3 times to 4 times daily)

    I find that since being on the azathioprine I have not needed as much DAP. there is a drawback of Azahioprie and thar is no immune system. or at least very low.

    I am not convinced that this is a method I would prefer to follow. but the azathioprine does seem to be having a good effect on my general state.

    I also take potassium daily and calcium daily.. it gets a bit laborious taking 30 pills in every day hehe.

    having said that I still find it difficult to walk, or generally move and also find it difficult to see or focus whilst the medication takes its time to kick in.

    just wondered if anyone else has found a way of putting this thing to rest... or if anyone else has a better way of ~\"masking\" the symptoms... I am 29 year old male.

    • jasmin_83782
      jasmin_83782 stigsy

      Posted

      Hi there I have also got lems ! I am 25 from Cornwall

      How are u coping with it all

      Would be nice to hear from some one in the same situation many thanks Jasmin

    • stigsy
      stigsy jasmin_83782

      Posted

      Hi jasmine

      If you would like to chat it would be good to get in touch.

      I will happily discuss anything you would like to know as long as I have the experience.

      All the best

      Steve

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • Guest
    Guest

    Posted

    I AM FROM INDIA. MY FRIEND HAS BEEN ADVISED TO TAKE 3 4-DAP, 30mg THRICE A DAY. BUT I AM NOT GETTING THIS MEDICINE IN INDIA. PLEASE PROVIDE ME CONTACT NUMBERS AND ADDRESSES OF THE PHARMA COMPANIES WHERE I WOULD GET THIS MEDICINE.

    THANK YOU.

    • sai89758
      sai89758 Guest

      Posted

      Hi there,

      Were you able to get the medicine. We also need the same medicine. But couldn't get it in India. I would like to know how can we get the medicine

       

  • marikaGR
    marikaGR

    Posted

    Hello,

    My name is Marika and my dad was diagnosed with LEMS.

    I'm trying to find the 3,4 Diaminopyridine - commonly known as 3,4 DAP. I cant seem to find the substance as the new medicine - Firdapse - which has the same substance is now licenced and very expensive. Could you help? Do you know where cna i find in the UK the substance?

    Many Thanks

    Marika

    • sai89758
      sai89758 marikaGR

      Posted

      Hi Marika,

      My mother is advised to take 3,4 DAP. But this medicine is not available here in India. What is the price of this medicine and do we have any alternative for this medicine. I would like to know how you people are managing . Thanks in advance.

  • sai89758
    sai89758 Guest

    Posted

    Please help me to know the process of getting access to the medicine 3,4-DAP. 
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.