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jmail
07-05-2012, 02:23 PM
Hi guys. I'm curious about your dosage with plaqenil, and if you "supplement" it with something else (such as a steroid, etc.), and also how long it took to find a "sweet spot" with it, if you have. How often have you had to alter the dosage? I'm doing a total of 20mg of prednisone a day for the past few weeks, which is quite a bit lower from when I ended up in the ER and they did their magic with the liquid stuff and shots. I cannot remember how much they gave me nor what steroid(s) it was, but I did the old routine of stepping down from like 100 to 60 to 50 etc with the pills over the course of a few weeks, but couldn't get below 20. So we did the 400 a day of plaquenil, and once it's "stabilized" in the blood stream, then we'll try again to go down the rest of the way with the prednisone. My rheumy and me ain't been together but a few weeks, and he came in mid-flare. My lupus ain't hardly nothin' compared to some of you folks, so I'm probably trying to compare apples to oranges here... Also, does it cause you intestinal gas, and any advise for that? Does that go away, or is that something to look forward to? All I can say thus far is "miracle drug". Why didn't my earlier docs give this to me?.. Thanks.

SleepyInSeattle
07-05-2012, 05:42 PM
I have been on Plaquenil for about 10 months and never really had many problems with it. Maybe a little gassy...I find that taking daily probiotics helps with the "digestion issues' of most all medications. If you do end up having to take any sort of antacid, be sure to take it at least 4 hours away from the plaquenil - it can prevent your body from absorbing all of your medication.

Plaquenil did make me feel quite a bit better, after about 4-6 months...it can take that long to really kick in.

Unfortunately, it wasn't enough - my immune system attacked my right ear and I lost my hearing. So now I am on Plaquenil AND methotrexate. I don't like having to take all that, but it's better than going totally deaf or allowing the Lupus/Sjogrens to attack something else. You never know what it's on the prowl for! :-P

The methotrexate seems okay for me too - I know lots of folks have stomach issues with it, but for me, just like the plaquenil, all it does is make me a little gassy, but it's really just a few burps and I'm fine.

i do eat very carefully, and take my probios. I don't drink anymore at all (which SUCKS...I was never a heavy drinker but certainly enjoyed a glass of wine in the evenings and a beer now and then...) and am gluten-free on my doctor's advice. Too many dairy products seem to make any tummy troubles worse, too. Overall, I have just become more attentive to my body and try to listen to what it is telling me. Before all this happened I was a "push through whatever happens" kind of person - I am finding that that is not only no longer possible, it's not even smart...if I "push through" and ignore my body's signals, I end up paying a much higher price than if I'd just slowed down/eaten better/etc at the first sign of problems.

I was never on steroids until i lost my hearing - that was in early/mid-April. They immediately put me on 60mg of prednisone a day to get things under control...man, that stuff is AWESOME!!!! I had no side effects other than feeling totally amazing...tons of energy, no aches, no fatigue, and I lost 17lbs. I wish I could stay on it forever...sadly, it'll kill ya, so I am tapering off. I am down to 10mg/day now, and should be totally off in a couple of weeks. Every time I take the dosage down, I feel crummy for a day or two, then I readjust.

I hope that helps. At some point, most of us end up taking something more than plaquenil, at least for a while. But plaquenil works great for a lot of people - I hope that's the case for you.

I like your profile pic - I'm guessing from it and your user name that maybe you made the swords/mail? I am a bit of a history buff with the early renaissance period in Europe...such an amazing time. I don't really do the fairs (I have been to a couple when my daughter was young) but I read a lot. I am a horse trainer and it is amazing to watch the horseback games...the fairs we went to had some jousting and they had armor for the horses as well as the people...all hand-made and custom, and oiled with goose fat. It was really cool.

magistramarla
07-05-2012, 09:23 PM
Hi jmail,
I've been taking Plaquenil for over three years now. I only take 200mg. Read this recent thread - http://forum.wehavelupus.com/showthread.php?12018-Plaquenil-for-Short-People-%28Newer-Dosing-Guidelines-from-Ophthalmologists%29&highlight=plaquenil+short+people
It's been found that short people shouldn't take the higher dose. I don't know if this affects you or not.
Plaq gave me lots of tummy problems at first, but now I'm used to it, but I am gassy and I can't seem to do without a daily Prilosec. I didn't really notice how long it took to start helping, but now if I skip a few days, I really feel it.
I also was on Methotrexate for almost two years. I seem to be holding steady with just the Plaq now. I can never take steroids, since I have Avasular Necrosis, so I've never experienced how they would make me feel.
Be sure to see your ophthalmologist while you are taking Plaquenil. You need to get your eyes checked twice a year. It was my eye doc who told me about the new dosage recommendations. He seems to know more about Plaq and Sjogrens than my rheumy does.
Hugs,
Marla

Derrie
07-06-2012, 05:24 AM
So, I don't have a lot to add to Sleepy's and Marla's useful posts. I, too, take Plaquenil (300/mg a day because I'm short). And yeah, it's my miracle drug. I feel closer to normal than I've felt in almost a year now that I'm on it.

I had GI pain and bloating for about a week after I started Plaquenil, but that went away, and now I have no side effects from it. Are you taking the generic, hydroxychloroquine? If you continue to have GI issues from the generic, I have heard that some people have more success with the brand-name version of Plaquenil being easier on their stomachs. It may be worth trying a brand-name prescription if your belly continues to give you trouble.

And I echo Marla about getting a good ophthalmologist.

Glad the Plaquenil is working for you!

jmail
07-06-2012, 01:28 PM
The profile pic is not me. That's one of the inhabitants of Roanoke village (or whatever they call it) and my youngest, Nicolas. The whole "village" is "inhabited" with actors that really play their roles well, even speaking old English, using axes and primitive saws, etc. It's on that island in the Outer Banks, North Carolina, and was sure interesting. The kids got to dress up in the armour, then one of the "soldiers" would come by and pose with them, doing a "give me yer best mean face, youngin!" and then go "GRRRR!!!", then ask when you were going to start drawing the portrait... Fun time.

Anyway, I'm 6'2", and don't have to worry 'bout small doses. I lost 15 pounds when I flared and ended up in the hospital; then when they bumped my pred way up, I've now ballooned (literally) to almost 250 pounds, and my face is all puffy. I'd never done that with steroids before. I'm not sure how much of this is psychological (new med), how much is getting something to replace the pred, and how much is actual effect from the plaq.

Also, I'm CVID, so my immune system is already compromised, and then what I do have responds inappropriately both ways, in that invaders aren't checked or stopped, and the good guys are beaten up, so any of the altering drugs are out. However, the IVIG infusions *DO* smooth things out very well indeed thank you. So I'm hoping that I'll just be on the plaq and IVIG, and just use the pred for the "emergencies" again, as we used to...

Thanks for the replies. It helps. I can get used to the gas easy enough, but those around me dont'... tic

rob
07-06-2012, 04:57 PM
For Lupus right now, I'm managing it pretty well with 400mg of Plaq per day. I'm 6'1", 200, and I take 200mg in the AM, and 200 more in the PM. Been on it for many years now, something like 7-8 if memory serves-no problems.

Rob

PS-It's good to see you around again Jmail. Welcome back.

tgal
07-06-2012, 06:21 PM
3 plus years. 400 mg (200 in the morning and two at night). Took care of most of my skin issues and I did feel better about 5 months later. I was started on it and 5 mg steroids. Due to flaring I am currently on it, 40 mg of steroids and methotrexate (as well as 11 other meds. Was just put om 5 additional Tues).

jmail
07-07-2012, 02:33 PM
Thanks for the "welcome back" guys. I'm like you tgal with the meds. I was using one of those "weekly" little plastic medicine thingies for my daily dosing of stuff, but I've given up and just pile it all in my pocket as I head out to work. A fellow at work asked me "do you take the pocket fuzz with the pills?" and i replied "good source of fiber!" Between the supplements and the meds, I've got a fistful of caps & tabs just for the 8 hours I'm at work. I take my 2 thyroid stuffs first thing in the morning, then head off to work, where I then sort my stuff by time of day, and eat breakfast, then start on the meds. If I'm too sick to go to work, then I have a tough time to remember my meds... lol - I'm hoping I can get back to that 5mg prednisone mark again myself Rob. btw, is that one of your shots of the sunset in your avatar? It sure are a perty pikchur dude. My wife has one from out in Nevada back in 1992 that's great, and that we've been trying to find so that we can post it all over the place...

rob
07-07-2012, 03:33 PM
btw, is that one of your shots of the sunset in your avatar? It sure are a perty pikchur dude. My wife has one from out in Nevada back in 1992 that's great, and that we've been trying to find so that we can post it all over the place...

No, that picture was taken by a local photographer I know, not me. The picture was taken at one of my favorite spots not far from my house. It's a scenic overlook with a perfect view of the North Atlantic and the Channel Islands off Acadia Natl. Park.

The significance of the new avatar is that I've had a picture of a USMC Honor Guard Bugler which I decided to display as my avatar until my father was finally laid to rest. Well, yesterday that finally happened. Dad died March the 30th, and we had a memorial ceremony for him shortly thereafter, but we had to wait a couple of months for the actual funeral because of all the planning and scheduling involved. It was a military funeral with full honors conducted by United States Marine Corps Honor Guard. The service was at the Veterans Memorial Park in the state capitol of Augusta. It was a beautiful ceremony, in a beautiful place.

I decided that my new avatar would be a sunrise from my favorite place that I go to when I need some peace, and renewed hope.

Rob

debbie-b
07-07-2012, 04:10 PM
No, that picture was taken by a local photographer I know, not me. The picture was taken at one of my favorite spots not far from my house. It's a scenic overlook with a perfect view of the North Atlantic and the Channel Islands off Acadia Natl. Park.

The significance of the new avatar is that I've had a picture of a USMC Honor Guard Bugler which I decided to display as my avatar until my father was finally laid to rest. Well, yesterday that finally happened. Dad died March the 30th, and we had a memorial ceremony for him shortly thereafter, but we had to wait a couple of months for the actual funeral because of all the planning and scheduling involved. It was a military funeral with full honors conducted by United States Marine Corps Honor Guard. The service was at the Veterans Memorial Park in the state capitol of Augusta. It was a beautiful ceremony, in a beautiful place.

I decided that my new avatar would be a sunrise from my favorite place that I go to when I need some peace, and renewed hope.

Rob

The sun rise is the beginning of a new day.

Debbie

jmail
07-08-2012, 07:07 AM
It's a beautiful shot Rob, and a very fitting choice for your avatar. I'm sorry I wasn't around to share in your dad's passing. I know you'll miss him. I'll miss him, and others of his "greatest generation". We're going to go visit my mom & dad the last week of July down in Southeast Missouri. My dad will be 86 this August 10. He's not anywhere near as resilient/robust as he was even just a couple years ago, but he's still kickin' and in good health. If you ask him about what he did when he turned 17 and joined the Navy, and why, you get the ole "it had to be done" response. When you think of the way things were in 1942/43, things were rather bleak and it looked like the Axis powers were having their way with the world. But the attitude of folks like my dad and yours, and their responses were of an optimistic, hopeful manner, "can-do". No defeatism about them. No complaining about how tough things were, only that they had to do it. If only I could be just a pinch like that, not only toward my medical situation, but life in general, ya know? I'm humbled everytime I think of them...

mountaindreamer
07-10-2012, 08:13 PM
sending hugs to my "brother of the sky"

LindaJ
07-10-2012, 09:42 PM
Hi German Shepherd,
I am doing plaquenil. I began it two and a half years ago. I had taken prednisone for 43 years before a new doctor decided that Plaquenil would be a good idea (long time steroid use is dangerous.....I didn't get ostioporosis but I did get plaque buildup in my arteries). No stomach problems with the plaquenil but in researching it, I found that can be a side effect that can be temporary. You should google the drug to find out all about it. Be sure that you have a good Opthamalogist that sees you two or three times a year. Plaquenil can affect your eyes. You should have a baseline picture of your retina and regularly take a field test. My eyes are ok so far, but I would like to get off of it since Ihave no Lupus symptoms for three years or more now. I take 200 mg daily by the way because I only weigh 105 lbs........I'm small boned!! Since I was in remission when I started, I felt no difference one way or another...didn't know there was a sweet spot to find! God's grace be with you!! Linda

rob
07-11-2012, 05:21 AM
It's a beautiful shot Rob, and a very fitting choice for your avatar. I'm sorry I wasn't around to share in your dad's passing. I know you'll miss him. I'll miss him, and others of his "greatest generation". We're going to go visit my mom & dad the last week of July down in Southeast Missouri. My dad will be 86 this August 10. He's not anywhere near as resilient/robust as he was even just a couple years ago, but he's still kickin' and in good health. If you ask him about what he did when he turned 17 and joined the Navy, and why, you get the ole "it had to be done" response. When you think of the way things were in 1942/43, things were rather bleak and it looked like the Axis powers were having their way with the world. But the attitude of folks like my dad and yours, and their responses were of an optimistic, hopeful manner, "can-do". No defeatism about them. No complaining about how tough things were, only that they had to do it. If only I could be just a pinch like that, not only toward my medical situation, but life in general, ya know? I'm humbled everytime I think of them...

My youngest sister is the admin at our local Veterans Home, and I go there once a week to just talk and hang out with the patients/residents there. Many of them have nobody to visit them, so they're always happy to have someone sit down with them and listen to their stories. There are fewer and fewer WWII Veterans there these days. The Greatest Generation is dwindling in numbers, and one day, these wonderful people will all be gone. They literally saved the world from the evil that was the axis powers. We owe them so much.

There is one fellow there who is suffering from dementia, and he thinks that the year is 1944. I'm a WWII history buff, so I sit down with him and talk with him like it really is 1944. He served in the Pacific with the USMC, joined up the day after Pearl Harbor. Talking to him is like getting into a time machine. Despite his confusion of what year it really is, his memory of what he did all those decades ago is crystal clear. Of course to him, it was just yesterday. He's really funny too. Much like my Dad, his health problems cannot extinguish his sense of humor.

In fact, the inscription on Dad's headstone is "He Left Us Laughing". Dad kept his sense of humor to the very end. He was 10 years old when the Pearl Harbor attack happened. He was bitterly disappointed that he was too young to join up. His desire to serve was so strong that he "fibbed" about his age and joined the National Guard when he was 15. He missed serving in WWII, but when he turned 17, he joined the USMC and served in Korea. Dad went on to become a Special Agent with the Treasury Dept. He always had that optimistic and hopeful manner you speak of, and I too wish I could be like that. Defeatism was a completely alien concept to him.

Anyway, forgive me for straying a bit from the original subject of the thread.

Rob

bunny28
07-11-2012, 10:54 AM
I have been on plaquinil only since February of last year. The effects build up over time. I have suffered from heartburn and acid reflux but I don't know if it is related to the drug or not. (200mg twice a day)

Almost two weeks ago, my doctor tried 15 mg of prednisone. I have what I consider mild symptoms compared to many here but was still tired all the time and felt like I was missing out on my life. (I also have headaches, sun reactions, and other symptoms). Anyway, since starting this, I feel like I have been given a gift. I am present in my life each day. (Now to learn not to overdo it though). I did want to say though that I have been having tummy troubles since starting the prednisone, so is it possible it is that and not the plaquenil upsetting your stomach.

jmail
07-11-2012, 06:21 PM
Thanks bunny28 & LindaJ. My energy level is improving, but better still is that I'm almost getting through a full night sleeping. I don't quite make it usually, but 4 nights out of whatever... what day is it anyway?... I've made it 4 nights. I even missed the alarm this morning. Wow!!! I'll take that. The prednisone sure is a nice "sweetener", ain't it bunny28?

Rob, I don't think it's ever off-topic for us to talk about the greatest generation, since "defeatism is an alien concept to them" applies here. My wife just got me a BBC documentary on "The Last Voices of the Great War", which is a DVD of Great Britain WWI vets reminiscing. Most of them were 100 or more years old when interviewed. I gotta do that with my dad for my kids' sake... Just videotape my dad talking about his life in general.

LindaJ
08-25-2012, 04:55 PM
Hi again! I am responding to the 'my face is puffy" from prednisone being bumped up. Hopefully you are down on a more manageable dosage since this post was July 6th, but in case this ever happens again, I found that keeping sodium low really helped me when I was on high dosages throughout my life ( 20-60).
When I first got Lupus and was put on 60mg, I also got the 'moon face' as they called it back then, and swelled up and increased skirt sizes! My doctor told me to watch sodium intake. I went even lower than he recommended.....@ 1,000 per day and never got the swelled up face or weight gain with any future flares. It's worth trying....tough if you are a cheese/canned soups/lunchmeat person though!

jmail
10-01-2012, 08:05 AM
Didn't want to resurrect too old of a thread, but what the hay...

I had to quit all meds, other than my synthroid, after a what was presumed by the medical experts to be a "hypersensitive allergic reaction of idiopathic nature" (or whatever they said). I've been back on plaquenil now for a week, and no signs of issues. Previously, I was starting to notice change at about the two week mark, and by the end of the 3rd week, I was sleeping through the night, and the joint inflammation was down, and my back felt much better ("actually, it's just a flesh wound!"). Then I had the rash and "flare" of almost unbelievable proportions. I'm not "feeling" any changes yet, and my hands and feet are still inflamed pretty bad.

My question this time though is: Who has what I term "weird dreams", and what my sister calls "hallucinations" on the plaquenil? I was having very livid, almost macabre dreams that would wake me up, and I would do a double-take upon waking, just to make certain of my surroundings. I haven't had the chance the talk much with my sister (she lives halfway across the country, and is still teaching school, for some strange reason), and find out more details from her about what she means by "hallucinations".

This time through, what I'm doing is taking my first 200 plaq as early as possible, like 6am, and I then take the 2nd 200 at about 2pm, and I've not had one weird dream yet (knock on wood). Anyone do similar with the dreams, and do they stop (like the gas did for me) after a few weeks? Thanks.

SleepyInSeattle
10-01-2012, 12:54 PM
yes, YES, YES - I TOTALLY had this side effect!!!!!!! OMG, I had one dream that I feel like I practically need therapy for - it was SO vivid and different from any other dreams I have EVER had. I had lots of very weird, intense dreams, but only the one that was HORRIBLE. I literally can't even tell anybody about it because just thinking about it in detail scares the h#ll out of me.

I have been on the Plaq now for about a year, and haven't really had the dream issues since the first couple of months....they really did die down for me. OCCASIONALLY, if I don't eat much dinner and then forget to take my meds until right before bed, I will have a little bit of it again - but NOTHING like those first couple of months.

I also had some gas and stomach upset for a while - but now I am really used to it all, and honestly - I think I could probably take the stuff on an empty stomach and be fine. I take it all at once (400mg), at bedtime, and again - almost NEVER any sleep disturbances anymore.

I always wondered about what is going on with it...Plaquenil is an anti-malarial, and of course one of the symptoms of malaria is wild dreams and hallucinations, so I wonder if there is some connection - I have no idea. From what I have read, they don't even really understand HOW or WHY Plaquenil helps with Lupus - they just know it does. Such a mystery....

But yeah - do what you're doing, stick with it, and the dreams SHOULD simmer down. Taking it early in the day is probably a good idea, at least for now.

steve.b
10-01-2012, 08:01 PM
i take 400mg, all at once at breakfast time.
i have abnormal dreams.......
but not as wierd as you are mentioning.

as sleepy said....
take your plaquenil with food helps relieve most of the symptoms of it.

n.mac
10-02-2012, 01:56 PM
Until starting meds I would rarely dream and when I did the memory was very fleeting-within a moment or two of waking I would begin to forget and only have a very vague,fuzzy image of my dreams.
About 2 years ago I went from taking no meds to many in a matter of 2 weeks. I take plaquenol,lisinopril,metformin and mycophenolate.(started w/imuran then mtx and now mycophenolate for past 2-3 months)

In the last 3-4 months I have started having dreams that I actually remember in great detail. In fact I can fall asleep for 20 min and wake up remembering a dream which seemed to last much longer.
Luckily all good dreams-some strange but no night mares.

jmail
10-03-2012, 02:48 PM
Oh, I've had a few nightmares that would make a horror movie director jealous, sleepy... lol - steve, when you say "I have abnormal dreams...", I think all dreams are weird anyway, since it's the ID (or whatever) that does the dream, and I do know that my dreams went from weird to strange when I was first getting sick, then they went to nothing, like Niall mentions, and now that I'm back on plaq, I'm dreaming again. Like I mentioned though, they're fine, so long as I take the plaq early enough, and have food in my tummy... now, I haven't had any pizza for several weeks, and we're eating some tonight... lolol... |;^)

SleepyInSeattle
10-03-2012, 03:35 PM
When I have bad dreams I always think of that line from "A Christmas Carol" where Scrooge is seeing one of the ghosts and he says (more or less...) "How do I know you're not a product of indigestion? You may be nothing but a bit of undigested beef!" LOL....

jmail
10-05-2012, 08:12 AM
lol !!!

btw, the pizza didn't sit so well on my stomach, and one of Scrooge's visitors visited me! The neuro guy today said "tomatoes"... hmmmm.... nightshade.

mystiejm
10-23-2012, 10:15 PM
I was on 200 mg of plaquenil once a day for almost 2 years. It took a while to work but helped reduce joint pain and other symptoms greatly. I stopped because I'm pregnant but hope to go back on it soon.