Any insight into this problem would be appreciated: I have a typical "lupus malar rash", but it's never been prominent, and has always been flat and looked liked a blush or faint sunburn across my nose and cheeks -- just a light pink discoloration. Lately, however, I have been experiencing itching on the right side of the "butterfly." It started with a very small area of itching at the base of the nose, right in the naso-labial fold, and it was constant and unstoppable. Just recently, it spread to a little farther away from the nose, and felt like a nerve that was vibrating and causing an itchy feeling. Again, nothing could stop it. Now the entire right side of the rash feels itchy, and the skin feels puffy there, like it's slightly swollen. There are no discrete welts or bumps, no hives. The skin is smooth and flat. This itching is driving me crazy, and I am constantly touching my face or rubbing/scratching the affected area. I've tried OTC cortisone creams. No help. I've tried benadryl cream. Same result. It's been going on for several weeks now. The one thing I haven't done is tell my rheumy. I get the feeling from her that she already thinks I am nuts, because I told her I was having mild symptoms of bipolarism (new to me). Everything I've read tells me that the lupus rash doesn't itch. Even when the area is not actively itching, I can still "feel" it, like a sensation of awareness of the skin in that area, which contrasts dramatically with the lack of experience of sensation of any type on the left side of the nose!
Also, I want to say here that I don't like my rheumy. I've only seen her once, by referral from two of the doctors in my PCP group. The visit was beyond disappointing. I was hoping to get some help with the pain in my ribs -- maybe an injection or something. Instead, she sent in a resident, who took a history and current complaints, after which she popped in just long enough to hand me a stack of orders for blood work and said, "See me in six weeks." Great. Another six weeks with this pain in my ribs that I feel every time I take a deep breath. Thanks for nothing.
OK, got that off my chest. Thanks for listening/reading. I waited six weeks to do the blood work. The results started coming over my fax this morning -- a lipid panel and a metabolic panel. Nothing too dramatic there. The antibody tests will take longer. I've had an ANA of 1:1280 for a few years now (homogenous pattern), but no other antibodies. Therefore, nobody has wanted to treat me for anything. So I just go on, watching the slow destruction of my joints, and wondering why I just can't be treated for symptoms rather than having to have positive blood work. My understanding is that positive blood work is inclusive, but negative blood work is NOT exclusive of disease.
Sorry to hear that your having such a difficult time. Hoping that you'll get some relief soon.
I know very little about the rash but I have generalized all over body itching. The best product on the market that I have found to help me is "Swans Clear Anti-itch Lotion" I get it at Wal-Mart. It's pretty inexpensive, at about $3.00 a bottle. I know it's not much but I hope it helps some. (((HUGS)))
Sorry you are having problems with the rash. Please tell your rhuemy or see a dermatologist. I had a similar experience and did nothing. Now I have discoid/vitiligo. Not saying this is your problem but please have it checked. Hope things work out.
Thanks for your encouragement. Just being able to vent my frustrations makes things a lot better! I'll look for the Swans Lotion that you've recommended the next time I get to Walmart! Blessings!
Flutter said:
Sorry to hear that your having such a difficult time. Hoping that you'll get some relief soon.
I know very little about the rash but I have generalized all over body itching. The best product on the market that I have found to help me is "Swans Clear Anti-itch Lotion" I get it at Wal-Mart. It's pretty inexpensive, at about $3.00 a bottle. I know it's not much but I hope it helps some. (((HUGS)))
Well, that's something to think about. I didn't want to mention the itching because it seems that I have a constant list of complaints that run the gamut of everything that could possibly be wrong with a person, including mental changes. My rheumy clearly wasn't interested in actually helping me, just testing me. She didn't want to hear about whatever is going on with my ribcage, the pain and deformity in my hands, etc. She just handed me a stack of papers for testing. What if I am negative on all the tests? I had the same tests about two years ago, and was negative on everything except the ANA (1:1280). That was with a different rheumy and I received no treatment from that one either. Now I've got a new rheumy, and she's going down the same path. Meanwhile, my condition deteriorates. I just want to salvage what I can of my body before I develop serious organ involvement. I already carry a diagnosis of chronic renal disease (Stage III). I am at the point where I think nobody is taking me seriously because I don't have the right antibodies showing up in my blood work! As I told my PCP, I am not looking for a disease, I am looking for a treatment. I really appreciate this forum. Thanks for the support.
Constantpeace said:
Sorry you are having problems with the rash. Please tell your rhuemy or see a dermatologist. I had a similar experience and did nothing. Now I have discoid/vitiligo. Not saying this is your problem but please have it checked. Hope things work out.
Rib cage pain: First, Full disclosure: I am not a nurse or doctor, nor do I have any medical training. Just my experiences as a patient, and a LOT of research. finally... I think you might be suffering from Costochondritis (http://www.patient.co.uk/health/costochondritis). I had been having pleurisy for a couple of months, and then I started having this really debilitating pain in my rib cage. I had xrays and mri's and finally ended up with a pulmonologist. He said that the pleurisy had caused so much inflammation, and initial discomfort, that the rest of my ribcage became inflamed. It lasted so long and was so horrible that we considered a nerve block. Because I have lupus nephritis, I'm not able to take big doses of anti-inflammatory meds, other than steroids. We did three steroid infusion, and they provided little relief, but eventually the pain meds were able to take care of the pain. I hope you can use this information to find a treatment plan for your pain.
Rib cage pain: First, Full disclosure: I am not a nurse or doctor, nor do I have any medical training. Just my experiences as a patient, and a LOT of research. finally... I think you might be suffering from Costochondritis (http://www.patient.co.uk/health/costochondritis). I had been having pleurisy for a couple of months, and then I started having this really debilitating pain in my rib cage. I had xrays and mri's and finally ended up with a pulmonologist. He said that the pleurisy had caused so much inflammation, and initial discomfort, that the rest of my ribcage became inflamed. It lasted so long and was so horrible that we considered a nerve block. Because I have lupus nephritis, I'm not able to take big doses of anti-inflammatory meds, other than steroids. We did three steroid infusion, and they provided little relief, but eventually the pain meds were able to take care of the pain. I hope you can use this information to find a treatment plan for your pain.
Had a DEXA scan (bone scan). Compression fracture of lumbar vertebrae and Had rib pain that was caused by osteoporosis and violent coughing from bronchiectasis (adult cystic fibrosis from secondary Sjogren's). Was given IV med (once-a-year) for osteoperosis (can't remember name). Ribs stopped breaking = pain went away because bones more stable with med. Also taking huge amounts of vitamin D. Us lupies initially have low Vit D levels (who knows why?). Only broken two ribs in the last three years and think they were old, weakly healed fractures.