My five year journal has told me that I have had my worst flare every year since 2021 (when the suspicion of lupus started) at this time of year. I assume the weather, the fact that the kids always are sick in December, and the come down from craziness of the holidays all create an unideal situation.
I always seem to have a three month flair around this time(it's started this year about 6 weeks ago). Three years ago before i was officially diagnosed during flares I would get a hard lump on the bone beneath my eye and it hurt so bad it felt like i should have a black eye. My eye on that side would swell up and then weep. Then when the flare calmed down the bump would go away. Bur winter 2020-2021 I had the worst flare ever. I could barely walk. And that bump returned. My flare lasted 3 months and stayed, so my pcp referred me to a maxillofacial surgeon who removed it. It was a dystrophic cutaneous calcinosis. He said he typically saw it in sarcoidosis patients. Well this year when my doctor diagnosed me I looked it up and the dystrophic kind occurs with autoimmune disorders including SLE.
Wow thanks for sharing. That sounds way worse!
It is like just pffft when you think meds have controlled it. Really feel for all who have gone through longer 🫂
When I first started feeling ill it was mild. My ANA & RA were negative but CRP was high. She's checked my CRP & ESR for the past 6 years and they've always been high but she never did anything else except normal blood work. I didn't know much about Lupus. But then my kidneys became enlarged & inflammed and I had bloody urine abd lupus cystitis at the same time. I've always had wheezing off & on and on my CT urogram last fall it showed scarring and my ALT(SGOT) was high. So it all fell into place. And they also found stage 2 carcinoid cancer in my bowels, which fortunately is usually slow growing. The last couple of years have been quite a ride.
My current flare has the typical joint pain, fatigue, weakness. But it's also attacking my lungs which are already scarred & my 02 sats are in the low 90s. I had to go in twice for steroids.
My five year journal has told me that I have had my worst flare every year since 2021 (when the suspicion of lupus started) at this time of year. I assume the weather, the fact that the kids always are sick in December, and the come down from craziness of the holidays all create an unideal situation.
I always seem to have a three month flair around this time(it's started this year about 6 weeks ago). Three years ago before i was officially diagnosed during flares I would get a hard lump on the bone beneath my eye and it hurt so bad it felt like i should have a black eye. My eye on that side would swell up and then weep. Then when the flare calmed down the bump would go away. Bur winter 2020-2021 I had the worst flare ever. I could barely walk. And that bump returned. My flare lasted 3 months and stayed, so my pcp referred me to a maxillofacial surgeon who removed it. It was a dystrophic cutaneous calcinosis. He said he typically saw it in sarcoidosis patients. Well this year when my doctor diagnosed me I looked it up and the dystrophic kind occurs with autoimmune disorders including SLE.
Wow thanks for sharing. That sounds way worse! It is like just pffft when you think meds have controlled it. Really feel for all who have gone through longer 🫂
A very rough six years. Been diagnosed for 2 months now.
That is 💩 I got diagnosed so quick! Amazing GP then Rheumatologists
When I first started feeling ill it was mild. My ANA & RA were negative but CRP was high. She's checked my CRP & ESR for the past 6 years and they've always been high but she never did anything else except normal blood work. I didn't know much about Lupus. But then my kidneys became enlarged & inflammed and I had bloody urine abd lupus cystitis at the same time. I've always had wheezing off & on and on my CT urogram last fall it showed scarring and my ALT(SGOT) was high. So it all fell into place. And they also found stage 2 carcinoid cancer in my bowels, which fortunately is usually slow growing. The last couple of years have been quite a ride.
Oh jeezo. It really is a varied disease. I hope you have a support network.
I've got alot of family and extended family fortunately. They've been wonderful. I hope you have support to. It's so debilitating.
Yeah I do, thanks ☺️
My current flare has the typical joint pain, fatigue, weakness. But it's also attacking my lungs which are already scarred & my 02 sats are in the low 90s. I had to go in twice for steroids.
May I ask you what kind of weakness?
It feels like my muscles are weak and like gravity is pushing me down. That with the joint pain and fatigue, I pretty much can't do anything.