Friday, April 24, 2009

Prescriptions 101: Plaquenil

It's been awhile since I did a prescription post. So for those who have been anxiously awaiting the next you go! The medicine up for review: Plaquenil.

Hydroxychloroquine (brand name Plaquenil) is considered an antimalarial drug used to reduce inflammation in the treatment of Rheumatoid arthritis and lupus. It isn't clear how it works, but the drug is a disease-modifying drug (DMARD or disease-modifying anti-rheumatic drug) meaning that it's designed to decrease pain or swelling caused by the disease in question.

I've been on plaquenil for a total of about 3 1/2 years since my diagnosis. This latest run (from June 2007 to present) has been very successful, and side-effects have been non-existent. In addition, I've had little to no disease activity since I've been on it, and my present dosage is 400 mg (200mg twice a day). In fact, it's been so effective that it's one of only two prescriptions I'm on right now (5 mg maintenance dose of prednisone every other day being the other one.) I also take a baby aspirin and calcium supplements daily, and although my doctor just added a prescription for a vitamin D supplement...I don't count it, since it has no effect on my disease activity.

However, the last time I took plaquenil, I didn't have as much success, for two reasons:

One - after being on Plaquenil for about a year and a half (at a dosage of 600mg for the majority of the time), the drug started adversely affecting my eyes. I knew retinal changes were possible, but it was such an uncommon side-effect that none of my doctors nor I were worried. However, my eye doctor discovered a change in my eyes after 18 months and recommended I stop taking the drug immediately. Because the changes to the eye caused by Plaquenil are usually reversible, after less than six months of stopping the drug, my eyes returned to normal.

Two - even when I was on the drug, I still had some degree of disease activity AND I was on several other prescriptions at the time to keep away pain, swelling, etc. This first time around, I wasn't that thrilled with the drug...which was a bummer...because a lot of lupus patients swear by it.

Because I'd had such a so-so experience with the drug the first time around - I was nervous about making the switch from CellCept (what I consider my miracle drug - see my previous post for more info) to Plaquenil back in June of 2007. (CellCept isn't safe to use during pregnancy.) Much to my relief, the transition was seamless and I had absolutely no disease flare-up at all. (Note that my lifestyle was much more accommodating than it was the first time, and I know that made a big difference!) When I made the switch, my eye doctor felt that going back on the drug for a short period of time (pregnancy) would not be harmful to my eyes, and he was right. In fact. my eyes have not been affected in any way, so I'm sticking with plaquenil for now. It's a lot cheaper than CellCept - and my body is responding favorably. I guess you can consider me a convert.

Dosage: I started at 200mg, have been on as much as 600mg (when 400mg wasn't doing the trick), but have now had much success with my present dosage of 400mg.

Known Side Effects:

Side-effects that should be brought to your doctor's attention:
allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue•change in vision•fever, infection•hearing loss or ringing•muscle weakness, tremor, or numbness•redness, blistering, peeling or loosening of the skin, including inside the mouth•seizures•unusual bleeding or bruising•unusually weak or tired

Side effects that typically don't require medical attention (but can be bothersome, nonetheless):
change in coloration of the mouth or skin•dizziness•hair loss, lightening•headache•irritability, nervousness, nightmares•loss of appetite•stomach upset, diarrhea

Administering: This is an easy one - as it requires no special food or drink. It's simply recommended that you take it with water and at the same time everyday.

Cost: Moderate, in my book. $100 - $199, however my insurance covers almost 2/3 of that cost.

Limitations: It typically takes up to 2 months (and sometimes up to 6 months) to see the results of Plaquenil. I experienced pain relief right around the 6 week mark.

Also note that my pharmacy offers two different manufacturers of the drug - and I much prefer Mylan. The other manufacturer's pills leave a terrible taste in my mouth. Thankfully my pharmacist knows which one I prefer now!

Additionally, when I became pregnant, Plaquenil was not on the approved list for breast-feeding drugs. (Safe for pregnancy, if medically necessary, but not for nursing. I'll explain why in a future post.) However, during the course of my pregnancy, it was switched into the safe category. Guess those 9 months were necessary!

Another interesting note: When Johnny and I traveled to South Africa a few years ago, with plans to go to Kruger National Park where there is a malaria risk, we had to get prescriptions for anti-malaria drugs. I wasn't on plaquenil at the time, but I mentioned the fact that I'd taken it in the past - just in case there was a concern of a drug interaction with another anti malaria drug and my other medication. The nurse practitioner in my doctor's office recommended we go with Malarone, instead - guess it's known to have fewer side-effects.

For more information, check out the following article: 10 Things You Need to Know about Plaquenil.


B-O-B said...

Thanks for this post Sara! I've been on Plaquenil for two years and am currently in my first flare from my initial diagnosis. My doctor has put me on a round of steroids so we will see what happens. But I needed the reminder about Plaquenil and to remember to keep this disease at the front of my brain!

Sara Gorman said...

Hope this flare doesn't stick around. Best of luck and keep me posted. I'll be thinking of you and hoping that those steroids do the trick.

MaNouvelleVie said...

This is my first time hearing of someone else's experience with Plaquenil! I have been on it since my diagnosis in '95. It has been pretty helpful for me. I've had brief flares so I needed something more, so my previous doctors would prescribe Prednisone to help. The doctor I'm seeing now has went about it more aggressively though, adding both Methotrexate and Cellcept to my regular Plaquenil treatment. I didn't think much of it at first, but when one of my friends, who is having more serious Lupus complications, told me she being treated with those, I started to have doubts. Also, I had been put on Cellcept before by a doctor that wasn't my regular Rheumy, after going to the E.R. with complications while on vacation. But when I returned home my Rheumy at the time insisted I get off the Cellcept. She said that the complications (the same ones I'm having now) I was having didn't call for such an aggressive treatment. I was put on a Prednisone taper that took care of the problem right away. So recently I asked my current Rheumy if I could try to see how I do without the Methotrexate and Cellcept which have been causing side effects. So far I'm doing just fine. Anyway, I'd much rather go up on the Plaquenil or try another Prednisone taper which I haven't had any side effects from.

sweetandfit said...

hey there! just found your blog, its nice to "meet" another lupus blogger - I actually live in VA, and I am looking for a new rhuematologist. Do you know is the doctors you recommend are accepting new patients?

Sara Gorman said...

I agree, MaNouvelleVie! Aside from the eye trouble I had, I think plaquenil is an ideal solution to control lupus activity. Here's hoping it works for you. And you know a little bit of prednisone always helps. :) Thanks so much for sharing.

Sara Gorman said...

I'm pretty sure Dr. Stahl is taking new patients, but I can't be sure of the others.

Here's another No.Va. rheumatologist who gets rave reviews:
Dr. Kempf in Arlington - 703-525-3069

Anonymous said...

Has anyone who has had hair loss experienced plaquenil helping their hair grow back? I hope so ...

Anonymous said...

I was diagnosed with Lupus SLE about 6 months ago...been on Plaquenil since then. Initially, before the diagnosis, I lost a lot of hair. Do most people regain their hair after being on this drug for a while? I have read conflicting reports. It's not coming out as much...and I think I feel new little hairs growing in ( or that may be wishful thinking)...I just want my hair back!!

Anonymous said...

Found an article about a doctor in Australia treating lupus patients for 20 years with no meds, but on a gluten-free / lactose free diet. I started the glutten-free diet about 6 months ago, lost 20 pounds and feel a lot better. Have not had any flare ups since. Will start the lactose-free (harder for me) in a few weeks. Still taking plaquenil and CellCept. Both heaven sent. Hope this helps. If possible, take the Plaquenil and Cellcept brand names not the generic.

Sara Gorman said...

Just seeing your comment now...but i figured i'd respond, despite my belated reply! i haven't heard of plaquenil specifically stimulating hair growth, but ideally, if it's keeping disease activity at bay, then hair loss will be diminished, and hair growth will normalize. so many factors to consider, of course, as drugs work so differently per individual. i hope you're doing well!

Sara Gorman said...

Sorry for the late, oh-so-late reply. i wasn't getting comment alerts for awhile! i hope your hunch was right and your hair was indeed growing in. As far as your question, i think it's hard to know what causes the hair loss to begin with, so ideally, working with a doctor to determine which meds or other factors are contributing to the loss will lead to the return of hair growth. Hope you're well!

Sara Gorman said...

I've heard that same comment about avoiding generics from others. thanks for sharing your thoughts and experience. And so glad the gluten free has had such a positive impact. That's great news! It seems to be about 50/50 in terms of those that have i'm so glad it worked!! Those that do, swear by it. good to hear from you and take care.

Jodie Thompson said...

I just found out Monday I have Lupus., Had a bunch of blood work done and she said that came back good . so only other thing I need to do is see one more doc to see about my muscles n nerves being I know I have some damage from all the surgeries Ive had in last year. I was hoping the reason I am so tired, no energy, pain was part of lupus now that I know but reading side effects sounds like it could cause same issues I am having. kinda scares me now. I have that med waiting for me at the store (planquenil) n was told to take it for now one each night before bed. and will need to take rest of my life. until i get other test done as of now they thing i just have the skin lupus. i am allergic to alot of meds n do have stomach issues. i am scared now this stuff will hurt me more then help me. what do you think? thank u for your post. take care.

Jodie Thompson said...

I just now took my first dose of Plaquenil. the generic brand, im nervous about if I will get sick, dizzy etc.. at all. praying no sad effects. I was started out on 400 mg one time a day at bedtime. sounds different then some of what I have read. Is this normal? any info on anything with this or Lupus would help me. been doing alot of net reading but oh my goodness so much out there n so many different things so not sure what to think or believe so I thought maybe i need to hear from others who have it as well. thank you for your time. take care.

Sara Gorman said...

Jodi - How's the plaquenil going? It usually takes some time to a) let your body settle into the drug, and b) let the plaquenil start working! I hope it's going well - and be sure to pose any and all questions you have (re: dosage, side-effects, etc.) to your doctor. He/she is the best one to answer them - because each lupus patient is different. And don't be shy! No question is a silly one! take care - SG

Anonymous said...

The unkown infection causing ra or lupus is quite possibly lyme disease or babesia(a form of malaria)...many lyme patients are having sucess with this drug...get tested for lyme and co infections..a lot of us w lyme have joint ra issues and or lupus..find a lyme litetate doc..