I have nephrologist on my team of Docs I see regularly so I’m covered there but I think I’m going to make a call to see if I can get in sooner to see him cause it has been a little longer between follow ups than we like. Thanks Julie!
Thanks Julie! I will. I just asked him last week to refer me to a different rheumy and I got a phone call that same day with an appt time! I don't think he was very fond of my current rheumy. Hopefully the new dr will be more accommodating. Unfortunately, all the rheumy's around here have about a 5 month waiting period for new patients. So, I definitely will check with my gp.
smiles,
adrienne
jujubeee said:
Ask you GP to test you. Don't wait. I had the same issue with my old rheumie. He tested me at first, then stopped and I ended up in CKD stage 3. Doh!
I went straight to a nephrologist and now he treats my kidneys and anything kidney. You can also have your GP give you a referral to one just because you have SLE.
You made a very good point. Love Julie
Idk if it’s part of the lupus or not but Iam eexperiencing it also. Especially the arms, legs and face. It drives me craxy because nothing seems to help!
Does it ar to be causes by sun exposure? I have the same invisible rash and the sun is what does it. It’s actually how I ended up at a rheumatologist … I expected a sunscreen with superpowers that only dermatologists had … Ended up with finding out that its lupus related. Sarna lotion is the only thing to give me relief, I have had the rash for seven years, drs never listened to me because it was invisible.
The sun makes my arms and legs itch. When not exposed to the sun I have lots of itching on my back, sometimes allover the body. Antihistimine sometimes helps the itching. I have noticed that the itchy back got worse since on plaquenil, which I thought was weird because if plaquenil is suppose to help with symptoms why would I itch more.....hmmm? I also have brownish/grey skin discolorations on my back for about 12 yrs now. they are flat and all different sizes, I am getting more as time goes on and they itch like crazy. If I scratch them and then shower, the waterhitting them feels like sharp needles are pricking me, it is so painful I have to stop letting the water hit my back. Dermatologist biopsied it and said it was just inflammation, not a very common thing :/
Thank you all for letting me know its not just me!! I spent hundreds on every anti itch cream… Only Saran medicated lotion works. I was Leary to try it, because lotions made it worse, but thank God I did! I itch myself to the point of bleeding in my sleep.
Sorry, autocorrect … It’s Sarna lotion, in a white pump bottle, lifesaver
Hi, oh boy!! Take a cool shower with aveeno, that might help you ! But as soon as you can make a appointment to see the doctor.let him know everything, Yes! Lupus flares come in different ways ,but most of the issues might come your way-so don’t cross nothing out ! Just make sure you see the doctor and Welcome to the family of Living wit Lupus…Beverly L.
I think this is a fairly common issue. I am almost certain that some of it is caused by some of the meds we all take. You are definitely not alone!! Have it all of the time!!
I'm not sure if it is due to the Lupus or meds, I experience the same kind of itching and I to bruise myself from itching my legs. The doctor told me it is probably the sun, so I'm not sure:)
Hay! The sun does make the skin itch nd burn, I have this when I forget to put on my long sleeve shirt. It is so bad when I forget, i have to take cold showers a lot to stop the itching. It is crazy, but hay! We can’t always stay in the house .So don’t forget to put on the shirt and don’t stay out for long periods of time , the flare is crazy…Beverly L.
Wow! If this is actually a symptom, it was my first one and started over 7 years ago! You’re right, the itching just comes out of the blue. There is no rash, no marks, no observable reason to have such severe itching…but it is SEVERE!!! It is almost as if it itches from the inside out. No amount of scratching will stop it. I have tried benadryl, both oral and topical, many other topical creams and gels. The only thing that I have found to be effective at all is to rub ice or the coldest thing I can find on it for several minutes until it stops.
I’m actually glad to know this is a symptom! I have just been diagnosed. It had been suggested to me by friends and family that perhaps it was anxiety. It never made any sense to me that someone could “itch” so severly from anxiety, but not have any other symptoms of anxiety.
I have had this too. Mine does not go away with cool showers. Hives or a red raised rash usually appears. So I use a benedryl cream mixed with lotion (dr suggested) to stop the hives. Some days this works better than others. Then I go to bed. Once I can sleep for minimum 1 hour the itching starts to reside but the “hives” are usually there for a day
I get the itchies so bad that I wake up with bloody scratches sometimes from scratching myself in my sleep. Ice or anything that has a cooling effect works well for me. Gold Bond Medicated Lotion works well (in the green bottle) so does peppermint oil spray. I make my own, in a sprayer bottle I mix a couple drops (a little goes a long way) of a good quality peppermint essential oil (NOT fragrance oil) in water. Make sure you aren’t allergic, and don’t spray near your face and keep your fingers out of your eyes (I learned that the hard way lol). I spray myself down a couple times a day, it helps with itchiness, gives some temporary pain relief and cools down my body (which is helpful here when it’s 110 degrees outside) basically it is a quick fix solution for times when I need an ice pack but don’t have access to one. It’s a bonus that you smell like a peppermint candy too 
It is very common for your meds to cause itching, especially pain meds. I get it on the front of my calves and my upper arms. That combined with the increased heat can be a real annoyance. I use Curel ultra healing and it really does help, but I think any really good moisturizer is helpful.
If you do break out in a rash or hives, that is most likely an allergy and should be seen by your doctor.
Hope this is helpful.
DeAnne
I have also had the itching. I was told by my doctor that It can come with sun Exposure and most pain medications and some other medication have it listed as a side effect. Your answer may be a easy as checking you medication Pamphlets for any such listed side effects.
Good luck and I hope you figured it out!
Deenie
I did some outside research and the nerve endings for pain are also the nerve endings for the sensation to itch. I get really itchy too, most of the time when I am having severe joint pain. Maybe that's it?