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Sjogren's Syndrome Support

Itching

Has anyone been bothered with itching

Ugh! Yes!! Not sure if its the dry skin, the sensitivity to things (I get the mini popup rashes) or the neuro-type symptoms at any given moment but boy it can drive me nuts.

Have you talked to a doc about the possibilities? What have you tried so far for it? I am sure the others here can come up with lots of home remedies that will help, if you don't mind giving a little more info.

I’ve been itching like crazy. Sometimes break out in a rash but other times it doesn’t even feel like itchy skin. More like it itches several layers deep. Drives me nuts.

My MD. Referred to to a allergist she gave me some to use after I get a rash!! Wow!! N I take a 1/2 of Benadryl tablet every night.

Oh my gosh YES!!
I have been tortured by this off and on. Turns out I had an allergy to Plaquenil which was diagnosed by a skin biopsy. So, check your list of meds. It can also be dry skin which was a problem for me as well. I was lucky to find a very smart dermatologist who stuck with me until he figured it out.
Of course Sjogren’s is also known for mystery rashes so anything is possible.
Hope you find a dermatologist to figure it out.

Hey Toni, its that odd feeling under the skin that is the neuro-stuff for me.

I take an Allegra 180 every night, year round and then use a touch of Benadryll cream on the rashes themselves which settles them back down quickly. Of course, lotion or baby oil after every shower. It all minimizes the symptoms but that little annoying feeling of a hair on the skin, etc never truly goes away. I had to teach myself to stop swatting at mosquitoes that aren't there. LOL

I've suffered with hives for many, many years. I still get hives, but also a red rash, that when I scratch, tiny water filled blisters pop up. Seem to get them in the same locations all the time.

I have this all the time. My doctor told me to stay hydrated with water and use oatmeal baths. I do take benadral at times.

Yes it is standard SS = urticaria (hives) caused by monocyte infiltration of the epidermis (exactly the same as the saliva glands and very other tisue cntaining M3 receptors. Old fashioned anti histamine late evening helps but puts you out.

No treatment or cure purely palliative as ever with SS :(

Thank you all for your responses to this.

I just asked the Doc who had diagnosed my SS and she didn't know

and as a few have said, it was making me nuts "a few layers deep".

At least now I know to try a Benadryl.

Yes on the itching. My doctor prescribed a cream - Hydrocortisone 1% & Idodquinol 1% made by Glades. Then a friend told me about a cream that she found at Big Lots. It is Anti-itch allergic cream, 2% Dephenhydramine Hydrochloride. They also have a 1% anti itch cream. I was so surprised that both helped my itching! I think that they are about $2 a tube. Much better than paying for a prescription cream. Yes, Benadryl can help, but I don't like feeling sluggish in the morning. Good luck!

Yes, usually on my forearms up to just above my elbow. It starts out itching, no rash no redness, just itching. But then I scratch and a rash comes up. This is just backward, isn't it? I have had this itching on my midriff, abdomen, legs, but the forearms are really often. This is weird, too, it occurs only on the top side of my arms, never on the underside.And yes, it drives me crazy too. My doc has prescribed a cream--it doesn't work. I have tried all the stuff you can buy over the counter and found that Scalpicin works as well or better than most. It is made for itchy scalp , so you can find it in the hair care section near the dandruff treatments. It is a hydrocortisone 1% liquid in an alcohol base. Don't know why it works better than the creams and ointments of the same ingredient, but I guess it's the alcohol. If you use it and are worried about the alcohol drying your skin, you could use a moisturizing cream afterwards. I take an allergy pill every night (with all my other meds) and later at night if I wake myself scratching or it starts up during the day I take a benadryl. That does help, but of course it takes about 45 minutes to work.

Have you had your blood work checked lately for your liver, Wendy? I read that sometimes liver problems can cause itchy skin.

DTL88, thanks for that info no I haven’t but I will call my dr. Today! Pray everyone have a great weekend.

Itching around my ears!! Can't do antihistamines! They dry you out even more. I use olive oil and other essential oils for all kinds of complaints associated with Sjogren's and it helps a lot. About 10 drops of oil in bath water (just soak for a long time) helps dry skin. Don't RUB your skin with a rough wash cloth or dry too aggressively with a towel. PAT yourself dry. Your dry skin can become injured by the rubbing.

Is there a blood test that will say I "definitely" do not have SS? AGAIN, I have the same exact issues as this group....ITCHY, ITCHY, RASHES to the point the it is interfering with my sleep. My new Rheumy stated that he took all of the blood tests for SS. They all came back negative so I definitely don't have SS. Before this Rheumy, I had to get rid of another Rheumy at the same hospital. I had been sewing Rheumy #1 for years and e hadn't even tested me for SS. He felt parts of my body and diagnosed me with Fibromyalgia within about a minute or so the 1st time that we ever spoke. It was yrs. later when I started chocking b/c my mouth was so dry. It was that scary situation that made me go to a primary physician. That PP noticed my CRAZY dry mouth. It didn't take her long before she mentioned that she thinks it's SS b/c I couldn't even speak correctly without my lips sticking to my teeth. She gave me med. for the dry mouth and stated that I needed to see a Rheumy. I told her that I've been seeing a Rheumy that diagnosed me with Fibro. years ago. I could tell that she was kind of surprised with my answer. That is one of the many reasons why Rheumy#1 was fired. I was given the name of

Rheumy #2. He's the Rheumy that had me take the blood tests that all came back negative. I soon discovered that they both worked together in the same group. Now I don't trust either. I'm so frustrated. One more serious issue. Both times that I went to Rheumy#2, he stated that my medical records were all blank from Rheumy #1. Rheumy #2 showed me the blanked out information at my first visit. It was my 2nd visit that he said my info. was blank so he was going to take blood tests to check for SS. His assistant called and left the message. She didn't even bother to tell me to call back to make another appointment. When I did call for more meds. for my dry mouth, they did call in a prescription for me. That's the last that I heard from their office. If I knew he was partners with Rheumy #1, I NEVER would of made a choice to go to Rheumy #1's partner. I wouldn't have ever trusted that type of a "partner" situation. Can anyone please help me?? Thanks

Confused

If you are presenting with symptoms of Sjogren’s you can ask about getting a lip biopsy. There is also a blood test from Immco that is supposed to give reliable results. Some doctors will treat based on symptoms because not everyone has a positive lab result.

Always keep copies of your labs after they are done. See what records you can get from your prior rheumatologist and move on to someone who is willing to help. I went through a few before I found someone I trust.<<br /> Btw blanking out info sounds the same as altering a legal record which is illegal.br />
Good luck.

Thanks for your reply. As crazy as this sounds, sometimes I get so sick and tired(literally) that it makes me feel sicker going from doctor to doctor to doctor. Unfortunately, I'm left with no choice. Thanks again

Cassi440 said:

Confused
If you are presenting with symptoms of Sjogren's you can ask about getting a lip biopsy. There is also a blood test from Immco that is supposed to give reliable results. Some doctors will treat based on symptoms because not everyone has a positive lab result.
Always keep copies of your labs after they are done. See what records you can get from your prior rheumatologist and move on to someone who is willing to help. I went through a few before I found someone I trust.br /> Btw blanking out info sounds the same as altering a legal record which is illegal.br />
Good luck.

Hi,

Several years ago I went to the HMO doc for itching. It was not the kind of itching that made you scratch the area but more a tickling sensation. At that time I was not diagnosed with SS. The sensations went away...the sensations seem to get aggravated if I am in the sun now. I went for accupuncture and that seemed to help.

2akl



2akitalover said:

Hi,

Several years ago I went to the HMO doc for itching. It was not the kind of itching that made you scratch the area but more a tickling sensation. At that time I was not diagnosed with SS. The sensations went away...the sensations seem to get aggravated if I am in the sun now. I went for accupuncture and that seemed to help.

2akl