Hi! My name is Laurie, and I was diagnosed with “skin” lupus a few months ago. My rheumy (whom I have seen only once) has me on a “come & see me with rashes” plan. Is this normal? While I have aches & pains in the joints if my body, especially arms/wrists/hands, he seemed to dismiss it when I said that it wasn’t painful, but they ached. I was not given a schedule for blood work monitoring or told to come in for any aches or pains. Is this normal too? I would think that monitoring my titer levels would be prudent but this was not even discussed. Do I need a new doctor? Thanks!
Good morning and welcome! I’ve been on this site for a while and have found it to be very comforting and supportive as well as informative. I’m glad you’re introducing yourself. I read your post and my gut reaction is, find another rheumatologist. I have SLE with skin involvement, but I don’t think your rheumatologist should take the, just see me when you have visible symptoms when you say you have aches and pains, too. Blood work, in my opinion, should be done on a regular basis. In my experience, based on both my blood tests and my symptoms, my meds have been changed. As I’m writing I’m feeling angry about your rheumatologists dismissive attitude. I’d seek a second opinion. I hope you’re feeling as well as can be today and I hope you find some encouragement in my reply to get a second opinion and more so, a different doctor. Good luck and keep us posted. (Don’t worry if you don’t get a lot of replies right away. Most of us are probably still in bed recuperating from the activities of the weekend.). Hang in there!
Good morning Laurie. I agree with Kim, get another rheumy. When I was first diagnosed with lupus I had the positive blood work, arthralgia, fatigue. I was having skin rashes, but at the time of my first rheumy appt they were not present. So she did the see you back in 6 months thing.
Growing up as a child I have always had rashes. My mother never really did anything about it. As an adult I did see many physicians, no one ever tested me for Lupus. Just treated me with creams and ointments. Sent me on my way. Just so happens that on my follow up appointment with my rheumy, I had the rash on my arms, neck, chest. She confirmed it was lupus rash. Started treatment. After a year being on Plaquenil I was still having low grade temps, told my rheumy, she disregarded it. Said it was a virus. I was also having flares in between my visits with her , I would call her office, and I was always told to go to the emergency room. That infuriated me.
I decided it was time I find another rheumy. The one I have now is wonderful! He told me the low grade temps were from lupus, not a virus. He doesn’t send me to the ER everytime I have a flare. I call the office, he always calls back the same day , not his nurse.
Sorry for a long response. But definitely get second opinion, or change docs. We have to be our own advocate. Hang in there!! Stay positive!!
I agree with both Kim and asiangirl Check into getting a new rheumatologist. I hope you find one that is caring and on the ball so to speak until then ask your family doctor to fill in instead of going to the er. Mine has for me. He is teaching himself about SLE Lupus because of me ... great guy Please get a second opinion because flares can escalate each other Take care God Bless and as I recent found out myself you are not alone Julie
Hi
Do you have a dermologist? It may be helpful. When you have a weird rash she wants me to take a picture of it and I have had many biopsys of weird spots. Do you have mouth sores. I did until my rheumy started me on plaquenil. All my drds are in the same “group” I think its important to have all drs “on the same page” Did you get diagnosis by skin biopsy? I also have lichen planus which is a skin rash. My dermo actually diagnosed me with Lupus after a skin biopsy.If you don’t like the way you are being treated get a new specialist. You have to feel comfortable with who’s treating you.
Cindy
I had a terrible rash on a Fri. My pcp is off on Fri my dermo was on vacation and my rheumy was sick. I went to an urgent care facility and 2 drs agreed it was bed bug bites, Mind you I just got back from Vegasd and stayed at the Paris, which is an upscale Hotel. Well anyway the urgent care drs put me on prednisone. Rash started to get better. Mon AM called dermo and got an appointment for 10AM that day. called rheumy and they said come right in. Long story short rheumy said allergic reaction to yet another antibiotic filled out form to get blood work done and said he wanted my dermo to biopsy my leg. Got to dermo and she said she just got off the phone with rheumy. Moral to the storyThey both told me never to go to urgent care when you have a chronic illness, go to ER.
When I first went to a Rheumatologist, the first thing he did was draw a lot of blood and made an appointment in two weeks to view the results. Then, and only then, did he treat me. He has blood work done every three months. Definitely go to another Rheumatologist as others have advised!
Hi there, sorry to hear about your diagnoses but definitely look into a new doctor. I have had to switch 3
Times because my doctors didn’t take my complaints seriously. We have to be our own advocate with this disease. Many doctors still don’t know enough about lupus so instead of learning they will brush you off. When you find a good one, they will be proactive in your care not just sit back and wait for lupus to destroy your body. Take care.
Get a new doctor!
I agree with most of everyone else...try another doctor. You want a doctor, who even though is new to you since you are newly diagnosed, you are comfortable with and have some confidence in. To me, this doctor is coming off as careless, which isn't good because things can always escalate to worse.
Best of luck to you, and welcome to the site, Laurie!!
Welcome! You have found a wonderful place to come where you can vent, ask questions, listen, or just not feel completely alone. I second every other person's opinion. Get another doctor. Are you young? It should't matter but sometimes it does. Fortunately, you will become very good at voicing your concerns and/or taking your business elsewhere if needed. And unfortunately, it is often needed, when it comes to chronic illnesses such as these. Just always remember, the doctor works for YOU. You are paying them to provide you with their clinical expertise. It is a collaborative effort. But the first step is finding a competent doctor who doesn't just want to see you when "you have rashes". That is just ridiculous. Please find a doctor with whom you feel comfortable talking with, and also one you feel is really listening to your concerns. You know way more about your body than anybody else! Sorry for the rant but that kind of "ticked me off" when you said how the doctor seemed to dismiss your concerns. Good luck in your search for a new doctor (if that is what you decide). Regardless, we will be here for you on this site. Welcome Laurie!!!
HELLO Laurie, Calm down - Breath, relax , now FOCUS - when your are having a FLARE , how you relate to it(the FLARE) is going to make the difference !!!! I have SLE ,which my LUPUS comes in all and different way's (everything- which is no fun at all ), Now i have found in these soon to be (4years ) , that the sun cause the skin to react into a rash , so cover up with a LONG SLEVEED shirt (it HELPS) . Also my doctor , which is also my rheumy doctor set me to have a skin bio and that didn't work because the rash went away , BUT that doctor gave me a shampoo thait still wash with (Ketoconazole2% twice a week - depending on your rash level / i use it WHENEVER my face is itching or when i have been outside and it is HOT and humity/sweatie ) and i buy fast lasting itch relief Cortizone10 intensive healing lotion for Eczema and dry skin original ( off brands don't do job ) , ( look for deals or sales on the cortizone it is $10+ @ Walmart the best price to me . This is only advice ( Please let your doctor know IF YOU try this - okay , Am not saying or telling you that it will work for you BUT if you do try ,hope that you enjoy it !!!!! Smile The shampoo can only come from your doctor , yes the rheumy doctor can write a script for it . Also this can be use through out the day if the itching gets very BAD , (ask the doctor or make your decision how it work) . Well hope that this helps you and BEST wishes to you and also WELCOME TO THE FAMILY < LIVING with LUPUS , hope that you you enjoy our family 24/7/365 we are ALWAYS here just log IN...Beverly L.
Hi everyone
I have SLE. had 2 more biopsys 2 weeks ago. Dermo had consultation with radiologist. Either allergic reaction to one of 3 prescriptions including plaquenil or maybe have connective tissue disease. Dermo says she can't treat where I already have a rheumy. I have an appointment with rheumy in Jan. Should I wait til jan or make an appointment sooner ?? someti,es I feel like a hypocondriac.
Help
PS Sorry, I know this isn't the discussion.
Cindy
just make an appointment sooner. no need to feel a certain way-- IT'S YOUR HEALTH. and better to figure things out sooner rather than later!
freightliner said:
Hi everyone
I have SLE. had 2 more biopsys 2 weeks ago. Dermo had consultation with radiologist. Either allergic reaction to one of 3 prescriptions including plaquenil or maybe have connective tissue disease. Dermo says she can't treat where I already have a rheumy. I have an appointment with rheumy in Jan. Should I wait til jan or make an appointment sooner ?? someti,es I feel like a hypocondriac.
Help
PS Sorry, I know this isn't the discussion.
Cindy
Thanks Lynn. I just wanted someone to agree with what i thought. I didn’t think to ask when I was on the phone with my dermos nurse. I think I have a great team of drs. My neuro wanted me to go for sleep study. I am doing that tomorrow night. Fri I go to my PCP for the cough I have had since march.
Thanks again
Cindy
Hi Laurie, Like you, I am diagnosed with skin Lupus, SCLE. I do not have SLE, for that I am grateful. I was told that less than 3% of people with SCLE develop SLE, so that's positive. I too was diagnosed about 3 months ago when I went to a dermatologist for the first time in my life. I've always been extremely healthy and have had very few medical issues at all. About a year ago I developed redness on my forehead and cheeks, though not unsightly since it was not very red, I knew it wasn't right and my doctor wasn't sure so she sent me to a dermatologist. the dermatologist suspected SCLE, but didn't confirm it until after he got the results from a couple skin biopsies. I have since been prescribed Hydroxychloroquine (generic Plaquenil) that I will take forever. I also have to apply sunscreen to my arms and face/neck every single day year round. I understand that the drug is actually a disease modification drug and can take up to 6 months to have a noticeable effect. I do notice the sunscreen helps, without it the redness is quite a bit worse than with it just with a little sun exposure. I typically now wear a hat when outdoors to minimize sun exposure. I've decided that in the general scheme of things, my lifestyle changes are minor and I can deal with it, just new habits to develop. I'm a very active person and I refuse to get down about it or hide out. Just inform yourself, listen to people on this site because these people have lived with it for years. Also remember to take any advice carefully and find a good doctor who understands and is forthright, knowledgeable, and caring. Feel free to send me a message if you ever need to talk.
Yes Joe ! ,those are some very encouraging words. This has been a comfort zone for me now 4 years in Feb. and it is great !!! Meeting people from all parts of the world that live the way you do (at time's ) , and not having to hide just being sick and in the bed , and anything else that you can name , REALLY make this LUPUS stuff easier to deal with , I ENJOY it here , (When am able / Not having PAIN ). Also i have SLE and the red spots that you are having is the Butterfly rash and what you are doing is great . To help manage this a little is DON'T STRESS !!!! , also i found that Cortizone 10 .1 /2%(for exzmcea) mispelled is VERY GOOD -it works very quick and the itching stop fast , Walmart has it and the price is better than other stores( but look for coupons ) . Well Wecome to the family , Living with LUPUS and hope that you enoy the moments here withUS , take care and best wishes..Beverly L. P.S. SLE is the pits and Plaquenil is not that Bad it does take time for you to feel the differences , BUT it works and i am NEVER going to give this med. up .....
Joe said:
iH LauLirie, ke you, I damiagnosed with skin Lupus, SCLE. I do not ahve SLE, for that I am grateful. I was told that less than 3% of people with SCLE develop SLE, so that's positive. I too was diagnosed about 3 months ago when I went to a dermatologist for the first time in my life. I've always been extremely healthy and have had very few medical issues at all. About a year ago I developed redness on my forehead and cheeks, though not unsightly since it was not very red, I knew it wasn't right and my doctor wasn't sure so she sent me to a dermatologist. the dermatologist suspected SCLE, but didn't confirm it until after he got the results from a couple skin biopsies. I have since been prescribed Hydroxychloroquine (generic Plaquenil) that I will take forever. I also have to apply sunscreen to my arms and face/neck every single day year round. I understand that the drug is actually a disease modification drug and can take up to 6 months to have a noticeable effect. I do notice the sunscreen helps, without it the redness is quite a bit worse than with it just with a little sun exposure. I typically now wear a hat when outdoors to minimize sun exposure. I've decided that in the general scheme of things, my lifestyle changes are minor and I can deal with it, just new habits to develop. I'm a very active person and I refuse to get down about it or hide out. Just inform yourself, listen to people on this site because these people have lived with it for years. Also remember to take any advice carefully and find a good doctor who understands and is forthright, knowledgeable, and caring. Feel free to send me a message if you ever need to talk.
Hi, Laurie, my son was diagnosed with cutaneous lupus about two years ago. After the initial outbreak, he hasn't had one since. How are you doing? Any updates?
It's important to realize that most people on the site have SLE, which means that they have many symptoms and challenges that you may not experience, as many patients with cutaneous lupus do not ever progress to SLE.