hi need help

Ampyra is a potassium channel blocker that is shown to improve visual function, motor skills and relieve fatigue in MS patients.
Post Reply
User avatar
seeva
Family Elder
Posts: 511
Joined: Sun Jan 20, 2008 3:00 pm
Location: SYDNEY
Contact:

hi need help

Post by seeva »

Hi friends can anyone help me regarding LDN and AMPYRA. i am about to start the new medications compunded AMPYRA from next week.sametime i am taking LDN.. are there any one taking LDN while on the new medication AMPYRA.I would be very grateful any one let me know can i take LDN when i am taking ampyra,
regards
seeva :roll:
User avatar
Algis
Family Elder
Posts: 829
Joined: Sat Nov 21, 2009 3:00 pm
Location: XinYi District, Taipei City, , Taiwan

Re: hi need help

Post by Algis »

4-AP and LDN are compatible. Assuming that Ampyra is just an enhanced version of 4-AP I guess it would be fine. But don't take my word for it... Try?
User avatar
CureOrBust
Family Elder
Posts: 3374
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Re: hi need help

Post by CureOrBust »

If I am not mistaken, seva is taking the compounded 4-AP, not the commercial product AMPYRA. And if I am not mistaken, it from the same pharmacy I had both those compounded from. As far as I know, the two have no incompatibilities, and work on completely different paths.
Tracker
Family Member
Posts: 30
Joined: Sat Oct 08, 2011 2:02 am

Re: hi need help

Post by Tracker »

I have been having 4-AP & LDN compounded for 18months, and would NOT want to be without either of them.

I have the 4-AP made up in 5mg capsules, & take it 4x5 daily, sometimes 5x5. This is because I found a 10mg cap gave me unpleasant side effects, so little & often suits me.
I have heard of MSers feeling unwell on Ampyra, and I wonder if that is because it is 2x10 daily. It is exactly the same as 4-AP, but with a Huge price tag attached.
The LDN I have in 3mg caps, as a larger dose aggravated spasticity. This is a well known fact with people who have spasticity

Both 4-AP & LDN have directly positive effects for me
The only other thing I take is Baclofen.
User avatar
CureOrBust
Family Elder
Posts: 3374
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Re: hi need help

Post by CureOrBust »

Tracker wrote:It is exactly the same as 4-AP, but with a Huge price tag attached.
I used to take compounded 4-AP a few years ago. I found that it slowly reduced in effectiveness, and when I herd there was some chance it may hinder nerve repair, I decided to stop. However, a few months after stopping, I then read somewhere that it had a very short shelf-life, and ever since have wondered if this was the real reason for the reduced effectiveness.

I have not read any mention of this fact (if it is even true?), but I would be very interested in hearing what the manufacturers of Ampyra have to say about it; which may be part of their substantiation of its extreme price tag.
Tracker
Family Member
Posts: 30
Joined: Sat Oct 08, 2011 2:02 am

Re: hi need help

Post by Tracker »

The extreme price tag is because a pharmaceutical company sells it - no other reason other than developing it in tablet form

4-Aminopyridine is very cheap straight from the warehouse, the pharmacist formulates the desired dose with a filler/mixer in the capsule, so it is more personalised for your requirements.
eg. I have my caps made up in 5mg, and take 4x5mg/day, which specifically suits me.

Maybe ask your pharmacist what the shelf life of 4-AP is, and how much he sells. If you access your caps from a pharmacy that has a high turn over of 4-AP, the supply is more likely to have a longer shelf life.
User avatar
CureOrBust
Family Elder
Posts: 3374
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Re: hi need help

Post by CureOrBust »

Tracker wrote:The extreme price tag is because a pharmaceutical company sells it - no other reason other than developing it in tablet form
Not to appear to be taking their side, but they also took it through the trial process. A risk as well as a cost. 4-AP has been available to MS sufferers for a long time, however, its only now that many will learn of its benefits, because of the pharnaceutical's money grabbing....
Tracker wrote:Maybe ask your pharmacist what the shelf life of 4-AP is, and how much he sells. If you access your caps from a pharmacy that has a high turn over of 4-AP, the supply is more likely to have a longer shelf life.
See, the problem here was, at the time, I introduced my pharmacist to this compound. It was on my request that he investigated a source, and purchased and compounded it just for me; ie at the time I was his only consumer. What kind of concerns me a little is that if there is a "shelf life" issue with it, if he was to use any remaining material from back when I ordered it and then stopped, new patients would be buying sub-standard stuff. I do not know if he or is supplier know or even IF there is a shelf life issue. However, it was sooo long ago now, I am sure he would of purchased a new supply.

Now, I am not so interested in 4-AP, but in 4-AP-3-MeHO :)]
Tracker
Family Member
Posts: 30
Joined: Sat Oct 08, 2011 2:02 am

Re: hi need help

Post by Tracker »

I imported 4-AP-3-MeOH and had it formulated into 1mg capsules. I was only allowed to import 1g at a time, and had to work out the doseage myself.
I applied to the Therapeutic Goods Administration of Australia (TGA), with a Special Access Scheme form (SAS) for permission to import a drug not yet approved. The turn-around with the TGA was quick - within the week, & the request was approved.
The reason given on the SAS form was because I was having very unpleasant side effects from taking the normal dose of 4-AP, yet having good results. The 4-AP-3-MeOH was apparently without the side effects, and I found this to be very true. A very pleasant drug to take, as absolutely zero side effects, but with the same benefits as the 4-AP.
I was experimenting with the doseage, but never took enough to risk possible adverse effects. The max I took was 5mg per day, and not a flicker of a problem, BUT, the pharmacist I was having it formulated through was charging A LOT, and this was the reason I never pushed to a higher dose to see if I got even better results.
Due to the cost, I switched back to 4-AP, but took it little & often, to avoid the side effects.
This worked for me, 4 x 5mg/day. I believe Ampyra is 2 x 10mg/day, & I know I wouldn't tolerate the 10mg at a time. However, I do know of people who can take the 10mg with ease. It seems it is a personal thing.
User avatar
CureOrBust
Family Elder
Posts: 3374
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Re: hi need help

Post by CureOrBust »

were you by any chance "Ned" in a previous incarnation? :-??
http://www.thisisms.com/forum/drug-pipe ... 11280.html

I previously had Aimspro imported under the SAS scheme in Australia, I didn't realise that the reasons for importation could be so simple.

Can I ask what your Pharmacist was charging for each? A few years ago, mine charged $65/100 for 4-AP (which is nothing compared to Ampyra), and I think they are only charging slightly more now to seeva (above)

Your description places the effectiveness of the new stuff apparently the same as 4-AP, yet the poster above, seems to favour the 4-AP-3-MeOH. Apart from side effects, would you say that they were about the same in effectiveness for you? I understand that you didn't try to push the dose to see where the max benefits were reached.
Post Reply

Return to “Ampyra (Dalfampridine)”