When I saw my rheumatologist in early May, I expressed some concern that my lupus was in "active disease mode". I wasn't feeling up to snuff, and I noticed the change immediately when it started getting warmer outside.
I've been on Methotrexate for about a year or so, and that seems to be doing a relatively good job of controlling my rheumatoid arthritis (knock on wood so I don't jinx myself). But lupus is another story.
My rheumatologist said that the only medication change he would consider making was taking me off of Plaquenil (Hydroxychloroquine) - and putting me on Quinacrine - which is known to be more effective in treating lupus. While Quinacrine is in the same class of drugs as Plaquenil, it is no longer commercially available in the United States, and has to be made at a compounding pharmacy (Wallace 2000).
There were some issues with my insurance, and how the drug was made at certain pharmacies, so you may have to do some detective work to make sure that your insurance will cover it, if your doctor ever prescribes Quinacrine for you.
Quinacrine was approved in the 1930s as an anti-malarial. Tests of its effectiveness in lupus (and rheumatoid arthritis) began in the United States in the 1950s, and more recently, Quinacrine has been used to treat those with Creutzfeldt-Jakob Disease, the human form of Mad Cow Disease (so you know this is serious stuff).
Quinacrine is also used as method of non-surgical sterilization in many third world countries. I find this to be a bit disturbing, although in this case, the medication is not taken orally, but is inserted into the uterine cavity in special "pellets".
Then again, Methotrexate was used as an abortion drug in the 1960s, and is sometimes used for that purpose off-label today (National Abortion Federation 2005). And despite this, most people with rheumatoid arthritis are put on Methotrexate for at least some portion of their illness career.
Quinacrine is not effective in those with Central Nervous System (CNS) lupus, but has been known to reduce the headache and fatigue that are common to systemic lupus (Wallace 1989). In comparing Quinacrine to Plaquenil, there is no retinal toxicity, which is one of the major side effects of Plaquenil (Wallace 1989). And Quinacrine takes about two to four weeks to begin working, whereas Plaquenil takes about two to four months. One major side effect of Quinacrine, which isn't present with Plaquenil, is bone marrow suppression, along with skin changes and gastrointestinal problems. Quinacrine is also known not to be as effective in treating synovitis (in arthritis) as Plaquenil. Wallace (1989, 2000) and others (Toubi, et al. 2000) have suggested that Quinacrine is most effective when taken concurrently with Plaquenil, although this is mainly considered when Quinacrine isn't effective on its own.
While Quinacrine does cross the placenta, some have suggested that the concurrent use of Quinacrine during pregnancy is allowable (Wallace 1989), although the effects of Quinacrine during pregnancy remain largely unknown (Toubi, et al. 2000).
I guess I have to be realistic. I know that these drugs are creating a firestorm in my body. I know that I will have to be off the meds for awhile before I can get pregnant. And I know that by virtue of taking these drugs, there is a chance that my fertility will be reduced. And that's the price I pay for trying to feel at least partially human. Yes, the other uses and side effects of this drug are scary, to say the least, but feeling better comes with a price.
It seems that very few people have even heard of this medication. But maybe that's because it's rare that people have both lupus and rheumatoid arthritis. One research study suggested that the drug has been "underappreciated" in treating patients with lupus (Toubi, et al. 2000).
I know that people here and on my blog have been interested in hearing more about Quinacrine. I am happy to answer any questions, although I put a lot of work into researching Quinacrine for this piece, so I may not have all the answers.
I will say, however, that I am feeling better these days (again, knock on wood so I don't jinx myself). It's always an adventure starting a new medication, seeing how it will work, anticipating the side effects, etcetera.
My goal has always been to get one step ahead of these diseases, to get control before I start feeling awful. I'm not sure if I will realistically ever get to that point, but you never know when a combination of drugs might be the right one.
Right now, my dating life is dismal, but I find myself courting drugs rather than men. I'm on the prowl, looking for the right ones. And I guess I'll try anything once, in the hope that it might just work. I didn't want to go on Prednisone, and then I really didn't want to go on Methotrexate, but I kept as open a mind as possible. No drug is a cure. And unfortunately, we don't live in a world where lupus and rheumatoid arthritis are well understood, especially when they occur together in the same person. So for the moment, I close my eyes, pop some pills, swallow some water, and hope that the cure... er, treatment... isn't worse than the disease.
National Abortion Federation. 2005. "Protocol Recommendations for Use of Methotrexate and Misoprostol in Early Abortion." <http://www.prochoice.org/pubs_research/publications/downloads/professional_education/medical_abortion/protocol_recs_meth_miso.pdf>
Toubi, E., I. Rosner, M. Rozenbaum, A. Kessel, and T. Golan. 2000. "The Benefit of Combining Hydroxychloroquine with Quinacrine in the Treatment of SLE Patients." Lupus 9: 92-5.
Wallace, D. 1989. "The Use of Quinacrine (Atabrine) in Rheumatic Diseases: A Reexamination." Seminars in Arthritis and Rheumatism 18 (4): 282-97.
Wallace, D. 2000. "Is There a Role for Quinacrine (Atabrine) in the New Millennium?" Lupus 9: 81-2.