Hello all. I was recently diagnosed with lupus erythematosus and am now waiting to see a rheumatologist in a month. My PCP prescribed hydroxychloroquine. I began with 200mg/day then increased to 400mg/day 2 days ago. Since increasing the medication the tissue all around my eyes is very swollen. I read that this is a common side effect/allergic reaction. Has anyone been through this? Does anyone know if I should completely discontinue use until I talk to my PCP tomorrow or cut back to 200mg for today? Does anyone know if this means this medication may not work for me? Any information is greatly appreciated! Thanks.
Hi Jen. I would follow up with your PCP or better your rheumi if you can get to one the sooner the better. I started the hydroxychloroquine slowly like you did; 200mg/day then increased to 400mg/day. I was told I could take all 400mg at one time, but I still take 200mg in the morning and 200mg at night. I have been on it for over 3 years now. I am on a long list of meds now, so I can't say for sure if it really makes a difference for me or not, but I have been told it absolutely does prolong the life of lupus patients. I did not notice any reactions to the hydroxychloroquine when I started taking it. From what I understand it can take up to 6 months to work in your system and it is considered very safe. Every person is different. I saw the opthalmologist recently (which is very important due to retinal toxicity - which can very rarely develop after long term hydroxychloroquine use) and he stressed dry eye in lupus patients. Something else which may be an issue for you with your eyes to consider this time of year may be allergies? You know best how you feel and if you think the hydroxychloroquine is the cause then I think I would stop taking it, but if not I would stick with what the doctor recommended and call first thing tomorrow. Good luck.
Thank you very much for the information. Do you suffer the skin rashes? Since you have been on it successfully for some time has it helped to control the rashes? It is some ride isn't it! Again, I appreciate the info and good luck to you as well!
Jen
How much do you weigh?
Hi jen, I take hydroxy chloroquine too, the swollen eye area might be unrelated. I notice strange things happening to my body because of the lupus, that has to run its course. I imagine our bodies are constantly under attack so we only see the end result. Talk to your doctor and plan together about your medication.
That would be hard call but I think I would stop if you can't get in touch with your DR I didn't get that reaction. Maybe someone will give you better info.
Take care.
Cindy
I would not stop the meds until you see the doctor. It takes a long time for it to kick in and it protects your internal organs. I have been on it for years and it does also help with the skin rashes. My eyes are very sensitive to allergies and they are swollen right now too. just take 200mg in the morning and the other 200mg at night.
Good luck!
I do get rashes. This all started for me with a rash actually. I was first diagnosed with parvovirus and about a year later with lupus. The full body rash from the parvovirus went away after about a week. Since then on and off I've had the butterfly rash on my cheeks. Honestly, I think I may have had that on and off my whole life and never noticed it. For the last few years I've had weird rashes. Some fairly significant. I have found a very good allergist and dermatologist who I consult yearly and follow up when I have a particularly unusual occurance. Twice in the last year I have developed unusual acne on my chin, which I've never had before. The dermatologist was very good at prescribing a topical antibiotic to treat this. And once another all over rash the allergist prescribed high dose antihistimines to treat. I have found that having a good list of specialists at your disposal is extremely important. After the first year with lupus I seemed like I had seen just about every type of specialist there was, although I'm sure I'm still nowhere close and I'm very thankful for that. Because lupus can attack any part of your body at any time it can be very unpredictable. I would suggest requesting copies of notes from each doctors visit every time you go, and then keeping your own records at home. Also seek out recommendations for good specialists in your area that take your insurance and set up appointments to get fully evaluated and establish a baseline.
Jen said:
Thank you very much for the information. Do you suffer the skin rashes? Since you have been on it successfully for some time has it helped to control the rashes? It is some ride isn't it! Again, I appreciate the info and good luck to you as well!
Jen
I finally saw the rheumatologist, all the tests she ran for lupus were negative so she is waiting on all of my lab, biopsy etc. results from the dermatologist to review. In the meantime she is referring me to an allergy specialist. I am on the hydroxychloroquine and limited to 200 mg per day as I had a bad reaction to 400 mg per day. In the last 4 days I have blown up in rash all over, my face is swelling and I now have what looks like very dark bruising on the backs of both legs. I am seeing my PCP this afternoon, he is new to me but his CNP is who I have been seeing. Does any of this sound familiar to any of you? None of the RX creams or ointments I have work at all. Hoping for some form of relief!
My body doesn't like most meds so I started on the same medication very slowly (100 mg every other day for about 3 weeks). Then 100 mg every day for about 3 weeks. Then 200 mg every other day for about 3 weeks. You can see what the pattern is. I seem to tolerate it by introducing it slow. Also found that taking it at night doesn't make me dizzy.
Thank you, that is very useful information. PCP took me off it entirely today, until I can have it prescribed by the rheumatologist. For now he prescribed prednisone 60 mg to start and taper off for 2 - 3 weeks. He also advised getting a second opinion from the rheumatology team at UNM Hospital in Alb., that is closest to me. So that is the plan! Hopefully the prednisone will help while I get all of the foot/paper work done. I have a very low tolerance for many medications as well HappyMe and it truly seems as if the med made me much worse. I think the very slow approach is the way to go.
Jen, I am so sorry you had such a horrible reaction to the medication. I understand what you are going through. While that didn't happen to me with hydroxychloroquin it did happen when I was prescribed lyrica. Everyones bodies react differently. Lupus itself can cause various rashes. I am encouraged and hopeful for you that the rheumatologist you saw (if I understand right) conducted tests that showed negative lupus results. Maybe initial labs from your primary were wrong? Or was it that your lupus was not active now? It can be so hard to initially diagnose. When I was first diagnosed I also got a second opinion, and I have been very fortunate to have found very good doctors from very early on. Hang in there with the prednisone. It worked well for me to help with itching and get rid of my rashes quickly. I was also prescribed hydroxyzine (which is a high dose version of benedryl) and zantac by the allergist to help with the rashes....also helped with sleep. I found the prednisone did make it hard to sleep and caused weight gain....just some things to look out for. I will be sending good thoughts your way. Best wishes. Toby