Lupus and Cutaneous Mastocytosis
Hi I have had SLE since I was 17yrs old. I am now 67 and a year ago started having severe hives. After having allergy skin tests coming back negative I was sent to a hematologist/oncologist and had bloodwork done, which showed a high Tryptase level. I had a bone marrow biopsy done and it determined no cancer. I was told I have Cutaneous Mastocytosis which is an excess of mast cells in the skin probably related to my SLE. Has anyone experienced these hives and can share their experiences and treatment? I was told to use over-the-counter antihistamines which do not give me any relief from the hives. The hives usually show up after a night's sleep and get better during the day only to appear again the next morning. My lupus is under control so I am looking for any advice from anyone experiencing a similar diagnosis. Thank you in advance for any info anyone can share.
Thanks for sharing your story. I have had issues with hives when I've been out in the sun too long. I ultimately had to get a prescription for steroids and a stronger antihistamine. The hives have plagued me from a teenager. Looking back it was always because of sun exposure and would come hours after. Hives can occur in lupus patients though. You can see more about that here >> https://lupus.net/symptoms/rash < 
Hi
, thanks for sharing with us. My only knowledge of mast cell issues come from advocates with Mast Cell Activation Syndrome (MCAS). Have you talked to your doctor about this? Since you have excess mast cells and get hives after sleeping it sounds like something about your sleep environment could be triggering them in some way? I'm sorry you're dealing with this issue. If you decide to talk to your doctor about MCAS it could open up more treatment doors. MCAS first-line treatments are anti-histamines, like you mentioned, but there are more options. I hope you can find some answers and relief for this frustrating issue. -Ava, lupus.net team About 2 years before getting Lupus diagnosis I also was having severe allergies, roving hives and systemic itching. My allergist suspected mast cells - He had me take Naselcrom - which made life tolerable and really really helped lessen itching. I had been taking antihistamines for many years but new diagnosis of optic nerve damage & glaucoma curtailed using them. I’m now taking Benlysta and everything has calmed down- hives are rare, itching far less and finally not chronically tired. Try the Naselcrom Nadel spray. I ordered it online. It was a game changer in ending some of the food allergies I had developed from a 4 year exposure to a toxic mold.
, I'm sorry for all the pain and discomfort you have experienced along your journey but am happy that the Benlysta seems to be helping calm things down for you!
Gabby (team member)
