Hi everyone. I’m still in my first month since diagnosis. I had my follow up appointment with Rhumatologist yesterday. I feel very dismissed and confused. I had adverse reaction to Plaquenil (rapid heartbeat/allergic reaction to which they told me to take Benadryl which I had to laugh b/c that makes my throat close up so I had to just ride out my allergy). I’m supposed to start prednisone tomorrow. I’m typing this at 4 am because I had such an awful headache yesterday I took excederin. I haven’t taken it in years, but it was always what worked best. I’m experiencing same issue as Plaquenil; rapid heart rate, shakiness, inability to sleep. I know it contains caffeine, but feel its just that I’m responding negatively to anything I try! I’m terrified to start the steroid for fear of what it may do to me. My conflicting dr opinions problem came from this: when I had my pre-Plaquenil eye exam, the eye doctor stayed my mucosal membrane was significantly thinner than normal (and pretty standard for lupus). I told him I feel no “dry eye” symptoms. He recommended eye drops twice a day to prevent what could become a significant eye issue in the future. I asked my Rhumatologist which OTC eye drops were preferred and when I told him what the eye dr said, he told me that if I don’t have symptoms, don’t take anything because artificial tears can “wash away” so to speak the good mucus I have left and we want to promote and preserve that. So which specialist it right?!
I know that you are afraid...we were all there and many are still there. The first year is by far the most frightening. Unfortunately, it is going to be trial and error initially. Doctors are going to start with the mildest meds to get your condition under control, and Prednisone is one of the most common and most useful meds that has worked for me. I am not a candidate for Benlysta or any of the new meds, so I am stuck with the old fall backs. Luckily, I have had some relief, mostly in the case of "fog", but I will take anything over what I had.
As far as your eyes, I tend to go with what the "specialist" tells me. I use Replenish drops, medium at night for Sjogren's and it does seem to help. I thought I had itchy eyes due to allergies, and that still could be, but because I use them at bedtime, my eyes being closed seems to help with the moisture.
I know you are frightened and you are going to have ups and downs this first year, but keep asking questions and know that at some point you will find a happy middle (or as close as you can).
Hugs,
DeAnne
I went off Plaquenil 14 months ago after being on it for 2-1/2 years. I had just gotten my second pair of glasses and new contacts since being on it.About a month ago I started noticing that I couldn’t see the letters to read a book, do bills, signs while driving were blurred…I went to the eye doctor and my eyes had returned to where they were before plaquenil. While you’re suffering, search for the right doctor. I finally got smart and have an appointment at The Lupus Center of Excellence. It’s hard to find the right doctor but you feeling well is very important. I do recommend listening to the specialist first. Prayers for answers and healing! 
Hi Kelly
I understand your confusion - you have conflicting advice from two different specialist. Which do you listen to? You have to consider each specialist - does your eye specialist sound like he understands lupus? My eye specialist understood plaquenil and lupus when I first told him. My Rheumatologist respects my other specialist, but lupus affects all of me. You'll have to trust your instincts.... Perhaps talk to your pharmacist about the other side affects you're experiencing? Take half the dosage at first?
Please let us know what you decide...
Hi
Is the eye dr you are goin to an optician or an opthamologist?? I had eye issues before plaquenil so I ca'nt blame them on the plaquenil. Plaquenil works great for me. My mouth sores ar gone, thankgod. All my drs are on the same page They are actually in the "same group" So no matter who I go to they have access to all my records by a push of a button. I take eye drops ( a prescription) for eye pressure. They only allergic reactions I have are to MOST antibiotics, some are Critical reactions. I started on 2 plaquenil, went to 3 and now I'm back to 2. I guess you have to trust your drs or find another one. This disease is very unpredictable and the answers are not really there, I believe. Trust your instincts. You have to learn to trust your body, I take my blood pressure every day.
Try to think positive.
Cindy
Freightliner,
I actually go to an ophthalmologist that specializes in Retinal issues. I asked for the referral from my Rheumy as I figure that as she specializes in Lupus, the doctors she sends her patients to also understand the effects of the meds of Lupus patients. This was absolutely the case. It wasn't about my prescription on my glasses etc..., it was a comprehensive look at the entire eye and retinal system. Good, BTW :)
DeAnne
Hi whathappensin vegas
Some people think that an optician is good. I wanted to make sure you were going to the right"guy" I guess thats the mother in me.
Cindy
Oh, I didn't for even a second think that you were questioning my choice of doctors. Sometimes things don't come across the right way on the computer.
However, you are absolutely right that many people don't know the difference, which is vast and should not be considered interchangeable.
An MD that specializes in eye issues is imperative for those of us on Plaquenile long term. It's great that you brought up the difference so others know that the Wal-Mart optician is not the right person. Again, I always ask my Rheumy for a referral because of my own belief that a "team" approach between doctors makes for a much better treatment plan for the patient.
I appreciate your concern and thanks for bringing up this important topic.
Hugs,
DeAnne
I agree with the other lupies. Next month would be a year of my diagnosis, I’m still going through trail and era/ being an experiment, that’s how I feel… I have had my remission at all, every day is an adventure. Stay in prayer and read or start u a journal of how you’re feeling, any new or different symptoms. You really have to trust your instincts and listen to your body. don’t hesitate to ask your docs about anything.
Welcome aboard:-) & I pray that u have better days…
TJ,
You will find your rhythm. And, unfortunately it is a matter of trial and error until you know what works for you. I am so pleased to see that you are keeping a journal and there are some wonderful forms at the top of the page to use for doctor visits. As my Rheumy says, most of us tend to downplay our symptoms, but without knowing everything it's impossible to find a treatment plan that will work for you specifically.
Will be praying for you and all of our new members.
Big hugs,
DeAnne
Thank you DeAnne
whathappensinvegas said:
TJ,
You will find your rhythm. And, unfortunately it is a matter of trial and error until you know what works for you. I am so pleased to see that you are keeping a journal and there are some wonderful forms at the top of the page to use for doctor visits. As my Rheumy says, most of us tend to downplay our symptoms, but without knowing everything it’s impossible to find a treatment plan that will work for you specifically.
Will be praying for you and all of our new members.
Big hugs,
DeAnne