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Posts (135)

Sun, Feb 16 5:26pm · Grover's Disease in Skin Health

@gardeningjunkie ….I remember well we spoke in length about all our symptoms and remedies. I just dont post here very often, but I do check in from time to time…so I remember you very well. You've been helpful. As for MGUS related to lymphoma, I have no idea. I did specifically ask my oncologist last year, and he said I have IGG KAPPA, with very low IGM'S which are the healthy main white cells to fight infection. One thing I believe, my rashes started 1st, then I was diagnosed with MGUS. I'm sure drs aren't connecting the dots on the two, but I feel something is wrong. There's really not much more they could do for me, except monitor my bloodwork, and see derm for skin issues.
I did take photos of my body when I broke out badly, and scabbed, because by the time I get an appt I'm almost healed, so I don't think they believe how sick I felt. I dont have pain, but, I had severe fatigue, and chills…I think the papules may hurt. I'm so done with witch hazel and every topical, yes, I've eaten cilantro…not doing that every day. I even shaved the papules and applied peroxide, out desperation, or maybe I was losing my mind(no sleep)…I slept with a brush so I could scratch after hours of resisting…(mental torment). One night back in 2013, after a day the beach, I thought maybe the sun and salt water would draw out the rash. The complete opposite happened that night, so, so, bad, covered in red itchy hot bumps. I literally sat on the bathroom floor and cried…I took my shaving razor and shaved off the rash…then drenched myself in peroxide. The stinging burn was actually a relief. Looking back, I feel so bad I resorted to desperation, and did that. Thankfully, now, if that happens I've got meds and prescription cream.
Nice of you to look up MGUS, and informing me. I'm not ruling out lymphoma, because I've had enlarged lymph nodes , one surgically removed in 2014, but tested benign…all so very strange.

Sun, Feb 16 7:22am · Grover's Disease in Skin Health

@gardeningjunkie , as for the Hydroxyzine, idk whether its addictive…my guess is that it makes people sleepy/drowsy like any strong antihistamine, so there may be regulations on dispensing. I was told to double up, so that's why I needed a refill…then nurse said, not appropriate to my pharmacy. Meanwhile she was the one who upped the dose…crazy. But as I said, when I was in full blown rash, hydroxyzine didn't give me those side effects. I think I was so distraught and uncomfortable it would have taken alot to help me…idk. My dermatologist at Mayo then prescribed plenty of hydroxyzine with refills for 1 year after seeing me and taking 3 biopsies…no problem at the pharmacy or insurance…go figure .
Yes, I see oncologists at Mayo clinic every 4-6 months to monitor my MGUS.
I also truly hope we get through this spring and summer, rash free!! I'm a little worried I'll admit, because I've been getting pop up rashes, and feeling itchy already. I can deal with that, but not all over my body with those papules, UGHHHH!!

Sat, Feb 15 4:34pm · Grover's Disease in Skin Health

@gardeningjunkie …as for the hydroxyzine…when I had the full body outbreak, I needed to double dose. I dont think my local dr could grasp my severity of 24 hour stinging scabby itchy papules and the the effects of not sleeping for weeks. Allow me to share, that when I went for a refill, my pharmacist at publix called me and said they were declined refill because my attending nurse(same drs office) said it's inappropriate. WHAT!! So now I'm considered an addict. I've posted pics about 1 1/2 yrs ago , of some areas of rash, asking everywhere for advice.
I finally got back in with Mayo, already an existing patient there from 2013 for skin rashes. My dr there had retired, so I was pushed ahead for 3 months. How could i wait 3 months in this condition?? But when my oncology nurse saw me, she insisted I get seen, which I did. So getting back to hydroxyzine, no problem, prescriptions ordered along with doxipen, hydroxyzine, and daily allergy pills…and you know, the soap,prescription cream, wet wraps, etc. Several skin biopsies. Thankfully, I have not touched a pill since. Like you, when I was in full blown rash, hydroxyzine didn't have much effect as to drowsiness. When I was tapering off, then I did feel sluggish and very down.

Sat, Feb 15 6:36am · Always run down with MGUS in Blood Cancers & Disorders

@gingerw , good your in Mayo Clinic. I am too, here in Florida. I'm very pleased with the care, and I really like my oncologist. Seems they assign a nurse, or P.A to discuss labs with me, so I don't always see my dr. I could always ask to see him afterwards. Last time, everything was well explained, so I glad to leave and didn't ask to see him. My next visit in April again will be with another P.A…I really don't like it, but I'll most likely ask to see my Dr to let him know how I'm feeling.
I've had a bone marrow biopsy done in June, so no questions about that, I gave some details in my original post here, but thank you.
I did pretty ok…not a very pleasant experience, but bearable. Only thing, I probably wasn't completely healed when I decided to give my 70 lb Lab a bath…I lifted him into the tub, and that night I was in pain that lasted for 2 more weeks. My fault.
Keep me posted on next visit to dr…I hope for best for you!

Fri, Feb 14 6:47pm · Grover's Disease in Skin Health

I meant to add, no real hot showers, just warm, and I was told to use Vanicream bar soap, and body cream. I also watch my sweating, I live in Florida and spend alot of time outdoors…so I immediately shower, apply Vanicream, and I like Ammens medicated powder. I honestly can't say what triggers these rashes…been 6 yrs, and believe me, I've tried just about everything and the list goes on. Its horrible, and maddening and the second I feel an itchy rash, I just about freak out with the anticipation of severity. Mostly they are spotty, but when I get them widespread, like measles, I get sick with fatigue and chills.
@gardeningjunkie , I had not heard GD may be associated with the shingles vac…I'm supposed to get mine…yikes!!

Fri, Feb 14 6:34pm · Grover's Disease in Skin Health

@pitch25 , I've had these rashes since 2013…they range from severe and just about all over my body, to just spotty at times. Thankfully the widespread happens occasionally, last was 1 1/2 yrs ago. I had to go on hydroxyzine and doxipen. I use and like the same cream you use, triamcinolone. I mostly get pop up rashes on my torso, and neck, and this cream helps after a few consecutive days. I've been prescribed several different topicals, of no real help. My dermatologists from Mayo also suggested after applying this cream to use wet wraps by taking a cotton t-shirt and soaking it in cool water…ring it out well and put it on over the cream. Stay in it about 1 hour. Its soooo soothing, but sounds yucky. I then wear a terry robe so I don't get cold.

Fri, Feb 14 5:43pm · Always run down with MGUS in Blood Cancers & Disorders

@susangs, I had to look that one up…think its classified as a chronic fatigue, but pretty severe. Alot of possible causes…viral, immune disorders, and more. Seems some drs dismiss alot of our symptoms being related to MGUS. In my case, as I shared ,my fighter cells are very low, leaving me very susceptible to infection…that the drs did say is from the abnormal cells crowding it out. IMO, maybe that's why I get so tired, feeling run down…I really don't know. I would think your dr ruled that out for you, since she said you have this chronic fatigue…but doesn't hurt to ask if all your healthy white cells are within normal range. Not anemic either, right? It is verrrrry frustrating, and more so when we suddenly experience symptoms that baffles drs. I also get SEVERE RASHES,( maddening)started 6 years ago, and night sweats which are getting worse. Last skin biopsies state similar to Grovers disease. They dont know what triggers it, but I have to be careful about sweating, and topicals, etc.
As for night sweats, last oncologist I saw, said, as long as I'm not soaking through the sheets, hes not too concerned.
What can I say…my guess is, if the numbers on bloodwork aren't out of range, the drs dont connect the dots. Maybe if enough patients share similar symptoms, they'll start recording it. Sometimes I feel like I don't know why I bother to go anymore. If things get bad enough to show on bloodwork, then that's when I may get help…IDK..Shrugg.

Fri, Feb 14 4:29pm · Always run down with MGUS in Blood Cancers & Disorders

@gingerw …also, I was wondering if you had a bone marrow biopsy…only if you don't mind sharing??