Badges (1)


Member has chosen to not make this information public.


Member not yet following any Pages.

Posts (8)

Mon, Jun 1 11:15am · So sad: Husband has glioma and I feel he is fading away in Brain Tumor

@rosez So sorry to hear of your experience. I am not familiar with his condition nor do I know if your loved one was constantly mad at you prior to his condition, but know that when people are in pain and not well they usually are not themselves. As hard as it is to watch and see them like this, it's hard for us caregivers to remember who they were before they were ill. I encourage you to continue to do what's right and love your loved one to the best of your ability. I also encourage you to ask for help.

Sun, May 31 1:41pm · Undiagnosed Autoimmune Disorder - my mom in Autoimmune Diseases

So sorry to hear about your Mom's health issues. I am caring for my 42 y.o. sister-in-law who was diagnosed with Adult Onset Still's Disease (AOSD) about a year ago. She spikes fevers and has full body pain (arthritic inflammatory pain) all over as well, however Kineret (anakinra) daily injections + prednisone provided some relief until a few weeks ago when she had severe itching episodes that caused her to cry and not sleep! We now know that she is allergic to Kineret and her rheumatologist has switched her to Ilaris, a 30 day injection, which she started Friday, May 29. Fevers have been managed with Kineret and prednisone, and so far also with Ilaris and prednisone (60 mg/day for now). The severe itching begin to present as her Prednisone doses were reduced every 2 wks since Jan 2020. She was most recently at 7.5mg of Prednisone, but again it's been increased now until the doctor feels comfortable with her progress on Ilaris ( Hope this is helpful.

Mon, May 11 11:16pm · Help!! Severe itching with no relief -- not sure why! in Caregivers

Good evening @artscaping , thanks for your input! I just joined this online support group today and everyone has given the best input.

Mon, May 11 11:09pm · Help!! Severe itching with no relief -- not sure why! in Caregivers

@lieutenantasmith Thanks for your suggestions. This is good! God bless you too!!

Mon, May 11 4:46pm · Help!! Severe itching with no relief -- not sure why! in Caregivers

@colleenyoung. Thanks for the welcome and your response. The itching started about 8 wks ago, and has been severe as of the past 2 wks. We are suspicious of the meds as well. Just two hours ago her rheumatologist has stopped her Kineret med and upped her prednisone from 7.5mg to 20mg/day. We were on a gradual decline, but because she's stopping the Kineret she is increasing the prednisone to keep the inflammation at bay.
Can't wait to hear from @rosemarya @artscaping @gaybinator @2011panc @jeanne5009 @jenniferhunter and @laisseraler .

Mon, May 11 3:28pm · Help!! Severe itching with no relief -- not sure why! in Caregivers

Thanks so much for your input. Much appreciated!! It's my sister-in-law Grace that I care for having the issues. No food allergies — we just had testing done by an allergist last Thurs. We've also ruled out other skin / topical allergens from detergents, fabrics, etc.
I've heard of the oatmeal bath. Tell me more on how to do that. Use regular rolled oats, like Quaker Quick Oats, or something "specific"?

Mon, May 11 1:42pm · Undiagnosed Autoimmune Disorder - my mom in Autoimmune Diseases

@dgterofauto My sister-in-law was diagnosed with Stills early in 2019. We are on our second medication which is providing relief, but now she's experiencing severe itching. What medication is your loved one finding relief from?

Mon, May 11 1:38pm · Help!! Severe itching with no relief -- not sure why! in Caregivers

My sister-in-law (SIL) is severely suffering from itching over her entire body, with concentrated areas being her chest, breast & nipples, upper back, and buttocks. She's been diagnosed with Stills Disease (with eczema), hypothyroidism, and most recently lupus (May 8, 2020). She takes Kineret (anakinra), a low dose of prednisone for the Stills Disease; Synthroid for her thyroid condition, and nothing yet for lupus since the diagnosis is so recent. She started Kineret in Jan/Feb 2020. Her prednisone was just dropped to 7.5mg/day on May 7, 2020. We see her rheumatologist at least 2x per month. We visited an allergist last week and tests came back normal for food allergies. We are trying to figure out what will give her relief from her itching — Benadryl, and Allegra 180mg gives very minimal relief. She is NOT sleeping, which is only intensifying her issues. We desperately need help. Her itching is beyond severe because she is in tears! Help!!!!!