Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Woot! I think I finally got the right dx!

So, I started the Plaquinel Wednesday evening. I also started a sinus infection. The two of those together made me so tired I could not function at all. Apparently, the extreme exhaustion is a known side effect while the body adjusts to the Plaquinel. It wore off today.

Despite having lain around since going to bed Wednesday night and not being able to exercise, I do NOT hurt! I can move. My hands and feet actually have proper circulation and despite the severe thunderstorms due to arrive within the hour, I am not a ball of achiness and prayers for death.

Since Plaquinel has been shown to have absolutely no effect on AS, this confirms my new doctor's suspicion that I was misdiagnosed. MCTD it is and I'm rapidly getting much better. My butt didn't even cramp up while I was hoovering.

Well..I am glad if the med helped you and you think you now know what it is.

I also know that Plaquenil IS prescribed for RA, AS and other Immune Disorders because I was on it for about a year several years ago.

I looked up on about.com under Rheumatoid Arthritis and it specifically says it is prescribed for Maleria, Lupus, RA and OTHER Immune Diorders that have not worked with other medicines.

So while it may not have worked for you, please to not mislead people by making such a broad statement as Plaquenil has been shown to have absolutely no affect on AS..I would beg to differ having been on it myself as well as many others here.

Very glad to hear that you've found a drug that works for you and that you seem to have a proper diagnosis. Not having a correct diagnosis can be very frustrating.

I have not heard that plaquenil is now considered to be non-effective in treating AS. Do you happen to have links to any online articles that discuss the drug's status? Would be very curious to read any if you do have them; it definitely did not seem to provide any relief when I took it in the years before I started anti-TNF drugs.

Again, glad you're feeling better.

Brad

The information I got comes from...oh wait, not allowed to post specific names of specific docs.

Angelmom, Plaquinel, per my searches and per my rheumatologist is not considered effective for the treatment of AS. This may be new findings, but it is not "misleading." Anyone who comes to a discussion board and immediately assumes these answers are always right anyway is an idiot.

Magpie, please lose the attitude immediately. If you'd like to be a member of the KA community even though you've told us your diagnosis has changed and is no longer AS, then that's cool; as we've said before, KA actually covers a pretty broad spectrum of autoimmune diseases. But if you persist in being impolite in every thread you start, then I think you need to ask yourself why you ARE still posting here. If it's simply to be a thorn in the side of other KA members, well, that won't last very long. If it's because you do want to be part of the community because you feel there are things you can learn here and information you can offer to others, then it's time to realize that neither of those activities will be allowed to continue if you decide to keep calling other members "idiots" and intentionally misstating guidelines that were put in place in another post. (Which refers, of course, to the snarky comment at the start of your reply in which you say we aren't allowed to mention the names of any doctors. You know full well that is NOT what you were told in the other thread. No, what you were told there was that, due to very real concerns over lawsuits, anything resembling slanderous comments toward doctors or other medical professionals will NOT be tolerated. In the future, please do not intentionally misstate guidelines passed on to you by the admins or moderators.)

We add many new members to KA every day, and I think it's safe to say that one of their main areas of interest when they first join in is medications used to treat AS. I asked if you had links to any articles regarding plaquenil being "completely ineffective" in treating AS because if this is the current thinking, then I'd like to make sure we put that information into one of our forums for all to see. If you did not have access to any such links, a simple "Sorry, no, I haven't read any articles on this, I'm just relaying what my current rheumatologist told me," would have sufficed. I will continue to research this on my own so that we can provide current information on plaquenil; my initial Google search did not yield any articles stating that the drug was no longer used to treat AS.

Brad

What is hoovering ,like Frank Zappa's song about appliantology a funny song about Scientology?Kev

Hey Kev, hoovering is vacuuming the rugs with a hoover vaccuum!!

Capn, glad you are feeling better! Cheers!



And......Sheesh is it 4th of July or what?? Fireworks aplenty on KA!!

(Ducking for cover!)

Sleep well my friends,
D-

Hi Brad,
So it is possible to mention a doctor's name here publicly, and not disappoint the Admins? I honestly never knew that. You would think that I would know the rules by now after being here for, umm, 6 years? lol. I guess I only 'assumed' that the mentioning of names was generally frowned upon (as with most sites), for exactly the same reasons you explained, unless the doctor gave consent to mention his or her name beforehand. I said this (in so many words) to Capnmagpie in a PM yesterday, after I read that one post were a private conversation was requested. I apologize to anyone and everyone who I might have mislead. I hope I didn't add to the problems/misunderstandings.

Personally speaking, I wouldn't want to mention any of my doctors names, for my own personal protection, and for the protection of KA... even if wasn't slanderous or misleading. I'm trying to be just as careful with quotes from other sources too, and giving them credit and/or link to the source.

Take care,
James

Hi Capnmagpie,
That's great news and I'm glad to hear it. I bet you're relieved now to have this new doctor, and I would be too after being misdiagnosed. I hope your improvements continue to get better each day.
Take care,
James

Hi James,

I'm sorry that you have been confused about when it is acceptable to mention a doctor's name. Recently we have made several public statements explaining how we could not allow the use of a doctor's names in association with negative comments about that doctor because of the fear that the doctor would bring a lawsuit against KA. However, when a doctor is mentioned in a positive manner (for instance, if you were to write a post about how great your doctor is, or about a very positive experience you just had with a new doctor), there are currently no rules against that, nor can I recall any public statements from the admin team forbidding such instances.

If anyone is concerned about what would be considered positive (or even neutral) vs. negative, then I'd say that you should probably just go ahead and NOT use any names if there is that much uncertainty about how the post would be viewed.

I hope to bring forward additional guidelines on this topic in the near future, so stand by.

Brad