View Full Version : Another Plaquenil Post...
02-01-2010, 09:29 AM
Hey everyone.. I just wanted to see if anyone else had similar experiences as me.
I've been on 200mg of Plaquenil twice daily since the beginning of November 2009. Since then, my menstrual cycles have been kind of wacky... starting later, not lasting as long and getting more and more light. Now, granted, I'm grateful for the ease up, but it's strange. I even took 2 home pregnancy tests (both came back negative) last week because my last period lasted for all of a half a day!
I do have an appointment this Thursday with my OB-GYN to make sure nothing crazy is going on... but I was curious if anyone else could offer some insight.
The new medication is the only thing that's changed since November.. that's why I'm thinking it's the culprit.
02-01-2010, 10:28 AM
I haven't had a period since my hysterectomy years ago, so I can't really help with the question. I'm sure this autoimmune thing helped my periods to be so screwy when I had them. I was never "regular". For years mine was so light and sometimes non existent. But since yours have changed recently and the only new thing is the Plaq, it could very well be the cause...or the AI thing doing something. I'm glad you're seeing a doc soon. Keep us posted about what the doc says.
02-01-2010, 11:17 AM
I'm no help, either. At 52, mine are more regular than they have ever been. I spent 13 years pregnant, nursing or both, so I had 5 or 6 periods in that entire time. Thanks to that, I think that I'm now doomed to have them until I'm 65! Actually, that's supposed to be good for my bones and skin, but boy, what a hassle!
I've been taking plaq for almost a year and it sure hasn't affected my periods.
02-01-2010, 05:04 PM
Thanks guys =) I would be so happy if mine were totally gone.. they used to be unbearable.... although that too has changed since the Plaquenil. Also, I have noticed some improvement already just with the fatigue and diffuse pain, I'd be bummed if we had to ditch the Plaq & go back to square one. Despite that, I already have some eye issues, I was premie and have Retinopathy of Prematurity, so the Plaq was a gamble from the start & the rheumy knew it. I'm going to my retinal specialist in a couple weeks, too, to have him see how things are going after these first 3 months... if there's any indication that it's building up and potentially causing more eye issues, it's out, no question. *Sigh* I suppose this is the life of having an AI disease.
I think I did come across one other post from someone else about the menstrual disturbances and Plaq, but I can't recall if it was this site or another forum... Then again, my entire medical history is pretty unique, so perhaps it's just me being weird!
02-01-2010, 11:00 PM
I've only been on the drug for a month - so let me get back with you after a few more and let you know how its affecting me. Hope that things are ok-- but I'd still go to the doctor... it might NOT be the drug and could be something else- like a cyst or something -- so do go in for a check up.
love and light!
02-03-2010, 06:37 AM
Mine actually went the other way >.< They last for at least 7 days (in fact the last one lasted over 2 weeks) and are so heavy that I struggle to go out and do stuff when I have it. I get terrible mood swings (well worse than usual ~lol~) and spend the entire time wishing I was a man!
Let us know how you get on at your appointment, will be thinking about you!
02-03-2010, 10:02 AM
Thanks guys =) Yea, I tend to be a bit overly cautious with my girly bits lately... I've had cysts on my ovaries before and just had a mass removed (benign thankfully) this past August...
Numpty - =( that sucks that yours have gotten worse, I hope it levels out for you. Mine pre-Plaq were like yours now... It's crazy how it seems to do different things to each of us!
02-04-2010, 01:33 PM
Update: OB-GYN thinks the weirdness is from the Plaquenil. She did a pregnancy test and it was negative. She still changed my birth control.... I expressed my concerns with the Yaz, and she seems to think a different hormone would help with the migraines. She's putting me on Lo-Seasonique.. so I only have a period once every 3 months. She seems to think that fewer hormone fluctuations might help to calm down the lupus flares... So, we'll see where it goes from here.
02-04-2010, 02:04 PM
I have the same problem as Numpty as the cycles are longer sometimes and I flare up. I am on Seasonique as well. It was proposed to help reduce the flares. It's a good thing you are off Yaz as I have heard a lot of negatives about it and, in fact, my gyn refused to put me on it knowing my dx. I thought that was very interesting.
Let us know how you are doing.
02-04-2010, 06:37 PM
Faith, thanks for the info. It's interesting you mention that reaction from your Gyn refused to put you on Yaz.. the second I told mine I'd finally received a Dx of lupus in November, the next thing out of her mouth was "I want you on something other than Yaz."... perhaps there's more to this than they're really talking about yet. How do you like the Seasonique?
02-05-2010, 02:26 PM
My doctors put me on the generic Yaz, Ocella, last year and have never said anything about it and seem to be ok with me being on it but it seems like everytime I read anything on here or other places everyone else is saying that its a big NO. weird.
02-05-2010, 03:24 PM
I'm surprised any doc would encourage someone with Lupus to be on any type of b/c pill...hmmm. So many possible compounded issues.
02-05-2010, 03:39 PM
Andrea, there is quite a lot of conflicted data out there regarding BCP's and lupus... we talked about it at length. She seems to agree that the fluctuations in the hormones may contribute to flares, but in truth, it's not quantified in research and as we all know, every one of us is unique in what sets off our flares and our symptoms... So, I suppose it's a decision best made by you and your docs. I am going to mention it to my rheumy in March and see if he agrees with the choice. The only other option I would have at the moment would be condoms or IUD. Frankly, children right now are nowhere near the top of my priority list, so I don't feel condoms are a reliable choice.. and I don't qualify for an IUD because I've never had children (you need to have had at least one).. and there's also talk that IUD's are risky for lupus patients due to the inflammation issues.
It's crazy how such a simple issue can raise so many questions and uncertainties.
02-05-2010, 04:26 PM
Hey Shannon -
I have been on Plaquenil for just about 2 years (yes, it helps and no belly issues for me - yeah! Eyes are fine too) but it has not affected my period. What HAS however is all the anti-inlflammatories I take. They thin the blood AS DOES prednisone. When Im on prednisone (any steroid) my periods are very heavy and last longer. I was just told yesterday to cut WAY back on my anti-inflam (NOOOO!!!!) to reduce any chance of bleeding too much. My gums this week have been bleeding more than ususal and Ive had a couple of doosey nose bleeds (not usual for me).
So - plaquenil-no, prednisone - yes. And - HELL NO - I do not want anymore babies, thank you very much...but my awesome hubby took care of that (wink wink).
WIth regards to the birth control - and this is just a thought and opinion on my part - birth control (all pills) can cause blood clots and SOME lupus patients have antiphospholipid antoibodies - which can contribute to blood clots. Some lupus DO NOT have problems with these anti-bodies, so I think maybe THAT would be the diff whehter taking any pill would cause a problem? You may have tested negative thus your doc does not think its a problem? Just a thought - I am NO doctor(ha ha - I could say that about a lot of doctors too!! LOL).
Hope this helps
02-05-2010, 04:46 PM
Lauri - That's a good point about the antiphospholipid antibodies I hadn't thought of.. I do believe though that I was negative last time we checked. I'll be sure to ask my rheumy about it.
02-08-2010, 01:34 PM
My periods have become irregular, not exactly sure when it started happening. I am on 200mg of Plaquenil twice a day too. I started in January of 2009, and now I am wondering if this is related. I have bought pregancy tests often in the last year, because I sometimes skip a month. My periods are light too sometimes, but can be heavy too.
02-11-2010, 12:38 AM
I started the plaq. about 3 weeks ago and I was taking it twice a day 200 mg. Then I started to experience nausea and having nightmares ( not your usual bad dream) it was rather disturbing.
Then the doc said to quit taking it for 3 days, then start back up taking it only once a day. It was going good, but after taking it , on the 4th day, I started itching all over my body especially my face chest and scalp!!!
Also severe migraine . I could feel the onset of the side effects like 20 Min's after taking the plaq. I wouldn't be surprised if the plaq may have messed with your cycle.
I have been keeping a journal of my symptoms because I can't keep up with all the different things I go through day to day.
02-11-2010, 07:42 PM
A friend told me to take Plaquenil with food/dinner and my problems subsided. Do you take it with food by chance?
Keep us posted,
03-02-2010, 03:11 PM
hi serenity yes my menstration is very mucked up and it only started when i began taking prednisone and plaquenil i was always regular till then now i have a irregular cylcle i have not had one in 2 months then i will have a light 3 days and then nothing again when discussing this with doctor they told me it both the prednisone and plaquenil causing it i to had 2 pregnancy tests both negative hope this helps hugs kim l
03-03-2010, 04:34 PM
I have had experience with Kenalog shots and the length of menses and have read it online as well in other blogs. I am anti-phospholipid antibody positive, and I am on Seasonique to neutralize the Lupus flares. The other choice is no b/c whatsoever which is impossible as I have endometriosis. For me, there is no choice whatsoever. I was on Yaz and had lots of issues and finally called telling dr I would no longer take it; what else was available? The seasonique has helped with joint pain, endiometriosis, polycystic ovarian syndrome as well as leveling out hormones although I have to be tested for APS and remain on aspirin with yearly aspirin resistance tests by hematologist.
03-04-2010, 07:15 AM
I have the antiphospholipid antibodies and I am also on birth control. When I brought it up, my rheumy and obgyn didn't think anything of it. I continue to be on them both. Been on birth control for over five years now and the plaquenil over a year now. The steroids do completely make me miss my period. My periods were so bad before I went on the BC I would be very hesitant to come off of it any time soon.
03-04-2010, 08:20 AM
Hey Ladies -
Just wanted to share what Im going through now - I am on 30mg daily pred (hoping to taper soon...please GOD). In any case, Sunday night I had the WORST cramps I can remember(my periods are usually fine, unless Im on pred)they actually woke me up. I went on to have a BRUTAL period...still have it. Doc says its the prednisone (pred is a steroid and steroids are a hormonal-based med).
Does anyone else, though, have increase in symptoms while they have their period? My joints get stiff and sore, much more fatigued, etc. Once its over, its like the symptoms settle down.
With regards to the subject of this whole thread, I think its obvious that each of us is different - tolerate meds differently, etc - whcih plays right into the fact that lupus ITSELF is so individualized, you know? I say - Whatever works!!
Best wishes to all -
03-04-2010, 03:13 PM
Yes I can definitely feel the difference when I'm on my period and when I ovulate. My joints get stiffer and I definitely have less energy.
03-04-2010, 03:37 PM
I hit a wall of fatigue; can't function, think, words do not come out right or what I am thinking does not come out correctly. Joint and polycystic ovary pain, worse fibro pain (back and legs) and it's even worse if I have a cortisone shot because then the cycle goes for 25-30 days along with symptoms. Can't wait until it's all over . . . something to look forward to and then look back on and be thankful it exists no more.
08-04-2010, 05:07 PM
08-04-2010, 06:40 PM
Wow, I forgot about this thread.. but it's so interesting to read everyone else's experiences. I, too, seem to feel worse during my period, increased fatigue / stiffness / joint pain, etc.
Funny things have still been going on recently, I'm going for my yearly check-up (oh joy) in a few weeks, so we'll have lots to talk about!
I was on a medrol dose pak about 2 weeks ago and after being off of that for a few days, I began bleeding (not when I should have). Like a few of you, I've been on Lo-Seasonique for awhile to minimize the flares and I'm not due to menstruate for another week and a half. Strange thing is, the blood was definitely different. Not bright or even dark red, but a deep, mucky almost muddy brown color, not black... I don't know... it was strange. Though, also I had some pretty significant cramping / pain on the left side (I've had recurring cysts on my left ovary) so I'm wondering if that's related. Ugh, I don't know.... so many questions.