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craftkeeper
03-21-2011, 05:15 AM
Hey everybody,and good morning.. I thought i would check here and see if anyone has ever had blisters on the inside of their eyelids.. It started after i started taking meds but my rheumy says it a complication from the Lupus and the sun. I gues everyone remembers my first post on this.. Well he put me on Prednisone and told me it couldn't possibly be the Plaquenil. I am now on Plaquenil and Naoproxin[ which i haven't taken either for the last 3 days to try to figure this out] He put me on Prednisone and it seems to have helped with the discomfort but my yes are still red,dry and itchy and i stll have some pretty big blisters in the corner. I am on my 5th day of a 3 week course of pred.
Now i am taking extreme precaution out in the sun. Long sleeves, hat,sunblock and dark glasses. but was out for only about 30 minutes with family yesterday and it seems to have gotten a little worse again.

My pharmacist, who is a angel gave me a printout and said that i should report sunsensitivity to my doctor butcause the Plaquenil can do that. I told her i had.

Okay so like i'm sure all of us with Lupus do quite often, i started doing a little research last night and came up with something Steven Johnsons Syndrome that can be caused by Medication and when i went to the Plaquenil and Naproxsin makers sites these are rare side affects of both. It usally causes the skin to slough off also in severe cases and blisters in the eyes and mouth.. which i have had both of those..

So this may not be a good idea...but i am going off of everything except my pred and my thyroid med that i have used for years and see if this clears any. i am so afraid of losing my eyesight. I have only been on the Meds for less then a month.so im not feeling any of the benefits from it. Anyway just wanted to see if any of you have blistering of the eyes, and if it were Lupus,Med or sun related.. so confused

craftkeeper
03-21-2011, 05:17 AM
Ha, Look at all the type o's in that post.. i'm going back to bed

lovehubby
03-21-2011, 07:36 AM
I have gotton little blisters on the bottom eyelids but was told it is allergys. I am just not good on the plaquenil it makes me sick to my stomach to the point I am up all night in the bathroom so I don't use it.

craftkeeper
03-21-2011, 03:23 PM
Oh i know what you mean.. It sure is rough on the tummy.. And the wierd thing is, i never did get up to the dose he wanted me to take.. He wanted me to do 400mg a day and i started on 200 and never did go up.. I am going to hold off and see if these blisters will go away.. i have one great big on in the corner of my right eye.. it is making me very irritable to say the least. By the way what do you take.. He told me if i couldn't take this one i would have to take the other one that alot of you take. Do you have alot of problems with it?

tgal
03-21-2011, 06:39 PM
I have had the blisters but it was before I went on any drugs and before I knew about the sun. The plaq actually brought mine under control but it took several months. Plaq is not a quick acting drug. It takes between 4 and 6 months for it to really work. It is a slow process. One day you sit back and think "wow, I just realized that I haven't had those blisters in awhile".

Honestly I wasn't sure it had really worked on me until a few months ago I decided to take myself off of it after being on a year. By the time 2 weeks were over I knew why I took it. My blisters were back. My rashes were back. I got a horrible cough and began having trouble with my lungs. I know others say it was hard on their stomach but I take 1 in the morning with food and 1 at bedtime and I have never had any issue. You might want to think about it this way.. your body didn't get this messed up in 5 days and you can't expect it to be cured in 5 days.

If you do feel like stopping it please speak to the doctor first. Too many of our meds are given in doses to compliment the other drugs we take. Stopping one abruptly can cause things to go a bit haywire. Good luck!

Peridot20_Gem
03-24-2011, 08:18 AM
Hi craftkeeper,

I've read quite a few posts refering blister's on the eyes and never thought nothing of it, till actually using my brain and refering back to me always thinking i had pokes on my eye at the bottom lining of the eye and always used to rub them with a 22ct wedding ring and i have them always when it gets hotter because i do suffer with the sun.
Well i would'nt know if the meds are causing it as i've only been on plaquenil 7wks myself but i do dress how you do in the sun and it comes to something when you have no pleasure winter or summer.
Besides other affects with the plaquenil this last week i'm suffering with a rawness feeling right across the edge of my tongue and it gives off an horrible taste.

Like yourself where the blister's are concerned with the eyes it's not the meds where i'm concerned and i do get the blister's more in the summer, so it's either off my raynauds or Lupus, this disease is so mind boggling at times.

magistramarla
03-24-2011, 11:37 AM
Hi Craftkeeper,
As Mari told you, Plaquenil can take months to start helping, but it does. It also bothered me a lot at first - gave me nausea and the trots. Like you, I've never been able to take more than 200 mg per day. My body has gotten used to the Plaquenil and the MTX and they have really helped with the rashes, the psoriasis and some with the fatigue.
Talk to your doc. Perhaps you just need to give it some more time.
Hugs,
Marla

Peridot20_Gem
03-31-2011, 08:46 AM
Hi Craftkeeper,

How are you feeling now with the blister's and what your going through, as any of it eased or do you feel worse with them.

Hugs Terri x

craftkeeper
04-01-2011, 06:07 PM
Hi Terri, hope you're feeling better too. Well i started to feel alittle better with them day before yesterday,then bamm. blood blisters all over the inside of my bottom lip and i still have the big water filled blisters in my eyes. I'm trying really hard to not chew everybody in the houses head off, but this Lupus stuff sure does make one cranky does'nt it.LOL. Today i broke down and went to Wal-Mart to pick up some items and now i'm paying for it. For the last two days i have been more tired then i usually am and starting to feel a little achey or flu like, tonight i''m exhausted and flaring like crazy. The lights in that store hurt my eyes so bad and i was really sick at my stomach when i left..I told my husband i didn't know if it was the Lupus or the price of beef that did me in. LOL

tgal
04-01-2011, 06:23 PM
Hi Terri, hope you're feeling better too. Well i started to feel alittle better with them day before yesterday,then bamm. blood blisters all over the inside of my bottom lip and i still have the big water filled blisters in my eyes. I'm trying really hard to not chew everybody in the houses head off, but this Lupus stuff sure does make one cranky does'nt it.LOL. Today i broke down and went to Wal-Mart to pick up some items and now i'm paying for it. For the last two days i have been more tired then i usually am and starting to feel a little achey or flu like, tonight i''m exhausted and flaring like crazy. The lights in that store hurt my eyes so bad and i was really sick at my stomach when i left..I told my husband i didn't know if it was the Lupus or the price of beef that did me in. LOL

Hey There! Sounds like your trips to Walmart are going to be a lot like mine. I have to prepare for trips to stores just like I do if I am going outside. Cover the entire body in sunscreen (50 ), cover the face in a sunscreen made for the face (50), put on long sleeves, long pants, and a hat to make sure that all parts of the body is covered (don't forget the sunscreen on the hands. I did a couple of times and I paid for it!). Before leaving the house put on sunclasses and wear all of that into the store. People will look at you funny but it really will make it easier.

Sorry that you had such a rough day! When is your next trip to the doctor?

craftkeeper
04-02-2011, 03:34 AM
Hey tgal, yep Wally World is a nightmare. It's the wierdest thing that the lights in that store effect me so much more then any others. You will be proud of me though. While there i purchased 50 sunblock for body,face and lips. Then i came home and sewed up a new summer tote to carry it all. I wore some sunblock on my face and hands but it wasn't strong enough aparently. I didn't have a hat on because we went from 80 degree temps back to snow flurries but i did have a coat with hood.. My son in law calls it my Druid look, floor length black with a hood and sunglasses. But that's kind of a normal look for me, so not many paid attention. LOL.

But the other day when it was sunny i went to a long sleeve white shirt, big wide brim white hat and the sunglasses and people were looking at me then. We have a little country store that i purchase gas at fairly close by and the other day the owner pops out the door and yelled" Hey' what's up with the outfit? He's an elderly man who is such a sweetheart and battles llung cancer himself. After i told him what was going on, he told me he had a friend with Lupus and now every time i go there he has a bunch of new information for me from his friend..

I have a eye doctor appt this Friday. He's supposed to be very good in the treatment of Lupus eye problems. He actually has his own surgeon in the office with him. Hopefully i will be able to start the PLaquenil again this weekend. I've still got a couple of months before my next Rheumy appt. but he told me to call if i needed him and he would work me in. I found that to be true because the last flare i had i called in the evening and they got me in the next morning at 8 oclock. Beieve it or not they get in the office at 6:30 in the morning. The front desk girl told me if i had problems and would call early of the morning, they could usually work me in same day. I'm very thankful for that because i see so many people on here that has such a hard time seeing the doctor. He is quite busy being the only one in the area, but then again it's a small southern town and not like the larger citys. Anyway like everybody else i'm just on the old wait and see what's next.