Dear Friends; For anyone suffering from shingles, cutaneous lupus outbreaks or post-herpetic neuralgia!!! There is a TREATMENT! I was just given a treatment last month at the VA hospital in San Antonio, TX that is a patch that is applied for an hour, to the area that persistently breaks out. It is called Qutenza patch and is an 8% capsaicin medicated patch. They numb the area first, which is necessary because the patch would burn incredibly if not, and basically it short circuits the nerve endings that cause the pain.
I was understandably dubious about the treatment. How could a patch stop this incredible pain I was having?! I mean, this pain was like having a constant 2nd degree burn on my back for up to two weeks at a time! I couldn't even stand wearing anything but the loosest clothes and the only thing that helped was ice packs. Pain medicine did not even help, it just enabled me to be able to go to sleep, not really to get rid of the pain, just dull it for a while. This patch is a MIRACLE!!
On the way home from the hospital, the numbness wore off and my back was ON FIRE, so I will definitely ask for a Lidocaine patch to wear home the next time but I WILL do it again when the treatment wears off. It lasts an average of three months. For me, this is an incredible breakthrough and for anyone else who has this type of pain I highly recommend it! If you have suffered through the pain of constant fire on your skin, you will not be able to believe the relief of no more burning.
Since my rash was cutaneous lupus I did not develop blisters of shingles but my husband does get shingles and he has scars from all the breakouts that he has had. I can not imagine his pain since he has been suffering from it for years and I have only suffered for a year now. I have a new sense of empathy for him! So-PLEASE ask your doctor about this patch and find one who has been TRAINED or who can get the company trained personnel to come to their office to administer the treatment. It is well worth it and you will finally experience some relief without DRUGS! I hope this helps some of you out there. Docs GalView Thread
I am trying to find out what the 'normal' ranges are for the majority of the blood tests that are done for Lupus. I have some test results that were read to me by the doctors' office but they didn't take the time to explain what the ranges were and whether they were near normal, out of range, etc. It would be nice if there were a site to go to that would give a comprehensive explanation of the tests, what the results mean if they are high or low, and what it means when they are "always" out of range or "fluctuate" in and out of range along with your lupus flares. I have a feeling that some of my test results are fluctuating with my flares. I would really like a better explanation of the ranges of the results also. My hubby is a FP doctor but not real familiar with the Lupus test results so he is learning more about it along with me. He can explain alot of it to me but I like to do research on my own.
After my last rash I received a monster steroid injection in the caudal space of my SI joint through a catheter. Within 36 hours my rash was gone and my pain was down to very manageable levels! Within the week they took blood tests and these are some of the results I had: The Skin biopsy was positive. My ANA result was negative. Urine & WBC was normal, C-3 was 128, C-4 was 30, Rheumatoid-20.8, Anti DNA-1, RNP-<0.2, Smith-<0.2. These aren't all the results of course and he said they are all "borderline". I have a feeling that the cortisone injection may have affected them to some degree because I have so many of the physical symptoms and the skin biopsy and rash are positive, I have the Raynauds', the joint pain and swelling, mouth ulcers, migraines, fatigue, low-grade fevers, etc.
It will be interesting to see what the next batch of blood work will say. I am dealing with a 'flare' of two days now so I can say that physically the symptoms all kind of make sense now that I have the positive diagnosis. I have been so baffled by these symptoms for so long now that it has been so depressing! Now-I can finally forgive myself for not doing the dishes and just tell my husband that they will just have to order pizza in tonight or make mac-n-cheese with tuna for supper. It seems like my family is finally starting to be a little more understanding now when they see me walking around all hunched over, barely able to walk.
Has anyone else gone through wild fluctuations of results in their blood test results like this? It sure is good to have a forum like this to share with others. Thanks to all of you out there! Docs GalView Thread
I clicked POST before I was finished with my post! This website also includes research for medication side affects, medical symptoms, and so much more. I forgot to put the link to the website in my post so here it is:
P.S. My husband is a FP doctor and he really likes this site for those people who want to learn more about their illnesses and can handle the technical jargon. The terninology is not for the faint of heart though, it is a website set up FOR medical students and the people in the medical field to use as a resource for study.
I found a useful website that lists various blood tests and gives the definitions and normal ranges for them! This website also has a wide selection of blood test questions and gives quick answers to them. The answers are not 'lay-person' friendly, but it is more information than I have found on any other site on the web!! It was great for me just to be able to cruise through the question and read the answers. Docs GalView Thread
There is a product called Orabase Soothe and Seal that works really well on the mouth sores. It actually seals the sore and prevents it from being continuously irritated. It also helps with the pain. I think it is put out by Colgate. I use a prescription ointment for the sores in my nose (I get them all the time), called Mupiricine. It works great and actually works much better than triple antibiotic ointment.I was put on that because I get sinus infections very easily and they were trying to ensure the infections weren't due to both bacteria or fungal infections and I guess the Mupiricine works on both. I use the ointment before bed at night. I also use saline spray a couple times a day to keep my passages clear and clean. Hope this helps! SharonView Thread
Well, I guess the title says it all. I started the New Year off by getting a definitive diagnosis for Cutaneous Lupus Erythematosus. Nice way to get the year kicked off, eh? In September, I developed a tiny spot of a rash on my right lower back (around the SI joint) and my husband (who is a FP MD) and I, figured I had developed shingles. I have had back surgery at L5-S1 years ago and have quite a bit of back pain and nerve damage from the car accident and foot drop that developed because of the injury. None of that has anything to do with the Lupus but you can see why we were kind of misled to begin with. Went to the doctor several times but the rash kept getting bigger and bigger and was absolutely excruciating. It literally felt like someone was holding an iron to my backside and I was being burned constantly with no relief. OMG the PAIN! I bought like 15 gel ice packs and had to just keep rotating them because it was the only thing that cooled the heat. And believe me the skin was HOT! Finally, the Dr. referred me to Dermatology the first week of December and they did a biopsy. Well, with the holidays and all she had tried to call me two days before Christmas and I had tried to call her back but we missed each other and I missed my appointment to have the stitches removed because I was so sick (my hubby removed them with her offices ok). On Monday morning she called me before I even woke up and gave me the news. "You have Cutaneous Lupus and we want to do more tests". She asked me several questions about symptoms and turns out I have several things that point to the possibility that I may have had it for some time now. She has indicated that I could have had it for years and was actually fortunate to be diagnosed because many people suffer without a definitive diagnosis. So-that's my story. I don't really have too many questions yet. I will post them subsequently but wanted to share my story. I guess my first question is how varied is the length of time for flares such as the rashes? My first rash lasted over three months, it cleared up for a couple weeks and started coming back again on Sunday evening. It is pretty debilitating and leaves me absolutely whacked! I look forward to learning as much as I can on here and meeting others who have learned to cope with this disease.View Thread
Thanks so much for everyone's comments-it is greatly appreciated. Although I haven't learned alot about it I have a strong impression that I probably do have the SLE. I have had Raynauds phenomenon for years, have had joint pain with increasing frequency/duration for several years, exhaustion and fatigue, 'losing my breath', numbness and tingling in hands, feet and facial area, increase in migraines over the last three years and increased to up to four a week in the last six months, and many more of the symptoms that have been plaguing me that doctors just keep looking at me sideways at going, Ummm-Hmmmm... I am sure you are all familiar with it.
Needless to say, it has been very eye-opening for my husband when he has gone to appointments with me to see how I have been treated by a few of these doctors. He even reported one PA who literally walked out of the treatment room while I was describing my symptoms, did not perform any type of exam, and had all of his staff and patients calling him "Doctor"!
It has been a very disheartening road. Having a diagnosis is NOT as terrible as it may seem. I finally have an AHA! moment that I can point to and say, SEE! I am NOT crazy! I am fortunate for now that the rash is only located on my lower back and not on my face or neck. I did have a MRSA infection in my nose in August that I think is what kind of kicked off a systemic reaction in my body. I notice that my rash lasted a long time the first time, went away for a couple weeks and then I started my menses on Sunday and it came back that day and that is one of the things that can spark a flare. How about all you ladies who have already gone through the change? What sparks your flares? Those are my big questions...What are the things you do to stave off flares and then manage them to try to shorten them? I am 47 years old and fairly thin. I gained about 25 lbs this summer suddenly when they changed one of my antidepressants so that has kind of affected my tiredness. Anyway-I digress. I live in Central Texas and find that the heat of summer here is absolutely withering for me, but the mild winters are wonderful because of the situation with the Reynauds. How do ya'll handle weather and does it ever even affect how you feel besides the exposure to the sun that I am going to have to deal with?
I honestly think that I have had the systemic Lupus for a while and have just gotten the cutaneous Lupus. I have had too many of the SLE symptoms for several years for it not too have been there and just not have been there, just not been diagnosed. I think my two sister and her two daughters probably have it also and have not been diagnosed. Is there a definitive diagnostic test that they can do for the SLE? From what I have read you can have a positive ANA test and not have Lupus, and have a negative ANA test and HAVE Lupus, what other advanced tests are there. I am being treated through the VA healthcare system so try to understand that I will probably not get as advanced care as people who are cared for under an HMO or insurance. Unfortunately, as a disabled vet and with no insurance I don't have health insurance right now and probably won't be able to get any unless my husband can go back to work (he is disabled and not working right now). Thanks again for all your comments and it's great to be here!View Thread
Hi amyrose, I have incredibly dry and itchy skin but not painful except where my rash is. Talk to your dermatologist about your cleansing routine. Actually, it also has A LOT to do with how OFTEN you bathe as much as what you use to bathe. Try just taking a warm bath in baking soda, it softens and soothes the skin but shouldn't dry it out. I apply a little baby oil to my skin after bathing and rub it in real well, a tiny amount rubbed in to wet skin, then I pat dry with the towel. Don't use soap every time. Soap is very drying and you don't need to use soap that often! Just use soap maybe once or twice a week and use baking soda or only soap on those 'particular' parts that really need soap. You know - ; ) maybe just a side of the tub bath. You may want to talk to your dermatologist about getting some lidocaine topical cream or ointment for the especially painful patches but NOT as an overall application. It is not appropriate for that type of use. The dermatologist prescribed that and an ointment called Fluocinonide .05 topical ointment for my rash and it helps tremendously. Obviously-this was prescribed for ME and you should ALWAYS be asking your doctor about anything you put on your skin. Fluocinonide is a topical steroid and Lidocaine is a topical anaesthetic. Eucerine is a good OTC thick cream to ease dry, itchy skin and dermatologists often recommend it, in addition to good old fashioned petroleum jelly. Have you tried an oatmeal bath yet? It is very soothing for temporary relief. Hopefully you will find something that works. I know my rashed area of skin is exquisitely painful so, know that you have my deepest empathy. Hurts to even have clothes touch my skin sometimes so hang in there! Good Luck!View Thread