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Heathen #120558 12/01/03 02:49 PM
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Hi all. I am happy to have found this website. Nice to chat with others that have similar problems and understand what I'm going through right now.

I have used Bextra for the last 6 months or so, having run the gamut of NSAID's until now, with limited success (Indocid, Vioxx, Naprocen, etc...). The Bextra helps minimally...but doesnt really do much. I asked my rheumy about Mtx and other DMARDS but she doesnt think they do much good for people with AS/PA

I also take Tylenol Arth for pain, but have refused the offers of narcotics from my rheumy, as I fear opiates and other heavy drugs. In my line of work, I need my brain to work properly, and not be so clouded up, which is what opiates do to me.

I noticed a poster mentioned the use of Medical MJ to help treat the pain...I know this is a controversial issue, but I have done a lot of research into it, and have found that the oral ingestion of MJ in controlled dosages really helps me with the pain, and gives temporary relief of my symptoms without fogging up my brain like "legally prescribed" narcotics do. I am thinking of approaching my rheumy to see about applying for a Medical Marijuana access card from Health Canada so that I can legally use MJ as part of my pain management program. Now...I dont condone the reckless consumption of the drug, but I definitely find it helps out when used in a controlled environment, and treated like you would any other "prescribed" drug. My biggest beef with the usage of MJ, is the fact that you have to deal with the "black market" in order to obtain it (for the most part), and I DO NOT like to deal with nefarious characters...would prefer to simply take care of growing my own medication in the safety of my own home. (Cant even stomach the thought of trying to obtain the gov't stash....I hear they grew that schwag in an abandonned mine, and that the gov't MJ is full of heavy metals and other toxins.....nice!!! thx Health Can) :(

I am waiting to find out whether I am on a clinical trial for Humira, which is a new TNF-a drug (like Enbrel, Remicade). If so, I'll be starting that in January, and will post my results to you here. From what I've heard from others, TNF-a drugs are the way to go, and have given many AS/PA pts a lot of relief from the pain and suffering. For me, trying to get on a trial is the only way I can afford to try Biologics.

Here in Canada, Enbrel is used, however it is ghastly expensive, and if you dont have a medical plan that covers Enbrel (In my province, Blue Cross doesnt cover Enbrel unless you have RA)---prepare to spend upwards of $25k a year to go on Enbrel!!! I guess its an option if you are rich, but for us plebs, it is out of the question.


grooveh #120559 12/01/03 03:25 PM
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I am covered by Blue Cross and I have phoned them and asked them specifically if I have AS will they cover Enbrel. The answer was as long as it is a legally prescribed drug from a licensed dr. for a valid reason it will be covered. I have tried NSAID's, Sulfasalazine, and MTX with little success. Tomorrow I have a rhuemy appt and am going to ask for Enbel so I thought I would check before I ask for it to be sure it was covered. So I will find out tomorrow. So maybe it depends who your employer is and what plan you are on if Blue Cross covers Enbrel. I believe there may be different plans A, B and C. A covers it and B & C do not?

There is no drug stronger than a good attitude.


We cannot direct the winds, but we can adjust our sails!
Deborah #120560 12/01/03 03:58 PM
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I'm on Blue Cross here in Alberta. My rheumy informed me that they do not cover Enbrel here for PA/AS. Now, she did say that if I got some peripheral arthritis (ie: joints of fingers)--she could claim that I have Rheum Arth, and could get me on Enbrel--otherwise, no dice.


grooveh #120561 12/01/03 04:44 PM
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When I get my prescription filled I will let you know if they do cover it though as I say I have phoned them and they said it will be covered. Are you taking your rhuemy's word on it or are you getting your information from Blue Cross? My rhuemy didn't think it would be covered either but when I phoned I was told it would be covered. Personally I would find out myself rather that taking the dr.'s word on it. There is a 1-800 # on your claim form that you can call yourself and get all kinds of information. Check it out and get it from the horse's mouth.

There is no drug stronger than a good attitude.


We cannot direct the winds, but we can adjust our sails!
Deborah #120562 12/01/03 06:11 PM
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Uggg....just got off phone with Blue Cross. It seems my rheumy was correct with what she said. They basically confirmed it. Oh well....thats what i get for living in alberta! :(


grooveh #120563 12/01/03 07:30 PM
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Sorry!

There is no drug stronger than a good attitude.


We cannot direct the winds, but we can adjust our sails!
Deborah #120564 12/01/03 08:10 PM
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Oh, thats ok Deborah. Its nothing to do with you. I've been in a little bit of a funk this last little bit, as this year has been the worse year for my AS yet. I'm sure there are many on these boards who know of the pain and depression that can set in when you have a particularly bad time with your condition....so I wont go on more about that ;)

I'm just trying to find any options that will give me a bit of relief. I'm still pretty young, and am usually a very active person. This fall, I had to quit competitive sport due to my condition, and have had to take time off working too! I guess I've never really experienced my AS as much as this year...so its been tough.

This site has been helpful though...helps the spirits to have compassionate people who know "what you're going through".

I'm keeping my head up as best as I can :)


grooveh #120565 12/01/03 08:31 PM
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It just seems a shame when there is something out there that may help you that you are not able to access it. For that I am sorry.

I too was an active person and have had to cut back on many activities due to AS. I was off work for 11 months and have just started back part-time and am very happy to be back.

I hope you find some relief and glad you are keeping your spirits up as much as you can under these conditions. Good luck!

There is no drug stronger than a good attitude.


We cannot direct the winds, but we can adjust our sails!
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