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Sjogrens Topics => Living With Sjogren's => Topic started by: Chrisb on December 20, 2012, 08:15:26 PM

Title: Why do some members choose not to take plaque nil?
Post by: Chrisb on December 20, 2012, 08:15:26 PM
Hi All,
I was reading through old posts and noticed that a lot of members are not taking  plaquenil.  Is this by choice or was it because of the side effects?

Thanks so much,
Christian
Title: Re: Why do some members choose not to take plaque nil?
Post by: eyeamdry on December 20, 2012, 09:41:02 PM
Christian, I think you'll find more that are taking Plaquenil that don't want to/can't take it.  Of course, it's not for everybody.  When I came on here 6 years ago sicker than a dog, if I had read all the negatives of Plaq and Methotrexate, I probably would have hesitated.  Still many hesitate, but if it helps you great.  If it makes you feel not so good, you can just stop it.  Good luck.
Lucy
Title: Re: Why do some members choose not to take plaque nil?
Post by: stillinshockwithsjogrens on December 21, 2012, 01:59:05 AM
I do not take Plaquenil.  My primary symptoms are dry eye, mouth, eustachian tube dysfunction, loss of sense of smell/taste and some joint pain.  My Rheumy did not recommend Plaquenil because he said he didn't see swollen parotid glands and felt I wasn't at a point where I needed anything other than Evoxac and Aleve.  I am really dry though, but he said that Plaquenil wouldn't help the dryness.  I don't suffer from tiredness/exhaustion; I  have alot of energy; so I guess I am not a candidate for it....and from a completely vain point of view, I do not want to lose any more hair than I have already! :(
Title: Re: Why do some members choose not to take plaque nil?
Post by: Saundra on December 21, 2012, 03:33:58 AM
Hey Christian

Mine had me on it, after my appt this week he took me off.  He was terribly disappointed even said so.  He did say that if I wanted to retry before my next visit to go half the doasge.  When I do try it will be the 3rd try.  Me personally the nightmares, the total bitch I had turned into were unacceptable for now.  The nightmares stopped immediately and I'm not so mean now.

I'll probably retry after the holidays though.  I'm one of those people who a drug either hates or loves. 

XOXO
Ldy
Title: Re: Why do some members choose not to take plaque nil?
Post by: LisaMarie on December 21, 2012, 05:31:42 AM
I have been taking plaquenil for a year now.  I believe it is doing wonders for me and would not want to stop taking it at this point.  My rheumy has me taking it before bed so that I wouldn't notice some of the early side effects as much because I would sleep through them (the stomach issues).  Dryness is really still an issue but I believe it has helped with the general bone pain I was suffering, the brain fog/memory, and some other symptoms. 
Title: Re: Why do some members choose not to take plaque nil?
Post by: Iris on December 21, 2012, 06:27:16 AM
I would still be taking it if I hadn't been allergic to it.. The short time I was on it I could tell it was already helping my joint pain.
Title: Re: Why do some members choose not to take plaque nil?
Post by: SjoDry on December 21, 2012, 07:04:42 AM
I think it's a quality of life issue.  No one wants to take heavy duty meds if they don't have to.

Some can't tolerate the meds or just choose to try to tolerate & live with the medical symptoms. Others of us, like myself,
decide that the daily suffering we are facing can't be much worse than any medication side effects. I did my due
diligence like everyone here & decided that Plaquenil was a "crap" shoot. The minimal side effects & great improvement
in my pain level, have made me a believer in Plaquenil (just started November 1st). At the end of the day, it's individual choice.

Good Luck.
SjoDry
Title: Re: Why do some members choose not to take plaque nil?
Post by: rnathans on December 21, 2012, 09:21:38 AM
I was taking it for quite a while with no side effects. But when I developed gastroparesis and neuro symptoms I was put on stronger immunosuppresants instead. They work better for me as far as slowing down the progression of these problems.
Title: Re: Why do some members choose not to take plaque nil?
Post by: slccom on December 21, 2012, 11:44:25 AM
I've been taking it for a long time, too, and have never had any issues at all with it. Please, take your meds with a positive attitude, do not look up "side effects," some of which are actually not due to the medication. The way the FDA does things, anything at all reported by someone has to be listed. So, if someone gets a broken bone while taking XXX, the fact that they had undiagnosed pre-existing osteoporosis doesn't factor in, so the broken bone gets listed as a "side effect." DO look up "nocebo effect" to see how it is documented that people can develop "side effects" if they are told that the placebo pill has them.

That said, there are people who genuinely cannot take meds for whatever reason. There is a small population missing a particular enzyme in their liver which makes many meds dicey for them. You can be taking something with optimism, as I did with a particular anti-inflammatory and still break out in hives. But you need to not let yourself be scared off of medications that can keep you from getting worse. Keep in mind that Sjogren's can affect the internal organs as well, so preventing progression is important.
Sharon

Title: Re: Why do some members choose not to take plaque nil?
Post by: olmphoto2 on December 21, 2012, 11:54:03 AM
You made some excellent points, Sharon!
Title: Re: Why do some members choose not to take plaque nil?
Post by: Friedbrain on December 21, 2012, 12:16:26 PM
Well, I was only on it for three weeks but during those three weeks, I did experience a reduction in some of my symptoms (aches etc).  My young doc's attitude (for right or wrong...) was to try it and see what/if it helped....!  I was desperate enough by that point in Oct to finally go along with that logic.  However, I started experiencing a trunk rash, probable allergic reaction (I had a similar allergic reaction to another drug once before-lamictal), so had to stop.  To say I'm disappointed is an understatement.   
Title: Re: Why do some members choose not to take plaque nil?
Post by: Calli66 on December 21, 2012, 02:48:22 PM
I quit after 2 years because of intestinal upset---horrible sensitivity to lots of foods, esp. fruit---bloating, etc.---I felt like I couldn't eat anything without upset, no matter how much I tried to modify my diet.  And also I had nightmares and disturbed sleep. So the "cons" were worse than the "pros." I can't tell you if there WERE any "pros." But I don't have the severe joint pain or fatigue that some people have---Plaquenil seems to help those symptoms. I mainly have low platelets, WBC, dry eyes, and somewhat dry mouth, and Plaquenil didn't improve those things.

Calli
Title: Re: Why do some members choose not to take plaque nil?
Post by: MaryBee7 on December 21, 2012, 04:58:45 PM
I've been on Plaquenil since May of this year.  Lucky to have some of you post about the nightmare issue because I had no idea what had been causing my strange dreaming, must say I've been tempted to stop taking it since I have such horrible sleep issues already.  Plaquenil has helped my joint pain, no improvement in energy level really, and I appear to have some other pieces of this syndrome that are progressing. 
Title: Re: Why do some members choose not to take plaque nil?
Post by: eyeamdry on December 21, 2012, 07:15:35 PM
It has done nothing for my dryness issues though.  Wanted to add that.  Lucy
Title: Re: Why do some members choose not to take plaque nil?
Post by: Chrisb on December 21, 2012, 08:09:59 PM
Thanks so much everyone.  This is why I'm so nervous about taking the drug.  I have no joint pain yet and I'm tired but not unusually.  I've always been tired.  I thought maybe from the anemia?  Anyhow, I'm wondering if it's worth me being sensitive to the sun, losing more hair and then the bleaching of the skin since I already have vitiligo. What to do.... what to do.........

Does it really slow down the progression of the disease? That's the magic question.  So frustrating not knowing what will happen.
Title: Re: Why do some members choose not to take plaque nil?
Post by: Calli66 on December 21, 2012, 10:37:45 PM
I don't think there's a clear answer as to whether plaquenil "slows down" SjS. I've heard both yes and no from rheumatologists.

I think if you try it, and it helps you feel better, then you will eat better, get more exercise, and probably be healthier. The docs always told me that it's the least harmful of any of the drugs you can use, and a good place to start.

Being on it 2 years gave me plenty of time to observe my health and think about all my symptoms. As I stabilized my dry eyes and adjusted my attitude, I felt calmer and more confident about my own decisions. During that 2 years, I also stabilized my vitamin D, which had been very low, and I started taking fish oil. I think these 2 things helped. I felt much better after I quit.

But if my symptoms increase---especially if my muscle and joint pain gets consistently worse, then I am willing to try it again---I'm not totally against it.

Calli
Title: Re: Why do some members choose not to take plaque nil?
Post by: Saundra on December 22, 2012, 03:50:35 AM
Same here, I'm not opposed to retrying it in the future.  I've read to many positive things to completely shut it out.  Right now with the holidays here the nightmares causing me to loose sleep were becoming a huge issue.  I need my sleep.  I usually get up a couple of times during the night to go potty so nightmares waking me was to much.  It did cause foods to taste weird, and they bitchyness may of been from lack of sleep.  It also made my anxiety level real high,

All that and a few more I will probably retry in the future.  For me stopping worked, later taking may be more important than loosing some sleep.  Who knows may not even happen in the future.

Your the best judge, if you need it go for it. 

XOXO
Ldy
Title: Re: Why do some members choose not to take plaque nil?
Post by: jazzlover on December 22, 2012, 02:08:57 PM
Hurts my stomach too much.
Title: Re: Why do some members choose not to take plaque nil?
Post by: warmwaters on December 22, 2012, 08:32:43 PM
I took it for two years, with modest side effects (occasional stomach issues).  My rheumy asked if I felt that it was helping, and I said no. So we did the experiment of coming off for 6 months, and I don't feel any different in terms of energy.  So for me there seems to little or no benefit.

Title: Re: Why do some members choose not to take plaque nil?
Post by: Lesley_x on December 23, 2012, 12:22:50 AM
I'm not on it as docs think I had quite a severe reaction to it.

I was on it for a year. I recently tried it again and it elicited the same reaction so I am off it for good.

I would love to be able to take it.
Title: Re: Why do some members choose not to take plaque nil?
Post by: aussie mum on December 23, 2012, 11:35:22 AM
My daughter can't tolerate Plaquenil - too many stomach issues. She was on Prednisone for a short time and had horrible headaches and disturbing nightmares. Her Dr then tried a Sulfa medication (don't remember the name) but she turned out to be allergic to that. He has mentioned MTX but with her past reaction to medications, she is not too keen to try anything new.

She is only on medication for her Thyroid & insulin resistance, nothing at all for her SJS/Lupus.


Title: Re: Why do some members choose not to take plaque nil?
Post by: Joe S. on December 23, 2012, 12:07:07 PM
Ihad one dose and went blind for 6 hours. I had to find an laternative.
Title: Re: Why do some members choose not to take plaque nil?
Post by: mebog on December 23, 2012, 02:14:27 PM
 
I was on it. for about ten years when my eye Doc said it was giving me Macula degeneration.
I haven't taken it in about six years but I take prednosone and Cellcept.

Mebog
Title: Re: Why do some members choose not to take plaque nil?
Post by: gold55 on December 23, 2012, 07:21:28 PM
Mebog,
How are your eyes since being off plaquinel?  Have they stabalized ...... are they better?
Title: Re: Why do some members choose not to take plaque nil?
Post by: Joe S. on December 23, 2012, 08:32:07 PM
I believe so. I am waiting on my next visit.
Title: Re: Why do some members choose not to take plaque nil?
Post by: MaryBee7 on December 24, 2012, 03:40:30 AM
Was rereading these posts...and thinking...you know, when you are so sick and desperate for relief/recognition that THIS IS A REAL ILLNESS/h-e-l-p !!    we then hope that there are Magic Pills.  I thought that about Plaquenil...but also realized this morning while reading comments here again that...my brain is so fogged out I probably would have eaten 10 pounds of jelly beans if a doctor would have said THIS WILL MAKE YOU WELL. 

Also, with feeling that no one has believed me for so long, I've kept telling myself that it's ME, it's my brain that isn't letting Plaquenil work.  If I am able to remove myself FROM myself and stand back and think about it...I have to know that there are no Magic Pills and there are limits to what meds can do.  I don't know if Plaquenil stops progression, was under the impression that it decreases some of the symptoms...which is not the same as halting progression.  I'll stay on it, but with the realistic view that it is only one of the weapons doctors have to battle Sjogren's. 
Title: Re: Why do some members choose not to take plaque nil?
Post by: Jenny on December 24, 2012, 04:27:10 AM
I tried to go off of it a few months ago as I wasn't sure it was helping. Within days my joints were killing me, especially my fingers and shoulders. I started taking it again and I felt a night and day difference in less than a week. I'm sold!
Title: Re: Why do some members choose not to take plaque nil?
Post by: cargillwitch on December 24, 2012, 07:14:42 AM
all the research on plaquenil's use for primary sjogrens just shows anecdotal relief of  joint pain and fatigue for some patients. This is not to be confused with a " slowing of progression" of the actual damage being done to exocrine glands or underlying immune system dysfunction.It has not show any statistical relief of dryness.

I think many of you have eluded to how powerless care givers must feel when dealing with our complaints- there is so little really understood about this disease and even less pharmocologically to offer.

 I think Plaquenil is suggested as a way of helping some  find symptom relief from it.As  you can read here ( and the studies bear out) having symptom relief from Sjogrens doesn't mean that it has gone away.

It is probably a good idea to keep this in mind when making the decision to try it or not. If your major symptoms are joint pain and fatigue - you may find some relief- but not a cure or slowing of the actual exocrine disease process.

And as with any medication there are side effects. Being realistic from the beginning can help I think
Title: Re: Why do some members choose not to take plaque nil?
Post by: Tivia on December 24, 2012, 07:34:41 AM
all the research on plaquenil's use for primary sjogrens just shows anecdotal relief of  joint pain and fatigue for some patients. This is not to be confused with a " slowing of progression" of the actual damage being done to exocrine glands or underlying immune system dysfunction.It has not show any statistical relief of dryness.

I think many of you have eluded to how powerless care givers must feel when dealing with our complaints- there is so little really understood about this disease and even less pharmocologically to offer.

 I think Plaquenil is suggested as a way of helping some  find symptom relief from it.As  you can read here ( and the studies bear out) having symptom relief from Sjogrens doesn't mean that it has gone away.

It is probably a good idea to keep this in mind when making the decision to try it or not. If your major symptoms are joint pain and fatigue - you may find some relief- but not a cure or slowing of the actual exocrine disease process.

And as with any medication there are side effects. Being realistic from the beginning can help I think


Then why not put people on the drugs that actually slow the progress? I hope people realize that you dont see the damage going on inside your body till its too late. Why not halt it early, if this was cancer they would not take wait and see approach. They would get in there and hit it hard to knock it down. I think the same should be for these AI's hit it hard knock it down and keep it down with a small maintenance course. But no they wait till the damage is so far gone ,then they stabilize people in a disabled state. It needs to be treated aggressively imo, you may feel ok now, but the disease is inside you choosing targets.

On the subject of treatment even if people only have minor symptoms at the time. There seems to be a section of people that fall into the worst case scenario group, these people need to be treated aggressively.   http://www.sciencedaily.com/releases/2010/06/100619095928.htm

How many of us fall into that category, I know I do.   
Title: Re: Why do some members choose not to take plaque nil?
Post by: Tivia on December 24, 2012, 08:45:52 AM
Another thing to consider how many of us are routinely screened for organ damage? You know you cant see it till its too late. No one did any test on me for these things, they even recommend a baseline chest xray so they can compare later on down the road. I dont like that you have to push doctors into doing something that should be routine. This all goes back to the point the patient has to become the doctor and study all this stuff in order to present to a doctor that should already know/be doing these things. Its frustrating I have seen patients that that have more medical knowledge than their doctors, how terrible.

?The important thing to realize with Sj?gren?s syndrome is that it can affect the entire body and can overlap with other autoimmune conditions,? Dr. Meador explained. ?So make sure that the organs are monitored for involvement. If you wait for symptoms to arise, the patient could already have significant [organ] damage.?  http://www.acpinternist.org/archives/2009/03/sjogrens.htm
Title: Re: Why do some members choose not to take plaque nil?
Post by: cargillwitch on December 24, 2012, 07:59:06 PM
I do in a way understand why many doctors are reluctant to use the heavy artillery. All these therapies come with some horrendous side effects included significant reduction in life expectancy- a huge jump in cancer risk being just one of many.

My mother was in stage four liver failure before her AI issues were taken seriously- I do so know the risk of not pressing to have your liver function, cardio/pulmonary exam and other CNS exams. But  I also know why there is reluctance to routinely prescribe medications or treatments to every patient when many primary sjogrens people will not develop issues that warrant this kind of risk.
My frustration is that we only have  neutron bombs when what we need are precise hammers.

Research; I am not frustrated with doctors, it's with the speed of research.Doctors only puppet what the researchers say.
Title: Re: Why do some members choose not to take plaque nil?
Post by: Tivia on December 25, 2012, 10:17:15 AM
Cargill I agree about the research part, but doctors can be bad also. Oh and get this because of the fiscal cliff fiasco they are saying that some medical research is going to be cut!! One of the researchers interviewed about it who is on the chopping block was a RA/AI reasercher. I am thinking what the heck is wrong with them, you dont cut medical research..cut crap like military spending for stupid stuff, cut out the kickbacks to corporations like oil etc. Health and medical research needs to function there is too much suffering out there from incurable illness.
Title: Re: Why do some members choose not to take plaque nil?
Post by: cargillwitch on December 26, 2012, 07:06:46 AM
Yes ,I feel very badly for those of you  from the United States.

 Having to pay for insurance and all the rules surrounding what and whom you can see must add another stressful element to this disease we don't have to deal with  :(
Title: Re: Why do some members choose not to take plaque nil?
Post by: katyjo on December 26, 2012, 12:22:49 PM
I chose not to take plaquenil because I just wasn't ready to take medication long term.  I decided to take care of my health by eating properly and losing weight first.  It really helps to eat well.   I'll reconsider medication later.
Title: Re: Why do some members choose not to take plaque nil?
Post by: Tivia on December 26, 2012, 12:34:10 PM
I chose not to take plaquenil because I just wasn't ready to take medication long term.  I decided to take care of my health by eating properly and losing weight first.  It really helps to eat well.   I'll reconsider medication later.

Can I ask you, how does your sjs manifest? Is it mainly sicca or do you have joint and organ/neuro involvement. I am just curious at what levels people can handle self treatment. I know there are days I would sacrifice bunnies to feel better, and other days I am almost..not quite but almost my old self. Plaquenil scares me, but so does the thought of the disease running rampant   
Title: Re: Why do some members choose not to take plaque nil?
Post by: teresa on December 26, 2012, 04:17:34 PM
I have taken Plaquenil for 8 years.  However, I only take it once a day.  Taking it twice a day gave me ringing in my ears- both times I tried it.  I can't tell that it does anything for me, but my rheumatologist won't let me stop taking it.  I actually take the generic form. 
Title: Re: Why do some members choose not to take plaque nil?
Post by: katyjo on December 27, 2012, 06:31:15 PM
Tivia,
I am almost 50 and I've had back and neck pain for the last 20 years.  When I turned 40, knee and hip pain started.  In the last three years I developed dry eyes.  I do experience numbness in fingers and toes.  All along I would experience some unusual symtoms that I couldn't put my finger on.  I felt I needed to detox, have a pure unprocessed diet, lose my belly.  I'm almost a vegan.  I'm not any drier than 3 years ago.   
Title: Re: Why do some members choose not to take plaque nil?
Post by: MaryBee7 on December 27, 2012, 07:06:56 PM
Can I ask you, how does your sjs manifest? Is it mainly sicca or do you have joint and organ/neuro involvement. I am just curious at what levels people can handle self treatment. I know there are days I would sacrifice bunnies to feel better, and other days I am almost..not quite but almost my old self. Plaquenil scares me, but so does the thought of the disease running rampant
[/quote]

Tivia, from the start in 2006 I presented backwards.  Nausea from heck, abdominal issues, fatigue, chills, fever.  Then developed slight neuropathy in legs which progressed to Pain.  Weight loss was next (3 rounds).  Finally this past spring I developed blepharitis and got a positive diagnosis.  Now the dryness is progressing quickly.  Throat is parched all the time and I can't talk for more than a few minutes without a coughing fit erupting.  Have one arm/hand that stays numb for, say, half a day at a time. Hips/knees ache, sometimes feet....though I have no visible swelling.  I am taking Plaquenil but don't know if I believe in it, the disturbing dreams it causes really wreck me as I have severe night sweats to deal with already every night.  Would take up drinking again to forget my troubles but alcohol makes me wayyy sick now    :o
Title: Re: Why do some members choose not to take plaque nil?
Post by: Sleepy In Seattle on December 27, 2012, 07:11:55 PM
Regarding life expectancy - my Rheum said they just completed a long-term, huge study that shows that people with A-I diseases on Mtx (as well as other steroid-sparing agents) actually live LONGER than those not on the drugs - they have less heart disease and many kinds of cancers than the general population, as well as their diseases being controlled. They think it has to do with the fact that those drugs reduce systemic inflammation that can CAUSE heart disease and those kinds of cancers.

I know that many of the drugs can have other bad side effects and different people react differently, but apparently OVERALL, the drugs do NOT shorten life.
Title: Re: Why do some members choose not to take plaque nil?
Post by: Joe S. on December 28, 2012, 03:48:16 AM
I could never Live in Seattle or on the west coast. On the 26th at about 8pm I lost all sense of direction and became a basket case until 10:30pm when a 3.6 quake hit and I passed out.

Life Extension magazine often tells of the benefits of various drugs and supplements and how they work to enhance and prolong life. They usually site pages of reports and studies.
Title: Re: Why do some members choose not to take plaque nil?
Post by: Sleepy In Seattle on December 28, 2012, 08:23:17 AM
Joe I am sorry you have that awful experience - but man, you'd make an incredible early-warning system!!!!

I think it's rally cool how different people tune in to the earth/nature in different ways. It's like we're all tuning forks that ring at different frequencies depending on what we're in tune with...I work with horses for a living and that is definitely my "frequency" - but I can sleep right through an earthquake, LOL....only wake up when stuff starts tumbling down and hitting the floor!   :P

Next time I am in, I will ask him specifics about the study. He did say it was a huge, long-term study in a peer-reviewed medical journal.
Title: Re: Why do some members choose not to take plaque nil?
Post by: Tivia on December 28, 2012, 09:11:39 AM
I could never Live in Seattle or on the west coast. On the 26th at about 8pm I lost all sense of direction and became a basket case until 10:30pm when a 3.6 quake hit and I passed out.

Life Extension magazine often tells of the benefits of various drugs and supplements and how they work to enhance and prolong life. They usually site pages of reports and studies.

Oo wow Joe, me personally crave cool humid weather, I can breath and dont feel stuffy. The summer drought about killed me literally , I pray we dont have another drought this year or im a goner. I felt like a asthmatic in a severe attack the whole summer long, with panic thrown in for good measure lol
Title: Re: Why do some members choose not to take plaque nil?
Post by: Chrisb on December 28, 2012, 03:22:49 PM
Gosh it's so confusing. If plaquenil is suppose to stop the progression of the disease then why don't all RA's prescribe it.  It seems there is controversy.  On the other hand, some RA's feel strongly that it does (like my RA) and will prescribe it.

I'm at a crossroads.  Do I take this medicine that may slow the progression or not.  I've read of the side effects of hair loss, GI trouble, itchy bumps, sun sensitivity, hair turning orange, skin discoloration, increase incidence of psoriasis ..... and that's not all of course.  Sooooo..... do I take something that could cause these on a chance it may stop the progression?

Does anyone know if there is a clinical study that shows the percentage of patients who suffered certain side effects from plaqenil?

Thanks so much y'all.  Can you tell I'm scared?
Title: Re: Why do some members choose not to take plaque nil?
Post by: Sleepy In Seattle on December 28, 2012, 03:44:55 PM
You can Google numbers/statistics on most drugs. I can't remember what sites specifically I looked at, but I remember that after reading a lot, I decided Plaquenil was pretty benign - it's been around for many, many years and actually has a way better safety record than a lot of OTC products.

Most people handle it just fine...some people have digestive upset and weird dreams at first, but usually get over than in a few weeks. It helps to take it on a full stomach in the morning. Some people start with just 200mg/day for the first few weeks and then build up to 400mg/day. It's definitely something you build a tolerance for - if it bothers you some at first, that doesn't mean it always will.

Then again - some people DO react very badly to it. If you are one of them, don't take it.

It is often a first line of defense because it is safer and more well-studied than any of the other drugs used to treat AI diseases.

Yes, the drugs can be a problem...but so is the disease. You can always TRY a drug (or a supplement, or a diet, or whatever), and if it's not for you, discontinue...but you CAN'T get rid of the disease, unfortunately (not yet, anyway - I do have hope, though!). Don't let the disease wreck your life because the treatment isn't perfect. I think sometimes people don't take the disease seriously enough. Read the dangers of the drug, sure - but also read what this disease can do to you. There are two sides.....

And none of it is a permanent decision - always work with your doc to adjust things so you get the maximum benefit with the minimum side effects! Never give up!!!!
Title: Re: Why do some members choose not to take plaque nil?
Post by: Chrisb on December 28, 2012, 03:58:09 PM
Thanks Sleepless.

I guess I'm just thinking if the plaquenil is suppose to slow down the progression wouldn't that mean you would need to stay on it?  I've never taken anything.  Seriously. I wouldn't even take tylenol after having my babies. Didn't drink, smoke etc.  I guess that's why I'm so worried. 
Title: Re: Why do some members choose not to take plaque nil?
Post by: connie50 on December 28, 2012, 04:11:38 PM
Hair turning orange? hadn't heard that one, that would be OK for me as I am a red head.  Maybe I wouldn't have to color my hair any longer  ;)

I've been on Plaquenil (generic) since mid August.  About 2 months in I did have what I thought was a reaction-
horrible night/day sweats, severe irritability and a big time witch.  I had just increased from 300-400 mg daily and immediately went down to 200 mg. and began taking Estroven thinking Plaquenil might have caused a major drop in hormones.  Within two weeks all symptoms stopped but I was told I can not take estrogen or anything that mimics estrogen due to the fact that I test very positive for anti beta2 glycoprotein antibodies.

My rheumy encouraged me to up my dose to 300 mg. ( he would like me at 400 mg) knowing that if I begin
feeling worse I have room to go up.  So far so good, none of the symptoms have returned...

I definitely have decreased fatigue, think more clearly and have much less joint pain.  I am a believer and this coming from someone that swore they would do everything possible diet changes, exercise, life style changes etc before ever going on medication long term.  Just goes to show how attitudes change when you are bombarded by one thing after another and feel hopeless.

I do have to admit that now that I am feeling near normal, except for the dry eyes that hasn't changed I am
contemplating (just thinking mind you) about implementing some of the other changes and attempting going off Plaquenil. 


Title: Re: Why do some members choose not to take plaque nil?
Post by: Violet4 on January 04, 2013, 11:30:17 AM
I took one pill and then endured 14 hours of digestive heck.  I also reacted badly to Prilosec and Pilocarpine.  I didn't want to try Plaquenil, but I was having a flare and I was desperate.  The rheum ran more blood work and I got a message that everything looks great!  SO frustrating!  I have been tested for all kinds of things and they can't find anything.  Believe me, I'm grateful it's not something awful, but still.  I am too young and active to waste away my life like this.  So far, a gluten free diet is working wonders for me so I'll keep going with that and various supplements.  I have another rheum appt coming up and then I think I'm taking a long break from the medical scene.  It's just stressing me out and making things worse.
Title: Re: Why do some members choose not to take plaque nil?
Post by: Friedbrain on January 04, 2013, 11:45:13 AM
Connie, I wonder if I could take 200mg plaquenil without an allergic reaction.  I mean, I know that if a body reacts to an allergen then it's going to react to the presence of an allergen.  But I wonder if the plaquenil altered my immune system in a way, at the higher dose, that contributed to the reaction but at a lower dose might work.  I think it did help me and even though people have had good results with the Second Line of drugs, I'm nervous about it.

Anyone have an allergic reaction (rash) at a higher dose but do okay at the lower dose?
Title: Re: Why do some members choose not to take plaque nil?
Post by: Connie on January 04, 2013, 12:14:44 PM
I was just diagnosed a year ago so it may be because I'm still early in it.  I just have Primary so I have dry skin, eyes, and mouth and feel that I'll just live with it as long as I can without the Plaq.  I'm not interested in having to get my eyes checked every 6 months but, again, I'm still new so you may want to ask me in another 5 years?  I've found that just changing my diet so that I'm not having the issue with dryness has helped somewhat and even allowed me to lose 10-12 pounds!  My rheumy said that she's never heard anyone have a positive thing to say about Sjog!  I'm using restasis and other drops as needed plus lots and lots of lotion now that it's winter.  Summer wasn't as difficult for me plus I have no pain in my joints..... yet!
Title: Re: Why do some members choose not to take plaque nil?
Post by: MaryBee7 on January 04, 2013, 01:26:40 PM
With my history of pretty nasty GI tract problems, I would be careful to blame Plaquenil on any of this type of thing.  I've had on/off nausea, ache/pain, motility issues before (this round is the worst) but was on nothing more than Vitamin D prescription gels and Crestor when GI stuff started (around 2006).  Went off both of those for 2 or so months and still had the problems. 

I suppose you COULD say 'within two hours I got sick' when taking Plaquenil ... maybe then it's a sure thing it's the culprit.  But with the many facets of SjS, I would hesitate to blame meds up front.
Title: Re: Why do some members choose not to take plaque nil?
Post by: quietdynamics on January 05, 2013, 10:36:55 AM
A number of months ago I went off Plaquinel to see if the ringing in my ears would be alleviated, as tinnitus can be a side effect. Really annoying...and tiresome.

Unfortunately, it is still there...oddly, sounds like an electrical current running through my brain. The pitch changes according to state of inflammation/stress...so now I use that as a 'trigger' sign for myself.

Can I have a moment of silence.....please.  Something you would never think about until you do not have it.
 
For whatever reason, I never really felt much relief of symptoms with Plaquinel.  I was taking it for about 3 years.
It is still something I consider.
Title: Re: Why do some members choose not to take plaque nil?
Post by: Tivia on January 05, 2013, 11:08:56 AM
QD, you took it for 3 years and it didnt help much? Are you on anything now to deal with the progression? I want to try something to stop the progression before it gets bad, and I rthought thats what plaq did was slow or halt the advance.
Title: Re: Why do some members choose not to take plaque nil?
Post by: Chrisb on January 07, 2013, 05:33:26 AM
Tivia
That's what I thought. Plaquenils suppose to slow the progression.....
Title: Re: Why do some members choose not to take plaque nil?
Post by: Scottietottie on January 07, 2013, 08:31:03 AM
Hi  :)

I'd just like to say here that although Sjogren's is progressive it is meant to be very slowly progressive and with some people it hardly progresses at all.

Now I've been in here long enough to know that with some it progresses rapidly but I'm afraid they are the unlucky minority.

The people who stay in the forum long term are often that unlucky minority whose Sjogren's has progressed and who are pretty ill.

I am an exception to that. I've had this for at least 30 years. Progression has been slow. With me its more a condition to be managed than an illness. I've never been ill enough to need steroids although I did take Plaquenil for 6 years.

If there are any newbies reading this please believe that there is life after an SjS dx and that you can assume that you will end up ill and disabled. You will waste your life if you spend too much time worrying about the future.

Take care - Scottie
Title: Re: Why do some members choose not to take plaque nil?
Post by: Tivia on January 07, 2013, 09:23:05 AM
Hi  :)

I'd just like to say here that although Sjogren's is progressive it is meant to be very slowly progressive and with some people it hardly progresses at all.

Now I've been in here long enough to know that with some it progresses rapidly but I'm afraid they are the unlucky minority.

The people who stay in the forum long term are often that unlucky minority whose Sjogren's has progressed and who are pretty ill.

I am an exception to that. I've had this for at least 30 years. Progression has been slow. With me its more a condition to be managed than an illness. I've never been ill enough to need steroids although I did take Plaquenil for 6 years.

If there are any newbies reading this please believe that there is life after an SjS dx and that you can assume that you will end up ill and disabled. You will waste your life if you spend too much time worrying about the future.

Take care - Scottie


Scottie, thats a great post, I wish I could convince my self to think that way. I am trying, but I am feeling every little ache and pain and weakness and thinking its sjs or diabetes raising its head. I dont know if looking for things constantly can make them happen, maybe..but yeah I seem to be looking for everything. I wish I could stop but this disease has scared and obsessed me. I need to find some kind of detachment way of thinking. Its hard for me to do that I was always one of those focus on things people.
Title: Re: Why do some members choose not to take plaque nil?
Post by: Meld256 on January 07, 2013, 09:49:22 AM
I'm going back a bit in this thread.
Chrisb, I understand being at a crossroads about Plaquenil.  I had a prescription for 3 months before I filled it, and that was after I was the one who asked my doctor for it.  I read about side effects and was concerned about this and that.  Finally, my husband convinced me to just try it; I could always stop.

It's one of those things that one just needs to try to see. Some have issues, some don't. I've been on it 18 months now; no big side effects and it's helped my fatigue and joint pain about 60-75% I suppose.  That's pretty good, I think.
Just my opinion.  :)
Melinda
Title: Re: Why do some members choose not to take plaque nil?
Post by: Meld256 on January 07, 2013, 09:58:18 AM
Tivia,

I can understand how we can get obsessed and frightened about things. It can be scary learning we have something for which there is no cure.  However, as Scottie stated, it doesn't mean it must take over our lives. 

I know it's hard to not think of everything that may happen, but that's really the crux of it.  It may...and there is a better chance that it may not! For those of us who like to be sure of what might happen, it is frightening, and that's the difficult part. 
If someone is rather new in their journey with all this, I can say it takes us all some time to come to grips with it.  The emotional part is sometimes harder than the physical.  It can help to have support (like us here) and some of us have had short rounds of therapy with counselors who specialize in chronic illness.  Sometimes that can help us learn how to better manage our fears and concerns, so we can live with less anxiety about it all. 

Just some thoughts I'm throwing out there, and my humble opinion.  Hope it helps just a bit.  ;)
Title: Re: Why do some members choose not to take plaque nil?
Post by: quietdynamics on January 07, 2013, 10:53:01 AM


Chrisb...Side effects; we should be aware of, but, be aware that FDA requires 'a side effect reported' to be listed. This will include side effects reported by patients who may have had other un-Dx'd underlying medical issues besides the one treated, thus not reported to Dr, may not have been compliant with taking the med or have an 'unhealthy' lifestyle. Usually, if you find the actual number of patients who reported it is so low. Plaquinel is a fairly benign med.

Often I do see posted on the forum, that a person has a side effect to a drug introduced into their body...and they 'dump it', where weaning on slower, or taking it at a different time of the day, etc. would have helped them reap the benefit.

My Neuro had me up the dose on a med. The effect was that my body could not tolerated it. I called and he wanted me to stop it. Hey...wait!!! Can't I just go back down. So that is what we did. I have been on the med for 14 month and I have a much improved independent quality of life.
Another med that I was taking at night I had to start taking in the daytime, as it was keeping me awake at night at the higher dose...the point is  and being open to adjustments can be to out benefit. Keep a diary.

In the meantime...think positive.




Title: Re: Why do some members choose not to take plaque nil?
Post by: Friedbrain on January 07, 2013, 04:56:07 PM
Quietdynamics, your post makes some great points.  My rheum had me start plaquenil at 400mg and then I had an allergic reaction and *stopped*.  Well, I get that my body needed a break and needed to calm down, but now I'm wondering if I could tolerate it at a lower dose.  I'm not sure why my rheum had me go from zero to 400 on the first day in the first place.  Often, docs have had me ramp up on drugs. 

In the same way, like you said, I had a funny reaction to a higher dose of lyrica.....I'd been on 75mg 2x a day but when I started experiencing breakthrough seizures, my neuro had me double the night time dose......and for an entire weekend, I thought I was receiving profound answers to the universe!  Whoo, I was in lala land.  I guess a part of me recognized I wasn't based in reality so called the doc the following Monday....and he had me go back down to the regular dose.  Like you said-in that case, no need to quit, just reduce.
Title: Re: Why do some members choose not to take plaque nil?
Post by: Saundra on January 08, 2013, 05:32:36 AM
I came off plaquenil the week prior to Christmas mostly I wasn't sleeping due to nightmares.  I had some other unpleasant side effects as well but at the time I really needed my sleep.  My rheumy said I could retry in the future.  This past weekend was the future, this time I'm only doing 200 mg one pill in the am, none at night for now and see how my body reacts to this.  I really did feel like I hurt a lot more than I remembered which is why I'm trying again.

XOXO
Ldy