Is skin itching and open sores a symptom of SARC

I had Sarc on a lymph node and a spot on my lung. Everything has been in remission but for years I have itching skin to where I dig until a open sore appears. Is this a symptom of sarcoid?

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Absolutely. Those were my first symptoms. I know now that the itching was caused by inflammed nerves. Be aware of symptoms of neuropathy such as numbness and tingling, hot and cold sensations in your feet.
It's the worst itching I've ever known and was initially misdiagnosed as chronic hives. I scratched until I had open sores on my scalp, shoulders, upper arms and lower legs. The neuropathy makes the sores slow to heal, too.

You might want to look into seeing a neurologist.

God bless you and keep you.

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Thanks for the reply. I will follow your advise.

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I am taking remicade treatments and I itch so bad for several days after. I also read somewhere that you itch with lymphoma and it sometimes fluffs out after being diagnosed with sarcoidosis. I wouldn't take anything for granted with this disease. May God bless.

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As Janis said, "Absolutely". I have had horrible itching for at least 2 years. I was diagnosed with sarc in '08. I am not on any meds for the sarc and my doctor says it is not neuropathy. I don't have the numbness and tingling. I just itch! It moves around but is just about always on my back. It is also often on my scalp, legs, arms, my front, etc. I too scratch until I break the skin. I take Zyrtec every night and use a prescription cream Fluocinonide. Some of the OTC cortisone creams help a bit too but I have never found a real cure. Good luck with it and if you find anything else that works, please share.

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Have you had liver studies? That kind of blood work may reveal a common cause for the itching. Ask your PCP about it.


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Thanks, I'll check with him.

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I have the itching and scratching and the slow healing too, but only on my lower legs; around the ankels and on the shins and calves. My doctor took one look and said it was Erythema Nodosum and it is INDEED part of Sarcoidosis. It is one form of the skin version of Sarc. I saw a dermotologist who gave me some fancy expensive cream for exzema and/or psoriasis that didn't do a darn thing. Fortunately for me I had been given a STEROID ointment for the sores inside my nose I get from this fabulous disease and I figured, why not? It works like a charm!!! Whenever it flares up, I put that ointment on it and it clears up. It doesn't take much but you have to do it every day and even after it appears to be gone - about an additional week seems to do the trick.

HOWEVER, like IreneMarie said, it could be your liver and you should have that checked. Unbalanced / unhealthy livers cause excessive itching not to mention dry skin. My liver enzymes are always elevated so it could be part of that as well. My elevated enzymes could be due to Sarcoidosis or it might not be. We don't know. My next steps are liver function tests and not just the standard blood work checking levels and numbers that I've been doing for over a year now.

Good luck to you, Billie22. I know how much it drives me insane and it's only on my legs!

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Erythema Nodosum is very common and often is a first indicator that something is not right. You will definately need to see your doctor. I have perpetual itchiness and a feeling of sunburned skin - even in winter. I call this my "Itchy Wool Suit" - I blogged about once (see my page for website) and got a lot of feedback about others experiencing this same kind of thing.
Best of luck to you,

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Itching is a common symptom of systemic illness , the body releases more histamine as a reaction to systemic disease etc which can lead to the dreaded itch , always good to have liver enzymes checked though , as some auto immune liver disease can be associated with others such as sarc I.e primary biliary cirrhosis , chronic hepatitis .

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Yep. Itching no rash. Itching with rash. No itching with rash.

But never no itching, no rash.

Itching, itching, itching....

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Thank goodness for this site; have been itching/scratching/making myself sore for what seems to be years and the derm (bless him) said he didn't think (!) it was anything to do with the sarc.

I wonder if, should the medical profession ever manage to log on to sites such as this and actually read what people suffering from Sarc actually SAY instead of what they read in their totally inadequate medical books, some progress might be made in helping to cure this silly stupid disease?

We can but hope. Rant over. Good luck Billie.


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I've been wondering why my knees feel sunburned and itchy most of the the middle of winter in MN! Now I know what it is. Thank you all!

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I have been itching for at least 2 years. (mostly at night) Went to the dermatologist who thought it was a sun allergy. Live in California Central Valley where it is sunny/hot lots of the time. I recently have been diagnosed with Sarcoid. I visited him recently for a follow up. Told him about the diagnosis. All he was worried about were the common sarc skin problems. Thanks to this forum, I now know why I have itching. I too take Zyrtec every night. Interestingly, the other problem I have is terrible upper back pain after being in bed for 3-4 hours. That happens at night too.

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WildNorth & Shelam, You stated it so perfectly. I get so incredibly frustrated because the medical profession just doesn't seem to care or to take it seriously. Itchy skin, that doesn't seem very serious--- to them. My GP sent me to the dermatologist who said I probably have dry skin and to use lotion after a shower. Yeah, well I've been doing that for years but of course it doesn't touch the itch that a bunch of us suffer from.
OK, that was my rant.

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Yes me too, and the itching is getting worse. Yes I have some dry skin, and some irritation from the pool chemicals. But had creams are not doing much. Red welts that come and go. Red bumps that came and don't go. Crustie white tops on old brown marks.

Dermatologist just say "It's not cancer so don't worry about it, it is normal"

So I am venting until I see the new doctor next week.

God's speed

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Hi DJ, I'm sorry to hear you're itching too. Let us know what your new doctor says.
Hope to see you at the Sacramento meeting next month.

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Yes, I had terrible upper bad itching 4 months after being diagnosed. It was winter and I thought maybe age related dry skin even though I never had it before. After waking up night after night for a couple months itching my upper back, I went to the derm. He prescribed Triamcinolone-a steroid cream. Like Sammy 326 said, it worked amazingly well. It took a night or two to work, but such relief! I used it nightly for a couple weeks and thankfully it has never come back. I recommend that you try it. Good luck.

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This is SO frustrating!!!! My dermatologist and regular PC doc and several others have all told me they have no clue why I itch so darn much. I've been told it's because I have asthma and allergies, dry skin, eczema... nothing really helps make it better! I also have these small, flat, lumps? bumps? that I get on my lower legs, inside thighs, lower arms, and shoulders. Every doctor I've asked just looks at me funny and says see a dermatologist but he doesn't think it's anything serious. I thought he would at least do a biopsy of one but no. Nothing. I've had them for several years even though I was only dxd with sarc about 14 months ago. And I get the most darn awful itching across my back that sometimes makes me think I'm losing my mind! Atarax and Benadryl don't help very much. I take Singulair every night and Zyzal (next generation prescription Zyrtec I'm told) when really bad. Should I get a new dermatologist? Should I demand a skin biopsy? Or should I just keep plodding along as I have been??? The thought of adding yet another doctor into the mix just fills me with dread. I went to see my gyn in October and she wants me to see an endocrinologist because my TSH & something else (I can't remember what) were abnormal. My gyn wanted me to have a D&C because of endometrial thickening but when I went to her for follow up she changed her mind and said I really should have a total hysterectomy instead. Wow. That was a really long rant and ended up a long way from just itching but I'm SO frustrated!!!! I am just sick to death of doctors, tests, procedures, surgeries, and meds. Especially after this last pacemaker fiasco. If I were a horse, they'd have sent me to the glue factory long ago! Sorry to grumble and whine so much but things are just really starting to feel overwhelming. I wish this stuff WAS just all in my head. At least then maybe I could take just a couple pills and move on with my life. Anyone else ever feel like their life is nothing more than an endless medical merry-go-round? I would really like to get off this stupid ride forever. And my family thinks I do all this because I like the "attention." Except my husband. He believes me because he's seen what I go through and, trust me, I thank God for that mercy every day. OK, going to do some deep breathing and calm myself down. It WILL get better.

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God bless my pulmonary doctor. He referred me to a dermatologist who specializes in imune-related dermatologic conditions. She nailed the diagnosis the first time she saw my legs, even though I had had the most recent flare for almost 3 months and it was starting to go away on it's own. She told me to see her immediately the next time I have a flare because there are external creams she can prescribe that will greatly reduce the itching and swelling.

For twelve years I suffered multiple flares of erythema nodosum and every doctor misdiagnosed the issue and put me through a battery of tests or antibiotics for possible causes like blood clots, cellulitis, vasculitis, etc. None every acknowledge the itching symptom and the fact that the condition existed on both legs simultaneously. In the end they would all just shake their heads and say it's a rash. Use OTC ointments and live with it.

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Hi all,

Has anyone got facial itching with rash, extremely dry flaky skin, (using tons of moisture cream), itchy eyelids and ears? Trying to avoid steroid cream on face as it makes the skin thin. Aloe vera gel helpful with itching, but problem not going away. Today was bad.

My rheumy thinks it is not sarc related, but has to do with medication I am taking - side effects. He has taken me off a few - one being plaquenil which is supposed to help skin problems, so........

Today this has got to me and I am feeling bad.

Any ideas for relief would be appreciated.


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