Severe itching

HI, I was diagnosed with sarcoidosis 6 years ago. The past year and a half I have been dealing with severe itching. I take prednisone and 2 prescription antihisamines. Last year the doctor wanted to do skin allergy testing but I could not stay off medication for 5 days. Now he wants to try again. I tried to only take one medication a day to wean off and I am in agony. I have hives and itching, my chest hurts, stomach aches and I feel like I am going nuts. I really want to have the testing done. Has any one gone through this and if so what did you take to ease the itching? Also, the doctor wants to try IVIG on me. Does any one take that? I was on Remicade but it acted like fertilizer in my lungs. I got worse. I am at my wits end. Thanks, Cathy

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During the first few years of sarcoidosis, I scratced my legs so much that they were always bleeding. Now my legs have permanent scar residue. After the first few years the itching came and went, but almost always on my calves. Now the itching is almost non existent.
Still have sarc but thankfully the itching has stopped.

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Hi, I have the itching everywhere. And when it flairs up it also makes my stomach ache and my lungs feel like they are heavy. Plus it makes me aggitated. I would rather take pain then the itching. And of course no one seems to know why this is happening. Every doctor has a different answer. I am just wondering what anyone does for relief. Thanks, Cathy

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Cathy have you tried soothing baths when you itch? Soak in some oatmeal - it's weird but effective. Also you can make oatmeal "packs" to put on your skin. You can also alternate that with cold packs but that could backfire as the skin heated back up.

For the jumpiness, there are various aromas that are good for soothing. Lavender is one. Check out "aromatherapy" for more information on that.

A sleep mask can relieve anxiety and that "jump out of your body feeling". Just put it on when you feel the worst and lie down for a bit.

One last suggestion - put on some soft, soothing music and try to focus on anything except your body - think of when you felt good and put your mind there and enjoy the thoughts. Remember to breathe slowly and deeply.

You only have to get through five days. You can do it.

Hugs, Michele C

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Thanks for the help. I only use Aveno to wash but I might try the oatmeal packs. I am going to check into more natural methods. I keep telling myself only 5 days. Hopefully I make it this time.

Cathy

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Cathy, I had a itching problem a couple years ago. The doctors thought i had the shingles.They gave me creams, increased my pred.Took skin cultures, Did all that, then they got a blood test for vit. D .they asked me if i was taking vit. d i told them no. the vit d was so high,my body was trying to get rid of it through my skin through a rash. I,m Not saying thats what it could be ,just what happened to me.
Larry

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Hi,

I had spotty itching for several years and the doctors did not know what it was or how to treat it. When I got diagnosed with the Sarc and went on Medrol, the itching magically stopped.

All the best to you.

>Ana<

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Cathy,

You might have your doc check you kidney function. If your kidneys aren't getting rid of toxins they will cause itching. That was my case.

Sabrina

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Cathy, the itch you describe is what sent me to the doctor and eventually led to the chest x-ray that led to my diagnosis. Before my diagnosis, I was given creams and ointments, which didn't touch the itch! The only thing that helped me was the prednisone, which I stayed on for months.
I pray that you will soon find relief from the pain of itching. I know what a horrible thing it is to deal with.

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Cathy, I constantly have itching, especially my back. It has not improved on prednisone. I have scar tissue on my ankles from scratching so hard that I have raised blisters. The doctors won't link it to Sarcoid, and my liver functions are normal (liver problems can cause severe back itching)....I am stumped, too!

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Hi, I went to my pulmonary today. He is stumped also. He wants me to go see a specialist at a University Hospital. I made an appt. at The University of Penn in Phila. Has anyone every been there? I think I will ask this new Doctor to do an open lung biopsy instead of the bronscopsies that I have had. While on prednisone the granulomas are ok but going off they come back with a vengence. I can't stay on steroids forever. Plus all the other issues that come along with sarcoid. Maybe I can get some answers. Thanks for all your help.,.

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Hi Cathy, please have your liver checked. Rick wa s the same way itching so bad that he was raw, lft abn, fever. He had ct that showed enlarged liver/spleen. Just had liver bx & he now has liver sarcoid. Hope this helps.
take care
Rebecca

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I have had bouts of extreme itching with no rash. I had biopsies of knots in arm, leg, and face. I had kidney function tests. I found out nothing in the end. I have a kitchen utensil that I use as a back scratcher. I have scratched enough to bleed. It just seems to come and go with no pattern. It varies between itching and extreme itching.

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Hi everyone! I'm new to your forum. I replied to another post not too long ago concerning tapering off prednisone, but this is the topic that first drew my attention. Forgive me for my long post, but I am so grateful to have found your site that I want to make sure I tell my whole story. Maybe I can help someone as you guys are helping me just knowing someone else out there can relate to what I've been experiencing. I have not been told that I have Sarc, but after reading through this thread and some of the others, it does make me wonder. A persitent, dry cough that went on for more than a month led me to consult with a pulmonologist. The initial diagnosis was (after CT Scan and bronchoscopy) Idiopathic Pulmonary Fribrosis (scarring of the lung tissue, source not known). Four months later in March 2006 came a new diagonosis of Rheumatoid Arthritis. Needless to say, I've been on many meds and have had a litany of sypmtoms. Itching to some degree has always been one of those sypmtoms. Last year the itching was in the palm of my hands and mostly in my back. I have scars in my back from scratching. The prescription creams didn't work and the skin biopsy came back normal. The dermatologist's opinion was that I had some kind of allergen, but he could come up with nothing. I didn't think I was allergic to anything since nothing had changed with my eating habits nor was I using anything on my body that would cause such a disturbance, but with allergies one never knows. The itching finally stopped on its own. Then last week happened! I developed a severe itching. On Friday morning (July 22, 2008), I went to an urgent care clinic (the co-pay is less than the ER) after having not slept in two days because my legs (from my knees on down to the top of my feet) itched so badly. I was MISERABLE. I had taken over-the-counter benadryl, benadryl tablets, hydrocortisone cream, steroidal creams that the dermatologist prescribed last year; and increased my dose of prednisone to 10mg and then back down to 5mg, all in one week. Nothing worked! I begged the doctor at the clinic for a shot of benadryl; I told him I needed relief today, as in right now. He also wrote out some other things he wanted me to take (including allegra). Still, the itching did not go away. Thank God for my mother (I had moved back home shortly before the diagnosis with RA). She called the clinic back and spoke with the doctor seeing that the benadryl hadn't even put me to sleep, much less stop the itching. He called in Xanax to my pharmacy. I took this drug and went to sleep in about an hour or so. When I woke up in the morning, I was itchless...all gone, except that I felt a heaviness in my feet. I thought it was due to the heavy duty scratching with which I assaulted my legs for 3 days, but I soon realized that my feet were swollen and still are to some degree. When I spoke to my friend Nicola today, she told me to definitely get a liver and kidney function test, just like NYjets recommend above. Not only am I going to get these tests done, I'm going to get a test for Sarcoidosis. I know that a lot of these autoimmune diseases mask each other because the symptoms often overlap, but this is the closest connection I've seen to RA. Thank you all for sharing your stories and in the process giving me some well needed information. God bless you all.

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i was diagnosed just over a year ago and have just started itching although it is very mild and sporadic. I am hoping it does not get as bad as yours. I am sorry you are so uncomfortable it must be really distressing. Does it keep you awake at night? I find that spraying my body with Avon Skin so soft (soft and fresh or soft and gentle) helps stop my itching, surprisingly it also keeps away mosquitos! Hope uou get relief soon.

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These sound like good ideas will try them. Love jane

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Hi, Even with being on xyzal, clarinex, prednisone, lexapro and others I still have break through itching. My ears are clogged and nothing is helping that either. They became clogged when I had to stop taking the antihistamines for testing. Now this Fri. I am supposed to stop again for testing. I don't see what the testing will prove since they only look for typical allergens such as ragweed, pollen etc. The itching we all have is from our immune systems being so messed up. My vergio kicked in also when I stopped taking the anithihistamines. I just wish someone could find a reason why and make it go away..

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Itching here too. Different parts of my body at different times. Its the worst on the tops of my feet. I scratch them to the point of bleeding. No rash, just the marks from my scratching. Also itch in my pubic hair real bad sometimes (TMI) (itching always seems to be during the night) occasionally during the day. I have fathom rashes every now and then that last for weeks (steroid cream works). But I never tied any of this to sarcoidosis until my abnormal chest xray. I have had nothing like some of you though with the bumps, etc. Mine looks like an ordinary rash.

God bless you all and keep writing, it makes me feel like I am in more control.

Marlies

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It was the hives that lead to my diagnosis
my allergist had me talking allegra am
zyrtec pm
benedryl middle
as the hives lessened - it was just zyrtec pm for 30 days after they went away - she felt that broke the cycle of the cronic hives and it seems to work

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HI, I had been taking Zyrtec for years. When the itching started last year it did nothing. The allergist had me switch to xyzal and clarinex. It helps but I have breakthoughs during the day off an on. As of this Friday I am supposed to stop the anithistamines again to repeat the testing. I don't know if I can do it or not. And the testing that is done had nothing to do with immune itching. I like this doctor alot so I am going to give it another shot. He seems to really want to try to help me. He calls me himself with results. I am wondering what I can take for the itching that won't interfer with allergy testing for a few days.

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Hi Cathy5

I itch all the time and it drives me totally mad. It is from head to toe. If its bad at night I will take a Benadryl but during the day I use Claritin as it is non drowsy. It seems with this disease its always something it just is the disease that never quits. Good luck with your tests, you will be in my prayers.

Jewel

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Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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