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.
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.Tracker wrote:It is exactly the same as 4-AP, but with a Huge price tag attached.
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.
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.
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:The extreme price tag is because a pharmaceutical company sells it - no other reason other than developing it in tablet form
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.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.
Now, I am not so interested in 4-AP, but in 4-AP-3-MeHO
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.
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.