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Old 10-16-2011, 01:48 PM   #1
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Mixed bag/Autoimmune mess...

Hello. I used to spend all my time on the Thyroid board as I was dx'd with Hashimoto's 18 months ago. I also have vitiligo and psoriasis. I have seen many Endo's and Rheumy's and just started with a new one. After tons of blood work with a slightly positive ANA and LAC, we can't quite get to a solid dx of anything but the Hashi's, yet I am SO symptomatic with swollen elbows, facial puffiness, hair loss, weakness, malaise. On Synthroid 75 mcg and my numbers are all good. New Rheumy started me on Plaquenil and we'll see how my psoriasis fares. Going to the eye doc this week for the baseline Plaquenil exam. Hopefully, psoriasis will not made worse. She thinks this may calm my autoimmune "potpourri". Do any of you have a similar story or experience with Plaquenil and psoriasis - OR just simply being a huge autoimmune mess with no diagnosis? This has been an exhausting journey as most of you already know I am sure! Thanks so much.

 
Old 10-18-2011, 09:58 AM   #2
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Re: Mixed bag/Autoimmune mess...

I don't have psoriasis, but I know what you're talking about. There is a diagnosis called Undifferentiated Connective Tissue Disease, UCTD, thet my rheumy uses. You feel like crap but don't meet the diagnostic criterion of a specific autoimmune disease. It can be treated as any other autoimmune disease. The good news being that it oftimes never develops further into something specific. I've been on plaquenil for a number of years now, and found very few problems with it, other than a slight change to my hair colouring. I believe it has really helped control my symptoms and flares. I'm also on methotrexate, but might be able to stop that soon and just rely on the plaquenil again. I too have Hashi's and am on synthroid, btw. I am glad that your symptoms are being treated, even without a disease name, and that's the important part.

 
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Old 10-18-2011, 12:38 PM   #3
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Re: Mixed bag/Autoimmune mess...

gdiluca, thanks! Good to know another "unclassified" person! Crossing my fingers that the Plaquenil helps my myriad of symptoms AND that my psoriasis doesn't worsen. Good luck to you and thanks!

 
Old 10-19-2011, 06:04 AM   #4
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Re: Mixed bag/Autoimmune mess...

Sadly, I am not exactly unclassified any longer as I have CREST, but very mildly. And again, plaquenil definately helped me, but I wanted to let you know that it does take a while to be fully effective. So wishing you all the best!

Last edited by mod85; 10-19-2011 at 06:19 AM.

 
Old 10-24-2011, 07:02 AM   #5
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Re: Mixed bag/Autoimmune mess...

I can definitely empathize. I have Celiac Disease but my rheumatologist is treating me for some sort of Sjogrens/RA/Lupus/Psoriatic Arthritis/Ankylosing Spondilitis over lap. She said I have little bits of all of them. I guess we just have to be reassured that they are treating us for our symptoms even if they can't make a firm diagnosis. Good luck

 
Old 10-24-2011, 09:58 AM   #6
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Re: Mixed bag/Autoimmune mess...

...and I can empathize with you! May I ask - what medication (if any) they have prescribed for YOUR mixed bag? Curious. I wish you well and thanks for replying.

 
Old 10-24-2011, 03:34 PM   #7
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Re: Mixed bag/Autoimmune mess...

Sure =]

Plaquenil, Doxycycline, Meloxicam and Prednisone for emergency flare ups. There was some talk about Methotrexate, but my liver function has been high for the past two months. So until they work out why/get it back to normal, Methotrexate is out of the question, apparently.

 
Old 10-24-2011, 05:24 PM   #8
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Re: Mixed bag/Autoimmune mess...

Good to know. So far, I am just starting Plaquenil and I take Synthroid for my "known" autoimmune Hashimoto's. I wish the best for you! What a journey, right?

 
Old 10-24-2011, 07:34 PM   #9
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Re: Mixed bag/Autoimmune mess...

Thanks, you too! It's so frustrating. I hope the medications help you!

 
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Old 10-28-2011, 08:34 PM   #10
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Re: Mixed bag/Autoimmune mess...

Paper:
Just wondering....what exactly are your symptoms? I have hashis also but i have also beej suffering with lots of other symptoms with no diagnosis. I have tingling on the top of my head and a balance problem. Lots of other things also. To many to list right now. But i sometimes feel very sick. Almost like a long term viral or bacterial infection. It all started with getting sick with just a bad cold and maybe an upper resp infection and have been ill ever since. I have been through years of testing. Everything comes out pretty normal. Anything that is not 100% does not relate to my symptoms (i.e. kidney stone, gallbladder polyps, etc.) no relation to the way i feel. I would love to know what your mixed bag entails. thanks. LaLa

 
Old 10-28-2011, 08:47 PM   #11
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Re: Mixed bag/Autoimmune mess...

Paper:
Also with the tingling on the top of my head and the feeling off balance i have neck pain and my skull bones hurt to the touch. I have been tested for ms and lyme. they were both negative. I have been to reumys all tests negative except the last test showed a slight elevated reumatoid factor but very slight. The dr said she is not worried about it. My homocysteine level was high and she is treating me with supplements for that.

 
Old 10-28-2011, 08:49 PM   #12
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Re: Mixed bag/Autoimmune mess...

lala52,
My symptoms- nose ulcers, headaches/migraines, dry eyes, dry mouth, Raynaud's, goiter, fatigue, nail pitting, splinter hemorrhages, vascular rashes (petechiae), sun sensitivity (solar urticaria, gives me migraines, nausea, swollen joints, fatigue and a bruised like rash), low blood pressure/fainting (80/50 lying down, drops further when I stand up), weight loss/lack of appetite, memory problems, flu-like feeling and swollen/stiff/sore joints (arthritis in toes, knees, hips, sacroiliac joints, shoulders, wrists, MCP and DIP joints in my fingers)- I think that's everything! Oh and my liver function test has been elevated the past 3 months.

I've got a diagnosis of Celiac Disease and asthma. I think I may have a thyroid thing going on too with my goiter, but my TSH is normal and my GP said let's tackle one thing at a time.

Are any of your symptoms similar? Do my symptoms suggest anything to you? Are you being treated for anything? Or do they not believe you?

My blood tests are pretty negative, my ANA has been up slightly in the past but it's now negative. My compliment levels and all the specific antibody tests and ESR/CRP are all normal. My rheumatologist wrote in my report "her blood tests are very negative"... Lol is that like 'very pregnant'? All my symptoms were dismissed until I had the bone scan that showed the arthritis and I saw an ophthalmologist who confirmed my dry eyes (although my Schirmer test is normal).

I hope that's helpful =]

 
Old 10-28-2011, 08:54 PM   #13
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Re: Mixed bag/Autoimmune mess...

That's so frustrating. The tingling sounds neurological. How do they test for MS? I know some of the Lyme tests aren't accurate. I live in a part of the world that doesn't have Lyme so that wasn't tested for. I have read that about 10% of the general population test positive for the RF test. It's so annoying, they seem to rely so heavily on the blood tests, but then even when they are positive they don't seem interested!

 
Old 10-29-2011, 04:25 AM   #14
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Re: Mixed bag/Autoimmune mess...

Lala, it's FrancesKate here. I have the same sympoms; imbalance, constant flu-like feeling along with intermittent puffiness around my eyes, swollen elbows. None of m bloodwork is conclusive but reveals possible bits and pieces of many things. New Rheumy has me on Plaquenil to try to "calm" my overall autoimmune response. She feels it is likely we may never identify anything more than the Hashimoto's. It's completely frustrating, and I have high hopes that I will have some relief when the Plaquenil kicks in in a couple of months. Like you, I was healthy until I had a respiratory infection from raking wet leaves. Her theory is that kicked off the whole process that led to my Hashi's dx. I wish you well. Hang in there...

 
Old 10-29-2011, 06:20 AM   #15
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Re: Mixed bag/Autoimmune mess...

Paper:
WOw. You have lots of symptoms. I thought i was a mess. How do you function everyday? I was going to suggest lyme to you but you answered that question already. I am at a loss with what you have. Your blood pressure is so low that I can;t believe a doctor can't find a reason for at least that. Have you searched for causes of low blood pressure? During my illness of the past 6 years i had low pressure at one time 90/50 but it is normal now. Have you tried going to another rheumy? I know drs go by blood work alone, but sometimes things don't show up in the blood work. What about a natural dr. they go on your symptoms not your blood work. As for my situation, i have been to four different neurologists already. I have taken many tests and everything shows normal. In the meantime my head tingles off and on everyday for 2 1/2 yrs. That did not start at the beginning of my illness. At the beginning i got sick and then it went into like a CFS type of thing. That part of it kind of got better and now I am left with tingles, balance issues, neck pain and skull bone pain. also have had lots of stomach issues. I was treated for candida which can cause lots of problems also. Have you checked into that. Candida can cause many, many issues. You might want to google that. I hope you get answers soon and that you can get your life back. It is very frustrating and depressing.
Keep me posted. LaLa

 
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