So awhile back my rhumatologist wanted me to try Plaquenil. I did it for 10 days. Starting on day 2 or 3 my heart started to race. 120-130 bpm, resting! I got winded walking 5 steps. It would wake me up in the middle of the night with my heart just racing. I'd lay there and hold on for dear life. Then it started skipping beats. A lot. I called the rhumie and reported it and he said to stop it and see if it went away. It did, to a point, but not completely. Apparently it has a very long half life. Just how long I can't seem to find.
Now, about 6 weeks later, my resting heart rate is 96-100 bps, up from about 77 bps. I get exhausted just walking halfway across the house. Of course, some of this could be due to the almost 40 lbs I gained the last time I had a flare and had to bump up the prednisone for awhile, but this is just miserable! My GP can't seem to find anything wrong with me. I have an appt. with the pulmonologist tomorrow morning but my lungs seem fine so I doubt they'll find anything. All other tests have come back fine.
Has anyone else had this reaction and if so, how long before it went away?
I Never had a reaction to the plaquenil, ive been taking it for over a year. But i did have the same symptoms taking the prednisone, the prednisone caused my heart to pound Hard and race. It gave me anxiety and depression, it made me gain weight like crazy, since ive stopped the prednisone all my symptoms stopped.
My racing heart (and fatigue) is what finally convinced me to go to a doctor in the first place. She put me on blood pressure medicine and Plaquenil as well as anxiety med, I can't say the Plaquenil increased my racing heart, but I noticed if I didn't take my anxiety med, it would still race especially at night. Because of the addiction factor the doctor gave me a lower dose anxiety med and she said to take the xanax first I take 1/2 before bed) and to use the anxiety med only if xanax doesn't work. (Evidently anxiety meds are really hard to get off of. She said while xanax will take a couple of days of discomfort and be out of my system, anxiety meds are a lot harder to be free of.) I guess I'm glad for her concern because I liked the anxiety meds more than anything else she prescribed! She also suggested Valarian from the health food store.
Like Christie, when I took Prednisone, I was crying and depressed. Was so glad She didnt prescribe it for very long. Except for my immediate family I was able to hide that from others.
My dr's appt is Monday and I am wondering what he will put me on for the lupus. I've struggled with pain for many years and was going to a pain management dr. The lower back injection helped, but when he injected my upper near my neck, my heart went out of wack. A month later I went to Colo. for my daughter's wedding and ended up in the ER the night before the wedding. My heart rate was so high and my oxygen level was low. I was put on oxygen 24/7 for the rest of the trip. Then when I returned home, I had to see a cardiologist and pulmunary dr. I was put on metoprolol at night...and sleep with oxygen. I have no difficulties in the day. My heart rate is back to normal as is my bp. I am not sure if the inj which was probably a steroid, cause the fast hr, altitude, or lupus. Hoping for some answers next week. I have been tested twice (pos) for lupus. I was definitely interested in meds so that is why I responded. I hope you will get some answers on Wed. I try to take a little meds as possible.
I was put on plaquenil getting on for 2yrs ago and my rheumo could only give me 200mg daily because of my other meds as he did want to go higher...it's a good job because i don't thinkmy system could have took more.
I had the racing heart like yourself it feels like an heart attack is about to hit you, i suffered bad nausea, felt like the rooms was clocing in on me, bad panic attacks and if my hubby had to pop out i was on the mobile for him to get back besides other reactions....so i pulled off it myself but i was taking it at 2pm in the afternoon between other drugs, then a friend told me to take it at night which i did at 11pm as she found your sleeping the affects off so i tried the drug again and took it at night and after nearly a week things carmed down...just the odd nausea with it and loosing weight but besides that the drug was excellent.
It does'nt affect everyone and side affects hit we all in different ways....i wish you all the best with your test today and please let we know how you got on.
The Plaquenil is certainly out of your system by now. Sometimes symptoms are not related to the drug but underlying medical problems When my disease is more active my resting heart rate is 90-100 also but is not related to the medication I currently am on Lopressor and if I forget a dose my heart rate sky rockets- this drug actually keeps my HR down
I have been on plaquenil for 6 months and noticed my heart races like crazy in the evening after my second 200mg dose. It started about 3 months ago and has had me worried. See my rummy next week to discuss. I never feel any irregular heart issues after my morning dose, perhaps because I’m usually busy. Worry about long term effects.
Yes discuss the racing heart with your doctor because when i went back on it...the rheumo did tell me that if the side affect occured again i was to come off it but it stopped like i say taking it t night, it's just a shame it did'nt last long than a year & half.
Kathy if you feel none of this in the morning but you do later, have you thought the dosage can be to high for your system.
I've had my neuro take 2 lots of meds for my seizures to the highest dose with one tablet on each but tried seperatley, i felt the nausea come on and feeling sick but what topped it was bad stomach pains...so i dropped the extra tablet and it soon stopped.
So just watch incase your dose is to much.
All my love Terri xxx
Kathy said:
I have been on plaquenil for 6 months and noticed my heart races like crazy in the evening after my second 200mg dose. It started about 3 months ago and has had me worried. See my rummy next week to discuss. I never feel any irregular heart issues after my morning dose, perhaps because I'm usually busy. Worry about long term effects.
I’m on both plaquenil 400 mg and pednisone 10mg, my heart doesn’t race, but I have gained about 40 pounds… The doctor just lowered the dose of prednisone… Because when he took me off completely my feet and legs became swollen … I do get angry and depressed, but I’m learning to control my anger and my husband is learning to just stay away till I calm down…I have days when I’m really weak and I can’t move from the bed… But I was working a summer camp and was out in the sun 3 hours a day… I took a week off and stayed out of the sun and I felt a lot better…I’m still learning what I can and can’t do… I know that I can’t push myself to hard… I know stress doesn’t help, but my life is very stressful for reasons out of my control…
That is one of the tricks Lupus plays-YOU know things are wrong, but the Drs can't easily find anything. Shows me how far back in the dark ages our current medicine is.
I quit my Plaquenil a few months ago, when it seemed it wasn't doing much for me anymore. The symptoms it had worked for before weren't responding to it anymore. Nothing weird happened.
I just recently had to quit my prednisone, as I didn't have the money to pay the Dr a visit. Well, I have noticed that the pain from water retention in my legs is feeling better. Go figure.
I have taken plaquenil for about 20 years now. I was going to a rhumatologist for a little while, but nothing seemed to help. I have had a little racing of the heart sometimes, but I just thought it was caused by my morning coffee. After I lost all my beautiful hair and got some leisions on my face, not as bad as some discoid leisions. To me it was terrible and I should feel blessed that they do heal, but the scars remain, so make-up covers it fairly well. I do envy the people that can get up and go without putting on make-up and can go out without having to put on a wig. I know I sort of got off the subject of the placquenil. It has worked fine for me I guess. I have been taking the 200mg for all these years. I have bloodwork done through my primary phy. and he writes my script for the placquelil, I just eleminated the rummie al-togheter, that was money wasted to me.I feel a little tired sometimes. My husband and I walk about two miles a day. I love the sun, sometimes I over do it thats when I get the red spots on my skin that takes forever to heal. I have a few other bad habits , but I have cut back . five cigs a day and a little coctail in the evenings. OOOOH BAD GIRL, I know.
I was only diagnosed June 21 and I was put on the generic planquenil by my Gp to tide me over til I get my first visit with Rheummy. (Aug 1. not soon enough for me) After the second day I began to itch all over like there were bugs crawling on me. I had a similar reaction while in a clinical trial for cymbalta for my Fibro ( that went away)
I stayed with the generic for a couple of more days and developed full a full blown rash and hives. My Gp gave me a shot, a course of Millipred and Hydroxyzine. It took a full 10 days for everything to clear up.
My resting rate is a little high all the time 86-100. Sudafed makes my heart race and on the Millipred I can feel my heart-beat through out my whole body, but the effect does wear off. Hope all goes well for you
You sound like you are allergic to the Plaquenil. I have found out that I am also allergic to Epi Nephrin. So, of course I stay away from everything I am allergic to, if I know about it.
If you are to stay at all sane, you have to make a game out of it. (dancing around the room, having put lables on various items to represent the things you are allergic to, and dodging them-yeah, right!) lol! Just make things the best you can. Sorry you got the Lupus crud, too.
I am sure I'm allergic to the generic form (hydroxychloroquine) but I have heard of people not having as much reaction to the name brand Planquenil. I am kind of bummed out as lots of people get good results being on the anti- malarials. I was hoping to start out on something "light" not jump into steroids right off. Just my luck I guess.
My GP has me on 5mg Millipred alternate day therapy, but I'm concerned about long term use. Has anyone heard of or been switched to the name brand and been OK after reacting on generic? I am going to ask the Rheumy at my first visit if he thinks I could try the Name brand at low dose.
I feel your frustration about trying to stay sane. Keep up the good fight. It's nice to connect with others who really understand what each other are going through.
I've just been put back on plaquenil till i see my new rheumo and i was ok taking it after the side affects stopped but apparentley if you you get the rash which your having, it should be stopped so i'd see your GP about it.
I have recovered from the rash. Yea! I am continuing on the prednisolone til I see the Rheumy. I learned that about 5% of people have a "bad" reaction to hydroxychloroquine/ Planquenil. I also read that some people who are on the name brand instead of the generic (like I was on) do better.
I think part of my reaction could have been dose related. My GP started me out on 400mg/day. 200mg with breakfast and 200mg with dinner. Isn't that too much to start out on?
Mrs D, Back to the racing heart/resting heart rate- I have found that the Prednisolone has raised my resting rate. Yesterday it was 110bpm. Maybe that is keeping your rate elevated too? How did things go with the pulmonalogist? Hope things are going better for you.
I spoke to you about this 400mg to get used to your sytem is abit high, now if you was on 200mg like myself and taking it at night which i'm doing the same as before at 11pm, all i've had in 4 days so far is nausea.
Lisa you must have me confused with another member as i've not had to see a pulmonalogist?
Well my flares still there but yesterday i noticed the symptoms was so heavy and it's been the same today, so hopefully the flare won't last so long as 7wks.
All my love Terri xxx
sunnyworm said:
Hey Terri,
I have recovered from the rash. Yea! I am continuing on the prednisolone til I see the Rheumy. I learned that about 5% of people have a "bad" reaction to hydroxychloroquine/ Planquenil. I also read that some people who are on the name brand instead of the generic (like I was on) do better.
I think part of my reaction could have been dose related. My GP started me out on 400mg/day. 200mg with breakfast and 200mg with dinner. Isn't that too much to start out on?
Mrs D, Back to the racing heart/resting heart rate- I have found that the Prednisolone has raised my resting rate. Yesterday it was 110bpm. Maybe that is keeping your rate elevated too? How did things go with the pulmonalogist? Hope things are going better for you.
Lisa, he's referring to me, Mrs. Doolittle, or Mrs. D...lol
Terri...my appt with the pulmonologist just showed that the only problems I'm having are supposedly related to my weight (I'm morbidly obese). However, 4 months ago I was doing anything/everything I wanted, so I take issue with that. I have an appointment with my rhumie on Friday and I'm going to press him to figure this out. I upped my furosemide (dr. approved) and I'm losing lots of water so I've apparently been retaining a ton of water. I also dropped my prednisone down from 17.5 to 15 a couple of days ago, and that may also be contributing to the water dump.
As for the heartbeat thing, when I was first put on prednisone I had a resting hb of 84. After losing a ton of inflammation thanks to the prednisone, my hb dropped to between 71 and 76. I was thrilled. My body has always loved prednisone. My resting hb is still at 100 and any exertion (like walking 5 steps) raises it to at least 120. There is something seriously wrong here. Last night I was very uncomfortable and was considering going to the ER and then the furosemide kicked in and I'm feeling better now.
It's because lisa put everything together i do apologise.
Yes your weight can cause alot of issues i've been there myself at 18st so i know how your feeling....the prednisone itself causes water retention and by taking the furosemide and your prednisone being lowered abit you should see your weight reduce....i was on steriods for the wrong reasons years back and they made me hold water just the same.
It sounds like your body can't hold the weight your carrying and it can cause your heart to race besides anxiety, if you can seriously try and work hard trying to lose weight while your losing the fluid also you could possibly see a good weight difference because if your body feels ok with the prednisone i would try hard otherwise.
If you don't mind me asking what is your height and weight?....as i'm 5ft 8" and went from 71/2st to 18st but it still put alot of stress on my body...i attended tests twice with my heart and they both came back saying my heart was jumping on beat to much and the doctor said because i was only in my early 20s he did'nt want me on heart tablets, instead he wanted to see if my body could cope otherwise.
I wish you all the very best with your Rheumo on friday and hopefully something can be properly sorted for you.
Love Terri xxx
Mrs. Doolittle said:
Lisa, he's referring to me, Mrs. Doolittle, or Mrs. D...lol
Terri...my appt with the pulmonologist just showed that the only problems I'm having are supposedly related to my weight (I'm morbidly obese). However, 4 months ago I was doing anything/everything I wanted, so I take issue with that. I have an appointment with my rhumie on Friday and I'm going to press him to figure this out. I upped my furosemide (dr. approved) and I'm losing lots of water so I've apparently been retaining a ton of water. I also dropped my prednisone down from 17.5 to 15 a couple of days ago, and that may also be contributing to the water dump.
As for the heartbeat thing, when I was first put on prednisone I had a resting hb of 84. After losing a ton of inflammation thanks to the prednisone, my hb dropped to between 71 and 76. I was thrilled. My body has always loved prednisone. My resting hb is still at 100 and any exertion (like walking 5 steps) raises it to at least 120. There is something seriously wrong here. Last night I was very uncomfortable and was considering going to the ER and then the furosemide kicked in and I'm feeling better now.