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(LONG) HELP! New confused and freaked out!

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Old 01-04-2008, 09:55 AM   #1
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(LONG) HELP! New confused and freaked out!

I am new here. My Dr. told me to hope this was all a bad dream and that hopefully all of my symptoms would disappear in 6 weeks. So I haven't written here until now. It is week 7 and I feel worse. My bad dream is now considered CHRONIC!! If you would, please look at my list and tell me if you recognize it as something. All of the Anti tests were drawn on Wednesday but I am being a little confused and impatient after feeling bad for this long. I feel like the Doc is looking at my current symptoms and not the collective symptoms over the past 2 years. Maybe this is why it doesn't sound like lupus to him. Oh... FYI.. I have had Hashimotos for 12 years.

It all started with hives in November. I was SOOO itchy and they were everywhere. I have never had them before and I've never been allergic to anything. I was having difficulty swallowing after about 20 hrs with these hives all over my body. I went to the ED (because it was the Holiday Weekend) I was given IV Solu-Medrol, Benadryl, and Zantac. I was also given Prednisone 60mg to take for 5 days. I went home and took the Prednisone. After 5 days I followed up with a A Derme. Doc. I was given Zantac, Zyrtec, Allegra and told to take Benedryl PRN. He didn't think I needed the Prednisone,
Next day... Dermographic Hives all over my body. Have you ever seen this before? I looked like the human Etch-e-Sketch. Dark purple hives anywhere you touched my skin. We wrote all over me and took some Photo's. It was really unbelievable. The down side..... I still have the dermographism. Not as dark and it only lasts about 10 minutes rather than 45 minutes like when it started. Still this is now considered a Chronic problem now that it is >6 weeks with them.
So to shorten this part up. They eventually told me that I had Prednisone dependant Angio-edema. Every time I was off the Prednisone, My throat would swell up and close. I was on at least 40 mg Prednisone until about 2 weeks ago. I actually tapered myself off of them on my own. I had some edema but I made it and now I am off of it. 15 lbs later... Blahhhh
So here I am only using a Zyrtec when I can't stop itching.
I am starting to wonder if that was a mistake.
My ANA test was done 3 weeks ago. The positive result was so High that he felt that doing the other tests would be pointless untill my body calmed down a little.

I went in and showed him my 2 first ever Oral Ulcers last week and he finally agreed to allow the testing. He still doesn't think it is Lupus. That was done on Wednesday.

Yesterday was a terrible day.
I feel like my body is in a leather glove. My shoulders hurt. My thighs feel like I was swimming laps for hours. My hips hurt. My ankles feel sprained I walked around the store yesterday like a snail. EVERYTHING HURTS. I had mentioned my stiff fingers to the Doc when they were the only things that felt stiff. HE thought it was from getting off of the Prednisone.

I'm really sorry this is taking so long to write.
Anyway, to recap...
Current symptoms
2 Oral Ulcers. (mine are painful)
Dermographic hives
Itchy skin (even where there are no hives)
Positive ANA
Stiffness and sore muscles
Jaw stiffness
Lots of headaches. I haven't had these in years.
Don't know if it is related but EVERYTHING hurts my teeth lately. (Hot & Cold).
A girl that I work with noticed a very faint malar type pinkness. Not totally a rash but it is there. I think I am overreacting about this one. It really isn't enough to call it a malar rash.

After reading some websites I began to collect some changes in my body over the past 2 years.

I get terrible blistering in the sun. All over my chest and arms.
I feel tired chilled and sick after spending a day in the sun.
I can't wash my hair every day because it comes out in clumps.
My hands and feet are always cold.
My hands are usually Ice cold. They do get pale but not blue and red.
I went to a DR. last year because, as I explained to her... I felt depressed. Not my mind but my body. I feel lethargic, tired and heavy like my arms and legs weigh twice what they really do. She tested my thyroid but said it was fine. Nothing was done.
I always have a temp of 99.2 - 99.6. This is normal for me.

SO... If any of this sounds like anything to you.... Would you ease my mind and let me know?? Thank you so much for reading all of my issues. I appreciate it.

Thank you!

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Old 01-04-2008, 10:05 AM   #2
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Re: (LONG) HELP! New confused and freaked out!

Oh.. Sorry.. One more thing.

My Autoimmune Family History..

My Mom = Sarcoidosis
Grandma =CLL (Leukemia)
Aunt and Cousin =Lupus
different Great Aunt =Scleroderma
Myself and A different Cousin= Hashimotos
Sister and another Great Aunt= Raynauds
Same Sister,another Aunt and A different Grandma= Stevens Johnsons Syndrome (I don't know if this is Autoimmune)

Old 01-04-2008, 03:11 PM   #3
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Re: (LONG) HELP! New confused and freaked out!

Hi & welcome. I'm going to throw out a thought, then I have to run out & will add more later. I wish your dr. had done the additional autoantobody tests right away, instead of "waiting until your body calmed down a little". I suspect such bloodwork, skin biopsies, etc. are best done when your immune system is peaking, not when it's receding.

I'm really sorry you've got so much going on. I hope others chip in on this point & everything else, too. Bye until later, Vee

Old 01-05-2008, 04:04 AM   #4
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Re: (LONG) HELP! New confused and freaked out!

Greenetatermama, Good morning. Here are some other thoughts. Of course, I'm just a patient, so these aren't "answers", but things to watch for, ponder, read, etc. as your doctors & you work on your problems.

1. Rheumatologists. Have you seen one? Signs you've chosen well: being asked for a full lifetime medical history; lots of questions for you; standard blood panels *plus* the tests normally run if lupus is supected (see the "sticky post" at the top of the thread list for those); urinalysis (to look for protein).

You should be able to see a dr. going thru the ACR diagnostic criteria like an airplane take-off checklist! (See "sticky post" for these.) You must meet 4 of the 11 at some time, not necessarily all at once, to be Dx'ed with SLE (systemic lupus); but for other lesser "subsets" like DLE (discoid) and SCLE (subacute cutaneous) and DILE (drug-induced), you may meet fewer than 4.

2. Skin problems. Have you seen dermatologists or dermatopathologists ( = dermies who do their own labwork)? There are actually various kinds of lupus rashes, in addition to the best-known malar (butterfly). Others are discoid (scars &/or depigments); subacute cutaneous (nonscarring; one form is targetlike, and the other form looks like psoriasis but isn't); bullous (weepy raised fluid-filled blisters); etc. If a rash is determined to be lupus-specific, then you have lupus in *some form* (but maybe not full-blown systemic, is my point). Tests may include a deep punch skin biopsy; and immunofluorescent stain tests, under which lupus rashes behave in a way that's 100% unique to lupus (meaning, stain tests are pretty definitive).

How much correlation with sun do you see? For how long? I became photosensitive so gradually that I didn't recognize it at first. My first rashes appeared 2-3 months after big sun (like Florida), but my last ones took mere hours. If you pondered sun & skin, has your reaction to UV changed over time? And were you taking any drugs or supplements that have rash potential, with or without sun exposure?

FYI, in addition to lupus-specific rashes, there are other skin conditions prevalent in people with lupus. Maybe interesting to you is one called lupus urticaria (hives). Others are Raynaud's (skin turns red, white or blue when exposed to cold or vibration); livedo reticularis (lacelike mottling, caused by vascular dysfunction); cutaneous vasculitis; and purpura & petechaie (black & blue marks, and reddish dots).

As for simply naming your problem dermatographism, in your shoes, I'd ask why the high ANA results, especially if it's sky-high on your second round of testing! Why I'm wodering: ANA doesn't seem to have a thing to do with dermatographism (from what I read, that is).

3. Reading. There are two comprehensive rheumie/authors well worth browsing, and most libraries & bookstores have one or both. Look for Dr. Daniel Wallace &/or Dr. Robert Lahita. Their books also include info on how lupus is distiguished from other inflammatory conditions, like like dermatomyositis, myositis, UCTD, MCTD, RA, scleroderma, etc.

.... Anyway, I hope there's something here that can help you move forward faster. Post more when you can, OK? Sending best wishes, Vee

P.S. FYI, I was Dx'ed with the lupus "subset" called SCLE. My rashes were the annular (targetlike) form, on upper arms & torso (I never had a malar). My labs also were non-classic: positive for anti-Ro but negative for ANA, which happens in SCLE much more often than it does in classic SLE. Bottom line: this lesser-known variant was a HUGE challenge, but should not have been. My local drs., including rheumies and 4-5 dermies, wouldn't have recognized it if it BIT THEM.

Old 01-08-2008, 06:03 AM   #5
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Re: (LONG) HELP! New confused and freaked out!

Thank you so much for your help. You have been one of the biggest helps since this started happening. I looked at SCLE and I think you're on to something. When I got the ANA and Anti ro/ssa positive. It seemed to fit right in. My Doc however met me in November and he hasn't had the pleasure of seeing the rashes that seem to cover my chest and upper arms in the summer.
Since you asked, the rashes started 2 years ago. I moved to the states from Alaska so obviously I did not have a ton of hot sun exposure. I have reddish hair and freckles anyway so when I started noticing little bumps with my burns I didn't think much of it. It seemed like every time I went in the sun, it would get worse. A lot of times it will blister and look like plastic wrap on my skin. I also get these big red areas that look like a red map of the world if that makes any sense. I looked up a photo of Polymorphum Skin Eruption on the Mayo Clinic and it was almost identical to my world map rash. After seeing this photo and reading your comments, I actually sent the Doc. a bunch of information on SCLE since he never mentioned it. Maybe he will let me know. He did refer me to a Rheumatologist yesterday. The other thing on the SCLE info that raised a red flag for me was the HCTZ trigger. I was on Spironolactone for 20 days before I had this big event. I stopped the first day the hives started because I was worried that this was what caused it. The Derm. Doc that had prescribed it insisted that this was not the cause but if the diuretic HCTZ can do it why can't another one?
I just have so many questions... Thank you so much for taking so much time to help a complete stranger!!

Old 01-08-2008, 07:42 PM   #6
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Re: (LONG) HELP! New confused and freaked out!

Hi, I'm really glad you're talking with your doctor about possibilities. My GP & I both felt SCLE was a huge possibility, but he couldn't get any local rheumie or dermie to confirm, and he refused to take the dive solo. I finally reached the limits of my patience & took myself to a larger hospital system.

I met only one other person with the targetlike rashes I had. She & I were a lot alike (years of rashes, elevated sed rate, low-grade favers, fatigue, GI & urinary problems, migraines, anemia, hair loss, weight loss, pain, swollen joints, etc.) However, she tested positive for APS & I didn't. She also ended up going to a teaching hospital. Point is, she & I both needed treatment & regular follow-ups. NO, it wasn't "just skin"---and with being positive for APS, *she* had that additional big concern that demanded follow-thru.

In the old days, I think this type of lupus was sometimes called "Ro lupus". I think the term "SCLE" only started being used in the late 1970's.

I've also have met several people who were positive for anti-Ro, had many symptoms, but had no rashes. Both were Dx'ed with Sjogren's syndrome, based on results of lip biopsies. (Weird, but that's apparently the most definitive test for Sjogren's.)

...If the above adds anything... Hang in there, OK? Thinking of you & sending my best wishes, Vee

Old 01-10-2008, 03:39 AM   #7
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Re: (LONG) HELP! New confused and freaked out!

Hi There,

Ask your Dr to run a tryptase test and 24 hour urine test. Some possibilities could be mastocytosis, urticarial vasculitis. Other blood tests should include C3 & C4, and perhaps ANCA study.

Been on this journey for 13 years now, current dx is urticarial vasculitis, this keeps changing depending on what is going on.

If your throat is closing you could be having an anaphylactic reaction and this is a serious situation. I would be jumping up and down at this rate and pushing for urgent attention from Immunologist and Rhuemetologist and even a Dermetologist if this is what it takes.

Possible drugs should include fexofenadrine (Allegra) 180mg dose,(H1) & ranitadine (h2), drugs have to reach serum levels in your blood to be effective so you need to take every day. Consider Endep to assist sleep and help the CNS with pain response. Plaquenil may be of use but can take 6 months for it to work and not all drugs will work for you. Sodium Chromoglycate (gastrocrom over your way) may be of use too. Ephedrine should be considered if you are having a severe reaction. It can take a while to find the right drugs, years even. Process of elimination I am afraid.

I have found that after taking several days of cortisone I always get a back lash, this is the downside of this drug, lots of side effects including thrush which is hard to get rid of. I have found it useful for angioedema attacks though as nothing else helps. You will have to weigh up the odds for yourself and dissuss all of this with your Dr.

I have no medical training but have been where you are, it is a long scary journey but there is help. The first 12 months are the worst and you will improve. Stress is a big issue with this condition and this condition itself is very stressful. Good luck to you and I will check your progress so keep us informed.

Hope I have been a little help to you and good luck with all of this. Hang in there. In any case, as I have said I am not a professional just a patient but this has been my personal experience and I speak from that.

Old 01-10-2008, 08:09 AM   #8
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Re: (LONG) HELP! New confused and freaked out!

Greentatermama, About sun & anti-Ro: people with anti-Ro-type lupus can be hideously photosensitive (per the rheumie/author Dr. Wallace, for one). I certainly ended up that way in my 40's; it was a long & slow trajectory.

I was also told SCLE "favors" people of Western European heritage. (I could have done without that favor. )

Did you get an appt. set up with a rheumie? My rheumie, by the way, STILL checks periodically ALL the logical things that Penguin mentioned (C3 & C4, urinalysis, ETC.---the whole she-bang). I think careful doctors keep an eye on all such things, both before & after a Dx is made.

Anyway, keep us posted, OK? Very best wishes, from Vee

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