[Annie59]

Has anyone had a doc that would do prostigmine injections for treatment not just testing? I ran across one person a while back that said they had it onhand for bad breathing attacks. I would be so so so grateful at this point if I could just get it once a week. To have one really good day.....maybe this sounds odd but to me it doesnt.

The next morning after the injection I had in the hospital while I wasnt dancing around the room at least I could see near normal and I woke with an ease of breathing I sure normally dont. Now I just had my second conversation with my current neuro about this cause I had to stop the prostigmine pills cause my body couldnt handle them. Some pills my body struggles with. I acutally got dryer on the prostigmine which is opposite of the norm for this drug. About 5 days in I felt like I was hung over and wasnt drinking enough water tho I drink a lot intentionally by internists orders.

Annie59

[alice md]

Originally Posted by Annie59

Has anyone had a doc that would do prostigmine injections for treatment not just testing? I ran across one person a while back that said they had it onhand for bad breathing attacks. I would be so so so grateful at this point if I could just get it once a week. To have one really good day.....maybe this sounds odd but to me it doesnt.

The next morning after the injection I had in the hospital while I wasnt dancing around the room at least I could see near normal and I woke with an ease of breathing I sure normally dont. Now I just had my second conversation with my current neuro about this cause I had to stop the prostigmine pills cause my body couldnt handle them. Some pills my body struggles with. I acutally got dryer on the prostigmine which is opposite of the norm for this drug. About 5 days in I felt like I was hung over and wasnt drinking enough water tho I drink a lot intentionally by internists orders.

Annie59

The answer is yes, I have used them for more then a year on a pretty regular basis. But, it is possible that you will have the same side effects that you did with the oral form, although, sometimes the adverse reaction is not to the active ingredient but to other elements that are added to make it an oral agent and then an injection would not cause the same problems. I injected them sub-cutaneously or IM whenever I had more severe symtpoms which could not be controlled with mestinon alone.

[Annie59]

Alice md, are you treated at a university hospital? I guess my point is is this a rare doc you found in his own practice? Is your breathing the concern or all body weakness? I am assuming that you just do the one shot that the safety shot that is given before in hospitals for test purposes is not given.

I just called the Valeant Company to see if they would discuss the differences. Boy it is hard as you have to realize they arent gonna say "oh yes your kidneys are gonna have a hard time processing it." She started talking about needing clinical trials and I knew I had lost her. So I back tracked and said changed my wording. I did tell her that the prostigmine doesnt cause the severe cramping and explosive diareah while having a stronger affect on my symptoms.

I am glad for your story as this gives me some info to share with the new neuro I am seeing November 2nd. My current neuro will do no more to treat me. She'll call and listen as my other docs see when she doesnt but treating me with something more it is gonna take a different doc.

Annie59

Originally Posted by alice md

The answer is yes, I have used them for more then a year on a pretty regular basis. But, it is possible that you will have the same side effects that you did with the oral form, although, sometimes the adverse reaction is not to the active ingredient but to other elements that are added to make it an oral agent and then an injection would not cause the same problems. I injected them sub-cutaneously or IM whenever I had more severe symtpoms which could not be controlled with mestinon alone.

[alice md]

Originally Posted by Annie59

Alice md, are you treated at a university hospital? I guess my point is is this a rare doc you found in his own practice? Is your breathing the concern or all body weakness? I am assuming that you just do the one shot that the safety shot that is given before in hospitals for test purposes is not given.

I just called the Valeant Company to see if they would discuss the differences. Boy it is hard as you have to realize they arent gonna say "oh yes your kidneys are gonna have a hard time processing it." She started talking about needing clinical trials and I knew I had lost her. So I back tracked and said changed my wording. I did tell her that the prostigmine doesnt cause the severe cramping and explosive diareah while having a stronger affect on my symptoms.

I am glad for your story as this gives me some info to share with the new neuro I am seeing November 2nd. My current neuro will do no more to treat me. She'll call and listen as my other docs see when she doesnt but treating me with something more it is gonna take a different doc.

Annie59

No, I am treated by a hematologist who has gradually learned how to manage this illness by reading the medical literature on her own, and happens to be me.

prostigmine was the initial AchE inhibitor uesd in myasthenia. mestinon came later. It was used by Osserman before the era of immunomodulatory treatment in patients with unstable disease. and in many it prevented them from going into full blown crisis.

Nowdays it is mostly being used in the operating room, to reverse the muscle relaxants, being used in surgery.

I received it for the first time in the ICU when I was in crisis, and my excellent response to it saved me from being intubated, according to the head of the ICU.

I don't generally recomend the way my illness is managed, and it is much better if you have a proper neurologist that you can trust, and not less importantly trusts you.

[mrsD]

I am finding Prostigmine not marketed in US. It does not appear on the FDA website either.

This link gives countries where it is available:
http://www.drugs.com/international/prostigmine.html

[AnnieB3]

Mrs. D., Is this another one of those "sound alike" drug things?

Neostigmine Bromide is Prostigmin. Is that what you guys are referring to?

[Annie59]

MrsD, I was prescibed prostigmin here in Iowa on August 2 of this year. Now as it is not used as commonly it is not as easy to find info on and spelling it correctly was part of my struggle. It took quite a time to dig up info on it. I keep putting an 'e' at the end. Valeant makes it and I just talked to them this week on their customer service line about my problems with both mestinon and prostigmin which they both make.

Annie59

Originally Posted by mrsD

I am finding Prostigmine not marketed in US. It does not appear on the FDA website either.

This link gives countries where it is available:
http://www.drugs.com/international/prostigmine.html

[scrubbs]

Annie59 was prescibed prostigmin here in Iowa on August 2 of this year.

AnnieB3 says Neostigmine Bromide is Prostigmin. And is this what you guys are referring to and Is this another one of those "sound alike" drug things?
Prostigmin -Prostigmine

mrsD says that Neostigmine or Prostigmin is no longer marketed in the United States like it is 2 different drugs.

I am still confused and wondering why this thread seems to have died.

Maybe alice md could jump in back in again.

Tony

[mrsD]

The issue remains unresolved as far as I can tell.

According to the FDA website data, this drug is not listed anywhere there. Some websites say it is not available in US, etc.

So its status is unclear. However, obtaining the injection, even if it is now available, say a new development, may be difficult because this drug is very dangerous when injected. The doctor would have to instruct the patient how to do it safely. Not all patients are trustworthy or experienced enough to handle it IMO.

Some drugs are not available thru normal wholesalers, mostly because they are not requested often enough to keep fresh on the shelves. May go out of date before requested. Also it may come in units of 25, like sold to hospitals etc. Hospitals obtain most of their medications directly from manufacturers, because they use odd or rare things, and also to save money.

We'll have to wait for Annie59 and see if she finally obtains it.
Basically it is just not a common drug and has a history of being unavailable in US.

[scrubbs]

http://www.valeant.com/products/index.jsp shows Prostigminor sale in USA,
Mexico, Canada and Brazil.

Tony