Wow, a lot is going on all the sudden!
About 3 wks ago, I woke up with little pustules scattered on my upper lip, eye area and cheek area. And it got worse. Some of the spots were just red, and some were pustules. Gross, I know. When the spots got bigger and didn't go away, I called a derm. She diagnosed me with a sun reaction related to lupus. I worked out in the yard a few days earlier for about an hour (and that did me in but I had to clean things up for spring). Anyhow, she thought is was a lupus reaction even though my rheummie isn't positive I have lupus but he's leaning that direction. Have any of you experienced this? I was flabbergasted as I have never had a issue w/ the sun!
The steroid cream and benzyol peroxide/ steroid creams have reduced the inflammation. Heck, by the time I got in to see her everything was calming down anyway. (Isn't that the way it always goes? lol) Much better now but still have red spots. ugh
Asthma episode last night and this am. Not sure if this is just asthma or related to sjogren's or lupus. I haven't had any problems w/ asthma in years, but noticed a heavy feeling several times in past few mos. but it resolved... Until now. Sigh. Just got an inhaler and it helped a lot.
Thinning/bald head: She gave me steroid injections in the scalp. I know this was a radical procedure but I thought I didn't have anything to lose. Hope it helps but we are only trying this for 3 rounds...if no new growth of hair we will discontinue. Also, bioidentical hormones may help. Thoughts? I know I'm in danger territory but at my age and present physical state, I'm ready to feel better.
I have lots of other issues going on just like all of you: Migraines, muscle pain, weakness, fatigue, insomnia, etc. etc. staus quo
I don't know if any of this info could help some of you but thought I'd share what I experienced and the diagnosis.
Hi Tinker,
Sorry to hear about your predicament.
I can't quite relate to the sunspots, as I had something similar but different. Mine appeared only on my lower legs, after being in the sun first time that year. The steroid cream & avoiding direct sunlight helped.
The thinning hair: have you tried vitamine B complex 2x a day? Tip from my hairdresser and it works like a charm for me. ;D
Many of my other issues (joints, muscles) are resolved with Livial (available in Europe), which works as an agonist on oestrogen, progesterone and testosterone - good for libido too! Not sure if it has any bearing on hairloss???
Against fatigue I take low dose natural thyroid meds. Insomnia is solved with low dose quetiapine. Only one I haven't quite beaten is anxiety/panic attacks.
Hope any of these tips help you?
Love,
Maria
Maria I hadn't heard about the b - complex for hair. Anymore tips?
susanep :)
New and fun stuff shows up on my skin all the time. I try to keep track, since things may be intermittent and then more frequent OR intermittent and then go away.
Every once in a while I get red areas on my forehead, sort of lines, but wide, near my hair line. I have to say I think that they are rosacea of some sort. Why I think that isn't quite clear. I use the cream my dermatologist gave me for fungal infections and it goes away immediately I doesn't hurt, doesn't have blisters, and doesn't spread when it shows up It is just three or four streaks of red raised skin.
e
We just get so MANY things that aren't exactly this or exactly that. Since i had a horror show with my skin until age 27, I have no worries with what presents now. And I have those 'horrid age spots" (one friend just calls them clumps of tan! which is sort of what they are.)
As a dedicated Tan Fanatic of the 50's, I'm anxious to try to tan a bit as we head for Florida tomorrow. i tan easily, with olive skin, and green eyes and would live in the sun if i could. Sun releases endorphins on my skin, for sure!
What to wear? Shorts I guess. At 73 i can wear shorts, but my thighs have moved down to my knees and cellulite doesn't begin to describe what is left behind. That is why I want it all to be TAN at least. So it doesn't show so much. I would wear my heavier long pants, but I fear being hot of course. my lower legs are beginning to atrophy with PN, my knees knock, my calves are very thin and my ankles turn in. Add that the stumbling around, lurching really. Oh it's a ballet!
i lived the formative years of my life with severe eczema on my arms bleeding weeping, smelling terrible,and cannot wear short sleeve sleeveless tops no matter how hard I try. And now age has marked what my eczema no longer does!
But it is interesting I am still interested in clothes and makeup that make me feel my best , We will see mostly friends our age, who are dealing with diagnoses (Parkinson's) and (Non Hodgkin's Lymphoma which is running out of treatment options I guess.
But we will see the Baltimore Orioles and the Boston Red Sox in a SPRING TRAINING GAME, which is always fun
No one cares how I look, of course, but me.....
Hugs, Elaine
@ Susan: no sorry, no other tips against hairloss...
@Carolina: all these little ailments make simple choices like clothing so complicated... Sometimes it's just a matter of choosing the comfortable over the fashionable...
... but on the other hand - even if we might look a little different sometimes - WHO CARES? ... Most people are too busy looking at their phones to even notice :o ;D
My best to you!
Hi everyone,
Sorry I haven't responded to your replies. I have very ill with asthma, borderline pneumonia and fever. Had 2 chest x-rays , steroids, breathing treatments and antibiotics.
I thought I had turned a corner but right now I can still hear wheezing without a stethoscope, rales, and still coughing. May have to see a pulmonolgist if I things don't get better by Mon.
This is the worst asthma, wheezing attack I've ever had. Haven't had one in 6 years and all of the sudden I've got it and how!
Will try to get back here asap. It has occurred to me that this could be tied to lupus.
Hi Tinker
Sorry to hear you have been so ill. Are you feeling any better yet?
Hugs
KAthyx
Earth to Tinker! What is happening now?
I've had a tiny asthma attack once in a while, and can't imagine how terrible a full blown case would be.
Please let us know!
If you can.
Hugs, Elaine
Hi Elaine and Kathyx,
Thanks for your reply. I don't think I've been this sick since I took chemotherapy. Ugh. My daily routine is to wake up, takel my steroids, antibiotic, breathing treatment, cough med, and eat a little cereal to deter any steroid stomach inflammation. I take a shower when I'm up to it and continue with breathing treatments every 4 hrs. Can't miss or I can't stop coughing.
Went back to doc on Wed as it didn't seem like I was getting better andsaw the PA. She wanted to do CBC, pulmonary function but doc told her no. ?? I didn't ask for it. Her assessment was that my lungs were the same as when I was first seen. But, yesterday afternoon I started to feel a little better. Thank goodness. They said I could go in for IV antibiotics but I'm too weak for that and just finished the antibiotics today. I know I must be watchful since I"m done w/ antibiotics and I'm on the steroid taper.
I have made another post about this under "Sick as a dog with asthma/pneumonia?". My coughing is so violent that I've lost bladder control and using diapers. Nothing makes you feel like a million bucks like coughing your lungs up and peeing in a diaper.
I am taking low dose steroids but the shakes from that and breathing treatments are severe. My husband has caught this viris from me in spite of our efforts to isolate.
It will be good to see the light of day and get out of this sick bed. Thanks for your concern.
Tinker
You poor girl. My heart goes out to you. I coughed solidly for two weeks before my asthma was diagnosed, and I've never felt so unwell in all my life.
Let's hope you are getting over the worst of it.
Hugs
Kathyx
Hair loss, asthma, and rashes may all have their individual causes but one thing that jumped out to me with you mentioning them all in a row like that is each one of those is also exacerbated by .... bum bum bum.... STRESS. And if people with SJS don't have ten million reasons extra to stress I don't know who does.
I do not mean to imply that "it's probably just stress" because I hate it when people do that. Stress is no small matter. It's possibly the single worst thing that affects health and when people don't give stress the respect it's due it causes stress to increase. But any time you can take extra steps to pamper yourself or care for yourself, you should because it'll pay greater dividends in reducing your health challenges than actually attacking the symptoms. Or at least it always has for me. GG