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View Full Version : GP says I may need to add something to my medications...



giggle
06-28-2011, 01:22 AM
My GP says that with everything going on, my lupus may just be more active than we thought. I fool people easily with the way I look healthy and alive... the only thing that would or could ever stop me would be death... otherwise I will just keep going and going and going almost blissfully unaware.

Anyway, because of that I tend to agree that it may be easy to overlook my active lupus because I am so seemingly unhindered by it. BUT it was still a shock to me, to hear her say 'we might just need to add another medication to your treatment.'

She said it very softly and carefully while watching me and giving me that "Im sorry" look that she does... knowing how against meds I am.

SO... my questions is... what are my options?? Lets say my lupus is just a touch too active and I need the plaquenil and something else... what could the something else be? I do not like the idea of steroids and I would love to have some suggestions to go to my 'health team' with.
Otherwise... I think I will decline the steroids no matter what.

steve.b
06-28-2011, 03:17 AM
i have found in australia, the other is usually methotrexate, or methoblastin.

tgal
06-28-2011, 03:31 AM
steroids are really the next step in the US. MTX usually isn't given unless 1) Steroids are not working except on high doses or 2) Steroids are not being tolerated by the patient. Low dose steroids are not bad it is when you have to get on higher doses that you have trouble. They actually say if you do them every other day instead of daily it makes a really big difference as well. I have never been in a place when I could skip them, even with the MTX but those are most likely the next options

lovedbyHim
06-28-2011, 04:08 AM
Steroids truly did help and fortunately still do. I am always on 5 mg. I tried to go off and always a major organ gets hit. My rheumy wants me to stay on. When things get crazy she bumps it up and I slowly back off.

There is fallout I must say, but what is my alternative? Metheltrexate(spelling?) Is on the table presently.

I hope you can figure out the best choice for you dear. Good luck. Tammy

Nat
06-28-2011, 04:33 AM
Hi giggle
When I was first diagnosed I was started on the plaquenil. Methotrexate isn't usually given unless they find out that the steroids aren't doing as well as they are meant to. I was on 50mg of pred when i had my first flare, that did nothing so they put me on methotrexate too. I was in the same mind about steroids, definitely not wanting to be on them because of the side effects and I cut mine down too quickly and ended up back in hospital with another serious flare. At that time my disease activity was through the roof. My rheumy started me back on pred and im currently in the process (since March) of cutting down but every time i get to 10mg i get quite sore again. The positive side of the steroids though is that now my disease activity is lower than its ever been. As much as you might not want to go on the steroids, sometimes its the only thing that can work, and to be honest with you, i'd rather be on pred than methotrexate!
anyway all the best with whatever new one they start you on!

giggle
06-28-2011, 05:37 AM
thank you guys : ) it really hadnt occurred to me that I would be on a fairly insignificant dose : ) thats why you are here, to remind me Im a doofus : D

Love yas!

Gizmo
06-28-2011, 06:16 AM
My standard dose is 5mg also, and the only "side effect" I notice with that is increased energy and decreased pain. Those are side effects I can live with LOL. I don't even gain weight at that dose, because I am more active.

If you do go on an immunossuppressant, like methotrexate or Imuran, you also may not have any side effects - especially since you seem to have a very high tolerance for discomfort. My daughter gives herself methotrexate injections and has no ill effects what-so-ever. I've had the same experience with Imuran. Neither of us can imagine having to go off of them now.

missfearless
06-28-2011, 07:15 AM
I'm on 35mg of pred and 100mg of plaquenil and 1000mg of cellcept. =/ My SLE is under control but I've weight gain and my joints keep cracking (due to the pred I think).

rob
06-28-2011, 07:38 AM
I've been on 400mg of Plaquenil for many years now, and I have no negative side effects from it at all. I take 200mg in the morning, and 200 at night. It really keeps my Lupus flares from becoming unbearably bad. Just to be safe, I still see an opthamologist every few months to check for retina damage, but there has never been any. For most people, plaq is the easiest to tolerate. It takes time to work though. You have to start it and stay on it.

I've also found the short term steroid taper packs to be very effective in the short term without the bad side effects of long term steroid use. It's just my opinion, but I think too many people make too big of a deal over some of the meds we have available to us. Yes, some of our meds do have serious side effects, but not all of them. The two I mentioned are really pretty tame, and they do indeed work well for most people.

Rob

Peridot20_Gem
06-28-2011, 08:13 AM
Giggle,

I hope you decide what's best for you but i'm sticking with the plaquenil if it carries on ok as it is so far just by changing the time of taking it but otherwise concerning steriods for Lupus i've heard they do help alot a great deal and like other member's have said it's the amount of dosage you'll be taking but myself in general i won't go on them i've refused through having steriods years ago.

Terry xxx

ritzbit
06-28-2011, 10:25 AM
When I start flaring bad I get put on steriods and cellcept. then I cut back on the steriods and stay on the cellcept.

giggle
06-28-2011, 03:28 PM
Hey guys, the doc has no intention of taking me off the plaquenil... I balance between 400mg and 600mg dose. I change my dose myself, based on how I feel. I am not sure how others do it, but that is what was recommended by my original rheumy and I have come up against no resistance to it from any doctor... so it must be a common thing to be in charge of your own dose on plaquenil?

I use 600mg when it looks like I am in a flare and 400mg for maintenance. I tried to drop to 200mg and found that I would go into a flare within a week or two, I may as well have gone right off it. The plaquenil has been good to me, but the docs think I might just need a bit extra something... I expect it will be small dose of steroid. You've made me feel a bit better about the steroids though... thanks guys : ) I guess I will have to wait until July to find out what they recommend.

rob
06-28-2011, 03:52 PM
Hey guys, the doc has no intention of taking me off the plaquenil... I balance between 400mg and 600mg dose. I change my dose myself, based on how I feel. I am not sure how others do it, but that is what was recommended by my original rheumy and I have come up against no resistance to it from any doctor... so it must be a common thing to be in charge of your own dose on plaquenil?

In my experience, self regulating your plaquenil dose is something I've never heard of. I'm 6'1" and 200lbs, and my various Dr.'s and specialists all agree that 400mg per day is the maximum dose they would put me on, flare, or not, for someone my size and build. And plaq, being a long term medication, isn't likely to be something that you would take a little more of or a little less of depending upon how you feel.

I'm not saying your Doc is wrong, I just have never heard of this before. Perhaps treatment standards and such in Australia are different than ours here in the US.

I wonder if any of our other members have been self regulating their plaquenil dose.

Anybody else ever try this?

Peridot20_Gem
06-28-2011, 04:45 PM
Rob,

What i've read it looks like different country's work with meds in different ways and i do know that here in the UK if your told a dosage to take that's what you do and letters are sent to your GP confirming it and they give you the correct amount for the month.

I know i can't try it because of what i've just stated and when on other meds you need to be careful in what your doing.

steve.b
06-28-2011, 06:43 PM
i too am on 400 plaquenil.
my rhuemy has said any more is rare.
this is his maximum reccommended dosage

ritzbit
06-28-2011, 07:09 PM
I've never heard of taking more than 400mg as well.

Gizmo
06-28-2011, 07:17 PM
I've never been on more than 400mg. My doc also said that is the max. Since I'm starting to have vision issues (after 12 years) and had to drop my dose to 200mg, I would be reluctant to go over 400mg. As Rob said, plaquinil is something that you take for the long haul. Prednisone and immunosuppressants are the drugs usually used for flares - at least in the US

giggle
06-28-2011, 10:53 PM
Yeah I thought it was weird to be self regulating. But its what my old rheumy told me to do and not a doctor since has questioned it. But I have never been on anything but plaquenil and no one has ever suggested anything else... but then again I have taken care of myself all this time, I hadn't seen a health care professional in five or so years. Any GPs I saw didn't give a hoot. And the rheumy never once listened to anything I had to say. He was like a robot lol

No one has ever mentioned a maximum dose rate, in fact many times I have been told this is the best medication to be on and I am better off on a higher dose of plaquenil than any other medication I could be on. Australian doctors arent known for their brilliance. : / Lets hope this new rheumy I have been referred to is decent!!

giggle
06-28-2011, 10:56 PM
btw Im not a small girl, Im 5ft 9inches tall and while Im a size 10-12, Im built like an amazon. Im 76kgs. Im about the weight of your average sized guy and about the same height too.

tgal
06-28-2011, 11:39 PM
From everything that I have read and learned 400 mg is the top dose used for Lupus. Higher doses are used for malaria and it is those doses that actually have a higher incidence of eye issues. I agree with everyone else that you might want to check into that

Peridot20_Gem
06-29-2011, 07:28 AM
btw Im not a small girl, Im 5ft 9inches tall and while Im a size 10-12, Im built like an amazon. Im 76kgs. Im about the weight of your average sized guy and about the same height too.
Giggle i'm laughing at this mate, as if your like me your tall but small framed i'm 5ft 8" tall, size 10 and weigh in at 65kg.

ritzbit
06-29-2011, 09:01 AM
btw Im not a small girl, Im 5ft 9inches tall and while Im a size 10-12, Im built like an amazon. Im 76kgs. Im about the weight of your average sized guy and about the same height too.

Jealous....lol I hate being small =(

Peridot20_Gem
06-30-2011, 05:20 AM
Ritz,

I wish i was'nt so tall mate and smaller at least you ah got a struggle with jeans and trouser legs...i have to hunt the shops to get a 34"leg as it's mainly 32's here.

CanadianGal
06-30-2011, 07:56 PM
Hi,

I was on 400mg of plaquenil for over a year and it did nothing for me. After trying many other drugs that also did nothing, my Rheumy started me on an extremely high dose of Methylprednisolone and Azathioprine. It's a new way to take it though. She said it's "pulsing the dose". I go to the chemo unit of our local hospital and the methylprednisolone is given intravenously. The treatment takes just over an hour. It's a six month plan--for the first three months, I go three days (in a row) a month, for the last three months, I go one day a month. I just finished the second month (or sixth treatment). It definitely has been working. Before I started this treatment I was taking 1000mg (yes that is three zeros) of Advil every two hours. And when it got really bad, I would add in naproxen, T3's and anything else that was in the house. It was ridiculous, I was eating pain killers like smarties! Since starting the treatment, I haven't taken a single pain killer. My lupus pain is very low right now but the side effects of the steriod is hard. It can make me really nauseous and of course the weight gain really sucks. At least I haven't gone crazy yet, knock on wood (this is me knocking on my head--ha ha). I'm hoping that I can withstand the rest of the treatments and that it does what my Rheumy wants--shocking my lupus into remission. As it stands so far, it's looking good. Keeping my fingers crossed.

CanadianGal
06-30-2011, 07:58 PM
Oops, forgot to add that I take the Azathioprine in pill form every day.

giggle
06-30-2011, 09:18 PM
Lol I know what you mean terry!! I cant find pants that go down to my ankles... I feel like an elderly lady with my hem well above my ankle. Its supposed to cover the top of your shoe. My daughter is the same... only much much worse because she is skinny. She is in size three pants, but she is six and on the taller side... so normal pants only go half way down her calf : (

But yeah, I wouldnt call myself small frame... Im all arms and legs and boobs!! LOL! Seriously... I would give anything to be small!!

Canadiangirl... plaquenil definitely takes the edge off if I have over 200mg... but it certainly doesnt significantly improve my quality of life. Its REALLY hard for me to predict or convey exactly how sick I am... because I dont feel like I am as sick as some other people look LOL It wouldnt be until an organ started failing that I would know and I would likely be near death for it to make me notice. I certainly never get regular testing to make sure I am not terribly ill. Even when I was in ICU, it was impossible for me to think of myself as sick, let alone dying! Im just going to have to admit to myself and demand that I am regularly monitored.

Mari... I was told the normal dose for malaria is actually significantly less. They apparently normally take one tablet a week. But the same doctors saw nothing wrong with me taking 400mg of plaquenil either so who knows lol : )

giggle
06-30-2011, 09:32 PM
I decided to look up plaquenil dosing information...

"Plaquenil Dosing for Lupus
For treating lupus in adults, the recommended starting Plaquenil dosage is 400 mg once or twice a day. After a while, your healthcare provider may recommend a lower dosage (such as 200 mg once daily). The higher the long-term dosage, the more likely that serious Plaquenil side effects (especially eye damage) may occur.

Plaquenil Dosing for Rheumatoid Arthritis
The recommended starting Plaquenil dose for rheumatoid arthritis treatment is 400 to 600 mg daily. In some people, the starting dose may need to be temporarily reduced (for a week or so) if bothersome side effects occur. After a good response is obtained (usually four to six weeks), your healthcare provider will recommend that your dose be reduced to 200 to 400 mg daily. The higher the long-term dosage, the more likely that serious side effects (especially eye damage) may occur."

Another site

"Lupus erythematosus

The adult starting dose is 400 milligrams one to two times daily, for several weeks or months, depending on the reaction. This may be reduced to 200 from 400 milligrams per day for maintenance. With systemic lupus, it is especially useful in relieving skin inflammation, hair loss, oral sores, fatigue and joint pain as well as preventing relapse.

Rheumatoid arthritis

The adult starting dose is 400 to 600 milligrams per day with food or milk; with improvement (between four to twelve weeks) the maintenance dose is 200 to 400 milligrams daily. Hydroxychloroquine has not been proven safe for the treatment of juvenile arthritis."

And ironically... a related thread from 2008 from this forum http://forum.wehavelupus.com/showthread.php?5019-Plaquenil-Dosage...

: )

Strangely... my rheumy didn't put me on a high starting dose either. He suggested I take a lower dose and increase it if need be. I am on 400mg for maintenance.

Peridot20_Gem
07-03-2011, 09:19 AM
Hi,

I was on 400mg of plaquenil for over a year and it did nothing for me. After trying many other drugs that also did nothing, my Rheumy started me on an extremely high dose of Methylprednisolone and Azathioprine. It's a new way to take it though. She said it's "pulsing the dose". I go to the chemo unit of our local hospital and the methylprednisolone is given intravenously. The treatment takes just over an hour. It's a six month plan--for the first three months, I go three days (in a row) a month, for the last three months, I go one day a month. I just finished the second month (or sixth treatment). It definitely has been working. Before I started this treatment I was taking 1000mg (yes that is three zeros) of Advil every two hours. And when it got really bad, I would add in naproxen, T3's and anything else that was in the house. It was ridiculous, I was eating pain killers like smarties! Since starting the treatment, I haven't taken a single pain killer. My lupus pain is very low right now but the side effects of the steriod is hard. It can make me really nauseous and of course the weight gain really sucks. At least I haven't gone crazy yet, knock on wood (this is me knocking on my head--ha ha). I'm hoping that I can withstand the rest of the treatments and that it does what my Rheumy wants--shocking my lupus into remission. As it stands so far, it's looking good. Keeping my fingers crossed.I really hope all this works for you, i'm on plaquenil also and take 200mg daily, i can't go no higher with the drug because of my other meds i take but i really hope it put the Lupus into remission for you at least.

Terry xxx