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Barely keeping it together

May 12, 2010 - 1 comments
Tags:

lupus

,

Plaquenil

,

cellcept

,

heart rate



So I've tried the brand name plaquenil and so far the results aren't so great, and now I know there were certain side effects that I was experiencing months ago, just not realizing they were from the medicine.  Acne is one, it definitely makes me break out.  Another is that it makes me more fatigued and prone to dizziness.  I'm pretty sure it has something to do with my hair loss.  Stomach upset and gassiness (those are just lovely, let me tell you). Dry eyes and a swollen tongue are newer ones. An awful one is that it makes me feel more achy; I've been noticing this for a couple months now. And of course, the tachycardia.  When I first took this pill (brand name), it didn't seem to have that almost instant effect of making my heart race and the blood rush to every part of my body, and I thought, "Thank god, maybe it's working!"  And then later, not only was my heart rate fast, but my chest hurt, especially right over my heart.  It's the most awful, scary feeling in the world.  Plus I'm having muscle spasms, which I'm thinking may be a result of the plaquenil.  Another scary thing is that I'm having major bruising all up my legs, and also my lymph nodes are really swollen.  It's just so hard to ascertain what is from the medicine and what's from my lupus, and therefore it's hard to gauge whether it's better to take the medicine or not take the medicine.  My rheumy suggested switching to Cellcept.  What makes me nervous about this is that not only am I reacting badly to plaquenil, I also had a bad reaction to prednisone.  When I took it, it almost immediately took away my joint pain, but then a few hours later I was so achy, and I began to have this awful pain down my arms (I even developed a bruise) and seemed to lose sensation in my arms and shoulder area.  I only took 40mg for four days! And I was off plaquenil at this point, but perhaps, as it was still in my system, this was a reaction of the two drugs?  I also had a weird reaction when I tried to take zoloft while on plaquenil, my chest felt tight, like I couldn't breathe, my throat felt scratchy. Again, was it the zoloft, the plaquenil, or a combination of the two?  So what is a more serious drug like Cellcept going to do?  I'm scared to take the plaquenil and I'm scared to try anything new, but I'm also scared of not taking anything and leaving my body vulnerable.  I wonder if the plaquenil or the lupus has permanently messed up my body, if my entire life will be spent suffering through the side effects of medication. I have no idea what to do, and the doctors are so perplexed that they can't offer any solutions, except to just try something new.  Easy for them to say.  I'm feeling pretty discouraged right now.  I try not to feel too sorry for myself.  I know there are people out there suffering way worse.  But I can't help thinking, "Why me?" I'm 22 and suffering from issues that people usually deal with when they're old.  It doesn't seem fair.  I think back on my life before lupus, when I was 15, 16 and thought life was so rough and felt sorry for myself; I had no idea how good I had it. Were those really my best years? Does it all go downhill from here? That's what it seems like at this point.  And then I look back at when I was first diagnosed, and everything seemed to go so smoothly, I handled the prednisone just fine, no side effects, went seamlessly onto the plaquenil, and for years felt great, despite having lupus. Again, I really took for granted how well I was doing.  I thought I had it so rough, was mad that I was fatigued easily; I had no idea how much worse it could get. Well, I have a front row seat now.  I pray with all my heart that things will get better, that there's a light at the end of the tunnel, that somehow, someway I'll find a solution to all of this.

3 weeks of hell and no anwers

May 04, 2010 - 1 comments
Tags:

heart rate

,

Plaquenil

,

gardasil

,

Gardasil side effects

,

Doxycycline Allergy

,

Systemic Lupus Erythematosus

,

Sjogren Syndrome

,

tachycardia



So going off Plaquenil should have been fairly straight forward, right?  I was "not in a flare" (according to my rheumy) when I stopped it, so I was expecting maybe a little joint pain after a while.  I thought it was worth it as my heart rate was at 120 bpm and the Plaquenil could have been causing it (though it's not a know side affect).  Well it's been three weeks and I feel like I'm dying a slow death.  What started as slight indigestion after about 5 days of being off it turned into me being so sick that I've lost nearly 10 pounds. Food felt like acid in my stomach.  I'm taking Prilosec and now instead of diarreha I'm constipated (first time in my life!).  Then there's the muscle spasms, which happened around 5 days after stopping the plaquenil. First it was in the arch of my left foot, now it's spread to basically everywhere.  It's so bad some night's I can barely sleep, and I have insomina besides that, probably from anxiety.   I'm extremely sensitive to the cold now.  And my hair's falling out. If it doesn't stop soon I'll be totally bald.  I dread brushing my hair, taking a shower.  I exhibit symptoms of Sjogren's which I've never had before: my mouth, eyes, nose and skin are dry, I can't sweat as much as I used to.  And every medicine I try just seems to make it worse.  The plaquenil causes tachycardia, as do any other meds I take: zoloft, ibuprofin, tylenol, prednisone.  Prednisone caused some other weird side affects, like awful muscle pain, especially down my arms, and I swear I've lost some sensation.  It also made the muscle twitching worse.  Ibuprofin did the same thing.  Now I have a cold and my chest hurts and I'm constipated and achy, my head feels like it's swelling.
I have been going over and over in my mind: what went wrong?  Has the Plaquenil turned against me?  Did stopping birth control mess up my body?  Doxycycline? Is it the Gardasil vaccine (and god knows some of the symptoms other girls are having sound very similar to mine)?  
The worst part is my drs either don't care or think I'm crazy.  All my test have come back normal, so they all think I'm crazy. My rheumy has given up on me.  The cardiologist says they won't run any more tests. My gp wants to shove anxiety pills down my throat, even had me go do a mental evaluation (which I passed with flying colors! what a shock), and tells me "it's physiologically impossible to have this reaction to all of these medications."  Hmmm, so how come when I've come into your office and have taken something (like ibuprofin) my heart rate is like 100, and when I've taken nothing it's 74?  Why are there other people out there who have similar reactions?I tell you I had a horrible reaction to zoloft and you want me to take it again?  I don't doubt that I'm anxious (who wouldn't be) and that probably doesn't help matters, but there is something physically wrong with me.  Somewhere along the line my seemingly healthy body became extremely messed up. Maybe if the doctors had listened to my symptoms and investigated right away I wouldn't be dealing with half this bs.  Maybe I should have just stayed on the plaquenil and suffered the rapid heart rate that felt like it was going to pound out of my chest; it almost seems preferable to this.  I'm constantly paranoid that not being on anything is going to cause the lupus to go crazy, that every second i'm making it worse and worse.
So where do I go from here?  I'm currently waiting to hear if my insurance approves the brand name plaquenil for me.  It probably won't make a difference, but it's worth a try.  Because the other options are suffer on generic plaquenil or go on a another lupus drug like cellcept, which scares the s**t out of me.  I could barely imagine being on plaquenil for life, let alone this awful drug. From what I can tell its for people with really bad lupus, especially people who's kidneys are compromised.  Plus, if I get a rapifd heart rate from every med, what are 1,000 or more mg of cellcept gonna do?
I'm having like a million gastro tests done, but of course It's gonna be a while before they actually get done.  The gastro dr says it's "likely more that one thing." Great. I see a neurologist but not until the 25th.  Wondering if I should see an endocrinologist.  Perhaps I have a form of dyautonomia. I'm also considering seeing a lupus specialist, though I don't know how that'll work with insurance.  Birthday is on the 29th.  Not to be pessimistic but I don't think I'll look back on it fondly. Unless of course I get worse.  I know there are people out there who are in much more dire straights than me, but right now all I think about is that my life is ruined, over, and I've barely lived, I'm totally hopeless and alone, there isn't even a medicine that can help me.  I'm scared to be alone, I often sleep with my mom.  Sometimes this feels like an awful dream; I think could this honestly be happening? Last year at this time I was happy and healthy and ready to graduate college.  A year later my dreams are crushed.

Echo good, heart still fast on Plaquenil

Apr 26, 2010 - 0 comments
Tags:

heart rate

,

Plaquenil

,

lupus

,

echocardiogram

,

tachycardia



So the echocardiogram looked fine, my heart is healthy.  Saw three doctors today -my pcp, the cardiologist, and my rheumy- and general consensus seems to be that the meds aren't causing a rapid heart rate; rather there must be some other cause.  My pcp and the cardiologist were quite certain that stress was the culprit.  My rheumy didn't necessarily rule out plaquenil, but was quite skeptical that Plaquenil could be causing tachycardia.  So he suggested just going off the prednisone and starting up 200 mg of Plaquenil again (I've only taken three doses of prednisone, so he said it was ok to just stop it).  So I took 200 mg of plaquenil about an hour ago and my heartrate--which was 74bpm at the doctor's-- is up to 110 bpm!?  I was crossing my fingers and praying that somehow this time would be different, but of course it wasn't.  I'm so happy there's nothing wrong with my heart, but I'm so distraught that the plaquenil is behaving this way. God, what could possibly be wrong with me?!  I mean, I know that if this tachy is due to stress, it may take a while to get back to normal, but the plaquenil is most definitely doing something to me.  I would absolutely hate to have to stop the plaquenil, as it's supposed to be the safest drug for lupus, and it's worked so well up until now.  I'm at a loss for what to do, accept to just suffer and hope it gets better.

Worst time of my life

Apr 25, 2010 - 1 comments
Tags:

lupus

,

heart rate

,

Thyroid

,

potassium

,

Yaz birth control

,

doxycycline

,

ringing in the ears

,

Chest Pain

,

Plaquenil



First journal entry!! It's not exactly a positive one though. I was diagnosed with lupus in late 2004 at the age of 17 after having extreme, debilitating joint pain for about a month. I was put on a course of prednisone and then 200 mg of Plaquenil; I tolerated both medications fine and had pretty much been doing great until a few months ago.  Probably about mid-February I noticed that my heart rate was quite fast.  Then I started to get chest pains.  Then the hair started to thin drastically (I'd gone off Yaz in mid-January, and know your hair can thin out after stopping bc, but I've gone of bc before, and this was way more drastic; I should note that I actually went off the Yaz because it was giving me heart palpitations, but those went away after stopping it).  And then I noticed increased ringing in my ears (I've always had a little bit from time to time). I was on 200 mg plaquinel and doxcycline at this point (for my skin). I was out of my home state, in the middle of an internship, and, as I wasn't in a lot of pain, held off on going to the doctor's until I came home at the end of march.  First thing I found out when I came home was that my grandmother had passed away the day before.  I was so upset that concerns for my own health kind of went out the window for about a week.  
When I finally called my rheumatologist's office they told me to just stop the Plaquenil, and the earliest they could make an appointment to see me was a week from then.  The next day I went to my pcp's office to discuss my symptoms, and they ran a bunch of blood work.  Everything came out fine (blood pressure was fine too), with the exception of low potassium levels and an elevated d-dimer.  The d-dimer caused my pcp to send me to the emergency, as it suggested I could have a blood clot.  The ER doctor told me that it was probably a false positive, as is the case with many autoimmune diseases, but she did a cat scan of my chest area just in case. It came back fine.  The doctor told me she didn't know why my heart rate was so high (it was going between about 98 and 125). I asked if she should to a cat scan of my legs to check for blood clots but she said that it wasn't necessary.  I'm trying to take her word for it.  She noted that my thyroid test came back with a rate of 1.00, which is lower that normal for me but still normal, but she figured it was worth noting as a pounding, rapid and irregular heart rate can be signs of hyperthyroidism.
A couple days into having no medication I began to feel sick to my stomach.  This eventually turned into heartburn, loss of appetite, and diarrhea, followed by joint pain. My resting heart rate had started to slow down, but about a week after being off meds started to increase, probably because I was in an extreme flare up (at least that's what it seems like to me).  I had seen my rheumatologist during this, and he was extremely unhelpful.  He didn't give any advice or insight into what could be going on.  All he did was order a blood test to see if I'm more susceptible to blood clotting (can't remember what test was called) and told me if I was in a lot of pain he'd write me a prescription for prednisone.  He said rapid heart rate was not a side effect of plaquenil, and kind of made me feel like I didn't know what I was talking about. When the flare up got really bad, about 2 days after seeing my rheumy, I took (on the advice of the on-call doctor from my rheumy's office) some plaquenil (I took 100mg even though he told me to take 200, my regular dose, just because I'd been off of it for so long). It made my heart rate go crazy.  So, about a day and a half later I took 20 mg of prednisone, as prescribed by my rheumy.  My resting heartbeat went up to about 100 bpm, and while I could feel it soothe my joint pain almost immediately, it ended up giving me some muscle pain, especially in my lower back, plus I has some pain in abdomen too (nothing terrible but still noticeable).  
So here I am, in the middle of a flare, and all the medicine that's supposed to be helping me is making me worse.  Ibuprofin and tylenol weren't cutting it; they'd take care of my joint pain but I still felt sick and weak.  I tried 200 mg of Plaquenil again with the same affect as last time, plus it actually seemed to make my joint pain worse?! I'm now trying to stay on the prednisone, just so I'm on something for my lupus.  Today is the second consecutive day I've been on it (so dose three overall).  Yesterday when I took it I exhibited the same symptoms as before, muscle pain and tenderness, especially in my lower back, plus I think the ringing in my ears is worse; had to take a tylenol to sleep.  I called the on call doctor at my rheumy's office to ask about these symptoms, and as usual, he was extremely unhelpful and clueless.   I called my pcp's office and talked to a nurse practitioner, who was more helpful, and convinced my to stick with the prednisone at least until Monday when I see the cardiologist. We'll see if today is any better, but so far I'm not optimistic.  I'm already feeling some abdominal pain.  The one positive thing about the drug is that I have my appetite back finally.  I lost about 7 pounds these last two weeks for being so sick, so it's nice to be able to eat again. I go to the cardiologist tomorrow to get a echocardiogram done, plus go over the 24 hr heart monitor I wore, so I'm crossing my fingers that they'll be able to shed some light on this issue and that the results are positive.
I've been told by my pcp that my heart rate has been 88 - 112 for the last three years (I think the 112 is from these more recent tests though). Before that it was 60 - 80.  So it makes me wonder if this rapid heart rate issue has been manifesting itself for a while, and then something three months ago spurred it on. I will say that in 2008 I'd just transferred to a much harder college, and so was under constant stress from.  I also started to drink coffee on a regular basis, though nothing drastic, a cup in the morning, and sometimes one in the afternoon.  I've also been looking back through pictures of myself after I noticed my hair thinning, and in April of 2009 there are some closeup pictures of me were my hair was definitely thinner.  I hadn't though anything of it at the time, I was preoccupied with my last semester of college, but I'll say that my stress level was at an all time high.  Also, since last fall at least, there has been times when my plaquenil didn't seem to be cutting it with the joint pain; I'd often have to take Iburprofin on top of it.  It happened a lot these past couple months, especially with my legs (and I don't know how much that had to do with me taking two mile walks almost everyday.  So I'm wondering if these past three years I've been in a type of lupus flare up because of stress, which made my heart rate go up, and perhaps I needed to be on a higher dosage of Plaquinel.  And I really wonder if the doxycycline was what spurred on the really fast heart rate, as I was taking it when all these symptoms started to occur.  Granted, my internship was extremely stressful and I was drinking about 2 cups of coffee a day (which I still don't think is a drastic amount), so that could have likely contributed to the faster heart rate as well; but the doxycycline seems suspicious.  My doctor thinks some of my chest pain may have been related to it, as it can damage your esophagus.  I stopped it in the end of march, and my chest pain did seem to improve a lot, although I still have some now.  I'm still wondering about the Yaz too, as it was giving me palpitations; could it have caused to permanent damage? Hopefully the cardiologist can answer this.  And lastly, I wonder about those low potassium levels.  I know that a side effect can be irregular heart rate, and I read somewhere else that ringing in the ears can be one too.  The nurse practitioner who went over the tests with me asked if I'd lost a lot of blood recently, and I told her that I bled quite heavily when I stopped the Yaz.  Could this have something to do with it?  If so, I still don't understand why my plaquenil would make it worse.  And I'm sure me being on Prednisone isn't exactly helping my low potassium level (or the thinning hair for that matter).  And of course, I've looked at the worst possibilities, namely cardiomyopathy, the side effects of which are fast, irregular heart rate and chest pain.  I saw online that in very rare cases this can me caused by Plaquinel.  Great.
I try not to make myself depressed or anxious by looking up possibilities online, but the "not knowing" is killing me.  It's awful to be a medical mystery, to have doctors give you blank stares and no answers.  It's terrible to take a medicine that's supposed to make you feel better, and instead feel like your dying.  I'm hoping and praying that I will have some answers soon.  I can't go on forever like this.