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Plaquinil started but don't know why exactly

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Sjogren's Syndrome
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Posted 2/13/2016 3:40 AM (GMT 0)
My Rheumy wanted me to start on 200 of plaquinil BID so see if it helped any of my systems. Within a couple of weeks I noted less joint pain and less fatigue, but it only lasted a couple of weeks before reverting to the chronic joint pain, fatigue and dry eye.

Not sure if I am on a high enough dose. What should the plaquinil trial tell me? Do I need higher dosage? I have not had the lip biopsy as they wanted me off all antiiflammitories and that was just not possible due to the widespread pain. The biggest pain now is hip bursitis (trochanteric and ileopsoas) and extreme fatigue.

I had read it can take months to see results from plaquinil, but I saw results almost immediately...not sure what to make of that. Tried an oral coarse of prednisone this week and it made my fatigue and bursitis pain MUCH worse...almost UNBEARABLE.

Just looking for advice. I was diagnosed with Meioblomin Gland disease and blepharitis on my baseline plaquinil eye exam. Also have been having a lot more palpitations. I have been being treated for sero-negative Lyme Carditis since November, and even that treatment with Azithromycin, Ceftin and herbals have done very little. Still off work.
Posted 2/13/2016 3:57 AM (GMT 0)
Your rheumy is treating you in a very traditional manner, using Plaquenil as part of his diagnosing. Generally they do blood work after a few weeks before they increase the dosage - plus it often takes 2-3 months before you will see any improvement.

Sometimes an immediate result is really a kind of placebo effect where we relax a little at finally being taken seriously.

I'm assuming the rheumy has you scheduled for follow-up appointments -- if not, you need to get on the Drs schedule and discuss your concerns.
Posted 2/13/2016 3:12 PM (GMT 0)
Thanks Lynn, I actually have an appointment to see my Rheum on Monday. Today I actually feel pretty good (which I will take after complete misery this past week).

Do people with SS have "flares"? I am not sure what I have experienced this past week. How does the response to plaquinil help determine what the primary illness is? I have read that it can be used for SS, Lupus and RA...so not sure how it helps to narrow the diagnosis. All of my labs have been 'normal'. Thanks in advance.
Posted 2/13/2016 4:17 PM (GMT 0)
Yes, Sjogren's patients have flares - periods where the disease is more active.

The 3 diseases you mention do all generally respond to Plaquenil -- but similar diseases, like Fibromyalgia, won't necessarily respond.

Keep note of all symptoms, how long they last, etc. for the Dr. It's like a murder mystery for the Dr, s/he needs ALL possible clues to narrow in on the culprit!
Posted 2/19/2016 5:24 PM (GMT 0)
You need to get into your eye doctor as soon as possible plaqeunil can effect the eyes and you need an eye exam as soon as possible. Make an eye doctor appointment, I can't urge this enough...Plaqeunil can effect the eyes and you need to be monitored every six months while on this medication...
you can look up side effects on www.drugs.com
Some people don't have problems with this med and some people do...best to be safe...
Posted 3/30/2016 3:57 AM (GMT 0)
My eyes were immediately affected after first course but helped me immensely.
Visual problems so had to stop.
Posted 4/13/2016 2:56 AM (GMT 0)
my six month followup with the eye doctor is in 2 months. I don't think I am seeing changes warranting an earlier visit. The fish oil he prescribed (High DHEA and High EPA) seem to be helping as my eyes seem to be expressing the clogged gland material.
Posted 4/15/2016 12:34 AM (GMT 0)
So very glad your keeping up with your eye doctor visits, hope the plaqeunil is helping you!
Parley also helps the eyes...it's natural...
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