Wednesday, September 22, 2010

Plaquenil - the lupus staple drug

Over the past few years, it seems that a little drug called plaquenil has become one of the major players when it comes to treating lupus. Not only are the side-effects minimal, it's believed that this drug can help reduce joint pain, fevers and fatigue, as well as inflammation, and that it can keep the disease under control and minimize flares. Note, for more severe lupus activity, plaquenil may not be sufficient.

It seems that most lupus patients I meet are currently taking or have taken some dose of plaquenil, me included. You can check out my previous prescriptions 101 post about plaquenil for more information about my experience with the drug.

Currently, plaquenil is working just fine for me - no side-effects, no flares...so all is well. In the past, however, I have had periods where the drug wasn't sufficient, and I also experienced that rare (very rare) side effect involving retinal changes that prompted my opthamologist to recommend that I suspend using the drug for a period of time. My eyes returned to normal, I stayed off of the drug for almost 3 years, and I haven't had any trouble since going back on the drug over three years ago. Fingers crossed - plaquenil is again in my good graces!

Since many of us have experience with the drug, I thought I'd post the poll at the right to see just how the drug measures up. Take a moment to answer the questions at the right - and see the company you're keeping when it comes to plaquenil!

17 comments:

Sportsgirl said...

Hi Sara, when you were off plaquenil were you taking anything else at the time?

Anonymous said...

It sounds like you are on Plaquenil during your current pregnancy. What are your thoughts/experiences with taking Plaquenil while pregnant?
Thanks

Sara Gorman said...

Sportsgirl - Thanks for stopping by! When I stopped plaquenil, I was also on prednisone, NSAIDs, a baby aspirin, and Zyrtec and Zantac...to help with angioedema (lupus swelling that my doctor thought might subside with the help of an antihistamine), none of which was enough to keep my lupus under control. (Even WITH plaquenil, I was flaring.) So I opted to start Cellcept (paired with Bactrim to help fight infection) - staying on the prednisone and baby aspirin, but going off of everything else. Over the course of the following year or two, I tapered off prednisone ompletely (which was another goal...to be steroid-free). I stayed on Cellcept for three years - loving every minute of it. I was like a poster child - no nausea, no side-effects...and it worked! I loved having only one major prescription to take (eventually i came off of the Bactrim, too)...and life was great! Of course, I became SO healthy and strong that I decided to try and have a baby, so I had to come off of the cellcept (not safe for pregnacy), and go onto plaquenil. I was SO nervous...worried that I'd flare on plaquenil alone, but figured that if I did, at least I'd know that my body wasn't ready to get pregnant, and that I needed to stay on the cellcept. I need not have worried - I did great on plaquenil (no symptom flare up at all) and didn't need to pull out any of the reserve prescriptions my doctor was ready to hand out, if in fact I did flare (i.e. the NSAID's, etc.) So - while plaquenil WASN'T enough at one time, it seems to be doing the trick this time!

Sara Gorman said...

Anonymous - Good question! First of all - when I was contemplating my drug options that were safe for pregnancy back in 2007, not all of my doctors were on board with the idea that plaquenil was the best option (i.e. safe). My rheumy thought maybe we should try Immuran first...but eventually (during the 6months while we discussed, "how are we going to handle a pregnancy...?") he decided that plaquenil was a better option for me. (My pulmonologist agreed about the plaquenil, as did about three other specialist my docs checked with across the country.) So - I went on it...and haven't had any trouble at all. I was terribly concerned about cleft palate (which I'd heard was a possible side-effect in the baby), but I don't think that's even accurate information anymore. (I throw it out there just to let you know that I started the drug with a bit of trepidation.) And just to show you how quickly drugs can change classes (meaning whether or not they're safe to use in different situations, like pregnancy), when I got pregnant in Jan of 2008, plaquenil was NOT approved for breastfeeding. About June of that same year (mid-pregnancy, mind you), it DID become approved. I asked how it could change so quickly, and the answer seemed to be that there was finally enough research to confirm that it was safe...it wasn't like it wasn't safe one day, but was the next. It sounds like there just need to be enough statistics to back it up in order to make the change. SO - I ended up nursing for 6 months, while on the plaquenil (and a little prednisone, which I added postpartum.) I've stayed on both drugs (including baby aspirin) since my first pregnancy, and now throughout my 2nd...with absolutely no trouble. I personally find this entire subject (of plaquenil during pregnancy) fascinating...because I feel like I witnessed the inherent ambiguity of the drug/lupus/pregnancy issue. All within a span of less than 3 years - things have changed so much. I don't many doctors who WOULDN'T recommend staying on plaquenil. That said, of course, one must take into account the state of the health of the mother. If staying on plaquenil will help to ensure that the mother stays flare-free, I imagine there's no question. If, however, the possible effects of the drug during pregnancy outweigh the flare-possibility (i.e. the mother has a mild case of lupus and it is believed that she would be flare-free without the plaquenil), then, sure, I imagine the fewer drugs during pregnancy, the better. I always found it funny that my non-lupus pregnant friends would freak out about using, say, a cortisone cream during pregnancy to help with mosquito bites...because they didn't want to adversely affect the baby. I always thought to myself, "if only they knew the drugs I was putting into MY body right now!" Bottom line - there is a different comfort level for every woman and doctor regarding medication during pregnancy. You just have to be sure you're comfortable enough with whatever decision you go with. (Note that I was crossing my fingers that since I had seen the "changing of the tide" with plaquenil, maybe by the time I wanted to have this 2nd baby, Cellcept would have been approved for pregnancy. Alas, it's not. But as I said, plaquenil are getting along just fine right now!

Sara Gorman said...
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Sara Gorman said...
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Sara Gorman said...
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Sportsgirl said...

Thanks Sara. I'm not currently taking anything at the moment, but I do have mild symptoms and mild lupus. I was prescribed plaquenil but I moved overseas for a bit and ran out of my prescription. Now I have noticed my symptoms worsening (quite a bit of fatigue and joint pain) so I am going to see the rheumatologist to try and get a prescription again. I'll definitely be looking out to see if it improves my symptoms. The first time I took it, I had just been diagnosed so was in kind of a tizzy/denial so I didn't pay attention if it worked or not...LOL

Anonymous said...

Hi Sara,
I took plaquenil for 6 weeks and had just started to feel GREAT...no fatigue or joint pain...and bam.... huge allergic reaction that was originally thought to be a flare...but had to spend a couple of days in the hospital on solumedrol and came with lots of steriods. I am down to only 5mg of prednisone now with baby aspirin....but rheumatologist and I are both very disappointed that I cannot take plaquenil again. He said he will never let me try it again.... :(.... I think allegic reactions to it are rare...but I had a doosie... (heavy sigh)

Sara Gorman said...

Sportsgirl - I hope a renewed prescription comes through soon! Here's hoping you can nip those symptoms in the bud before they get out of control. Keep me posted!

Sara Gorman said...

Anonymous - What a bummer!!! I guess you checked "Other" on my poll question about side effects, then, huh? :) Sorry you had such a bad reaction - but happy to hear that you're getting back on track now. Good news is that there are other combos of drugs out there that will work - I wish you luck in quickly finding the one that works for you. Thanks for sharing your experience - I'm sure others appreciate it, too!

Anonymous said...

I was yanked off Plaquenil 2 years ago due to retinal changes after 15 years. On nothing at the moment but my symptoms are mild and I manage with Curcumin w/ Bioprene for inflammation and occaisional Advil if pains get really bad...I was on methotrexate years ago and my rheumie wanted me back on but I refused. It made me feel more sick.

lupie said...

I read in the case of CellCept, the pregnancy category has been changed from Category C (Risk of Fetal Harm Cannot be Ruled Out) to Category D (Positive Evidence of Fetal Risk).

Sigh ......

Aymie said...

I'm one of those 2 who said that their rheumatologist didn't recommend staying on plaquenil for the long term. In fact, he said that it'd only be a trial and if it didn't turn out to be my wonder drug he'd have me straight off it 'cause the retinal damage was too big a risk. He said that if I even thought about getting pregnant he'd have me off it, just in case. And to not even think about breastfeeding...
But thankfully, after 9 weeks, it seems to be sort of working. I'm still tired, my joints still swell without warning, I'm still getting those horrible mouth ulcers that I know you all know about, and my malar rash is only seeming to get worse despite my rheumie telling me it'd get better. But I've reached the wonderful stage of being able to do normal stuff again, like go to the gym, go to those meetings after church and being able to spend real time with friends.
I guess I just have to wait and see what he say in January when I see him again...

Sara Gorman said...

Thanks, everybody for your comments on plaquenil. It's quite the conversation starter, eh? :)

So interesting how different doctors approach treatment, isn't it?

We were just discussing at my lupus support group on Tuesday how things are so vague with lupus...there's no cut and dry, no right or wrong...just a lot of trial and error, along with the personal experience of both the doctor and patient. That's why it's so important to have a good doctor/patient relationship, right? You have to tackle the whole lupus thing together, and have a certain comfort level with one another in order to get the best results possible - and those results will be slightly different for everyone. Never a dull moment!


Aymie - As long as you and your doctor are on the same page re: your drugs, and you're comfortable with his assessment, sounds like you're in good hands. Of course - those other symptoms you talk about aren't any fun at all...so stay after him. :) No matter what happens with the plaquenil, don't lose sight of those other issues. He might - but you shouldn't back down! Just so glad, however, you can see the light at the end of the tunnel.

And Lupie - tough luck for all of us about Cellcept, I know. Thanks for the update!

Penny said...

I was diagnosed with SLE and ITP (platelet antibodies), and have been on Plaquenil since March 2010. My doctor's handwriting is illegible, and the pharmacist filled my prescription as 800 mgs/day. He called her, her receptionist confirmed the dose. I looked into it after a month, as it seemed like such a high dose, and the receptionist again confirmed to me that I was to continue 800 mgs/day. After 2 months of this dose, I finally had an appointment, and my dr. was shocked at the dose. She took it down to 200/day.

Three days later, I was admitted to hospital, totally paralyzed for 60 hours until iv steroids kicked in.

My doctor's receptionist is horrible.

Penny said...

I should have added I'm currently on 1000 mgs/ Cellcept (BLEGH!), and 10 mgs of Prednisone, along with 400 mgs/ Plaquenil. I still have fairly significant joint pain. My doctor will not allow me to take any painkillers, since they may lower my platelets.

I also received Rituximab infusions in May, for my platelet disorder.