Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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Lauren2 04/30/2015

So today I went to pick up my monthly supply of diamox (2000mg/day) from the pharmacy and was told they were out and no one has any because there is a shortage of diamox from the manufactures until JULY! My pills run out tomorrow so I am freaking out because I have been on 2000mg for 2 years so not only will my pressure probably go wonky from going cold turkey, but I am thinking more about the fact that I am going to retain SOOOOO much water all of a sudden lol.

I have lost 110 pounds since my diagnoses in 2013 and my paps are all but gone so there has been talk about weaning me off of the diamox, but certainly not so suddenly. I am still on topamax and I am going to go to a pharmacy that compounds prescriptions in the morning and see if they can "make" diamox but I thought I would give other Canadians a heads up, go top up your prescriptions now if you still can.

Lauren2 04/30/2015

Well just my luck, apparently the issue is with health Canada, so the powder the pharmacy would use to compound the tablets with is also unavailable, so it looks like after today I am going off diamox cold turkey!! So nerve wracking, I'm really looking forward to my headache getting even worse and the excessive bloating......

I left a message with my neuro but who knows when I will hear back from them, and I'm thinking the only alternative at this point would be to go on lasix which I hate.

Taleema 04/30/2015

Where in Canada, are you?! I have a refill or two on my diamox. Perhaps your neuro or GP can put you on lasix or methozolomide?

Taleema 05/15/2015

Geee Lauren... just went to refill mine, pharmacy won't refill it because of the nation-wide back order (how does that even happen?!?!) and my neuro is saying there is no alternative to diamox... what do I do? I have some tabs left...do I wean myself down a little...

Lauren2 05/15/2015

I have no idea how something like this happens, I mean it can literally be the difference between some people losing their vision or not! I called dozens of pharmacies in my city and was able to find one to fill one more month of my prescription so I did not end up going cold turkey yet, but at the end of May I will be screwed. I called my neuro's office and talked to the nurse to ask if I should start weaning down and she was very useless as usual and didn't seem to understand what a drug shortage was so now I have an appointment next week with my neuro but I think our only option will be to stop diamox rather abruptly and start lasix until diamox comes back.

aimhigh4once 05/15/2015

It sounds like the drug companies are trying to go to injections instead of the oral route.....have you thought about trying a pharmacy in the US? all you need is a script I believe but it will cost more. https://rxmail.aptea.com/home_sw.aspx and the info for the changes
http://www.ashp.org/menu/DrugShortages/CurrentShortages/Bulletin.aspx?id=463

aimhigh4once 05/15/2015

PS CanadaPharmacy.com has them in stock for $141 per month.....
https://canadapharmacy.com/index.cfm/fuseaction/cart.fullcart

RN4408 05/17/2015

That's awful! So sorry that both of you have to deal with that! It's unreal when there are medication shortages. Ugh.

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