Lupus or hives
Hi I have recently seen a rheumatologist for the first time after symptoms that I thought may be lupus. I keep getting out on antihistamines and steroids. The lumps, rash and joint pain reduces for 3 days then I have a big flare up that’s persistent. I have not had a day without symptoms for nearly 5 months now and I am exhausted.
The rheumatologist told me that my ANA is negative although pathology have said it’s positive and crp has been consistently elevated. I have 3 different types of rashes, one of which I agree is hives, but the other two are not.
I am at a loss as to what to do. Any advice or help would be very much appreciated.
Current symptoms:
Joint swelling and pain (knees, hands, wrists, elbows, feet and ankles).
Headaches
Flat ringworm like rash (darker)
Raised coin shaped rash (not itchy)
Hives (itchy)
Facial swelling - eyes and cheeks and chin, sometimes lips
Increased tiredness
Struggling to find words
Forgetting everyday things
Chest pain that comes from the back
Feeling flushed
Night sweats
Currently taking:
37.5mg steroids (on 6th day) to be reduced to 25mg for a week then 12.5mg for a week the 12.5mg every other day for a week.
20 mg Zyrtec in the morning
25mg phenergan at night (to replace 20mg Zyrtec as prescribed as it helps me sleep)
Antacid
I don’t get the malaria rash specifically as seen in pics but the swelling and rash does appear across the cheeks nose and chin.
I am currently waiting for further blood results and mri’s on both hands and wrists.
Current suspected diagnosis:
Urticaria
Polyarthralgias
, I'm so sorry for the pain, discomfort and uncertainty you have faced for these long months. Getting a diagnosis can be a long and treacherous process, especially when it comes to lupus. First, its worth noting that it is possible to have lupus and have a negative ANA blood test. Some of our other community members have shared their experiences in this forum: https://lupus.net/forums/negative-ana. In terms of your rash question, its hard to know if its lupus related, simply because there are so many different rashes associated with lupus (including hives) which are further explored in this article: https://lupus.net/symptoms/rash. It may be worth seeking a second opinion from a different Rheumatologist if you feel that you aren't getting any clear answers. Also, it can be hard to monitor all of your symptoms, especially when you are experiencing so many depending on the day. We also have this free downloadable symptom tracker to help folks better record their day-to-day symptoms. It can sometimes be helpful to bring with you when you go to a doctor's appointment to give them a full picture of what you are dealing with day to day: https://lupus.net/living/symptom-tracker. I hope some of this is helpful and you get some answers and clarity soon!
Gabby (team member)Thank you so much for your reply. I got a phone call from my rheumatologists receptionist yesterday after providing more photos. He still says it’s hives and has told me to increase prednisone to 50mg. So essentially will now be on a five week course. I was so angry yesterday. But your message today has been really calming and I would like to thank you again. I’ll run the course as he has advised and keep battling on. A diary would be great as I feel there is so much to remember and feel I left half of it out.
Thank you again 🙂, I'm glad you were able to get in touch with your doctor and make a plan! Please know we are here to listen and support along the way. Lupus can be cruel and exhausting. It's a battle no one should have to feel they are breaching it alone! We are here if anything else comes up. Thank you for sharing with us and being a part of our community!
Gabby (team member)
whew I am sending you gentle hugs. You are dealing with a lot. Has your rheumatologist suggested seeing a dermatologist? That may help in pinpointing exactly what the rashes are.
I deal with chronic hives and it can surely be difficult to get under control. I found when I was first diagnosed when weaning off steroids my body would go haywire with lesions and serious inflammation.
It’s worth seeing a dermatologist and possibly getting a second opinion for sure. When you are on higher doses of steroids does it seem to help? ~Racquel~ lupus.net team memberHi, thanks for your reply. It doesn’t seems to matter what dose I am on. The rashes, joint pain and inflammation appears to reduce for 3 days then by day four I have a huge flare up. I have everything daily regardless. I spoke with my GP yesterday and I am going to stop the steroids as they do not appear to be helping to a degree that warrants high doses or lengthy courses. I have a referral for an immunologist but not a dermatologist. The GP mentioned this a while but then said it would not be worth it as it appears systemic. I also get lumps under the skin which turn the skin red on the outside and are really painful. They usually present around bone areas, mostly elbows, knees, shoulders and wrists.
I am just so exhausted. My gp is fab but I am now going to wait for a public referral to see a different rheumatologist.
How do you manage chronic hives? Other than steroids. I’m not itchy or anything. I just have widespread rash, lumps, swollen hands, joint pain, exhaustion and headaches.
Thanks,
Steph, I hope you are able to get a referral for a Rheumatologist soon! I'm glad you aren't dealing with itchiness, but am sorry you are managing hives without an effective treatment plan. Since there are so many different skin conditions associated with lupus, it can be hard to pinpoint the best treatment. In addition to the tips listed in the links I shared previously, I would be mindful when you are outside in the sun. Wear sunscreen and protective clothing when possible. Many people living with lupus experience photosensitivity to the sun and can develop skin rash-related symptoms. In terms of some of the other symptoms you listed, swelling is a very common experience for folks managing lupus. This article has some tips to help manage swelling in the last few paragraphs: https://lupus.net/symptoms/swelling. This article shares some treatment options to help manage joint pain and lupus arthritis: https://lupus.net/symptoms/joint-pain. One of our health leaders wrote an article with some tips she uses to try to mitigate her fatigue and exhaustion in this article: https://lupus.net/living/fatigue-tips and another health leader on our team wrote an article about her experience managing headaches alongside lupus: https://lupus.net/living/headaches. I hope some of these can be of help to you! Wishing you a relaxing weekend.
Gabby (team member)I can understand your frustrations and exhaustion. I really hope the rheumatologist is able help and get to the bottom of it a and provide some relief.
We usually do a round of steroids several antihistamines and oddly enough aa product for acid reflux. Sometimes when I get them the courses are short other times pretty long ~Racquel~ lupus.net team member
