Hi I’m new to this site and haven’t really talked to anyone else who has lupus. I’ve been in a flare for almost a year now and it’s just been getting worse. I was taking prednisone 60 mg but unfortunately it wasn’t working so I just started taking methylprednisilone 60 mg and taking vitamin D, calcium, iron, and plaquanil. I just started getting these water blisters all on my face and around my nose but my doctors don’t seem too concerned because they’re saying I have more important problems to deal with right now… I was just wondering if anyone has ever experienced these blisters or knows anything about it and if I should be doing anything about them.
I have Kellie. I've been having all kinds of symptoms popping up since 2012. I've went from working in my yard, cleaning my home, shopping to staying in bed and my husband does the shopping and im using a walker to get around but unfortunately its not working out due to the muscle pain in my arms. Anyhow about 3 months ago I had a water blister appear outta no where. The absolute only time im in the sun is to go to dr appointments. I hadn't been out of my house in weeks. I was baffled, Shocked, Stunned, confused. At the time it came out I was going thru a symptom in my ongoing flare that keep my body temp extremely high. after a few days of this is when I developed a water blister on my arm.
Girl I was having all kinds of trouble getting these pics on here. so im sorry if I messed em all up. just wanted to compare because im extremely concerned and curious about this! Thanks for posting about this! God Bless
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hi nikki and kelli!!
i have the same blisters. i usually get them on my cheeks and sometimes my chest. my doctor said they arent a"lupus thing" nothing ever is! ha!! that's what they say when they don't know what it is. and don't care to find out.
but nikki mine look exactly the same and never caused me any problems so kellie don't sweat it. the doc is right about one thing worry about the important stuff. :)
hey i have a question...do you guys get intense itching with no visible rash?? i have been getting this for years but have been having it non stop for over a month!!! and i;m going insane!!!!!
i avoid the sun as much as I can too but apparently my doctor called me today and said its from sun exposure. And Christine my face and head get really itchy too but its usually accompanied by the blisters and gets a little red but that might be from me scratching it lol
Hey Christine! yes I absolutely have severe itching all over my body! It has a sort of stinging sensation combined with the itching. Not sure where your from but it feels much the same as if u rolled around in "down here what we call" fire grass!
I will claw myself so badly to the point of bleeding.
Its gets so much worse if I get the tiniest bit to warm too.
I have freckles! lol! like I have a few here and a few there. they're kinda light though. not to noticeable unless u staring me down (: but anyhow some of them are the least bit raised up off the skin, im talking barely. Anyhow I've been having a problem with them like peeling and ,making scabs just on the freckles. like say on an area on my arm I have a little area of freckles. you can actually see that the scab is on the freckle and not just a sore or scab that came out over a freckle on accident. this is happening on my back, shoulders, face, arms. And they will itch so badly. I will pretty ,much scratch the brown freckle color of, it will come off in one piece. then the itching will ease up a little. but then it will scab back over with the brown freckle skin back over it. I will then start itching on them again like crazy until in scratch the top brownish freckle skin off. sometimes they will finally heal up but in always have several of these that I deal with at a time. they seem to be mainly were my lupus rashes are too.
christine aiello said:
2-20160401_225857.jpg (2.68 MB) 3-20160401_232056.jpg (3.08 MB)hi nikki and kelli!!
i have the same blisters. i usually get them on my cheeks and sometimes my chest. my doctor said they arent a"lupus thing" nothing ever is! ha!! that's what they say when they don't know what it is. and don't care to find out.
but nikki mine look exactly the same and never caused me any problems so kellie don't sweat it. the doc is right about one thing worry about the important stuff. :)
hey i have a question...do you guys get intense itching with no visible rash?? i have been getting this for years but have been having it non stop for over a month!!! and i;m going insane!!!!!
I’m from ny…sounds like you’re from the south 
And yes,mine too is a stinging itching biting feeling all over from head to toe!!
So Kellie your doc thinks the itching from Sun exposure? Hmmm… I wonder I am supposed to stay out of the sun and cover up with sun block (i hardly do) I’ll try it and see what happens. I’ll bathe in sun block if it will make this itching never come back!!!
hahah! yep, im deep down south! im about 30 minutes from the gulf. I have certain reactions to the sun but im never in the sun, ever! I have been stuck like a prisoner in my home due to the Lupus and Dermatomyositis! The only time I get out is for a Dr appointment. I have Medicaid therefore go to charity clinics. There are times " most of the time" that we will go 6, 9, 12 months without seeing the rheumy! They are so backed up with one clinic held once a month for 3 to 4 hours that we get thrown back on waiting lists. But that's a whole other issue, lol! My husband has had to do the shopping now for almost a year. I am to weak from my muscles going to crap on me and so so so tired. Im 33 years old and we are actually to the point of starting to make modifications around the house for me to be able to take a bath safely and get around. I do not want to be this person.
anyhow next time u visit your Dr keep us updated on what he feels it is. I know its miserable. I hope ur Dr can give u some sort of relief!
Nikki said:
Hey Christine! yes I absolutely have severe itching all over my body! It has a sort of stinging sensation combined with the itching. Not sure where your from but it feels much the same as if u rolled around in "down here what we call" fire grass!
I will claw myself so badly to the point of bleeding.
Its gets so much worse if I get the tiniest bit to warm too.
I have freckles! lol! like I have a few here and a few there. they're kinda light though. not to noticeable unless u staring me down (: but anyhow some of them are the least bit raised up off the skin, im talking barely. Anyhow I've been having a problem with them like peeling and ,making scabs just on the freckles. like say on an area on my arm I have a little area of freckles. you can actually see that the scab is on the freckle and not just a sore or scab that came out over a freckle on accident. this is happening on my back, shoulders, face, arms. And they will itch so badly. I will pretty ,much scratch the brown freckle color of, it will come off in one piece. then the itching will ease up a little. but then it will scab back over with the brown freckle skin back over it. I will then start itching on them again like crazy until in scratch the top brownish freckle skin off. sometimes they will finally heal up but in always have several of these that I deal with at a time. they seem to be mainly were my lupus rashes are too.
christine aiello said:hi nikki and kelli!!
i have the same blisters. i usually get them on my cheeks and sometimes my chest. my doctor said they arent a"lupus thing" nothing ever is! ha!! that's what they say when they don't know what it is. and don't care to find out.
but nikki mine look exactly the same and never caused me any problems so kellie don't sweat it. the doc is right about one thing worry about the important stuff. :)
hey i have a question...do you guys get intense itching with no visible rash?? i have been getting this for years but have been having it non stop for over a month!!! and i;m going insane!!!!!
Hi Christine, as far as itching, I have had severe itching or pruitis since the mid ninties. Some times I do think I will go insane. Over the yrs, I have been to every discipline known for an answer or a treatment, but to no avail! I did find a good treatment about six months ago and it has literally saved my mental life. It is naltrexone (low dose). I take it with gabapentin and it is remarkable. It is not a drug that anyone had even thought of till just recently, not my rheum, but his collegue told him about it and it works so well. I am in a real flare right now and so it has started back up, but not with the intensity as it has been in the past. PLEASE ask your doctor about it. It started working within a couple days. I feel for you and anyone else with this issue. My skin is badly scarred from yrs of scratching with everything. My blood is now very close to the skin and I look like I have a skin disease, but I figure I am a survivor of this terrible itching and I don't care anymore. BTW, naltrexone is only thru a compound pharmacy. Take care and I will pray for you!
christine aiello said:
hi nikki and kelli!!
i have the same blisters. i usually get them on my cheeks and sometimes my chest. my doctor said they arent a"lupus thing" nothing ever is! ha!! that's what they say when they don't know what it is. and don't care to find out.
but nikki mine look exactly the same and never caused me any problems so kellie don't sweat it. the doc is right about one thing worry about the important stuff. :)
hey i have a question...do you guys get intense itching with no visible rash?? i have been getting this for years but have been having it non stop for over a month!!! and i;m going insane!!!!!
I get blisters all the time and they burst and take ages to heal.Not sure ifr its a lupus thing or not.I get itchy a lot.all over as well.
I get the same blisters but everywhere! They itch like crazy then, they become a dry scaly
itchy purple/red bump in clusters! I even get water blisters in my mouth! I’ve noticed that when Im driving with my hands on the steering wheel that I get them on my fingers. If Im in the sun, I will get them on my shoulders somedays within minutes! My cheeks get them if Im on my computer which is also UV light!! ??? They itch like crazy and last atleast 3 weeks