Author Topic: Why do some members choose not to take plaque nil?  (Read 12392 times)

connie50

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Re: Why do some members choose not to take plaque nil?
« Reply #45 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. 



Violet4

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Re: Why do some members choose not to take plaque nil?
« Reply #46 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.

Friedbrain

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Re: Why do some members choose not to take plaque nil?
« Reply #47 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?

Connie

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Re: Why do some members choose not to take plaque nil?
« Reply #48 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!
Sj√∂gren's-A dx: Jan-2012  Hydroychlorquine 200/day. Dry eyes/mouth/skin.  Dry cough.
Sjogrens B dx: Nov 2018
MCTD dx: Nov 2018
Lupus dx: Oct 2019 but no abnormal inflammatory markers!

MaryBee7

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Re: Why do some members choose not to take plaque nil?
« Reply #49 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.

quietdynamics

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Re: Why do some members choose not to take plaque nil?
« Reply #50 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.
« Last Edit: January 05, 2013, 10:40:02 AM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Tivia

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Re: Why do some members choose not to take plaque nil?
« Reply #51 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.

Chrisb

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Re: Why do some members choose not to take plaque nil?
« Reply #52 on: January 07, 2013, 05:33:26 AM »
Tivia
That's what I thought. Plaquenils suppose to slow the progression.....

Scottietottie

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Re: Why do some members choose not to take plaque nil?
« Reply #53 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
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Tivia

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Re: Why do some members choose not to take plaque nil?
« Reply #54 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.

Meld256

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Re: Why do some members choose not to take plaque nil?
« Reply #55 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

Meld256

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Re: Why do some members choose not to take plaque nil?
« Reply #56 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.  ;)

quietdynamics

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Re: Why do some members choose not to take plaque nil?
« Reply #57 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.




Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

Friedbrain

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Re: Why do some members choose not to take plaque nil?
« Reply #58 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.

Saundra

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Re: Why do some members choose not to take plaque nil?
« Reply #59 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