Author Topic: Plaquenil  (Read 936 times)

Judes

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Plaquenil
« on: January 26, 2019, 07:53:06 AM »
Hi everyone! It's been a while since I posted hope you all had good holidays. I had been staying away from the forums until I got back from my trip to Iceland. I tend to get depressed reading some of the posts and I didn't want anything to ruin my chances for a fun trip, I'd been planning it for over a year before I got real sick. Well I made it through ok, I had red swollen puffy eyelids the entire time, but other than that and the usual joint and muscle pains I was able to enjoy myself. It was an incredible place to visit!

Right before I left I had visited my rheumy, hoping with a positive lip biopsy I would get an official diagnosis! She said just cause it was positive only means I could have it not that I do! She told me she doesn't still believe I have it because nothing shows in my blood! And sent me for more bloodwork (which is still negative by the way). I asked her about Plaquenil, she reluctantly agreed to prescribe it to me if I wanted it, provided I had permission from my eye doctor. I asked her if it had any preventative effect as far as stalling the process of eye and mouth dryness, or keeping it from getting progressively worse, she told me no.

My eye doctor said he was fine with it, that I would need a yearly eye exam, and one thorough exam before starting. I told them I would wait until I was back from Iceland to make a decision on it. Well I am back and I'm not sure what to do? I have research plaquenil and it's preventative measures, and I am finding conflicting info. Some say it can help prevent worsening of dryness and inflammation damage and others say it's not the case.

Was wondering what everyone's experience with plaquenil is and if you think it is worth while to take even if my joint pain is not seriously hindering me at the moment. My dryness is far worse than my joint and muscle pains. But if there is any prevention of symptoms with the use of this drug it would be worth it in my opinion.

thanks so much for your help.

Carebear

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Re: Plaquenil
« Reply #1 on: January 26, 2019, 07:40:38 PM »
Hi Judes,

I took Plaquenil for about 6 years and did not experience any improvement in my eye dryness.  My mouth has luckily never been a problem.  I discontinued Plaquenil because it caused unbearable anxiety. 

Restasis can in many cases help with eye dryness,  and this is something that your opthamologist can prescribe for you.

Best of luck in pursuing a diagnosis, and in receiving relief of your symptoms.  That's what we all want for ourselves and for others.   Keep in mind that my experience may not be yours.   So I suggest you give it a try and just make sure you have your eyes checked annually.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

irish

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Re: Plaquenil
« Reply #2 on: January 27, 2019, 12:47:17 AM »
Glad you had a good time on your trip. What a beautiful place to visit.

Everyone responds differently to the med. I don't know if it has helped my dryness as that is not my worse symptoms. It does help with fatigue and aches and pains. A few times I quit the Plaquenil while on extra strong meds for a short period of time. Those of us who take Plaquenil tend to begin to think it isn't helping any.....until we stop taking it for a few weeks. We sure find out how much it helps.

I have taken eit around 8 years. I don't even remember anymore. I have my yearly eye exams with the retinal scans and other testing and everything is ok. It can upset your stomach when you first start. I always take it at least 2 hours after other medications and eat a couple crackers, etc. Helps the stomach. Good luck. Irish

Joe S.

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Re: Plaquenil
« Reply #3 on: January 27, 2019, 01:57:37 AM »
With me the first dose made me blind and it took better than 6 hours before I could see again. The rheumy asked me if I would be better off blind and have lower pain. It is not a pain medication. I changed rheumy's.
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Liz D.

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Re: Plaquenil
« Reply #4 on: January 27, 2019, 02:25:52 PM »
I’ve had a very positive experience with plaquenil.  Been on it for 14 years, get my yearly eye exams and everything has been ok.  Everyone has different reactions though to drugs.  You’ll only know if you try it.

Liz D.
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Judes

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Re: Plaquenil
« Reply #5 on: January 27, 2019, 05:26:28 PM »
Thanks everyone for your replies. Wow Joe, that would be awful to go blind like that. I am assuming you never took it after that? That would scare me off completely. I'm just not sure what to do. I was hoping for some evidence that would show that plaquenil can slow down the progression of the disease. That is what I was hoping for. If it is only for relief of symptoms other than dryness I am not sure if the risk is worth it. If it actually helps slow things down I would not hesitate to try it. I have found differing opinions on this when I research the web. I will have to dig deeper I guess. But thank you all for your help.

Linda196

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Re: Plaquenil
« Reply #6 on: January 28, 2019, 03:25:25 AM »
I was originally started on Plaquenil as an agent to help wean me off high dose steroids, which I had been started on at the time of my Sjogren's diagnosis due to lab work which posed a compromise to renal (kidney) function and my doctor wanted a fast, effective intervention.

After 6 months, we had been unsuccessful several times in lowering my Prednisone from 75 mg per day, and my Doc suggested Plaquenil as an adjunct to see it it would help weaning, which it did. Over the next 6 months I was able to get down to Prednisone 20 mg per day, where I stayed until the addition of Methotrexate which further helped weaning to 7.5 mg daily which has been my maintenance dose for more than 12 years. There have been occasions when I weaned off for as long as 6 weeks, but had to return to a burst and taper for various flares, including Sjogren's, myosytis and the onset of polymyalgia rheumatica, so at this point I'm not even making an annual effort to wean off anymore. I think as far as adrenal function goes, I'm still capable of being off steroids, but from an immunological stand point, it's not happening.

In that time, I've faithfully had my 6 month eye exams showing no adverse effects, and am blessed to have an opthomalogist who's wife shares some of my conditions and also takes Plaquenil, so he's very aware and up to date on it's potentials and cautions.

I'm not sure if this makes any point regarding your initial question about slowing of progression, but I know it's effective, for me, in the prevention of  accelerated inflammatory activity without (or with reduced) steroids.
« Last Edit: January 28, 2019, 03:27:57 AM by Linda196 »
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markt

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Re: Plaquenil
« Reply #7 on: January 28, 2019, 05:50:14 AM »
I have been on it for roughly a year and half with no noticeable improvement that I can attribute to my oral ocular and skin dryness (from Plaquenil alone).  The only thing that has helped on that front is Rituximab, Cevimelline, Restasis, and Lacriprep (a trial medication). 

I should mention that I do not have the typical Sjogrens antibodies (SSA SSB), but rather SP-1, CA-6 and TPO antibodies with a low C-4 compliment. 

I say that, because we are all different flavors of autoimmune (even if under the same Sjogrens umbrella)... so it is useful in mentioning our clinical picture when seeing if therapeutics may be relevant to others.

-  Mark

Kathy57

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Re: Plaquenil
« Reply #8 on: January 28, 2019, 09:44:19 AM »
Jude?s,

Plaquinil can take a few months to kick in but it has been well worth it to me.  It has helped me with the horrible fatigue and with pain.  It took awhile for me to learn how to take it.   For instance, I need to take it with food, or it upsets my stomach.

Am I cured?  No.  But I don?t want to ever go back to the way I was.  I think it might improve your pain.  It might be worth the risk for you, but you will never know until you try.  Best of luck with your continued search for a diagnoses and treatment. 

If you have a positive lip biopsy then I think you have Sjogrens.  What is your doctor waiting for?  Maybe you need a new doctor?

Kathy
Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer

Gorn

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Re: Plaquenil
« Reply #9 on: March 12, 2019, 04:47:17 PM »
I had a love/ hate relationship with this drug.

When I was on it, it definitely improved my Sjogren's symptoms, and had the bonus of significantly alleviating my dry eye symptoms.

But over time plaquenil made me feel quite ill with a different set of symptoms.  I really wanted it to work and I tried three times to slowly titer up the drug in my system.
The third trial had me in the emergency room twice.  I felt like I had been poisoned.  I cannot describe how bad it made me feel - I really thought I was going to die.

An ER resident pointed out to me that if a drug makes you feel like you have been poisoned, there is a good possibility it is poisoning you ...

Short story I don't take it anymore.

I wish the medical community were able to tease out what mechanism of this drug was beneficial and what was malign. 
I continue to hold out for a more targeted systemic Sjogren's medication. I know some are in the works, and some are in human trials. 
But I continue to slowly get worse ...

Skylar

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Re: Plaquenil
« Reply #10 on: March 13, 2019, 10:21:08 AM »
I used to take Plaquenil but I had been on it for so long that my rheumatologist felt I had reached my limit and took me off it. When I first started taking it, my eye dr felt it was extremely safe and encouraged me to take it.  Over time the warnings for going blind has increased. Originally I was told if they saw any changes in my eyes that stopping Plaquenil would cause the changes to reverse to normal. Then research came out saying that damage wasn?t reversible. A few years later I was told side effects may continue which concerned me. It does seem to be dose dependent so people taking much larger doses for Malaria are more at risk for blindness.

I used to see an optholomogist twice a year so I could be tested on the special machines. Not all eye drs have this equipment so you might need to change your dr.

I did have vacations from Plaquenil when I was on other drugs like Methotrexate. The problem with most of these drugs is it?s not exactly clear if it?s helping or not. When you have an infection and take an antibiotic you know in a day or two if it?s working because either the infection clears up or it doesn?t. I did think it was helpful but it didn?t help my dry eyes or dry mouth. And it didn?t stop other autoimmune diseases from developing. Frankly I got more help from changing by diet but even a change of diet isn?t a cure either.

I would still give it a chance but I wouldn?t take it for the rest of your life.

SjoGirl

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Re: Plaquenil
« Reply #11 on: March 13, 2019, 01:57:24 PM »
Oi, your doc is a stickler. I was diagnosed with SjS without a biopsy, went to Hopkins and got a second opinion and because my lip biopsy was negative was told that I had undifferentiated connective tissue disease. I was told the only difference between UCTD and SJS was that UCTD sometimes goes into permanent remission.

The Hopkins doc then told me Plaquenil was the treatment for both so I started on it. I developed multiple side effects that could not be lived with so went off of it. I tried a second time, with the same result, so can't take it.

I am on Imuran, low dose, which has worked wonders. That said my doc, not at Hopkins, added Celebrex for pain because I now also have sero-negative RA (proved as a result of sonograms on my hands).
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vrystaat

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Re: Plaquenil
« Reply #12 on: March 13, 2019, 06:42:22 PM »
I have been on Plaquenil for over 20 years. No side-effects, but it really didn't help me. Two years ago, I started getting nightmares. So the drug was stopped.
But I was still unsure if the drug was giving me the nightmares, although my Ophthalmologist said that it could happen.
So two months ago, I started again with only one tablet per day, not the usual two.
The nightmares came back within a week, and boy, were they frightening.
So now I am sure that the drug can cause nightmares.
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SjoGirl

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Re: Plaquenil
« Reply #13 on: March 14, 2019, 11:31:49 AM »
FYI nightmares, really terrible ones, were one of the side effects that I had when I took plaquenil.
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Gorn

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Re: Plaquenil
« Reply #14 on: March 15, 2019, 03:35:15 PM »
I had extremely weird, disturbing dreams while on Plaquenil.