Keep up the appeals! If you get your insurance through work, sometimes Human Resources can help you appeal. This probably has something to do with the raise in price, but the alternative meds are really pricey! I hope you get what you need soon.
Mary Ann

I have been hesitant to start Plaquinel. Last Monday, my Dr yelled at me for not taking it yet saying it's the only drug known to modify the disease. If this is really the case there should be documentation to help you win an appeal.

Good luck.

Julie

The fact that it helps you should be reason enough for you to take it. There is something called Undifferentiated Connective Tissue Disease (which is my current diagnosis). This is treated with plaquenil. If worse comes to worse, states often have health insurance boards that you can complain to, or even your congress person.

Grr, this makes Catalyzt so mad! There's not a lot of good research on this particular point, but it sure seems like Plaquenil is not a drug to discontinue and reinstate if you don't have a really good reason. There are many reports of significant rebound, and even some reports that it's not as effective when reinstated... though I can't find the link to that article.

As far as I knew, the protocol is to make the decision to start Plaquenil very carefully, and once it is made, stick with it as long as possible. If there are any retinal side effects, discontinue immediately.

This drug should not be expensive to manufacture. There were shortages last year, however, though the reasons were not clear:

http://www.lupus.org/blog/entry/an-update-on-recent-hydroxychloroquine-shortages

Having said that, Jurgensen, if you have read a lot of these posts, you probably have seen that I have very mixed feelings about plaquenil. First of all, there are many drugs called "DMARD"s (disease modifying antirheumatic drugs) and Plaquenil is just the least toxic and often most effective.

Secondly, DMARD really seems like a marketing slogan. I would really like to see ANY recent peer-reviewed journal article that states that it actually slows disease progression. Per the New York Times as of 2012, it does not, at least for RA.

http://www.nytimes.com/health/guides/disease/rheumatoid-arthritis/medications.html?print=1

It is absolutely a great drug for a lot of people and has helped a lot of people here. There are plenty of good reasons for stopping it after a few years-- but insurance coverage is not one of them.

Sorry I can't find anything on the risks of discontinuing, but that might be a good line of inquiry. And reinstating might work just fine for you, I've only heard some reports that it doesn't for some people.

--Cat

Cat,

Your posts are why I hunted for the latest research on Plaquinel before deciding not to take it. Ironically, Dr Marmor, a co-author of the most recent studies, is an ophthalmologist in our area.

At my 3 month check up after dx I told Rheumy I wasn't taking it because of the newer research I'd found. He yelled saying that the prednisone I was on would cause more damage, that I have a better chance of dying in a car accident, and that it's the only disease modifying medicine they have for us. If I had been prepared I would have had the research in my hands contradicting the safety, the reversibility, etc.. that he was touting.

When Dr left the room, my husband said, "Wow. You really upset him, didn't you."

As we drove home and discussed what he said, my husband eventually sided with my Dr. saying that we pay a fortune to see the best and we should trust his judgment. (I have been filling the Rx, so that I'll have it in case there's another shortage when/if I change my mind).

this is what you are supposed to ask when denied
1.Call the insurance company and ask to speak to the HIPAA COMPLIANCE/PRIVACY OFFICER (by federal law they have to have one
2. Ask the names and credentials of every person accessing your record to make that decision of denial. By law you have a right to that information.
3. They will almost always reverse the decision very shortly rather than admit that the committee is comprised of low paid high school graduates looking for "criteria" words making the medical decision to deny your care. Even in the rare case the decision is made by medical personnel, it is unlikely that it is made by a board certified doctor in that specialty, and THEY DO NOT WANT YOU TO KNOW THAT!
4. Any refusal should be reported to the US office of Civil Rights (OCR.gov) as a HIPAA violation.

This was given to me on another site to help with denials