New symptoms:Itchy scalp behind my left ear and up to the back of the middle of my head. Also having tingling. Does any body have this too? Or, am I developing another autoimmune disease. Have four already besides SLE.
Been taking gabapentin for other symptoms like muscle spasms in my legs. The gaba . . . helps but for these symptoms it doesn’t last long–wears off before the next dose. However it’s the drug of choice.
Ya’ll have been so helpful in the past.
My had no answers, but she did acknowledge it. However she did increase the Immuran (azothioprine) an extra 50 mg last visit because she said my "double stranded DNA
Ive had the itchy scalp for a couple of years. I jist thought it was part of the SLE. But now I am getting spots on one arm, my stomach, lower back and the tops of both feet that constantly itch. Gonna bring this up at my next appt.
EXCUSE THE CAPS, IT IS EASIER FOR ME SINCE MY HANDS ARE AFFECTED BY THE
LUPUS. I RAN A SUPPORT GROUP FOR OVER 15 YRS AND I WAS SPEAKING AT DOCTORS CONVENTIONS “HOW TO TREAT PEOPLE WITH LUPUS”.
I HAVE NOTICED, I SAID PEOPLE. WE ARE NOT IN THE BOOKS AS A PERSON JUST A
DISEASE!! MYAN PEOPLE WHO HAVE PROBLEMS WITH SKIN, IS NOT A BIT ISSUE.
FIRST IF YOU ARE ON IMMURAN, (CHEMO DRUG). HAVE THESE PROBLEMS.
THE BEST THING TO DO IS STAY AWAY FORM SHAMPOOS THAT TREAT DANDRUFF!
THEY HAVE SAND IN IT,LOOK AND POUR SOME IN YOUR HAND AND YOU WILL SEE
FOR YOURSELF!! THE BEST TREATMENT IS THE OLD FASHION ONE.
FIRST DO NOT SHAMPOO YOUR HAIR EVERYDAY. IF YOU ARE WANTING MORE PROBLEMS THAT IS WHAT WILL HAPPEN. I ALSO USE TO WORK FOR P.M.
IF YOUR SKIN ON YOU FACE OR BODY ITCHES. USE THE MILDEST BODY WASH OR
BAR OF SOAP. DIAL USE TO HAVE HEXACLOFIFINE(mis-spelled), THE COMPANY
TOOK THIS OUT OF DIAL. IT USE TO BE A GREAT SKIN CLEANSER. NOW, IF YOU CAN
FIND CASTILL SOAP, OR A MILD SOAP GREAT!! OATMEAL SOAP IS GREAT AVENO
HAS A LOOSE OATMEAL PACK. THEY COME 4 OR MORE IN A BOX. IF YOU SIT IN
A TUBE OF THIS WITH LUKE WARM WATER THAT WILL BE THE START OF YOUR PROBLEMED SKIN. AFTER USING THIS TREATMENT OF OATMEAL BY AVENO,
YOU SHOULD GET SOME RELIEF. REMEMBER, THE TEMP OF THE WATER HAS
MANY FACTORS IN YOUR TREATMENT. NO HOT WATER. NO EPSON SALT!!
AFTER YOU HAVE A SOFT TOWEL TO BLOT ON YOU SKIN AND REMOVE EXCESS
WATER APPLY DR. DICKERSONS WITCH HAZEL. THIS SHOULD BE COLD AND STORED AFTER USING IN THE REFRIG AGAIN BEFORE USING. OLD AVENO OATMEAL AND WITCH HAZEL ARE THE BEST THING FOR PEOPLE WITH LUPUS.
REGARDLESS, WHAT MEDS YOU ARE TAKING!!! THIS SHOULD REALLY HELP YOU
SKIN, AND SOME PEOPLE SHAMPOO, EVERYDAY. THIS IS NOT A GOOD THING.
IT SHOULD BE NO MORE THAN EVER 3 DAYS. DURING THE 3 DAYS, IF YOU ITCH OR HAVE A RASH USE THE WITCH HAZEL. IT WORKS!!! SO, FIRST THE WITCH HAZEL,
SHOULD ALWAYS BE IN THE REFRIG BEFORE USING. IT WILL REFRESH YOU AND MAKE THE ITCH, CALM DOWN. IF THAT DOES NOT HELP USE CAMAIL LOTION.
COLORLESS, IT USE TO ONLY COME IN PINK. WHEN YOU HAD CHICKEN POCKS
YOUR MOTHER, MORE THAN LIKELY APPLIED THIS TO STOP YOUR ITCHING.
I CAN NOT STAY ON THE COMPUTER BUT, I WILL LEAVE YOU WITH SOME
HOPE AND A POSSIBLE SHORT TERM SOLUTION!!! YOU ARE IN CONTROL OF YOUR
LUPUS. USE WHAT HELPS YOU. NO ONE KNOWS YOUR BODY BETTER THAN YOU.
WITCH HAZEL, OATMEAL, CAMAIL LOTION FOR ITCHES FOR SERIOUS BODY ITCHES.
WITCH HAZEL, USUALLY WORKS FASTER. KEEP THE WITCH HAZEL IN THE FRIG.
IF YOU HAVE QUESTIONS, SEND ME AN EMAIL. I AM SO SORRY FOR THE MIS-SPELLING BUT, I JUST HAD SURGERY AND I AM IN PAIN. I HOPE THIS SHORT
INFORMATION HELPS YOU.
ALWAYS KEEP COOL, STAY OUT OF THE SUN AND HEAT
MICKEY XXXX@XXX
many BLESSINGS
_DEAR EIRS193, PLEASE READ MY BOTTOM POST ABOUT ITCHES.
I HOPE YOU CAN LEARN SOMETHING OUT OF MY MIS-SPELLED LOL
ANSWERS!! SOMETIMES THE OLD METHOD OF CARE IS THE BEST!
TAKE CARE MICKEY
XXXX@XXX (email address removed by Modsupport for the member’s online security. Please share contact information via private message by clicking on the person’s avatar, and then on the blue message icon.)
DEAR USAGIRL, EIRS, TEKKGIRL, LOOK AT MY POSTED RESPONSE.
I HOPE IT HELPS ALL OF YOU WITH SKIN PROBLEMS.
IF ANYTHING. EMAIL ME!!
I WOULD LIKE TO HEAR IF IT WORKED FOR YOU!!
MANY BLESSINGS
MICKEY
XXXX@XXX (email address removed by Modsupport for the member’s online security. Please share contact information via private message by clicking on the person’s avatar, and then on the blue message icon.)
antiobodies are elevate and would take 3-6 months to know response to increase of the med. I’m so immuno-suppressed now that I hope I don’t get any infections while we’re waiting. How do you cope?
I’m not coping so well–I really itch.
Dear Mickey,
Thank you for your suggestions. I have been through 90% of this–have itchy dry skin all over relieved by buckets of creamy vaseline. In fact oatmeal soap was making me itch worse. I will try the castile soap–have some Dr Bonner,s around here someplace. Have messed up skin from everything–also have Sjogren’s and Autoimmune Hepatitis which cause itching along with all the drugs. This itch is different. I posted because this was a brand new symptom and nothing affects it except Gabapentin. Also take this drug for severe muscle spasms.
My last communication was all chopped due to computer freezes (happened just now). The doctor is waiting for the DS-DNA antibody level to decrease with the increased Immuran (from 100 mg per day to 150 mg). Should take up to 6 months to respond.
Hope you are improving from your surgery. I can empathize with post operative pain.
Mickey,
I used Castile soap last night in my shower and it worked very well. I didn’t itch except for the one place on my scalp. Good stuff! I forgot that I had a bottle of Dr. Bronner’s Castile soap, really helped my skin too. So glad you mentioned it.
Please let us know how you’re doing.
Berta
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HEY FRIENDS, THIS MIGHT BE THE SECOND EMAIL I SENT!!
SORRY ABOUT THAT. IT IS BETTER THAT I KNOW YOU HAVE GOTTEN THIS EMAIL AND
CHECK OUT WHAT MIGHT HELP.
I READ MANY TYPES OF BOOKS, FROM THE BIBLE, TO LAW REVIEWS, PREVENTION,
READERS DIEGEST AND MORE.
IF YOU READ IN BED LIKE ME, THIS CLIP LIGHT IS NEAT!!
INSTEAD OF A BIG BULKY READING LITE THAT ATTACHES AT THE SIDE!! THIS IS
THE BEST YET. CLIP IT LITE IT. HAVE DIFFERENT STAGES OF LITE.
ANGELA, THEIR IS THE GALAXY 5 COVER I HAVE BEEN SEARCHING FOR THIS MANY
MONTHS AND BINGO, I HAVE ORDERED THIS.
THE REST IS UP TO YOUR OWN READING HABITS.
ENJOY MY LIST.
YES, MERMY I AM SURE YOU CAN GET THESE TO GO TO ENGLAND.
BEST WISHES
MICKEY AKA MICHELE
Dear USA GURL, I just want to tell you from my experience with 150 members of the LUPUS CLUB OF ONTARIO, CA. I have seen alot. Aveno should help.
PLEASE THINK ABOUT THIS SUGGESTION: Visit you doctor and ask him if
hydrocortsone (mis spelled cream would help) It is sold over the counter.
IF you need a stronger cream, the doctor may give you a strong cream!!
YOUR Primary Doctor first and than if he gives you a referral l to see a specialist, GO!!!
TRY NOT TO SCRATHE!!! CALAMINE LOTION FOR CHICKEN PAOCK.
mis spelled
always MICHELE AKA MICKEY
I AM IN PAIN BYE
I have been itching for years to the point that I would tear my skin on the top of my feet, my head behind my left ear and in addition to other places. I recently had my first positive ANA, however, my rheumatologist told me I likely have lupus years ago Due to symptoms in addition to other autoimmune’s already diagnosed. I have taken allergy pills every night for probably 12 years for the itching. Every year so I have to change brands but it reduces the itching so much, such a blessing! Don’t know what I would do without my allergy pills. Just a thought. Now that I have positively been diagnosed with lupus, a lot of things are making sense. Things that did not fall under the category of the other autoimmune issues.
It’s really odd (and infuriating) how for many of us, having years of no confirmed diagnosis or misdiagnosis, that once we eventually obtain a diagnosis we can look back and all of those odd jigsaw pieces seem to all fit into place. I say ‘infuriating’ as the misdiagnosis and finger pointing can have a serious impact on our own self esteem and interpretation of our conditions, let alone the judgements of others.
Im pleased that having that diagnosis helps make sense of things for you.
Merl from the Moderator Support Team
Merl, thank you for your comments. They are so very true! I knew what I had for sure, other autoimmune diseases which didn’t make sense but there was just this big? In the middle of a lot of other symptoms that I could not place. Thank you for your understanding and for just being there. We are alone in so many ways other than those one or two people that are so close to us that we actually are able to open up to and they support us every step of the way. No one else matters including children who do not understand when you cannot make your grandchildren’s basketball games or your grandchildren’s birthday parties because you can barely walk. You are ostracized And told over and over that no one can depend on you anymore you make plans and you cancel plans, again in my case, my own children. People that are not walking our walk just have no idea the strength and faith it takes each day. God bless you for being there for all of us.
Similarly to you, I knew there was an issue. But back then they didn’t have the tools nor skills to diagnose and it was all said to be a psychological issue ie “He’s crazy in da coconut. It’s hypochondria…” Fast forward 20yrs, after a major medical incident, they investigated a bit more “ohh look what we found…” I’d been telling them for the past 20yrs there was more to it than hypochondria, but then I’m just the patient (with very little patience left for dr’s) and who was I to EVER question the dr’s. GGrrrrrrrr.
Until they could do a test or take a scan to prove a medical issue they did not believe my symptoms. Even today, after having a confirmed diagnosis, having gone through multiple neurosurgeries, they still have the gall to question symptoms. Nobody, and I mean NOBODY chooses to go through all of this. I’m often saying “…it would be easier if I’d lost a limb. People would be able to see that there’s an issue…” But for many of us with rare and invisible conditions people outside of our reality seem very quick to judge. I would love for those who want to judge to come live this for a single day, just one day. Now judge. They would be second guessing their judgements in a heartbeat if they had to manage all of this. But they never will.
Just know that you are not alone and that there are some people out there who really truly do know and not from a textbook but from personal experience.
Merl from the Moderator Support Team
Merl, Thank you so much and thank you for what you do for Ben’s Friends. You are so right! Only the people going through this really know how difficult it is and how hard it is to put a smile on every day and keep going. I know it is a blessing though considering what a lot of people have to endure. Thank you, again!
And thank you for listening to my rant. Sometimes, it is so hard to take it from the ones who are closest to you.
Hey Tootle,
I couldn’t agree more regarding taking it from others closest to you.
For me personally I had to get away from the judgements, I moved country, from New Zealand moving to Australia. My family is VERY catholic. One thing that goes with Catholicism is guilt. When I obtained a confirmed diagnosis and informed family, my mother went into guilt mode. Although at times I think she should feel guilty in not believing that there was an issue at the time, she is not solely responsible. She was taking advice and information from the medical professionals. She has apologised ad nauseum, 20 yrs later mind you.
Some people seem to place so much faith in the medical professionals they might as well be the incarnation of Jesus Christ himself, but they are not gods (no matter how much their egos/self belief is that they deserve such admiration), they are people just like you and I. And they are fellable, just like you and I. But unfortunately often it’s not until an individual has a negative personal experience that they question the dr’s knowledge. Both you and I have had that ‘negative personal experience’.
Merl from the Moderator Support Team