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Discussion Starter #1
Hi,
I have been on and off this site for about 4 years. I will tell you a little bit about whats been going on. I have been seeing Dr's and still no definitive diagnosis of Lupus. I do have Fibromyalgia and Osteoarthritis in my knee. I had a flare of some sort about 4 years ago after my Grandmother died which included flu type symptoms with joint and muscle pain, dizziness, headaches, low grade fevers and a constant facial flushing. Was real sick for about 7 months then got better and have been better since then until about 3 weeks ago. I started with the burning leg muscle pain of both legs where I could not even walk for 3 days, joint pain, low grade fevers and just feeling like crap. I was also getting the facial flushing where I thought my head was a tea kettle. I also get bright red palms during these episodes. (Again had a death in the family 4 days before christmas which I have been totally a wreck over.- It was my former husband who died and my 2 boys were devestated cause it was their dad). Lots of stress since Christmas.

The new symptom i noticed was a blister type rash on my left thumb. It was weird and it hurt. It started under the skin as white blisters then they popped under the skin leaving red spots and the spots eventually open to a dry red lesion. My skin on my thumb is tight and the pigmentation is different and my skin looks shiny. There are new blisters forming every day. My skin then turns very dry and peels, just on my thumb so far. Does anyone have a clue as to what this can be? Can it be a lupus skin thing starting? I have never had this before. Does it normally take years for lupus to be diagnosed? The only thing so far that is positive is the ANA. Everything else has been normal.

I am waiting for a series of blood and urine results to come back. Last friday I went to the lab and had every test in the book. They took 10 tubes of blood from me and I had to do 3 -24 hour urine samples to test for all this stuff. Hopefully I will finally get an answer as to why I feel like this. I didnt have the skin thing when I saw my Rheumy or primary Dr last week. I dont know whether to see a dermy for a posible biopsy.

Well thanks for listening. My Primary Dr said that we will get to the bottom of this. I hope so. I felt good for so long then again hit me like a tone of bricks and came on suddenly. Why does this disease have to be so complicated???

Thanks again ,

Kim:sad:
 

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Hi Kim,

I'm sorry all this has flared up again for you :hug: It's good that you have had a long period of time where you felt well, but they are doing the right thing running all these tests on you now.

I would make sure that both your GP and your Rheumy know about your thumb, it could be very relevant. If we don't report symptoms to them then it's hard to put all the pieces together. If you have access to a good Dermy and can be seen whilst you have this then it's not a bad idea. It might help sort out what is from what. It doesn't sound like the sort of thing a Dermy would biopsy, but a good one should know what it is by looking.

A positive ANA along with lupus specific symptoms is often enough to get diagnosed as long as the ANA is high enough. Do you know what yours was/is?

Have you had a good look at the criteria used to help diagnose lupus which is at the top of the Not Diagnosed forum? Any of those things either in your past or now are helpful in diagnosis. Some of them are things we may not think relevant and don't even mention to our docs, but they all form part of the diagnosis, especially if you have a positive ANA as well. They don't all have to be present at the same time, nor do they have to be present right now. The fact they occurred any time in your past is of interest and to be taken note of by your Rheumy.

Let us know how your bloods and urinalysis turn out. If you can get copies of them and we will do our best to help you understand what they mean.

love
Lily
 

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Hi Kim,

Have you shown your rash to a doctor? Maybe you could take pictures of it, write down when it started, what it was like, how it felt. How long it is lasting.

Going to a dermatologist might be a good idea. I think there is members that got a dxed with a skin biopsy.

Any new symptom should be told to a doctor.

I hope you find out real soon. :hug:

:flowery:
Lyn
 

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rash on thumb

Hi there,

The rash you describe on your thumb sounds like shingles. Can't say for sure, of course, but it seems to be more common among lupus sufferers. I don't know how long you have had it, but it should be checked out by a dermatologist.

Lady
 

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I had something that sounds quite similar to your thumb - I thought at first it was Chilblains but then when I got a slight rash on my hand/arms, feet/lower legs as well as the facial rash (& my daughter had a very obvious case of 5ths disease a few days later) I started to think it was due to 5th's disease and my body's strange reaction to it. I got many tiny bubbles on all of my finger tips, then they all got very swollen looking and bright red, and lastly the skin peeled away in very thick sheets. I'm not sure what it was either as I never made it into the doctor but it did pass and I was much better in 2 weeks time.

You may want to take pictures of these things while they are happening to show to your doctors.

PS My feet did the same thing. My hands and feet itched like crazy too - drove me batty for about 3 days!
 

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Hi Kim,

Welcome to the site... There is nothing much I can add to that... I just wanted to say I am sorry you are going through such a bad time...
I hope the doctors diagnose what is causing this quickly....
I was in the worst flare I had ever had when I was diagnosed...It is amazing how stress plays such a role in our health.... Please let us know what the results are when you get them... Take care and good luck...

love Penny
 

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Discussion Starter #9
Thumb rash and positive ANA

Hi,
I got all my lab results back that were done about 2 weeks ago. Everything was good except the ANA choice Screen w. reflex IFA was POSITIVE and the ANA titer was 1:1280 with a homogenous pattern. I see a dermy on Thursday for this awful thumb rash. My rheumatologist does not want to make a definitive diagnosis of Lupus based on a Positive ANA and a few symptoms --Joint pains especially in the knees, muscle pain up and down both legs, low grade fevers, flushing in my face and palms and now this blistery type rash on my thumb. He does want me to try Plaquenil though. Isnt that to treat Lupus?? He wants to see if my symptoms get better on the medication. I am really frustrated with all this going on and no real answers. I have had symptoms for 4 years already and have been to so many Drs. with no answers. Should I seek a second opinion?? I dont know how much more he needs . I do have Fibromyalgia and did have Chronic fatigue with Mono in the past. Could the CFS be causing all this and does it cause the ANA to be high like that?? I hope the dermatologist will have some answers. I also scheduled an appointment with an endocrinologist but not until January 2009. That was the soonest appointment I could get. Sorry for going on like this but I am totally frustrated. Thanks for the support.

Kim:(
 

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Hi Kim,

An ANA that high is usually due to some kind of autoimmune connective tissue disease. It sounds like your Rheumy is just not sure which one as none of your other tests have come up positive and symptoms are a little bit non specific right now. However the fact he is starting you on Plaquenil is a very good thing, it's used to treat all the connective tissue diseases. It may well turn out that the Dermy can shed more light on what this rash is from and it may help point in one direction or another.

Do you get mouth or nasal ulcers or anything else like that?

Good luck with the Dermy and I hope that it goes well, let us know.

Oh I just wanted to add that neither Fibromyalgia or CFS could result in an ANA that high.

love
Lily
 

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Discussion Starter #11
Hi Lilly,

The rash on my finger is horrible. Its bright red now and it wraps around my thumb on the palm side and it looks like 3 layers of skin has peeled off in that area and the skin is shiny and wrinkled. I hope it doesnt go away before the derm appointment. I did take pictures just in case. To answer the question about nasal and mouth sores, I do get sores on the roof of my mouth from time to time but they dont really hurt I just know they are there . When I look inside my mouth, It looks like a cold sore lesion. I have had sooooo many weird symptoms, people must think I am nuts but I am not, I really want to get to the bottom of this. My husband thinks the rash is the symptom that will diagnose me . I just explained it over the phone to the rheumy and my primary Dr but I did not have it when I went in for my visit. Its very hard to explain . I am praying that the dermy will know what it is. I need to put an end to all these guessing games . Tonight the muscles in my legs are killing me. It feels like someone is twisting my muscles and it comes in wave like spasms radiating from my thigh down to my shin area and knees hurt along the way , in both legs. Keep your fingers crossed that the dermy has an answer. I will keep you posted. Thanks again for the info.
 

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((((((((Kim)))))))))))) you sound miserable and in a lot of pain :hugbetter: Do you have anything you can take for your pain?

The oral ulcers on the roof of the mouth whilst they aren't bothering you and seem insignificant are a symptom of Lupus and you should tell your Rheumy about them. They need to know everything that goes on with us.

Many of us failed to mention things like that because we didn't want to make a big deal out of them. But it can delay the diagnosis, so it's important and it helps the doc sort out what is going on.

Here's something from our Not Diagnosed section about symptoms of SLE and also what helps the doc sort out whether they think it might be SLE.

http://www.thelupussite.com/forum/showthread.php?t=33123

I hope tomorrow is a better day for you ((((((((Kim))))))))
love
Lily
 

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Discussion Starter #13
Dermy Appointment update!!!

Hi Everyone,
I went to the Dermy yesterday about my thumb rash. He looked at it and said he is not sure what it is because all the blisters were gone and it was just a red irritated area. He did say that it looked like some type of virus or infection. It was not dermatitis, shingles or any type of bug bite. I did have some pictures with me of what it looked like with the blisters and he said to just come in if the blisters reappear so he can biopsy them. He said there was nothing to biopsy . I wish I know that because I would have walked in last week. I did try moving up my appointment but they were booked. I knew this would happen. He gave me a prescription cream to put on my finger called Clobetasol Propionate 0.05%. I only applied it twice so far and the redness is almost gone, this stuff is amazing. He said to only use it for 2 weeks. I did tell him about everything going on with me about the positive ANA of 1:1280 and joint and muscle pains and flushing of the palms and face and he said it does sound like Lupus. He wants me to contact the rheumatologist and go on a trial of Plaquenil. If my symptoms go away then it is Lupus, if not after 3-4 weeks then it is not Lupus. I will consider doing this but I worry about the side effects. Well I really dont know what to do at this point except wait for more blisters to appear if that ever happens. SHould I see my Rheumy again for more blood work or just try the trial of Plaquenil??? Dont know what the next step is, any suggestions????
Thanks..:shrug:
 

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Hi Kim,

I think that if both the Dermy and the Rheumy want you to start Plaqunenil then it's a really good idea. Given your very high ANA and your other symptoms it's a no-brainer really.

Plaquenil is one of the most benign, safest drugs we lupies take. It has very little in the way of side effects except in some it causes some stomach upset for the first couple of weeks which quickly subsides. One way to minimise that is to start off on 200mg then work your way up to a normal dose of 400mg.

Eyes should be checked by an Opthamologist prior to starting and at regular intervals whilst taking it. The reason for that is that there is a very small chance of retinal problems. When I say very small, I mean very small, most Optho's have never seen a case of it and the figures range somewhere between 1 to 3 % at the dosages we take. If they do see a slight change then there is time to stop the drug and prevent any further problems.

Plaquenil is like an insurance policy for the connective tissue diseases, especially if you have no organ involvement now. It changes the acid base of the cell making it harder for us to produce antibodies. By keeping the disease in check a lot of problems down the track could be avoided. Just ask those of us who had a delayed diagnosis and ended up with serious organ threatening disease. Our problems may not have been so bad and permanent damage avoided if we had been offered the drug earlier on.

Take care,

love
Lily
 

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Dear Kim, Plaquenil is excellent. My only worry is that it can be slow to work and 3-4 weeks is not a fair trial. 3 months would be more realistic.
x Lola
 

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Hi Kim, the only thing that I can see in your post is that you got sick and
had a flare-up ,each time, after a major upset in your family life. (such
as the deaths). I always tell everyone I can that "stress=pain." Try
to stay as calm as you can, and use all the good advise that everyone has given you today,we all support you and wish you the best. Be well.
 
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