increasing plaquenil, having problems

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serenity76
New Member


Date Joined Nov 2008
Total Posts : 13
   Posted 11/11/2008 7:15 PM (GMT -7)   
Hi all,
 
I am new to the boards, and was hoping for some input about plaquenil.  I have been on it since April 06, but have mainly only been taking 200 mg a day instead of the 400 mg that was prescribed.  The first Rheumy I saw said he was leaning towards diagnosing me with lupus (based on labs and symptoms over last few years), and put me on it to see if it helped.  Even though I was miserable, and SO tired and sore every day, I was hesitant to start it, since I've always had a sensitive nervous system when it comes to medication (my mother is the same way).  I finally decided to just start it, and wow did I notice a difference in how I felt.. within a matter of days.  I was having trouble holding back tears when I saw the Rheum. again, because I wanted to thank him for prescribing it for me.. it felt like I had some of my old life back again.  Well, now that I have been on it for few years, I have started noticing that I have gone downhill again, and have had more symptoms (consistently) for about the last five months or so.  Same stuff as before.. debilitating fatigue, stiffness, soreness, throat and eye dryness, facial rash, mild fever, nausea, GI issues.  So, since my newer Rheumy I'm seeing said I can increase the Plaquenil at any time if I decide to, I went ahead and started taking the 400mg instead of 200 the last two days.  I noticed a difference right away.  In fact, yesterday was the first day in a LONG time I was able to to a few physically-strenuous tasks in a row without getting competely winded like usual!  redface    The only problem now is that today (after taking 400mg again yesterday), I am noticing a lot more anxiety and higher pulse rate, along with some dizziness. I also was having some slight chest discomfort during the night and during the day today.  I actually woke up last night having a bad dream, where my chest was feeling constricted.  Can't say I've had that dream before!   rolleyes  
 
Anyway,  I am remembering now that this increased anxiety may be the reason I stopped taking 400 mg. in the past, the few times that I tried to.  I also take levoxyl (thyroid hormone replacement) for Hashimoto's disease, which I've had since 2000.  I wonder if taking both that and the Plaquenil is causing this?  I am feeling a little worried about this, because I want to stay on the Plaquenil, but don't want to start having bad anxiety issues again.. I started having issues with panic attacks last year. 
Does anyone else experience these same problems on Plaquenil?  If so, is there something else that can be prescribed that will help me have somewhat of a normal life?  I've felt so ill for so long, and started feeling so much better the last few days, that I am terrified to have to live my life that way again!  Isn't it weird how we don't realize how sick we are until we feel better again? 
 
Thank you to anyone who can give me some advice..  :-)
 
Just some info. about me:  32 yrs. old, Hashimoto's since 2000, Mono in '95, severe depression diagnosed '96, UCTD and Sjogrens '06, panic disorder '07, Fibromyalgia '08

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 11/11/2008 7:37 PM (GMT -7)   
Hi Serenity,

In reading your post, I first was thinking of suggesting that thyroid issues were ruled out. They can mimic a lot of your symptoms. But then I was thinking anxiety or panic attacks. Then you mentioned both.

Easy things first . . . have you had your TSH done lately? This could be causing some of your problems. Even taking your thyroid meds differently can change your level. Are you taking the thyroid meds first thing in the morning at least one hour before food or brushing your teeth.

The other suggestion would be to try taking your plaquenil: one with breakfast and one with dinner or night time snack. You could even take one and a half each day for a couple weeks and then go up to the full two pills.

Plaquenil usually takes several weeks to kick it in. It has to build in the system. But I've seen other members describe benefits in a week or two. Sometimes the idea that relief is on the way can help too.

But I've not seen members describe your side effects from plaq. Usually they describe it bothering their stomach.

I hope some of the others will have some suggestions for you. Hang in there. The good news is the doctor sounds like he/she is really on your side.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Leta
Veteran Member


Date Joined Aug 2005
Total Posts : 590
   Posted 11/11/2008 7:44 PM (GMT -7)   
Hi Serenity,

I am sorry to hear that you are having problems with your Plaquenil. But then again I am glad to hear I am not alone in the issues you hare having at night. I just started back on Plaquenil about 4 weeks ago and I do wake up with the rapid heartbeat, anxiety, weird dreams, night sweats etc. I know I do feel better during the day. One thing though, you may be feeling better by upping your dose by the extra 200 mg, but you are also overdoing it it sounds like. You need to give it time to kick in. One thing my Neuro did do was give me Clonazepam to take PRN at night for when my system does get out of wack. It will calm down as your body adjusts. Its just your bodies way of saying it needs exercise as well but without over doing it. One thing that really does help is walking. If you get this in the middle of the night, walk, pace, or if you have a treadmill, and believe me if you are exhausted, (I always am) just walk. Eventually I hate to say you will are yourself out and you will sleep. Hope this helps.

Leta
sle 01 w/autonomic 11/05, photosensitive 04/04, sjogren's 01, ra 01, fibro 8/05, sinus tachycardia 6/04, asthma 96, multiple allergies 6/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06-gone, TIA 5/06, Porphyria 5/06, Vitamin D def 4/07, Iron def ferritin 8/07, Chronic migraines 01.Meds- baclofen 40 mg, prenatal tabs, potassium, calcitriol 50 mcg, qvar, xopenex, singulair, plaquenil 400 mg, tramadol 400 mg, darvocet 100 mg, percocet 5mg, amitriptyline 10mg, chromagen, topamax 150mg,


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5790
   Posted 11/11/2008 9:10 PM (GMT -7)   
You might want to double check the drug interactions website to see if there is some interaction going on that the doctor missed. One such site is listed in my signature below, I think it's the last link.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


serenity76
New Member


Date Joined Nov 2008
Total Posts : 13
   Posted 11/11/2008 10:10 PM (GMT -7)   
Thanks to all of you for your help and suggestions. I do think the anxiety could be related to my thyroid somewhat, since I have battled with hyper symptoms, and then hypo, and then back again so many times over the last 8 years. It just seems like the moment I start to lose any weight whatsoever, I start having the hyper symptoms all over again. And then if I purposely gain more weight to counteract those symptoms, then I am extra tired, sluggish, and constipated! Yes, that is the wonderful world of Hashi's and hypothyroidism for anyone who has not experienced it. I don't have any doubt though that it is the plaquenil that was causing the dizziness, and faster pulse..and it makes sense that my body is going to need time to adjust. I remember the first day I ever started plaquenil, and was having terrible headaches all of a sudden. I prayed that they would go away, because I knew I needed to stay on the plaquenil if I was going to have any somewhat "normal" life ever again. Luckily, after the second day went by, the headaches had subsided for the most part.

So my plan for now is to space out the plaquenil during the day, instead of taking it all in the evening, and to also maybe try 200 mg one day, and then 400 mg the next. I'll let you know how it goes.. Thanks again for the help!

:)

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/11/2008 10:30 PM (GMT -7)   
Hi again Serenity,

Lynnwood had a GREAT suggestion . . . make sure your check for drug interactions. Another tip we use here is to talk to your pharmacist. They are a really under-used resource and it won't cost you anything. Tell him/her about your symptoms/side affects and see if he/she has any suggestions.

Do keep us posted!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


serenity76
New Member


Date Joined Nov 2008
Total Posts : 13
   Posted 11/12/2008 12:01 AM (GMT -7)   
Thanks Rosie and Lynnwood,

I agree, it was a great suggestion.. I made sure to check for interactions through that link, and it didn't show any. So I guess that is a good thing.

If I continue to have problems, calling the pharmacist is a great idea too. I am doing better this evening ever since I took an ativan earlier to calm down my jittery feeling. It really helped.

Tonight I am only taking one plaquenil, instead of two, or I may even just wait until the a.m. to take it. I figure that will help me out as well.

Snickerdoodle
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 11/12/2008 1:40 AM (GMT -7)   
Hi Serenity,
Sorry about all the frustrations with your meds and dx. I know I've been there! I just wanted to point out that Plaquenil has a minimum 30 day half life (thats why your doc will tell you it takes atleast a few weeks to notice a difference). Its likely that unless your symptoms are GI it is probably coincidence that they occurred so close to you changing your dose. I agree with checking your thyroid. I would check ASKAPATIENT.COM for your med side effects. Those inserts and medicine side effects are so broad. They pretty much have to put every symptom someone complains of on the insert. So if someone gets a headache while on the trial of the med, headaches become a symptom. You kind of have to weed all that out on that site sometimes too!
I know the Walgreens pharmacy by me is great for telling me about interactions. I started on sulfasalazine a few months ago and every time I pick it up they tell me about interactions with my birth control. Good luck with the Plaquenil, it took me about 6 months to start taking my full dose because it upset my stomach. I also take it twice a day, which is a pain to remember but helps.
Take care
Melissa
Dx: UCTD,Raynaud's,iron deficientcy anemia,proteinuria
Rx: Multi-rec folic 500, Celebrex 200 mg, Plaquenil 400mg, Ultram PRN


serenity76
New Member


Date Joined Nov 2008
Total Posts : 13
   Posted 11/12/2008 1:03 PM (GMT -7)   

I know some of you are just trying to help, but I don't know if those of you who have never been on thyroid medication understand what kind of effects it can have on other medications you combine it with.  I've even had a doctor tell me before that the effects of antidepressants can greatly be increased by thyroid medication.. that they sort of increase the effects of each other in a way.. if that makes sense to you.  It made sense to me, and it also makes sense to me that plaquenil (just like any other new drug you are putting in your system) can be causing my dizziness and heart palpitations.  If it is strong enough to cause immediate GI reactions (which I experience in addition to the other things I mentioned), then how would all of the other symptoms just be a coincidence?  Also, even though it is not showing up as drugs that interact with each other on a drug website, that doesn't mean that they couldn't interact with each other.. in my honest opinion, it seems that most doctors don't even know how to answer questions about plaquenil when I've asked them how it works.  I think this is a drug that honestly hasn't been studied as much yet as we would like to think it has been.

Oh, and one other thing.. I have read recently an article about plaquenil dosing, and how it is calculated, and that 400 mg is a typical dose given to a patient who weighs 135 lbs. or more.  I weigh 127.

Just something to think about.

 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 5790
   Posted 11/12/2008 1:38 PM (GMT -7)   
At www.rxlist.com it mentions that in overdose conditions or hypersensitive patients, plaquenil can cause dizziness and heart palpitations -- so these are definitely issues that you should talk to your doctor about. Perhaps there is a dosage between 200 and 400 that will be right for you.

That said, I also have to mention that both dizziness & heartbeat can easily be influenced by our thoughts, particularly when we are worried, anxious, or panicky about a new medication. I've had that happen to me when I wasn't even conscious of it...I think that's why sometimes drs want us to try things a week or even more before the final decision is made.

If I were in your shoes, I'd put a call into my dr and try & get a sense of how serious the dizziness/heart issues might be - then ask about alternative dosages - if there aren't pills in other sizes, maybe 200 one day & 400 the next or something. Obviously the final decision is yours, in conjunction with your doctors. It'd be nice if one dr had intimate knowledge about both meds, but that may not be the case.

I think most of us know that thyroid medication definitely interacts with anything that gets even close to influencing hormonal components, but in my time here I haven't heard of anyone with both plaquenil sensitivity and thyroid questions like the one you are presenting. Sorry we can't provide more help.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(8mg), Piroxicam, Xanax(as needed), Trazodone, Boniva(monthly), Wellbutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


serenity76
New Member


Date Joined Nov 2008
Total Posts : 13
   Posted 11/12/2008 8:53 PM (GMT -7)   

Thanks for your help Lynwood, I really do appreciate it.  You have some good suggestions.  And thanks to the others also who realize that it isn't a fun thing to go through when you are experiencing these types of symptoms!  I've been revved-up all day with my heart palpitating all day now that I've been at work (with no reason to be that way), so I know at this point my system really is just extra-sensitive to this medication.  I am going to go back to the 200 mg., and ask my Dr. what she thinks I should do.   sad

Thanks again,

Lisa

 

 

 

 


Snickerdoodle
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 11/13/2008 2:35 AM (GMT -7)   
Serenity-
I didnt mean to upset you. I would like to explain why I said what I said to you so you can understand. Its very frustrating that doctors wont take the time to answer questions for us. I spend alot of time trying to figure out things too. I am a nurse and have a basic knowledge of most meds. I also have been on thyroid meds.(My TSH, T3, and T4 are never normal but have no rhyme or reason to why). I stopped taking them because I was also having heart palpatations and increased heart rate. The GI symtoms occur because of immediate digestion in your GI tract. They react with your stomach acid and ph level to cause cramping and diarhea. Most drugs are metabolized in the liver and have to be broken down into usable form for your body to have a reaction. Which is why I mentioned the 30 day half life, it takes a while for you to break them down. Essentially thyroid replacement hormones are just that. A replacement of your bodies natural hormone. But you are right, there is no way for them to know every reaction with every medication combination. Or your bodies hormone cycles. And you are definately experiencing symptoms of overactive thyroid. I was just trying to help you understand things a little better.
They dont know how Plaquenil works, and thats why you cant get a straight answer. All they know is that it slows down the immune system from attacking itself. It was kind of a mistake that they discovered this. This drug is used to treat/prevent malaria.
So again I was just trying to share some information.
Good luck
Melissa
Dx: UCTD,Raynaud's,iron deficientcy anemia,proteinuria
Rx: Multi-rec folic 500, Celebrex 200 mg, Plaquenil 400mg, Ultram PRN


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 11/13/2008 11:58 AM (GMT -7)   
Serenity--
I take synthroid, am supposed to be taking 400mg of plaq but only take 200mg as well. I have only increased for short periods of time, but the symptoms you describe remind me of the symptoms I had when my thyroid medicine was slightly too high, or when I had problems with electrolytes and water balance. I had more problems when I was getting occasional prednisone tapers and injections.

I am having similar problems on Isoniazid for latent TB, which blocks the synthroid, but also stimulates the adrenals. I have secondary adrenal insufficiency because my adrenals still work but my pituitary isn't supplying them with ACTh to trigger them to become active. Prednisone can cause this but in my case, it is part of my autoimmune polyglandular dysfunction.

Because the isoniazid is killing the latent TB infection I have and taking the burden off my immune system, my pituitary is working better and my adrenals are freaking out, making me frighteningly hyper sometimes. Of course all this alters the thyroid too. My thyroid is getting worse.

Plaquenil being both an immunosuppressant and a disease fighting agent might be helping you alot more, since you get so much energy from it. I would get with the endo as many have suggested. I always try to get a cortisol test and ACTH stim along with the thyroid tests to see if something else is going on and figure out which med needs best be adjusted. I do think the plaquenil helps my thyroid some being an immunosuppressant but this is my gut feeling. My AI disease is well controlled on 200mg most of the time. Hopefully your endo will check you for the other endocrine problems since they are interlinked.

My endo told me to not always drink water but sometimes gatorade as I drink distilled water and it has no electrolytes. When my electrolytes are bad, I have lots of heart and panic problems, but also the thyroid has to be checked. I have thirst problems, excessive, then no thirst.

I've gone rightly to the ER for the chest stuff and even if it is my thyroid med or plaq, there is stuff they can do and they tell me I was right to be checked out just in case. They always put me on IV fluids to thin stuff out, either electrolytes or no electrolytes depending on what the bloodwork shows.

I'm still not taking the 400mg as requested every day, but plan to try again after I complete isoniazid therapy. Sometimes it just makes me feel yucky to take so many pills, but my liver isn't good. Probably just a mental thing though.

I wish you the best and will pray for you that you get it figured out properly. Take care.


Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

Post Edited (cured4real?) : 11/13/2008 11:02:12 AM (GMT-7)


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 11/13/2008 12:29 PM (GMT -7)   
Oh Serenity, I once tried to go OFF plaquenil (before taking Isoniazid to lessen the burden on my liver). It was a very bad idea. I got the symptoms Lynnwood described going off the plaquenil and had such bad heart problems that I went right back on. And I was only off for a day or so. My legs swelled up really bad and I got edema everywhere.

If the plaquenil is also helping your thyroid disease by suppressing the autoantibodies that are attacking it or otherwise killing or suppressing a unknown agent that may be worsening the problem, then perhaps the thyroid med might be best to adjust.

I really have gained a lot of respect for plaquenil because it not only suppresses the immune system but fights disease. There are many docs that believe that there is a disease element or trigger underlying autoimmunity in some cases and if this is true, plaquenil would have an advantage over many other meds, including steroids. Its funny, I always get colds or infections on steroids, but seldom on plaq, no matter how much I take. It truly was a wonder drug of its time. It also treats many conditions. Docs don't know how most drugs work, especially antidepressants and antiseizure drugs, and with a drug like plaquenil that is effective against so many conditions, they may find new uses for it all the time.

Docs dont even know what causes autoimmunity, so that is the more relevant problem, for they can't treat something when they don't really know what causes it and are just developing research and technology to study it in depth.

I know you are suffering with the double burden. But maybe your pituitary and adrenals might be contributing, so a thorough endo checkup might help. I have the same problem as you, hyper/hypo as the thyroid slowly dies. Lovely. Also blood insulin to check for hypoglycemia is good. Estrogen blocks synthroid too. Mayo checked all my stuff, telling me that the thyroid and adrenals shouldn't be treated unless the pituitary is thoroughly checked. You might ask for a thyroid scan too, sometimes people with nodules go hypo/hyper--my mom did. Do you have a blood sugar test kit? You don't need a prescription and it helps alot to test that too and they are really cheap, like $18 bucks and well worth it even if you don't think you have diabetes because the sugar can go high andlow on steroids.

I will always keep a blood sugar test kit in my first aid kit. Its just such a simple thing to have and helps with figuring out if someone has low blood sugar from forgetting to eat, like my son, who is not diabetic, but gets panic attacks.

Most of us here have thyroid problems, diagnosed or not, and certainly have experience with steroids. Its just that the docs have their good reasons for pushing the plaq. It seems like you know it's the thyroid or something like it. I know endos can be lousy, I have yet to find a really good one. The clonazapam I take at night (a small dose) gets me through the rough spots and my doc gives me enough to double up on panicky days or when i cant take synthroid for a scan, or can't get into the office to have my hormones adjusted.

I need to eat with plaquenil, if I dont I feel bad. Also, milk is an old standby when meds seem too strong as it supposely flushes stuff from the body.

Lynnwood gave you good advice. I know its hard, but tryto remember its just the meds, through the worst of it. Be careful if you drive, and try to get in to the endo or doc of your choice.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


serenity76
New Member


Date Joined Nov 2008
Total Posts : 13
   Posted 11/13/2008 6:32 PM (GMT -7)   

Melissa- I appreciate your info. and input.. I'll take any I can get.

and Marji.. oh my, you are dealing with a lot aren't you??  My heart goes out to you, because it sounds like you've been through a lot, and you obviously know how it is when you have no choice but to have to take thyroid meds to supplement a completely non-functional thyroid gland, plus you have the adrenal insufficiency to go with it.  It is the pits isn't it?  I thank you for the info. and suggestion about getting more endocrine things checked out.  I see both my Rheum. and Endo. in the next few weeks fortunately, so I am hoping I can get some kind of answers to all of this.  I have suspected for at least 3 years now that I have some kind of adrenal insufficiency, which would make sense to me based on types of symptoms I get, but of course, when I asked the Endo. last year if there was some way to check it (when I had started getting panic attacks), all he did was an am cortisol test, and that was it.  They told me it was completely normal.  So, I gave up on trying to get any answers about why I was getting this terrible, shaking, panic-attack type of anxiety out of absolutely nowhere, all of a sudden.  Can't handle caffeine whatsoever anymore.. any kind of stress sets off attacks, etc.)  Between drugs and counseling, and over a period of 9 mos. or so,  I got it more under control, but the interesting thing to me is that I only got it truly under control when I decided to gain more weight, to see if I would finally stop feeling so "hyper-thyroid" all of the time (TSH, t4, and t3 were always showing normal when tested, but I had a feeling if I could just get a lesser dose of thyroid in my system, I would finally feel "normal" again).  Since I couldn't get the Endo. office to listen to me that I needed a lower dose of thyroid meds, and that I just wanted to at least try it, I took matters in my own hands, and started splitting the dose during the day, so that some of it was getting absorbed somewhat with a meal nearby taking the second dose.  Well, guess what?  After doing that (which also caused me to gain a few pounds), sure enough, no more panic or anxiety.  I mean night and day difference.  Literally, I was no longer shaking when I would hold out my hand (any time of the day).  After doing that for a month or so though, I realized that I was too much into the hypothyroid symptoms side of things again (you probably know the drill), so started taking the .1 mg again all at once in the morning. 

Anyway, I still hope there will be some sort of substitute for some of the plaquenil, since it seems to help me more than I could have ever dreamed, but just seems way too strong for my system to take the dose that is recommended.  Heart palpitations and chest tightness, and feeling dizzy and weak are definitely not symptoms to take lightly.  I'm sticking to the 200 mg. right now.   Thank you again for the great info. and advice, and I will let you know if I get any answers in the next few weeks.  Crossing fingers..  rolleyes

Lisa


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/13/2008 9:39 PM (GMT -7)   
I don't have Lupus but I did take Plaquenil for two years for my RA and have been off of it for a couple of months and have many of the symptoms you describe without my plaquenil! I really feel unwell and have lots of anxiety, dry eyes, my daughter commented the other day on my red eyelids? but I also have the GI issues, rashes etc now that I'm without it.  I don't have any thyroid issues since I have been tested for that but I do have low B12 even though I take a supplement so I have wondered if that maybe some of my trouble.  Have you had that checked? I'm sure you have:) Anyway anytime I see a Plaq post I normally read it and I thought I would let you know that you are not alone..I'm miserable without my plaq too sad

serenity76
New Member


Date Joined Nov 2008
Total Posts : 13
   Posted 11/14/2008 2:06 AM (GMT -7)   

Momto3, I'm so sorry to hear you are dealing with the symptoms you described.  I know so well what you are talking about, and I just feel so sad when I know there are others out there who deal with the same yucky stuff. sad    I was curious why you had stopped the Plaquenil?  Were you having side effects?  Or was it just not helping you with the RA and other things?  I know there are some of those people out there who just need something different, because plaquenil just doesn't help them.   Since you mention that you are having rashes, dry, red eyes, GI issues, and anxiety, I wouldn't be surprised at all if you have more connective tissue issues going on besides RA.  And the anxiety is definitely something I experience a lot when I am having a flare of my symptoms, especially near the time of my period.  I will sometimes just feel so ill that I honestly feel as though I'm going to stop breathing, or my heart is going to stop beating.  I know that sounds crazy probably, but it is the best way to describe how I develop anxiety during those times.  I wonder if you are the same way.  Just know that you aren't imagining these things.. I spent a long time feeling like no doctor was truly listening to me or believing me about how exhausted I felt every day (and they weren't) until a new primary care doc felt my swollen lymph nodes on my neck (which are still there to this day, this was 3 years ago), and well, that got some attention pretty quickly!  He immediately ran tests, which came back with high positive ANA, and he sent me to a Rheum. after that.

I truly hope you will find some answers, and I hope you will tell your doctors what you are experiencing, because maybe they can have you try a different drug to supress some of that.

Take care for now,

Lisa     :-)


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/14/2008 4:05 PM (GMT -7)   

Hi Lisa..

I actually loved my plaq and highly recommend it! I failed my visual field test and showed plaq build up after two years on it, and my rheumy took me off of it.  I have been going to the rheumy for just about three years now and all of my tests have been normal so I'm classified as sero-negative RA..Everyone talks about finding their cocktail of meds and for the most part the plaquenil, Enbrel and MTX pretty much helped me feel human but now without the plaquenil I just feel horrid! You mentioned the anxiety around cycle time and yes that would be me sad I really try to keep it hidden as best as possible so my family doesn't think I'm more nuts then they already do with all of this joint pain.

Stress is the worst for me and really brings out the anxiety and the facial flushing and rash it can be really embarrassing and that can increase my anxiety as well.

Thank you for sharing, I thought maybe I was imagining these symptoms!


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1942
   Posted 11/16/2008 1:42 AM (GMT -7)   
Serenity, Hypoglycemia causes symptoms like that too, so be sure they check that since insulin is a hormone. I hope they check your antithyroid antibodies (TPOs) as well as your thyroid, for you can be euthyroid (have normal thyroid function tests) but I was told the antithryoid antibodies can cause severe and permanent nerve and brain damage (which I have from the increase of TPOs on interferon, which is common). They told me it will take years for it to heal once my thyroid is properly treated and some will not be reversed, and the anxiety you describe is what it is like when my adrenals suddenly work after not working (ie after the cortrosyn stim test). Best of luck and let me know what happens.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


serenity76
New Member


Date Joined Nov 2008
Total Posts : 13
   Posted 11/16/2008 3:25 PM (GMT -7)   
Thanks for mentioning that Marji, I am always curious the next time I have labs done what my glucose level will be, because it is often right on the border of going too high out of range (usually right around 100).  So, I have often known that my blood sugar level isn't always stable.  I have had a lot of hypoglycemia-type of symptoms most of the time though, if anything.
That is interesting about the antibodies too.  Mine were sky-high (as the doctor said) when I was first diagnosed w/Hashi's.  Then again, right before I got started on plaquenil, and was feeling my absolute worst, with the UCTD symptoms, they showed up high again.  I believe that about them causing nerve/brain damage.. I have always felt that having them active can't be a good thing.  Now I know I guess.  eyes    All I can say is thank the good Lord for plaquenil, because it is the only thing that has been helping me.  (I have done the 400 mg the last few days again, despite the anxiety it is still causing).  I think I may just do the 400 every other day until I see the Dr., but I know for sure that increasing the dose is helping me.
 
Momto3, I am so sorry to hear the plaquenil affected your eyes, I am wondering if that may happen to me down the road.  rolleyes Hoping not.  I guess time will tell.  And that is exactly what happens to me with any increased stress or lack of sleep.. the feverish feeling, butterfly rash.  Every single time.  Something I find extremely interesting is that once I've upped my plaquenil for two days in a row, I notice a BIG improvement with that.  Normally, toward the end of my work day, I get those symptoms every day, but yesterday (after second day on increased plaquenil), had barely any of it whatsoever.  And last week when I increased the plaquenil for two days, same thing.. by the second day, wasn't having those things happen.
 
Anyway, I really hope you will find out that there is something else you can take for awhile that might help you.  Having any symptoms like this (mainly the exhaustion) is no way to live.  It is so amazing to me how much suffering that people learn to live with, and then one day, when it is being treated properly, realize how much different their life used to be!
 
Take care for now,
Lisa
 

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/16/2008 11:44 PM (GMT -7)   
Hi Lisa,
 
As long as you make sure you monitor your vision you should be fine and it is wonderful that you can take it and that it is improving your symptoms! It does wonders for the energy level that is for certain. My rheumy told me there are no replacements for plaquenil except for one that would possibly turn me orange and would be very noticable because I'm so fair skinned.   I'm tempted to take it and see if I really do turn orange tongue
 
Thanks for sharing.

serenity76
New Member


Date Joined Nov 2008
Total Posts : 13
   Posted 11/17/2008 12:20 AM (GMT -7)   
Momto3, which drug is one that will turn you orange?  You have me curious now.  cool

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/17/2008 9:04 AM (GMT -7)   

Hi Lisa,

I believe it was called Quinacrine (sp?) my rheumy said it is doesn't cause the eye damage and if you are darker skinned it's fine but if you are as pale as I am..I guess I'm paler than I thought!!! I would look orange cool It would look like I had jaundice...although he has a patient in her 50's who doesn't care that she is orange cool the med really works for her so maybe I will just get to that point eh? smilewinkgrin

Have a great day :-)


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 11/17/2008 9:10 AM (GMT -7)   
Hello
The alternative to Plaquenil is Quinacrine which can yellow the skin but this is by no means inevitable. I am very fair skinned but there is no visible yellowing on my skin despite having taken 100mgs a day for over ten years. Like many things it is very variable.
All the anti malarials have as part of their action stimulation of the adrenal cortex/CNS. This accounts for their usefulness in combating fatigue. Quinacrine is especially energising. The symptoms that you experienced on increasing the Plaquenil might be due to the same effects. The maximum recommended dose for Plaquenil is 3mgs per lb of ideal body weight. At higher doses the risk of eye damage increases long term especially if there is kidney or liver involvement.
One advantage of the Quinacrine is that it does not affect the eyes so it is suitable for people who have any special concerns in that regard.
A combination of the two can provide extra anti malarial benefits more effectively than raising the Plaquenil dose.
If your CNS is unusually sensitive to Plaquenil it might be even more sensitive to Quinacrine. Very low doses such as twice a week might be enough to boost antimalarial power without unwelcome side effects As with everything, there is risk and benefit calculation and taking as little of a drug as needed to get the maximum benefit.
HTH
BB

BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 11/17/2008 9:15 AM (GMT -7)   
:)
I wouldn't care how orange I was either. This combination has freed me from mild to moderate arthralgia and got rid of my severe skin problems (SCLE) as well as giving me far more energy than I had 20 years ago. My hair is bleached because of years of antimalarial use but it looks like deliberate highlighting. The yellow coloring goes when you stop the drug or reduce the dose. It depends what matters more to you.

HTH
BB
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