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Plaquenil Question

Started by chrisr, April 15, 2012, 09:50:41 AM

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chrisr

Hi all,

I have been on Plaquenil and Restasis for 3.5 weeks now.  During that time my symptoms have been getting steadily worse.  My dryness is very severe, I have to put in eye drops every 15 minutes now.  Three weeks ago I was maybe putting in drops 6 or 7 times a day.  My Evoxac doesn't seem to work that well anymore.  I only get about 1 hour of noticeable saliva  (used to be about 3 hours).  I am now getting painfull shoulders and neck, as well as pounding headaches and fatigue is still a big problem.   Those with experience with Plaquenil could these symptoms get better after a couple more months on Plaquenil or is it a bad sign that I continue to get worse on this medicine?

Thanks
Chris

gurs

I have been worse these last 6 weeks too...think its all allergy inflammation-flare related..Im 100% drier and more miserable now than ever.
Could be coincidental with the new meds?

Some medications and supplements can make it worse, as Im sure your aware..even motrin has a drying effect.

If I were you, I would stop either the plaquenil or restatis to see if one of them is bothering you..I know I could not
tolerate restatis, but should not be giving joint pain, etc.. Plaquenil should make you feel better...not drier? Sounds like your having a flare?

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

SueAnn

Plaquenil can take many months to start working.  I was on a low dose of prednisone (I started prednisone after being on plaquenil for 2 months) for about 6 months until it started to kick in. I really didn't feel it started helping until about month 8.  I still get major flares and have to take prednisone short term to stop it.


I also remember restasis making my eyes feel dryer and itchier at first, but then it did get better.  There is also Lotromax which can help with your eyes.  My sister loves it, but I haven't had much luck with it.  Everyone is different when it comes to meds.

You should talk with your doctors before stopping your medications.

SueAnn

Sjs
LDN, Plaquenil, Evoxac, Prednisone, Restasis..
Vit B complex, calcium, Vit D
Female - 50ish

Reanne

I have been on Plaquenil for years now.  I really haven't noticed many side effects.  I had stomach issues, so I take one 400 mg dose at night.  I had recently suspected it was giving me severe headaches, so I tried to cut down the dosage, which I think threw me into a major flare.  Now, I am out because I didn't call the pharmacy soon enough and they said the doctor didn't order any refills.  I think they are mistaken.  Why wouldn't she?  I am miserable and kicking myself for trying to adjust the dosage myself.  Hang in there.  Hopefully you will figure out what works and doesn't work.  I agree sometimes short term prednisone helps.  Talk to your doctors.

Nancy60

I have been on Plaquenil for many years now with only minor side effects initially, but none now.  I tried Restasis about a year ago for a month or 2 but it burned and made my eyes more sore, dry etc...so I stopped it.  I have heard some say if you can stick with it for a bit longer than that, those side effects get better, I just couldn't take it.

Nancy

anita

I think you should give it more time.  There are very few people that get results quickly.  You are likely going through a flare of sorts.

Have you considered trying something other then effexor and ativan?  Both of these cause dryness!  You may be compounding your problem.
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

4Kids

My first few weks on Plaquenil kicked my butt. Leg pains, fatigue, you name it.

Six weeks in it got markedly better. And has continued to get better and better.
Plaquinel, Restasis, Salagen, Arthrotec, Cod Liver Oil, B Vitamins, Palafer-C, Plaquinel, Metformin, Spironlactone, Biotin

eye2dry

Hi.

My Plaquenil kicked in at 4 months along.

My dr. RX'd prednisone 20 mg to get me through till I felt better and  then I tapered off the prednisone. I was in a bad way initially with my feet, right hip. Plaquenil does not help my eyes or mouth.

eye2dry

Scottietottie

 Hi  :)

After 4 months I noticed no improvement from Plaquenil but I was on 200mg per day. My rheumy put it up to 400mg per day and it still took 2 months more before I felt like it was working. Give it time.

Take care - Scottie  :)
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Never do tomorrow what you can put off till the day after tomorrow!

bob212

I started plaquenil in January and am feeling some benefits now.  But from what I've read on here, I am lucky and that is relatively quick.  Like Scottie says, give it time.  If, after 6 months or more you notice no benefit you can re-evaluate then.

chrisr

I really hope the Plaquenill help with my neuropathy.   My hands and feet always feel like they are burning.   I am starting to get a  lot of joint pain now too.  I do seem to be sleeping a bit better now.  I can get 4-5 hours of straight sleep if I take Lunesta.  Before Plaquenill I rarely could sleep more than 2 hours straight.

topping21

For the past two days now I have been down right hurting with joint pain (knees especially).  I am not sure what is going on I sure hope it is the weather or allergies playing games with my immune system.   Yesterday I used one drop of artificial tears in both eyes and that was it, today my eyes are dry again.

I took predinose a few weeks back when I had a flare and went completly dry all over and it was horrific so I am staying away from the roids.  I cant take plaquenial so that is out of the question.  Here is hoping that we all settle down with these symptoms.

chrisr

Hi J,

You went a whole day with just using your eye drops once?   At least that is a good sign.  I am doing them every 15 minutes now.

You might try taking Mobic for pain.  My doctor gave me a script for it today.  He said it is less harsh on your stomach than Aleve or Ibuprofen.  He also told me Turmeric or Curcumin does not work for pain.   He is from India, and he said if those things really worked there would be no Indians with arthritic pain.   He assures me there are many.

-Chris

topping21

I may have to try that if this joint pain keeps up the way it has been the past two days.  I have been alternating between advil and Tylenoyl.  I have a Appt on May 2nd so my doctor can run some blood work before I go to Disneyworld in June.  I hope this joint pain cooperates with me during that week!

Chris did the Morbic cause any increase of dryness.   I seem to be hesitant with taking things because of the increase of dryness they cause.  I have a two week prescription for Sevella my Rhuemy gave me a month ago to try if I have alot of pain but am reluctant to use it because of the side effects...


chrisr

I haven't filled my prescription yet.  But I did Google it and it list dry mouth as a possible side effect.  But you might give it a try to see if it helps you out more than it dries you out.

-Chris