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Ask the Expert: “How can I manage my vasculitis so that it doesn’t become too severe?” 

Vasculitis usually manifests with purplish skin lesions on the legs and sometimes the trunk. It is usually associated with high levels of gammaglobulin in the serum. The skin may become easily irritated and even break down in areas where numerous lesions develop. The skin around the ankles is most susceptible. Skin break-down and ulcerations may form. 

Although severe vasculitis from Sjögren’s may require hydroxychloroquine (Plaquenil), oral corticosteroids and immunosuppressive medications, milder forms can be managed with simple conservative measures. 

Skin breakdown occurs with greater frequency when there is fluid accumulation around the ankles so measures that minimize edema (excess fluid accumulation) in the legs can be helpful. Such measures include elevation of the legs and the use of support hose. When sitting, your legs should be propped up on a chair and not left dangling for too long. Support hose to control edema should be of the above-knee variety. Hose that bunch up below the knee may actually act like a tourniquet and impede blood flow in the legs making edema worse.

Mild trauma to the skin of the legs can also favor skin ulceration so wearing pants may provide an extra layer of protection. Edema can also be controlled with diuretics. Some patients with vasculitis may benefit from low dose aspirin to keep the blood vessels open. 

Of course these conservative measures should also be applied in instances when immunosuppressive therapy is needed. Consult with your doctor if diuretic therapy or low dose aspirin is right for you.

by Herbert S. B. Baraf, MD, FACP, MACR

This article was first printed in  the Foundation's patient newsletter for members. Click here to learn more about becoming a member. 


Comments

— Oct 19, 2020

I had a positive lip biopsy, positive symptoms but negative blood tests 12 years ago. Never got diagnosis but am plagued with severe neuropathy now. Just had a positive ANA but negative Ssa and SSb. I know I have this but no diagnosis is frustrating.

Hi Judi,

I have bad neuropathy too .. and I was diagnosed with lupus in 2010 as I had a positive Sm/Rnp ..

I have a condition called monoclonal gamapathy (IgM) type that my mother also had but her turned into the form of lymphoma. She too had bad neuropathy that was haunting her long before her diagnosis. At that time they didn’t know that IgM type of MGUS is notorious for causing neuropathy.
However, my rheumatologist is running Sjogrens labs again because of my mouth, eyes, and other symptoms including the neuropathy and he said there is a new test with a higher level of sensitivity ..
I hope you find answers. These autoimmune diseases are hard to nail down (I also have bronchitis, and sinus problems) because as he said a while ago often the antibodies hide with rheumatic conditions ..
I’m really surprised that you weren’t diagnosed with your biopsy being positive.
(I also have vasculitis and as many people have said, incl drs “these autoimmune diseases like to run in packs .. yay huh?)
Good luck!!

I have sjogrens and lymphocytic vasculitis. It took over 20 years of unexplained symptoms, i.e hives, rashes, dry eyes and mouth, blisters on legs and years of abnormal blood work to finally having a diagnosis. I'm on a ton of immunosuppressant meds and steroids among other things. That being said the lip biopsy was not as necessary as the tear duck test from the opthomologist. My rheumatology doc ordered that and with all other symptoms and issues its was finally a diagnosis. They believe alot more is going on but it's a start. These immune diseases are so similar and the symptoms vary from person to person. It's very unfortunate how long most of us suffer b4 a diagnosis. You should try a tear duck test, very easy test that does.not hurt at all.

I have read that as many as 17% of Sjogren's patients are serum negative. I reccomend you join the Sjogren's Foundation for additional research, information, treatment and new research studies.

— Oct 26, 2020

I had it all my life but would like to know what kind of moisture for my face and makeup to use my eye lids get very very dry and skin

I have very dry mature skin that is worse due to sjogren’s. I have found that using a product with hyaluronic acid (Revision’s Hydrating serum) helps hold moisture in the skin. Apply it after cleansing and before moisturizer.

I’ve tried all of the moisturizers and the best one overall is Laroche-Posay Triple Repair Moisturizer. It can be used on body or face. If you prefer the higher end moisturizers Skinceuticals Triple Restore or A.G.E. Interrupter are great.

Don’t forget sunscreen! Laroche-posay’s Melt in Milk is one of the best.

— Oct 31, 2020

I had a drug reaction and am in my 3rd month of intensely itchy rash that has erupted in small blood bubbles [where I have itched and not] and truly scary wide veins in my right hand and wrist that appeared to be black blood under the skin. I am quarantined to avoid covid and followed my much loved Sjogren specialist's many directions and my symptoms have abated about 70-80% but I fear this is may be a more serious case of vasculitis and it's here to stay. I have been far less active since covid and this has taken my sjogrens, already difficult, to a sicker level. I want it gone!!

— Nov 20, 2020

I recently diagnosed with sjogrens ..my under foot is paining when i walk.does this symptom is common in sjogrens?

I have the same problem and would like to know people’s experiences with a variety of types of foot pain. I also have neuropathy which I think is fairly common with Sjögren’s but have other pains as well.
Best wishes to you.

— Feb 24, 2021

I am looking for a Sjogren's specialist in Northern Virginia: Herndon, Reston, Chantilly, Fair Lakes, Fairfax or nearby. Anybody have a recommendation for a really good specialist?

If you find any one who cares please let me know.
I live in falls church. I have been diagnosed with Sjogrens, however my
doctor is horrible. The only time my issues were ever taken seriously was when I was in the ICU.

Hello
I live in Baltimore Maryland, I have Sjogrens with HS , I sometimes test positive for lupus sometimes I test negative
I have trouble back pain
My bloodwork shows no signs of disease at times.
I started forming fatty tumors in1996, now I have tumors in both quad muscles and one elbow, my tumor are untangle in both legs
My fingers started swelling and blisters in top of my fingers
When this happens I can pick up or touch anything
No doctor at John Hopkin can tell me what wrong with me
The pain in my legs at night are the worst
Please I’m begging if someone’s reads
this message, please email me
james.4010@ Comcast.net

— Mar 26, 2021

I am looking for a really good doctor who understands Sjogrens in SE Arkansas or NW Louisiana. Does anyone know of anybody?

— May 25, 2021

Hi, I was diagnosed in 2009 by my optometrist. I have horrible vasculitus. It’s all over my thighs and bottom. I could never get a diagnosis from many dermatologists. They itch and then are very painful that I cry a lot. I ask God why me? Does anyone know the proper treatment fir the sores?
I also have list many teeth. All the ones I hit root canals on are gone. I wish Medicare would cover tooth replacements or even part of it. I was a premier when born. I was born 4 months early abd the doctor said I would have teeth problems because during your fifth month your teeth start to develop. Mine are literally crumbling. Sjogrens has taken most of my life away because of the symptoms😢

I am so sorry you are having to live in such pain. I have vasculits as well. I have had multiple gum surgerys trying to save my teeth, eventually i wont be able to afford that any more . I have nuropathy and am just generally in pain, lumps in my skin that turn into sores, cyst in my fingers ....
Your not alone. I guess thats all I wanted to say .

— Aug 24, 2021

After taking prednisone 20 mg for five days once daily, l very thin stools when using bathroom last this a side effect?

— Dec 9, 2021

Hi I hav Sjogrens and like everyone else it took forever to nail down because I looked ok on the outside ! Ha fooled all those MD's for years they minimized my symptoms even a Mayo Rheumatologist. Anyway Neuropathy, Burning Mouth Syndrome, Trigeminal Nerve damage and neuropathy everywhere, face, arms, stomach, and trunk, thigh, but not on my hands and feet ! Praise the Lord. Does anyone take any biologics if they develop this much neuropathy? Where is the prevention here? Do we just wait until we fall down for treatment? Lyrica, Hydroxychloroquine, and Prednisone are my friends at the moment. I still can walk 5-7 miles per day and swim almost a 1000 yrs a week despite my Sjogren's. Exercise definitely helps problems with sleep.
Memory is a problem now. But did have Covid 19 and survived it well.

Hello
My name is Jacklyn, I live in Baltimore
I have sjogrens with HS
Now I have tumor in both legs and elbow
Tumors are untangle in my quad muscles, I can’t walk or stand on my legs for long periods
My memory is trouble, I have two degrees and I can’t remember how to spell
My fingers swell for no reason
Doctors at John Hopkin can’t help me
Because my bloodwork comes back positive some months and negative other months
I feel like I’m losing my mind sometimes
No one can tell me what wrong with me
When I read your comment, it felt like some of same issues
I hope and pray every night that someone will read this message and reach out to me
I don’t know where to turn for help

— Mar 20, 2022

Has anyone had CNS Vasculitis? I was diagnosed with it and wondered if that was caused by
Sjögren’s.

— Jun 13, 2023

Hello
I have sjogrens along with HS
Trying to find someone who has tumors with this disease
Please contact me at my email

— Aug 27, 2023

Hi n blessings to fellow Sjogrens heroes. I’m in Western Australia 5 hours from rheumatologist. No one here gets how debilitating, tiring, painful and worrying this disease is. Now my leg has swollen up, my ankle and foot too. Is this part of SS?
I’ve started taking mushroom extracts which do help, especially the sleep one, which is great when your feet n legs are in pain. Any ideas on the swollen leg?

— May 13, 2024

Please help me Crohn's and hashimoto vasculitis and fibromyalgia and Parkinson's and hydatid cyst in brain and blood in urine and photosensitivity and skin rash and so many symptoms im from Libya

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