New symptoms Tumid Lupus and Hashimoto hypothyroidism

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shel3
New Member


Date Joined Dec 2008
Total Posts : 2
   Posted 2/10/2009 9:32 PM (GMT -7)   
I have been diagnosed with Tumid Lupus and Hashimoto hypothyroidism.   I have been treated for hypothyroidism for about 6 years but was diagnosed in August with Tumid Lupus and Hashimoto in September.  I take Synthroid and Plaqenil.  At this time my TSH levels are good but there is something suddenly very wrong.  Since December I have had two eye infections and extremely dry eyes.  I have worn
soft contacts for 31 years with very few problems.  But, due the dryness and discomfort I have not worn contacts.  I still have dryness, mucus, and some discomfort.  (Even light sensitivity.)  In the last week my rash has intensified and I am having alot of joint pain.  I am going to a new dermatologist at Cleveland Clinic next week (my rhem. doctor thought the lupus was contained just on my skin, ANA positive at first now it is negative).  Is eye dryness a common problem with tumid lupus?  Does the serverity of symptoms come and go?  Although my eyes were dry, I felt great last week and my rash was minimal.    I just need answers, do you have any?

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 2/11/2009 9:34 AM (GMT -7)   
Hi Shel,

I don't know anything about Tumid lupus but if your symptoms are worse or you have new symptoms that sounds like you are in a flare to me. Maybe you should put a call into your doctor. I hope you feel better soon! Take care and keep us posted on how you are doing.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 2/11/2009 10:39 AM (GMT -7)   
Hello Shel,

Welcome to the forum. I'm sorry that I don't know anything about Tumid Lupus either. But I also have a rheumatologist at the Cleveland Clinic. Are you east of the CC or west or south? Wondering how close we live. I'm about 30 minutes East.

I hope your docs will help get a good treatment plan in place. I have seen pictures of Tumid Lupus and it doesn't look like fun.

I hope you'll tell us more about it.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
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Date Joined Feb 2003
Total Posts : 5511
   Posted 2/11/2009 10:40 AM (GMT -7)   
Hello Shel,
 
I had to look up what Tumid Lupus was.  Until your post, I hadn't even heard of it. I guess it's a form of DLE (Discoid Lupus erythmatosis).  Good to know!
 
Your dry eyes could be Sjogren's Syndrome (show-grins).  This is a very common autoimmune disorder that presents itself frequently with Lupus.  When you talk to your rheumy or doctor, ask if you have been tested for this.  A blood test will determine if you have the antibody or not. 
 
Your increasing joint pain could be a symptom of Tumid, but it could also be an extension of SLE, systemic Lupus erythmatosis.  That's what most of us have here. 
 
Let your rheumy know all your new symptoms. Learn as much as you can about your Lupus. Knowledge is power!
 
Keep us posted!
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 2/11/2009 11:28 AM (GMT -7)   
Hello Shel

I am sorry about your diagnosis. I wouldn't say that dry eyes goes along with tumid lupus or any of the sorts of skin lupus apart from the malar rash which is associated with SLE.

However dry eyes ( and sometimes mouth) are associated with SLE and also Sjogren's disease which involves many symptoms like SLE but especially dryness of moisture producing membranes

There's some discussion among doctors if tumid lupus is a sort of cutaneous lupus, not usually associated with any systemic symptoms such as discoid lupus. By definition cutaneous lupus has no sle type blood work or SLE symptoms.

However the sort of lupus you have is how it is affecting you and there are not necesssarily hard and fast dividing lines between skin lupus and some symptoms. Some people with discoid lupus and no blood work may all the same have joint aches and pains, fatigue maybe anemia and maybe some heart and lung involvement

Some dermatologists think tumid lupus should be classed as a sort of subacute cutaneous lupus,SCLE. Many with this sort of lupus skin have enough criteria for an SLE diagnosis and do suffer typical SLE symptoms but it isn't usually associated with serious organ involvement. To all intents and purposes they have SLE. People with SCLE skin but no bloodwork are even more likely to suffer other lupus symptoms.

Maybe all these new symptoms are due to something else like a chronic infection, or maybe the disease is flaring or in fact worsening and taking new forms. Maybe blood tests will indicate what's going on. Skin lupus can be the first sign of systemic disease of any sort. If the ANA is negative then tests should be done for anti Ro antibodies. Half of the people who have SLE and are ANA negative are anti Ro positive.

I hope your doctors can find out what's going on and that it's nothing too worrying and can be quickly taken care of with the right medicines. Below are some general notes about Tumid Lupus ( LET)

All the best

BB



Tumid lupus or LET (Lupus erythematosus tumidus) is a rare form of skin lupus not usually accompanied by major symptoms of the systemic disease, SLE.

Like other forms of skin lupus it is treated with the same medicines as the less severe forms of SLE. The antimalarial Plaquenil (hydroxychloroquine sulfate) is the first of these and is usually effective. Another antimalarial called Quinacrine (USA)/ Mepacrine (UK) may be added either to the Plaquenil or to another closely related antimalarial Aralen (chloroquine)

The Quinacrine is also a very useful alternative to Plaquenil for those who can't tolerate Plaquenil especially if there are concerns about eye toxicity because there are no records of it ever causing any eye damage. Unfortunately it can only be obtained in the UK and USA from a compounding pharmacist because it isn't commercially available, having been replaced by Plaquenil for antimalarial prophylaxis.

The next group of medications that might be tried in addition to the Plaquenil is the disease modifying medicines, azathioprine methotrexate or even Cellcept depending on the doctor's judgement.

LET is one of the most photosensitive forms of lupus so the first step in therapy is Ultra Violet light avoidance followed by physical protection ( clothing, hats etc) and accompanied by the use of a broad spectrum suncream that will help protect from UVA as well as UVB.

Steroid creams used topically and other steroid applications but oral steroids are avoided except when it is necessary to bring inflammation down very fast, because of the risk of extremely serious damaging side effects when used long term.

People diagnosed with skin lupus should have a full lupus workup including urine to see if there are any signs of systemic disease or any symptoms of SLE such as arthritis or anemia or previous ill health that might be caused by lupus. Check ups for signs of worsening disease should be done at regular intervals and the patient should be aware of changes that could possibly indicate worsening disease such as hair loss, extreme fatigue, aches and pains, mouth or nasal ulcers.

shel3
New Member


Date Joined Dec 2008
Total Posts : 2
   Posted 2/12/2009 4:54 PM (GMT -7)   
Thanks for the info and encouragement!! I see a new doctor on Tuesday maybe he will have some answers!!

Find Cure
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 4/8/2009 4:00 PM (GMT -7)   

Hello Shel

My husband was diganosed last year with Tumid Lupus. Yes, a man has Tumid Lupus.This is very rare for a man to get this disease, but it has happened. We are going to Duke in May to find out what else can be done to help him. He has muscle pain, fatigue, and many other symptoms. We have partnered with our local Lupus Foundation and are getting great support. Do you have a chapter in your area? This is a life changing disease, but for many things can be done. Just keep the faith and do not let this get you down. wink Good luck to you

Candice


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/8/2009 5:39 PM (GMT -7)   
Hi Candice,

Welcome to the forum!! Sorry your hubby is dealing with Lupus. Shel3 hasn't logged in since Feb 16 . . . so I'm not sure she'll see your post.

I hope you'll start a new topic and say hello. Most of the members won't see your post here.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


kimbaas
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/8/2009 4:51 PM (GMT -7)   
Hello every one my name is Kim I was diag. with tumid lupus a couple of years ago, I've been to many forums and have seen many people suffering the same way I am, not only do I get rashes that last up to 8 months but I have joint pain, nerve pain, stomach spasms,intestinal pain, brain fog, dry eyes & mouth.. I'm on many different meds, they only seem to mask my problems. Things seem to get worse every year, my Dr's don't seem to think this is all linked but I believe it is. There are to many people out there with this diag. that have the same pain and suffering I have. I have been through test after test with everything coming out perfect. I did just find out my gallbladder isn't working properly but it's not enough for the Dr. to remove it. I am going to the Dr. on the 14 th with copies from some forums to show it to him and see if he has an explination to how every one can have the same issues...if it is not linked...there has to be some one out there that won't take me as a quack....I am so tired of being sick all the time I just want to feel better.. hanks for listening.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/9/2009 5:57 AM (GMT -7)   
Hi Kim,

Welcome to the forum! Lots of Lupans here . . . but I the only current member, I know of, with Tumid Lupus is Shel3 who started this topic. But she hasn't logged in since Feb. I hope we can still be helpful. Lupus is such a strange process . . . it affects each of us in a different way.

If you don't already have a rheumatologist, I would highly recommend getting one. They are the Lupus experts. You may also need other specialists, but most of us depend primarily on the rheumy. It is also important to find a rheumatologist who specializes in lupus. You can get a referral from your local Lupus Foundation Chapter (link in my signature to locate your nearest chapter).

There are some other good tips in the topic "Lupus Resources" . . . link also at the end of my signature.

Glad you found us!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Find Cure
New Member


Date Joined Apr 2009
Total Posts : 2
   Posted 5/9/2009 12:07 PM (GMT -7)   

Hello Kim

Welcome,

My husband also has Tumid Lupus, we just recently went to Duke Lupus Clinic and saw Dr. Lisa Crisione. When she looked at my husbands rash, she said she had never seen anything like it before and sent us upstairs to see 3 Dermotoligists. They did two biopsys and sent them off also drew 7 tubes of blood and a urine sample. Still waiting on other results, we are not giving up until we find all answers! Keep going to your Dr's and keep getting tested there are answers out there some where and they will be found. Get involved with your local Lupus Foundation they are wonderful people and they can help.

We did get some results back, his white blood cell count is high and protein in urine. Waiting for Dr. to call to tell us what that means. Good Luck to you and all that have Lupus. Keep fighting there will be a cure one day.

 


Leesa2Dance
New Member


Date Joined Nov 2009
Total Posts : 1
   Posted 11/27/2009 12:35 AM (GMT -7)   
Hi Shel3,
 
I was diagnosed with tumid lupus about four years ago after a new dermo decided to take a skin biopsy. So far plaquinil seems to be working well, keeping things at bay. Every day I wear skin block 85+ to 100 by Neutrogena and try to stay out of the sun as much as possible, expecially between 10-3. Eye infections, which mainly occur in my right eye, are pretty common for me. When I feel/see one coming on, I immediately begin applying antiobiotic eye drops and it goes away pretty quickly. My theory is that the infections begin when I have a flare and the swelling in that eye tissue makes it more difficult for the eye to drain, therefore causing an infection. The last time I went to the doctor she gave me a prescription for about three refills or so because I've been treated so frequently for that!
 
Right now I'm fighting acne which I never had before until I got lupus. Does anyone out there have that problem? If so, can you recommend any particular acne medication that doesn't agrivate the skin? I am allergic to doxycyclene.
 
Thanks,
Leesa2Dance
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