I went to a Rheumatologist about two years ago before diagnosis of Lupus. Never had gone back because he wanted to put me on Plaquenil without prior to any of his ordered blood work results. I did the research on the medicine and the side effects scared the crap out of me. I brought in all of my info and results from the different Nephrologists who had done some testing outside of his realm with relation to Lupus. So did the Rheumy already figure I had Lupus? why would he prescribe that medicine without full knowledge of the results from his tests? and was anyone as freaked out about being put on this medicine and the possible side effects to their eyes?
Hi there, I actually declined this medication just today. My reasoning for this was the dizziness and headache possibilities. My dermo was OK about it, he told me to take cortisone instead, gave me a stronger cortisone cream for my non responding hands and told me to hang on to the script for the plaquenil just in case. Things would need to be dire for me to take this given my susceptibility to migraine and dizziness.
He is going to call me mid next week to see how my hands are, to give me the results of todays blood test and also to confirm an appointment has been made for me at the rheumatologist. I suspect he may pressure me at that point to take the Plaquenil, but I won't be caving. Side effects too much for me I am afraid, and also, why would you introduce more than one drug at a time? How on earth would you ever work out which on is actually working??
Very interested in following this thread.
Cheers Amanda
I was placed on Plaquenil with my original diagnosis. It worked wonders for me., within 2 weeks I went into a long term remission. I went routinely to my eye doc to monitor my eyes (I call it the shooting stars test). as soon as I had mild changes, I stopped the med (about 3 yrs). I stayed in remission for another 7 yrs. When I flared , they again put me on Plaquinil , unfortunately it did not work that time. But, I made an appointment with my eye doc as soon as I restarted and I wanted to let you know that monitoring for eye changes has improved so much since 1995. they took a computer pic of my retina and told me I would only have to be monitored yearly not every 3 months like I was in the past.
so, my opinion is to give it a try, monitor your vision, and remember that medications react differently with every person. also the new guide lines on meds have the manufacturer reveal every possible side effect. you would never take anything if you always read all the side effects. good luck.
THANK YOU BOTH SO MUCH,
I really appreciate your responses. I am also interested in following others responses to this thread as well. Good points Noahandme & flower. My Cellcept is losing it's effectiveness and now thinking a may have to reconsider and go back to Rheumy. I just should have asked him why without his ordered results would he prescribe it.
My rheumy put me on it before I had the blood work done that day. I already had a positive ana and symptoms. I ask about the med and he wanted me to take it and see how it was and follow up in 3 months. I had my eyes checked and after the first couple of weeks I had no side effects.
I started on plaquenil about three weeks ago. Other than some slight nausea the first few days, I have had no side effects. When I went to the ophthalmologist prior to starting the medication, he said it was good to have a baseline but that the eye damage caused by plaquenil is an extremely rare side effect and that the rheumys always get more xcited about that possibility than the eye docs do. He only recommended yearly exams which is what I do anyway. Meds affect everyone differently so you won’t know how it affects you until you try it. Good luck.
It can be used for its anti-inflammatory properties. I wasn't overly worried about the eye problems because while it's not common, you're supposed to be monitored by your eye doctor every 6 months so that any minor changes can be caught before damage is done.
Allmeds have side effects even ones like Tylenol and aspirin- both of which can kill you!! I find the side effects from Plaquenil to be very very very minor and it is a great tool in the meager arsenal of drugs that are available for AI diseases Eyes disorders are very very rare. Surprised though that you have renal disease and are on Cellcept and that doesn't seem to bother you
It’s for my organ involvement with Lupus. Have been on it for eight years. I was finally dx this past February officially with Lupus. My process for dx took over 10 years. Having to be on Cellcept actually DID bother me BIG TIME, just didnt mention it.
Just confused- if on cellcept for the past 8 years somebody knew you had autoimmune disease Plaquenil works to decrease the severity of AI disease - this drug can be started safely and rightfully so based on your symptoms and diagnosis without blood lab results. Compared to the other drugs used it is fairly benign. When reading about side effects of drugs you have to keep things in perspective- as I said you can die from aspirin and Tylenol- all drugs have adverse effects so weight has to be given to the need for the drug and the remote possibility of adverse effects. And with renal disease you obviously have severe disease. Whatever your decision I wish you the best in your future care. I myself have severe renal involvement but have been able to dodge dialysis for more than 30 years so far.
The doctor I saw wanted to put me on Plaquenil three years ago and I didn't want to. Last January my Immunologist wanted to put me on Plaquenil and I refused, however not 3 weeks later i developed uncontrolled inching on the palms of my hands and the soles of my feet. My doctor sent me a presciption of Plaquenil and i decided to try it. I am glad i did. I have felt alittle better and the itching stopped within 24 hours. I follow up with my eye doctor every 6 months.
Poobie,
I presented with high loss of protein from kidneys originally when referred to the Nephrologist. I had biopsy and had done my research and asked about Lupus but he said that all my symptoms didnt fit in one basket, without mention or referral to a Rhuematologist which i was not aware of that is was necessary at the time. Looking back i might have trusted him too much considering he was from the Cleveland clinic. He called it general nephritis for years. Even though when they took my history I shared about other symptoms, malar rashes, fevers that lasted very long, I also was diagnosed with hashimotos with thyroid. So now I’m getting upset thinking he knew and never referred me.
My last biopsy in February showed my condition changed to and was renamed severe Lupus nephritis. Under umbrella of SLE. Please share how you have avoided dialysis. That is my other concern. I’m sorry for the confusion. I have been struggling with putting my thoughts together. Do not know if I should connect a recently found ( within 7 months) hard lump on my scalp to that or the usual Lupus fog.
I was very resistant to taking plaquenil, even though I am a pharmacist and know the benefits. I was convinced as I knew the risks to my baby would be worse without it. I ended up having a great pregnancy, no complications (thank god). But, I was having a lot of dizziness and headaches. I figured it was related to the pregnany. After pregnancy, I realized my vision was blurry and I had a hard time focusing. I checked my eyes, fixed my prescription thought everything was great. Still continued with dizziness and difficulty focusing. Finally, we decided I was intolerable to plaquenil. Got off it and sure enough I improved. But, my fatigue and sun sensitivity got worse. S. we opted on 200 mg every other day. My pain, sores, rashes were awful. I ended up diagnosed with servos it’s and started on prednisone. Needless to say, I am doing what I can to tolerate the 200 once a day dose. Ow that the effects of prednisone have worn off, I have my patchy skin, pain, and sores back. To me, I would do what I could to tolerate it because the benefit of the drug is greater than the risks. That’s how I try to decide. My aunt nearly died when she was 39. I am 38. Trust me, I have researched it ad nauseam. If you can tolerate it, it can help tremendously. Just my two cents.