4-AP and MS

[debmoran]

Hello, all.

I am looking for help in finding out all that I can about 4-AP and any physicians in the Greater Pittsburgh area that will prescribe 4-AP. My husband has had MS for 26 years and has begun, over the last two or three years, to have much more difficulty in walking and with muscle strength. This is very hard for him as he has always tried to be as active as possible and he's having a very tough time.

We just returned from the Cleveland Clinic Mellen Center and his MS Specialist recommended that he find a local neuro who will prescribe for him. If not, he will do the research and prescribe, but he really preferred to have someone local who could monitor his progress. His local neuro stated, the last time I asked, 4-AP causes seizures. He has yet to return my call on the recommendation from the specialist.

If anyone can be of any help, I would be most appreciative!

Thank you!

Debbie

[lynnifer]

http://www.collegepharmacy.com/specializations/ms.asp

I believe if you contact the above, they will provide you a list of doctors in your area that will prescribe 4-ap.

Also see here:

http://sci.rutgers.edu/forum/showthread.php?t=67011

Good luck!

[davesgirl aka anty]

Hi deb I live in P.A. I get my 4-AP from a compound pharmcy in allentown they will mail you the pills. All you need to do is fax them a script. the pharmacy name is DORNEYVILLE PHONE #610-437-4600. Any questions just ask :) anty

[debmoran]

Thank you both for your posts. I'm going to look at that web site and see who I can find. I'll also keep that pharmacy in mind, as well. I just have to find a dr who will prescribe and who understands the drug. We are so desparate to find someone quickly as he is really feeling pretty bad and we're hoping that this will provide some positive effects!

Thanks again!

Debbie

[mr_coffee]

I also use the pharm tht Anty gave me awhile ago! they are great!

[debmoran]

Well, I'm still trying to find a local Doc. I have a couple of names that I can call and I've emailed the places that you folks have supplied and I'm waiting for replies. I hope to hear something next week!

Wish us luck!

Debbie

[davesgirl aka anty]

Best of luck to you and your husband debbie let us know how he does on it :) anty

[Sue Pendleton]

Hello, all.

I am looking for help in finding out all that I can about 4-AP and any physicians in the Greater Pittsburgh area that will prescribe 4-AP. My husband has had MS for 26 years and has begun, over the last two or three years, to have much more difficulty in walking and with muscle strength. This is very hard for him as he has always tried to be as active as possible and he's having a very tough time.

We just returned from the Cleveland Clinic Mellen Center and his MS Specialist recommended that he find a local neuro who will prescribe for him. If not, he will do the research and prescribe, but he really preferred to have someone local who could monitor his progress. His local neuro stated, the last time I asked, 4-AP causes seizures. He has yet to return my call on the recommendation from the specialist.

If anyone can be of any help, I would be most appreciative!

Thank you!

Debbie

Deb,

Hi, I was in Acorda's phase 2A trial and it did wonders for me. So much so that my physiatrist at Walter Reed kept my script going for the next 4 years for compounded 4-AP. I quit due to symptoms not associated with 4-AP and spinal infracts or SCI. Now that I'm clear on what was causing my problems when I see my neuro in September I plan on going back on it.

Important differences between MS and SCI with 4-AP: MS sufferers tend to have seizures at lower doses and more often. I would get your husband's neuro or physiatrist to do some background work through the medical literature. I remember seeing one paper that tied an increase in seizure activity to where the majority of the damage is in the brain.

Do remember to ramp up the dose slowly and if side effects show up see a doctor and if nothing seems to be helped ramp bck down slowly. By increasing and decreasing the dosage slowly a good deal of the "normal" side effects can be avoided or lessened. Most are tingling near lips, insomnia, heart burn (I had to take my compounded version with food) and feeling more energenic in some. Sometimes, my theory here, spasms or tone increase at first because the body isn't use to messages getting to the muscles. Once this passes, a few weeks in what I have heard and experienced with the compounded formula, strength and stability and fewer spasms is more the norm. This does not apply to complete SCIs.

Again, I would warn to have a neurologist or physiatrist follow your husband on 4-AP due to an increased chance of seizures in MS patients. Maybe his neuro can work with a local primay care doc on what to watch for and any tests to do on a regular basis. Oh, and 4-AP will probably NOT decrease anyone's chances of getting into a non 4-AP trial later. It is non-invasive and clears the system fairly quickly. Of course w all know that there are no definites when it comes to trials.

Best of luck!