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running girl
06-28-2011, 06:48 PM
I'm new here too. My rheumatologist believes I have Lupus and started me on Plaquenil. I'm not sure if that's a firm diagnosis or a best guess, either way the Plaquenil seems to be helping me.

My journey started 8 month ago when I got a very itchy bumpy rash. It was symmetrical and, over time, continued to spread. About a month later I developed Raynaud's and mouth sores. I had numerous biopsies which were inconclusive. In February my doctor did some blood tests and found my ANA was positive 1:320 and sent me to a rheumy.

My rash doesn't seem to be consistent with what I've read are the typical Lupus rashes though I'm hoping to find some help and information on this forum. I'm glad I found it and look forward to meeting more people here.

Manderson
06-28-2011, 06:53 PM
I'm new as well. Welcome, this is a great group. As far as rashes go, I was either on Mayo or Cleveland Clinic website and I saw on an illustration that lupus does indeed present with rashes. This illustration showed the rashes on the inside of the arms from the wrists up to the elbows. That's exactly where I get my off and on rashes. Mine are sometimes itchy, sometimes not. They last for minutes and then they're gone only to show up elsewhere. I also get red spots on my knuckles and wrists and then I know that's where I'll start feeling pain shortly. I'm undx'ed; have to wait until Aug for an appt with a rheumatologist.

steve.b
06-28-2011, 07:51 PM
hi running girl,
there is no proper rash for lupus.
some doctors whant to see what is in the text books.
if it is different, they dismiss it.
but lupus effects everyone slightly differently.
so even things like rashes present different on different people.

ihope you sort out things.
many of us have a difficult time with doctors
others find it easy to get a diagnosis.

once again welcome.

Gizmo
06-28-2011, 07:54 PM
Welcome. There is a lot to learn here, so snoop around the posts and ask questions.

lovedbyHim
06-28-2011, 09:25 PM
Hi running girl, welcome to this great group! I have seen all kinds of pictures of what are believed to he lupus rashes. I get blisters that look almost like a herpes breakout on my arms from the sun. I've been to a dermatologist and she said unless a biopsy was done, she could not be certain & gave me steroidal cream. It worked great but the visit told me nothing as to what made the sun do that to me. I get a butterfly deep red flush on my face but it has no dimples on it. Everyone seems different in the pics, but the shape is pretty clear on the malar rash.

Good luck & a welcome!

running girl
06-29-2011, 03:55 AM
Thank you all for the warm welcome and good advise. This site is great and the more I dig, the more I understand that I have many more symptoms. The fatigue and "fog" are so clear to me now.
My doctor has actually been really good. She is more convinced that I have Lupus than I am. But again, looking around the site , maybe it's true.

Peridot20_Gem
06-29-2011, 04:27 AM
Hello running girl,

A lovely warm welcome to our family of WHL and you'll learn about Lupus and what it involves venturing through the threads.

I'm on plaquenil the same as yourself it's good with your skin and after about 6mths when it's fully working in your system it's helps your joints and your system. It's the second time around for me with plaquenil but just after 5wks last time it cleared my skin.

I have Raynauds like yourself and i get the sores by the mouth and cracks and when you see the Rheumo specialist ask for steriod based cream to help your face and the rash you have but after so long you must give it a great for at least 6mths in between as my Dermo did it with me because they're an aging cream and thin your skin but excellent for removing a flare.

I'll add some info below on Raynauds for you, so you know the symptoms it can cause.

It will be nice getting to know you Terry xxx

Peridot20_Gem
06-29-2011, 04:35 AM
RAYNAUDS SYMPTOMS

What are the symptoms of Raynaud's?
Typically, symptoms develop in fingers when you become cool. For example, in cold weather..

•At first the fingers go white and cool. This happens because the small blood vessels in the fingers narrow (constrict).
•The fingers then go a bluish colour (or even purple or black in severe cases). This happens because the oxygen is used up quickly from the blood in the narrowed blood vessels.
•The fingers then go bright red. This happens because blood vessels open up again (dilate) and the blood flow returns. This may cause tingling, throbbing, numbness and pain (which can be severe in some cases).
Many people with Raynaud's do not have the full classic colour changes, but develop bouts of uncomfortable, pale, cold fingers. Only the fingers are affected in most cases. In some cases the toes are also affected. Less commonly other extremities of the body are affected, such as the earlobes, nose, nipples or tongue. Each bout of symptoms can last from minutes to hours.

Raynaud's phenomenon is usually mild, with infrequent, brief bouts of symptoms that last just a few minutes. Sometimes it is moderate with more frequent bouts of symptoms that last longer. Rarely, it is severe with repeated frequent bouts, with each bout lasting longer periods of time..

.What causes Raynaud's?
.Primary Raynaud's - when the cause is not known
In most cases there is no known cause (more than 9 in 10 cases). This is called primary Raynaud's. The small blood vessels in the fingers, toes, etc, just appear to be more sensitive than normal to cool temperatures. There is no other underlying disease. Symptoms are triggered more easily in some people than in others. Even mildly cool weather, or getting something out of the freezer, can trigger symptoms in some people. Strong emotion may also trigger symptoms in some cases.

Usually, all fingers on both hands are affected in primary Raynaud's. It also tends to run in some families. Women are affected much more often than men. It usually first develops before the age of 30. There are no other symptoms apart from those described above, and symptoms go completely after each bout..

.Secondary Raynaud's - due to an underlying cause
In less than 1 in 10 cases, there is an underlying cause. This is called secondary Raynaud's. Various conditions of blood vessels, joints, muscles, nerves or skin can cause secondary Raynaud's. For example, scleroderma, rheumatoid arthritis, multiple sclerosis, systemic lupus erythematosus (SLE) and other 'connective tissue' diseases. If you have secondary Raynaud's you will normally have other symptoms in addition to the symptoms of Raynaud's. The Raynaud's is just one feature of the condition. For example, you may also have joint pains, rashes, joint swelling, etc.

Often the underlying condition is already present, and you may develop Raynaud's as a complication. Sometimes the symptoms of Raynaud's occur first, and other symptoms of the underlying condition develop weeks, months or even years later.

In secondary Raynaud's, symptoms may first begin in just one or two fingers on one hand. This is in contrast to primary Raynaud's when all fingers on both hands are typically affected. Certain medicines may also cause secondary Raynaud's as a side-effect (see below).

Hand-arm vibration syndrome (vibration white finger) is one common cause of secondary Raynaud's. This is caused by using vibrating tools regularly over a long time. For example, it occurs in some shipyard workers, mine workers, road diggers, etc. It is thought that repeated vibrations over time may damage the small blood vessels or their nerve supply..

www.patient.co.uk › Information Leaflets (Put raynauds in the search section and more will show on it)

tgal
06-29-2011, 08:29 AM
I just wanted to stop in and welcome you to WHL. There are so many wonderful people here and such valuable information as well. Please make yourself at home. Feel free to look through the old threads or start new ones if you wish. Welcome to the WHL family!

running girl
06-29-2011, 04:46 PM
Thank you all. You are right, this is a great group.

Peridot20_Gem
06-29-2011, 05:16 PM
Hello running girl,

With what alot of us go through we would'nt wish it on our worst enermy but your symptoms sound so connected besides you being diagnosed with the raynauds also but reading the threads like i said will help you such alot if a diagnosis is further made.

Hugs Terry xxx

Saysusie
07-03-2011, 07:30 AM
HI Running Girl;
Just wanted to pop in to add my welcome to those you've already received. I see that you have been given some good information about Lupus rashes..there are really quite a few different rashes and, no, they do not present the same way on everyone. They even change within us; The rash I have today is completely different from the rash I had when I was diagnosed :-(
Please continue to read through the threads and the stickys..there is so much information here and this group is filled with people who care, who want to help, and who understand. I am glad that you are here :-)

Peace and Blessings
Namaste
Saysusie

Peridot20_Gem
07-03-2011, 10:49 AM
Hello Running girl,

How are you feeling since you joined??...please keep we all updated.

Terry xxx

running girl
07-10-2011, 10:42 AM
Thanks again for the warm welcome.

Terry, Thanks for asking.

This has been an interesting experience. Since my pseudo diagnosis I've been struggling to accept it. Though my doctor says my disease is only just emerging I don't have a number of symptoms that many of you do. Having said that I have become more and more sensitive to the things that may indeed be lupus.

Sun sensitivity. I'm very fair skinned and generally have always avoided the sun. I was just at a cottage for a week and was good at keeping covered up, staying in the shade and wearing my 70 sfp, until the last day when I went for a canoe ride. Now my bumpy itchy rash has blossomed all over me. I also question if the heat irritates my skin. Though I still don't get the rashes that seem to be more typical with lupus.

Lungs - When I breath in deep I get a pain in my back. The doctor asked if I had pain in my chest but didn't ask about my back. Can lung pain come in the back?

Raynaud's - loves swimming.

Tired - Well, I've always been a person who needs a lot of sleep and that hasn't changed. I often have a nap when I get home from work and still get 8-9 hours at night.
Joint pain - Recently my fingers have been achy after holding something (like the steering wheel) for a while, and that could just be fatigue. I don't have any of the aches that some many of you do. I'm sorry you have so much pain.

Brain Fog - This is what rings most true for me. Honestly I thought I was having symptoms of early onset Alzheimer's. Over that past 8-10 months my ability to "keep-up" has diminished substantially. I have a busy career and I'm worried my confusion is starting to show. Does this go away?

So - I'm started to see Lupus as a possible fit, but I also worry about the power of suggestion. I guess I'll have to see what my labs say and that may give me more information.

Thanks for hearing me out. It's very nice to have such an informed group of people of bounce my thoughts off of.

Brenda

tgal
07-10-2011, 12:06 PM
You are welcome here any time, Brenda! With or without a diagnoses you are always welcome here. Please let us know what the doctor and labs say

steve.b
07-11-2011, 01:00 AM
i have pain from deep breathing.
foe me it is the inflamed muscles.
my rhuemy explained it: your muscles are sore when they are pushed on.
they push back, moving the lungs backwards, causing the pain.

this is what it is in my case.

i also get sore fingers from driving.......
again it is the swollen finger muscles and joints.

lovedbyHim
07-11-2011, 02:43 AM
i have pain from deep breathing.
foe me it is the inflamed muscles.
my rhuemy explained it: your muscles are sore when they are pushed on.
they push back, moving the lungs backwards, causing the pain.

this is what it is in my case.

i also get sore fingers from driving.......
again it is the swollen finger muscles and joints.


Omgosh Steve I used to get that pain in my back when I breathed in when I was in a flair. Nooneever explained it to me. This helps me understand much better.

running girl
07-11-2011, 03:40 AM
Thanks Steve,
That is interesting and would explain my situation.

Have a good day.
Brenda

Peridot20_Gem
07-11-2011, 05:36 PM
Thank you all. You are right, this is a great group.
Hello Running girl,

How have you been feeling lately since you joined us...please keep we updated.

Terry xxx