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Raynaud's Syndrome Message Board
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Old 10-13-2009, 08:23 AM   #1
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Lupus... now raynauds?

Ok so I have been symptom free for almost 3 years. It was great while it lasted. I started having stiffness in my fingers over the summer and was able to get through the day on Tylenol Artritis. Then after a while Tylenol didn't work anymore. GP gave me naproxen and that didn't work, then we tried 2 more anti inflamitories all to no avail. Last week I knew it was time to go see Rhuemy. Blood work confirms Lupus is definately flaring up. Started Plaquinil, prednisone. So far pain continues. except for the 2 days I was on 40mg of prednisone. Now I am on 20mg and pain is still there. I went back to rheumy yesturday and on the way back my thumb tuned purple. He said it was Raynaurds. Never had it before. He started me on Norvasc 2.5mg. I hope it helps.

Anyone else have bouts of Raynaurds?? Does it hurt? I do ok, then I open a drawer or button my paints and pain hoots up my fingers then turns burning like? errrr frustration.

Thanks for listening.

 
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Old 10-13-2009, 05:34 PM   #2
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heidiclouser HB User
Re: Lupus... now raynauds?

I've had raynauds for years. It is annoying but not dangerous. Get good gloves, stay out of the freezer cabinets at the grocery store, and ignore it.

 
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Old 10-13-2009, 07:48 PM   #3
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Re: Lupus... now raynauds?

Thanks that sounds like a plan. Do you have pain with it though. It seems that I am not sure if the pain is from the raynauds or something else???

 
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Old 10-13-2009, 09:47 PM   #4
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Re: Lupus... now raynauds?

Yes it hurts....or maybe burns. I also have perpherial neuropathy in my feet so don't know which makes my feet hurt. I've started buying larger shoes so my toes don't touch the end of the shoe My daughter has Raynaud's Disease (no other autoimmune issue) and gets it in her feet, hands, nose and ears. She gets really black/purple colors. We kid her about it.

 
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Old 10-17-2009, 10:21 AM   #5
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Re: Lupus... now raynauds?

I have it all over-its chronic..creates a neuropathy pain..guess that is from the lack of blood flow to the extremities..its been a nightmare for me every since my hysterectomy and taking some low-dose estrogen, but I think its making me worse...wish i had some suggestions.

 
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Old 10-18-2009, 06:14 PM   #6
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Re: Lupus... now raynauds?

I know how you feel. Dealing with the pain is the worst. Dr started me on 200mg of Ultram daily been on it 2 days and its not helping me. And he increased my Norvasc to 5mg daily. Guess I'll be calling him again tomorrow.

 
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Old 10-19-2009, 09:43 AM   #7
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Re: Lupus... now raynauds?

Quote:
Originally Posted by heidiclouser View Post
Yes it hurts....or maybe burns. I also have perpherial neuropathy in my feet so don't know which makes my feet hurt. I've started buying larger shoes so my toes don't touch the end of the shoe My daughter has Raynaud's Disease (no other autoimmune issue) and gets it in her feet, hands, nose and ears. She gets really black/purple colors. We kid her about it.
My 15 year old daughter's fingers are swollen, itchy,very red w/ blister like bumps, and painful. She gets this throughout the winter months only. Now she says that her wrists are painful. Also her toes are a very dark blue color...This is all year long. Her Ped. says that it could be Raynaud's. We went to a circulatory Dr. and he said just to keep her hands and feet warm at all times. Like what wear gloves in school? Her fingers look clubby. She is very embarrassed about this. Now the Dr. wants me to call the Rheumatology Dr.
Could this be Lupus? Thanks

 
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Old 10-19-2009, 07:29 PM   #8
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heidiclouser HB User
Re: Lupus... now raynauds?

You might want to have her seen by a dermatologist. My derma has been my best diagnostician. She caught my lupus, 2 cases of shingles and lymphoma. A biopsy of a bump might give you valuable information.

 
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Old 10-28-2009, 08:58 AM   #9
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Re: Lupus... now raynauds?

Occasionally, the disease is only present in two fingers on my left hand (which can be frustrating since I’m left handed). My rheumatologist suggests that it’s not uncommon. My fingers OFTEN turn blue and feel cold and numb, and my sensory perception is dulled (due to limited blood circulation).

It seems that women are more likely to have Raynaud's disease. It's also more common in people who live in colder climates. Sometimes it takes less than a minute to several hours for it to resolve back to normal.

 
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Old 12-21-2009, 06:21 PM   #10
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Re: Lupus... now raynauds?

I was reading a post you made about a year ago on here . . . anyway; in short I was shocked because of what I recently went through and what I was reading about you. It started at the end of August and progressed - a rash, fatigue, pain, numbness, aches, tingling, and a few other odd things (including a high ANA) etc starting and "jumping" from day to day with a variety of things. I started to body chart to find a pattern or anything that would help. After numerous tests and doctors I resolved that I (MYSELF) would figure it out because it was making a large impact on my life at work and home and I was nearly unable to function. I realized in October that I had almost 4 good days with fewer symptoms. In November, after the "I cannot take it anymore!" and my husband's suggestion, I went off my birth control. Within 5 days all the symptoms had gone except a couple of things (carpal tunnel, and bursitis). I had a second opinion from a Rheumatologist even. She suggested I might have the start of fibromyalgia (but also because of two others I have had for years), but perhaps I was on to something with stopping the birth control. I visited my OB who agreed and through discussions it was decided what would be best for me as I probably had "estrogen / progesterone intolerance". I scheduled surgery to help control bleeding clots, and since I was done with children I decided on the following: endometrial ablation hysterectomy and a bilateral tubal ligation. I feel great! I can function at work and with my family.

Sorry you've had to go through so much but stopping the estrogen may just be the key. You could also request some of the testing such as ANA and others to ensure the doctor is not just "guessing" at things. I went so far as to schedule at the Mayo Clinic in the twin cities nearby. You could look for a local or near-by research center such as Mayo that could better assist you as well. I still think the estrogen could be a problem. I had been taking it for years and they have no idea why all of a sudden there was intolerance.

I am not sure if I helped but having worked in the medical field as long as I have I am always determined to figure things out. A year ago I learned my deodorant (which I had never used until I was 36) was causing major breast issues as well. Go figure.

 
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