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Old 04-17-2009, 10:50 AM   #1
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rosie13 HB User
Angry Newbie needs help Scared to Death

HI everyone, I am 52 years old and recently diagnosed with Cutaneous lupus. For the past 8 years , I have been getting the butterfly rash when I am out in the sun. I also have a Positive ANA speckled and a positive SSA. Everything else good.So my rheumie then decided that he wasn't totally convinced and at the time I wasn't either. But now I have more symtoms than 8 years ago. Sometimes i have fatigue and my fingers get stiff and I feel like I am in a slow motion I finally went to a good Dermotologist because my face was just getting worse and all the other ones just diagnosed me with Rosecea and maybe I had a touch of lupus .So they gave me lotions for both .Which didn't do anything.So when I went to the new Dermotologist he did a biopsy which showed Cutaneous lupus. My rheumie was very surprised, and i was kinda surprised but more scared as to " What do we do now ". I've taken Mobic in the past . Now the rheumie wants me to start on Plaquenil , Am scared to death !!!!!!! Is it true about that it can affect your eye sight ? Does it really make you feel better ? And also what sunscreens are the best to use ? I kinda feel relieved that finally somebody has solved the problem so I can better take care of myself , but I am scared.Thanks.

 
Old 04-17-2009, 04:28 PM   #2
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tal3064 HB User
Re: Newbie needs help Scared to Death

Take the Plaquenil. It does miracles for fatigue and pain. I only have discoid lupus but with all the other effects. Terrible fatigue and aches. After much testin and discussion we decided to try Plaquenil. I feel so much better.
Good luck.

 
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Old 04-17-2009, 07:42 PM   #3
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Re: Newbie needs help Scared to Death

Rosie, hi & welcome. I was also Ro-positive, became very photosensitive, and ---AND HERE'S THE GOOD PART---have been helped a lot by Plaquenil. I had a horrible time getting a Dx, despite many years of pain, fatigue, rashes, anemia, GI & urinary problems, migraines, neuro-like tingling, weight & hair loss, etc.

My local specialists were DUDS. By the time I realized I had to look elsewhere for help, I'd already read hardcovers borrowed from the library. For a *very reassuring* discussion of Plaquenil & eye toxicity, I strongly recommend you borrow Dr. Daniel Wallace's lupus hardcover. (Another good bet: Dr. Robert Lahita.)

Because I'd done that reading, I had no fear of Plaquenil. I have my eyes tested twice a year, and have had fine results on the twice-yearly visual field tests (& the usual standard ones as well).

Anti-Ro patients are believed to be very photosensitive. Rigorous sun precautions (incl. hats with brims, long sleeves & trousers) are a must for me; although I hate it, I do it---and it's helped.

I hope there's some reassurance & something helpful to you in the above. Post more when you can, OK? Meanwhile, sending my best wishes, Vee

 
Old 04-18-2009, 04:17 PM   #4
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Re: Newbie needs help Scared to Death

Hi Vee,
Thank you so much for the encouraging words. I already feel much better. Am going to go to the library and get the books that you recommended. It's so nice to beable to communicate with people that have experienced or are experiencing very similar issues. I too went to 4 Rheumies before I finally found one that is on the same level as myself. Even my PCP said I had Rosacea and that it was a fluke that my ANA was positive but because I wanted to make I insisted to go to a Rheumie, and I am so glad I did. I've learned so much from this forum. It appears from most of the replies that everyone that is on Plaquenil or has been on it , has claimed that it has helped. I sure hope that it will help me also. Also my Rheumie wanted me to start out on 1/2 pill a day for a month , because he said since i am allergic to Bactrim which is a Sulfa antibiotic , that plaquenil has some kind of sulfa , but not the exact same thing . Have you heard anything about this? Do you recommend any sunscreen ? I've read article's about Mexoryl that is used in Europe , have you heard about this ? Lately I've been using Neutrogena Ultra Sheer SPF 70 with helioplex , it seems to be helping. Well Vee , Thanks again , and I will keep everyone informed. Rosie

 
Old 04-18-2009, 09:47 PM   #5
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Re: Newbie needs help Scared to Death

Hi, Rosie! I have SLE and FMS and a host of other things, but I am on Plaquenil and have a history of severe reactions to sulfa meds. I also have a host of other drug sensitivities (steroids, AD's, pain meds, statins and some heart meds) so I understand your concern. I currently take 300 mg Plaquenil a day and it has helped me more than anything I have tried in the last 10 yrs. I do go every 6 mos for an eye exam and so far so good. No changes in my eyes. I was apprehensive about taking Plaquenil also, but I am glad I could tolerate as I feel it is making my health problems much more tolerable.

 
Old 04-19-2009, 09:21 AM   #6
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Re: Newbie needs help Scared to Death

Rosie, not sure what your reaction to Bactrim was... Was it skin? I honestly don't know anything about hydroxychloroquine having a sulfa component---but then, I'm just a patient, not a dr. or pharmacist.

I have read that a small percentage of people have skin reactions to the generic ( = hydroxychloroquine), while fewer do to the brand-name ( = Plaquenil). I think Dr. Wallace covers this, so hopefully you've tracked those hardcovers down. But if your skin erupts (hope not!), you have to quit the med PDQ. I think some drs. start you at half-dose, then go to full-dose if everything looks OK. Also, I think some drs. prescribe only the brand-name, since it may have lower odds of skin reactions.

I used Cellex-C on my face (SPF over 30). I don't even bother with screen on my body, as it ruins my clothing. BUT I live in the northeast, AND I avoid midday sun (meaning go out but get right back in very quickly). I bet there are lots of sunscreens that could work for you, actually, you just have to experiment. I tried several on my face before I found one that my foundation & powder adhered to! I was de-laminating with the first few I tried!

Proper clothing & hats are essential, too. Look for hats with good-sized brims. Look for clothing of tight weave, with long sleeves & legs. And there are companies who make clothing of fabric that has SPF in it.

Glad you found us here! Keep us posted, when you have the time. Warm wishes, V.

 
Old 04-20-2009, 09:59 AM   #7
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Re: Newbie needs help Scared to Death

Hi Tal3060,
Thanks for the encouraging words . I am going to have my prescripion filled today , so I will keep you all informed.
Rosie

 
Old 04-20-2009, 10:16 AM   #8
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rosie13 HB User
Re: Newbie needs help Scared to Death

Hi Vee,
I used to take Bactrim for urinary tract infections and then one day when I took it i broke out in hives all over my body. I then stopped taking it and the Dr. prescribed something else. Then once again , i tried taking it and again it happened but even worse. So since then I haven't taken any Bactrim . So I pray that I won't be allergic to it. Today , am going to go to the library after work to get the book by Dr. Wallace. Do you know what the Title is or is it Titled Lupus ? Also concerning the suncreen , I sure need to find a really good one, because of my job I am outside for awhile in mid -afternoon and what I have been doing is hiding under big trees . Thank goodness that the weather has been cloudy most of the days and today it is going to rain . Also , I think that I am going to ask for the Brand of Plaquenil , just to play it safe.Well , I'll keep in touch and thanks for all the encouraging suggestions and words, it sure gives me alot of reassurance.
Rosie

 
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