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Jenfrombill
07-16-2008, 06:48 AM
Hi,

I am so confused. This is what I know- I am positive ANA speckeled at 1:160- positive Lupus Anitcoagulation- positive CRP (Protein C I think) at level 8 and blood in my urine. The remaining tests are fine. I have an appt with a rheumatologist Tuesday to go over everything. But I am confused about the rash thing. Everyone always says I have a red face, like I have been in the sun- my cheeks are flushed but I have not been in the sun. On my upper arms I get little red dots that are wicked itchy but only like 5-10 dots on each arm nothing I would actually call a rash- I guess. I suffer from severe headaches, right now my shoulder is in awful pain, so is my elbow and my wrist and occasionally my fingers. I have had back pain, actually still do but not too bad now, I had a period where I could not walk on my feet without awful pain when I first got up, that is gone. I also have had times where my knees would be in awful pain when I was sleeping, to straighten them was like burning or ripping them. On some occasions my chest hurts (for a few days), I get stabbing pains shooting to my back- I had an EKG because I went to the ER and it was normal. I am constantly exhausted and I sweat an awful lot. I never used to be a sweaty person but when I feel like this- I sweat. I sweat walking from the couch to the bathroom. But when I feel good, I am usually cold. Now even if the AC is on and I feel crappy, I am always hot. Typically, when the AC is on I am the one with a sweater on. So I guess I am trying to figure out if I have the rash, I don't think I do but i guess I am not sure- I guess I do not know how bad it gets? I am also not sure if these are the normal symptoms? My primary is awful- he was convinced I was too sensitive to pain, needed anitanxiety and getting false positives. Does anyone else have this or does everyone have more pain and a more definite rash? Oh, and last thing everyone says o stay out of the sun but I think I am okay in the sun? I guess I am confused about that too- I picture if you are in the sun you get sick at that moment and know it. Maybe what I do not realize is when I have been in the sun and then my shoulder aches, my headache returns and I feel crappy it is because of the sun? Or, when you are in the sun you absolutely know at that time it is bad?

KathyW1958
07-16-2008, 07:00 AM
Hi Jen,
My name is Kathy. I have a lot of the symptoms that you describe. I am wondering if you thought about Sjogrens Syndrome. You see this type of ANA pattern in Sjogrens also as well as with Lupus and Scleroderma. I am just wondering. The headache could be a sign that you are sun sensitive. I hope that you also mention to the Rheumatologist to look for Sjogrens as well as Lupus. With Sjogrens there are serious issues with sweating. I hope that I have helped somehow.

Hugs,
Kathy

Oluwa
07-16-2008, 07:40 AM
Hi Jen...

The malar rash, varies in color, dryness, cheek to cheek..nose..can be light pink to hard core raw red. I have the malar.

You symptoms sound like mine are or have been...joint pain , headaches, rashes, unable to walk.. and etc.

I have been diagnosed with Lupus, Sjorgren's Syndrome and Fibromyalgia. The last two are secondary, primary illness is Lupus. I also have Restless Leg Syndrome which as been minding his own business lately and GERD which has surrender to the medications and procedures.

Rash, big or small is still considered a dermatitis, a rash. Ten dots or a gazillion like mine can be from Lupus. Causes could be a myriad of things..could be skin Lupus is a mild form, from soap, stress and etc. Rashes are common with Lupus. Matter of fact I just developed a gazillion bumps that itch, the wicked itch...tomorrow I am going to the doctors as it has been one week with them.

Chest pain could be costochondritis, pleurisy, pericardium..all can be a symptom of Lupus.

From the American College of Rheumatology (ACR)...Four out of eleven is needed. Not all symptoms occur at once...and spread out over years, so maintain a journal too will be helpful.

Malar Rash ...Rash over the cheeks

Discoid Rash ....Red raised patches

Photosensitivity ....Reaction to sunlight, resulting in the development of or increase in skin rash

Oral Ulcers ...Ulcers in the nose or mouth, usually painless

Arthritis ...Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)

Serositis ...Pleuritis or pericarditis (inflammation of the lining of the lung or heart)

Renal Disorder ....Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)

Neurologic Disorder ....Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects

Hematologic Disorder.....Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

Antinuclear Antibody ....Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.

Immunologic Disorder ....Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).


An antinuclear antibodies (ANA) test is done to help identify problems with the immune system, such as....or rule in or out other diseases...some, not all I have listed..such as
Rheumatoid arthritis.
Lupus
Polymyositis.
Scleroderma.
Sjögren's syndrome.

A positive ANA doesn't mean Lupus, nor does a negative mean not. 3 - 5% of the people can have a negative ANA and still have Lupus. Lupus is a great mimicker of other diseases, so they should rule out others before diagnosing.

Symptoms differ from the criteria listed above..as we get many different aches, woes, pains, rashes are not in the criteria, but from the criteria if that makes sense. The symptoms is what indicates what criteria we fit into. ..like what happens when we get a reaction from the sun and etc....

Who is your primary to judge your sensitivity? That is crazy. Pain is pain regardless how we feel it. Pain is a way our body alerts us something is wrong.

What test are giving you a false positive?

Photosensitivity..can come on fast or creep up on you. I have experience both. It causes a flare..i.e..achy joints, increase fatigue, headaches, nausea.

If you suspect Lupus you should avoid direct sun, cover up, use sunscreen, sunglasses, hats and etc. Try to take the precautions and see how you feel...

Hope this helps Jen...

Keep looking for your wellness.
Hugs,
Oluwa

Jenfrombill
07-16-2008, 08:01 AM
Thank you for the responses.

Oluwa- my primary thought my Lupus Anticoag was a false positive. In fact all this was found from my OBGYN- my dad suffered a stroke and they found he had Lupus Anticoag (clotting). I know you can have this and not have Lupus but I was on b/c so my OBGYN needed these tests... well when it came back positive she wanted more testing for autoimmune disease and my primary did not want to, he said it was a false positive and she was opening a can of worms. Well after my CRP levels came back my primary started thinking maybe my bouts of high potassium were from inflamation of my kidney's. Now I have blood in my urine, which he keeps retesting beause he assumes I don't know when I have my own womanly thing, he is now thinking there could be a problem. He told me not to worry about my ANA- some people are positive and have no disease but I think all coupled together he is taking this very lightly. My face gets real red and raw looking. I guess I hear rash and I thought chicken pox rash- so I was confused. Thank you for your help! It is odd, now that I think about it, after a day in the sun I do get sick but I always thought it was too much sun... just normal. I thought photosensitivity meant- BOOM in the sun and you are sick. Maybe everything is all a coinsidence (sp?) but I guess I will soon find out. Oh, I also noticed I have bouts of my hair falling out. I have thick hair so it is only noticeable to me. I go through periods where combing it and so much comes out, then I go through times where it is normal. I thought I was like a dog, I shedded! :lol:

Oluwa
07-16-2008, 08:14 AM
Jen...

I would seek out another Primary and request, demand a referral to a Rheumatoglist form..research the Rheumatologist..see if one specializes in Lupus...and make an appointment.

I would flush your Primary. Doctors like him make us feel like we are nuts...can him, I would. Especially after his remark about menstruation and opening a can of worms.. Maybe they need to be opened to get a diagnose.

Is anyone treating your symptoms. One doesn't need a diagnose to treat your symptoms.

Hugs,
Oluwa

Jenfrombill
07-16-2008, 08:59 AM
Nope, no one is treating my symptoms. I have an appointment with a Rheumatologist but my primary didn't help with that. Usually, they refer you, have their office call the specialist's office... nothing. Everyone wanted me to get rid of my primary when my potassium reached levels where it made my musceles paralyze. He just kept having the test repeated- 6 months later it leveled off and he neve repeated it again.

Oluwa
07-16-2008, 09:04 AM
Jen...

The reason why the primary office calls the Rheumatolgist is to basically keep it in the family. You refer me, I refer you thingy or apart of the same medical facility. But know you can always ask for a referral form and choose.

Are you going to find a new primary?

Hugs.
L.,
Oluwa

Jenfrombill
07-16-2008, 09:24 AM
Yes, I do plan on finding a new one. Right now I just want someone to decide whether I have Lupus or an Autoimmune disease or I just have funky blood tests with odd symptoms. Pretty much that is what my primary would think!

Oluwa
07-16-2008, 10:09 AM
Jen,

I've been researching my rash...I thought I'd share my find...

From www.lupus.org

Skin Changes in People with Systemic Lupus

Introduction

Changes of the skin, hair, nails, and mucous membranes are very common in people with systemic lupus erythematosus (SLE), occurring in 85 percent of patients. In most of them, these abnormalities are not severe and are easily treated with corticosteroids (prednisone) or antimalarial drugs (hydroxychloroquine or chloroquine). In a small number of individuals, these problems are severe and may be somewhat unresponsive to the usual treatment. The rashes of SLE may be divided into specific and non-specific rashes.

Specific rashes

1. The butterfly blush or rash is a faint or prominent red rash over the malar area and the bridge of the nose. The rash does not go into the sides of the nostrils or down the fold between the nose and the outer part of the lips. These areas are always spared and look white in contrast to the red rash of the cheeks and bridge of the nose. Sometimes the rash is flat, and sometimes it is elevated. It may be in the form of red blotches or may be completely red over the area. The rash may be itchy, especially if it looks more like a rash than a blush. This rash is typical of SLE but is present in only about 30 percent of patients.

The butterfly rash is frequently confused by patients and by physicians with a similar red rash which also is over the cheeks. This rash is called acne rosacea. It does involve the areas of the outside of the nostrils and does involve the folds between the nose and the outer part of the lips. In addition, pimples may be seen on top of the red rash in acne rosacea.

2) Subacute cutaneous lupus lesions are of two major types.

* The first type looks like red pimples when the rash first comes out; as the rash persists, these pimples become bigger, and scales appear as the rash persists. Patients complain about the rash being very itchy. The rash usually appears on the face, chest, or arms and commonly comes on after sun exposure. The rash usually worsens after more sun exposure.

* The second type starts out as a flat lesion and gets bigger by expanding outward. The center may become less red and may even clear up completely so that, after a while, this rash looks like many circular red areas with clear holes in their centers. The rash appears on the face, chest, arms, and back. It is very sensitive to the sun and, like the other form of subacute cutaneous lesions, usually is very itchy. The rash of subacute cutaneous lupus usually heals without scarring, or leaves a non-depressed scar or area of depigmentation where the rash had been.

People with subacute lesions are very sun-sensitive. These individuals also frequently have a specific nuclear autoantibody called anti-Ro. SLE patients with anti-Ro are more likely to have a sun-sensitive rash than SLE patients without anti-Ro.

3. Chronic discoid lupus lesions are found in about 20 percent of people with SLE. Chronic discoid lupus also is found in people who have absolutely no trace of systemic lupus. In these people, the lupus is confined to the skin.

These lesions are slightly elevated, pink or red areas which form crust or flakes on the surface. As the lesions mature, the central area becomes depressed and forms a scar. These lesions rarely are found below the chin and practically never on the legs. However, chronic discoid lupus frequently is found on the scalp and in the outer ear. Lesions are itchy and get bigger by spreading outward, leaving a central scar. In pigmented individuals, the central area may become depigmented; in all individuals, the outer red area may become hyperpigmented. These can be very disfiguring lesions and should be treated as soon as possible and as aggressively as necessary to stop them.

Non-specific rashes

Non-specific rashes are seen in diseases other than lupus, but are extremely common in people with SLE. Patients may develop a red blotchy rash similar to the rash caused by a number of viruses, and similar to the rash caused by a variety of drugs (so-called drug-rash). These blotches may or may not be elevated and may be pink or red. They generally are found on the face, chest, back, and upper arms, and may or may not be itchy. This type of rash disappears quickly if patients are treated with corticosteroids for their other complaints.

Vasculitic rashes are seen frequently in people with SLE, especially in acutely ill patients. These rashes are non-specific because they may be present in patients who do not have lupus. For example, a small number of individuals with rheumatoid arthritis develop vasculitic rashes. There are a wide variety of rashes due to vasculitis, including: tender bumps in the tips of the fingers or toes; rashes that look like splinters under the nailbeds; ulcers that form around the ankle joints or on the legs; and tender red bumps on the shins.

Some lesions in people with lupus, such as hives, may be due to inflammation of the small vessels of the skin.

Other non-specific lesions include nail bed redness and redness of the palms of the hands. Rarely, blisters due to lupus may be present.

Hair loss (alopecia)

Hair loss occurs in about 45 percent of people with lupus at some time during the course of their disease. Most frequently the hair loss occurs at the onset of the illness, and may be one of the first symptoms of the disease recognized by the person. Most often, the hair loss is from all over the head, but sometimes the hair falls out in patches. When the disease is brought under control, the hair should grow back. Sometimes there is a rash in the scalp—usually subacute or chronic discoid—that interferes with the hair follicle. In this situation, the individual is left with a permanent area of alopecia. Drugs used to treat lupus, such as prednisone and immunosuppressive therapies, also may be the cause of reversible hair loss.

Nail changes

Nail changes occur in about 10 percent of patients and consist of cracking, curling, and even loss of nails. These symptoms are due to the changes in the small vessels of the nail bed.

Mucosal ulcers

Mucosal ulcers usually are found on the roof of the mouth. They are painless, but are found because the physician looks for them. Patients may mistake painful canker sores for mucosal ulcers. Some individuals with lupus will have mucosal ulcers in the nose - when these are severe, they can lead to a hole in the septum of the nose.

Treatment

The mainstay of treatment is the use of antimalarial drugs such as hydroxychloroquine (Plaquenil). Some people are more responsive to chloroquine. Steroid creams should be used cautiously on the face since the strong creams may cause dilated blood vessels. Some lesions—particularly discoid lesions—can be injected with corticosteroids and may respond very well. Other agents that have been used include retinoids such as Accutane and thalidomide. Occasionally it is necessary to use moderate doses of corticosteroids or other immunosuppressive therapies orally, to control lesions. Vasculitic lesions may require the use of cyclophosphamide, especially when ulceration is present.

There also are a number of practical, general steps people with lupus can take to help their skin problems.

1. The first rule is to stay out of the sun, especially during the middle of the day.
2. The second rule is to wear a good protective sunscreen of SPF 30 or higher. Use the sunscreen on all exposed skin areas, including the hands.
3. The third rule is to wear a hat with a broad brim.
4. The fourth rule is to wear long sleeves.

Jenfrombill
07-16-2008, 11:14 AM
WOW! Thank you. That was so interesting. I just realized I have nail problem- which in particular they look like they have splinters in them. My doc said it was psoriasis of the nails.

Thank you so much for your help!!!!

Oluwa
07-16-2008, 01:43 PM
You're welcome, Jen...

L.,
O.

laurid8967
07-16-2008, 02:22 PM
Hey Jen -
I remember when you posted before about this...How could I forget the "can of worms" comment...You certainly DO have many signs of lupus, add the positive blood tests to that and it could be a strong possiblility...Thank GOD you are getting a new doctor - he should be reported...not only did he not pursue cerrtain things, he IGNORED some potentially dangerous results (potassium), and something could have gone seriously wrong.
About the sun senstitivity issue: I have recently been dxd with lupus (seronegative lupus) and until I did get a Dx, I never tried to stay out of the sun, and, like you - thought I got sick from TOO MUCH sun. When I began to take precautions, I couldnt believe the difference in how I felt. My RED face turned flesh colored, and my symptoms subsided as well. I was on prednisone as well, but the sun absolutely has something to do with how I feel. As a matter of fact, it was overcasst here on Sat, and I didnt protect myself enough. I got a burn on my shoulders. Sat. night, I felt horrible, and had bad neuro symptoms (even had a couple of petit mal seizures). On Sunday - FORGET IT.....I was EXHAUSTED again for the first time in almost two months, I got a sore up my nose, my face was magenta and I was swollen again. I could NOT believe it...all these years saying "I dont know why Im in a flare up today..." they day after going to the beach or tanning! You do not have to get sick right away - it can hit you later. What I didnt know is that the UVB/UVA rays trigger the antibodies that attack the immune system. Its not just "feeling sick", your body literally has a chemical response to it. It sounds like you are sunsensitive - headache, fatigue, etc. I also thought I was fine because I never broke out in a RASH - persay - but knowing what I know now - I have had rashes - MANY of them in fact. But I, like you, was expecting this big chicken pox syndrome thing, and not just little bumps or even spots of discoloration in certain places.
I will nver again take the sun for granted anymore...I actually went outside today - sunscreen, glasses and big 'ol hat as well...and I still tried to stay out of the direct sun. Its not worth it to me anymore. I have for years been trying to figure out what causes me to get sick one day and not the next - and now I know about at least ONE of the causes. Of course, you can flare for no other reason than the disease feels like it, but at least we have control over SOME of it.
I hope you see someone ASAP and get on some medication...As for the primary - I would report him - honestly, and Im not a vengeful kind of person at all. But this man should not be in charge of peoples health - he's dangerous...
Keep posting and good luck to you...Can your ob/gyn start you on a taper of prednisone to start? You may feel better right away...
Let us know how you make out, OK?
Love Lauri

Jenfrombill
07-23-2008, 04:19 AM
I finally went and was not sure what to make of it. She was not bothered by my CRP at all. It is positive 8, according to my primary he considers this high anything over 10 has effected the heart) but she said if it was 50 she would worry. Also. my ANA is a low positive 1:160 speckled, and my Lupus Anticaog positive. She ran all these blood tests in her lab, I honestly think she had a hard time reading them from the other hospital- she did look confused. She said they might come back higher, she said what one lab considers low another lab may consider high... is this true? What does most people have for a CRP level? Ido have an MRI on my shoulder this Friday and I go back a week from today. She said I do have many positives but she wants to her blood work. She is not ruling it out but is not sure. Also, I found it hard to remember back to all my illness for 5 years, I left realizing I forgot important new information. She also pushed on one spot on my spine... I said that did not hurt but when I got home I realized had she gone down just a bit, that would have killed!!! Anyways... just confused and venting. But I am curious in hearing everyone's CRP levels?? Thank you! Oh, and the blood in my urine thing.. she couln't understand that test from the other hospital!

Oluwa
07-23-2008, 06:03 AM
Hi Jen..

I just wrote in a post somewhere about different lab's test they use and the various ranges which depicts negative and positive...they even report them in different format...so, yes, it is true.

I went to three labs and they all used this range for C-Reactive Protein...CPR Hs.

The AHA/CDC defined risk groups as follows:
Low risk: less than 1.0 mg/L
Average risk: 1.0 to 3.0 mg/L
High risk: above 3.0 mg/L

Unfortunately I do not have my copies of my tests...gr-r-rr. I just looked in my home file and I realized MUSC had kept my copies...g-r-r-r.

So you won't forget pain, new symptoms at future appointment keep a journal of date, pain, incident and etc...intensity, triggers and anything else and carry with you to your appointment. I maintain one on my PC.

If you want to understand you results from your lab...find out what lab they used and do a Google. They are sure to have a website...

Enjoy this day..be well,
OLuwa

laurid8967
07-23-2008, 08:19 AM
Jen - A positive antiphospholid antibody is important, Im not sure why she would kind of blow this off...it has to do with your blood clotting factor and can be serious. My guess (emphasis on guess) is the pressing on the spine she was trying to see if you have "tender points" which occur in fibromyalgia. But blood work is normal in fibro, I dont know why she would think fibro.
That CRP is high by my blood work. 0-2 is within range - mine is 10 (and thats ON steroids and plaqueinil). This is why my doctor is concerned (they even wrote me a letter saying this was NOT OK) and wants to put me on Imuran.
CRP is an anti-inflammation marker. There is another one, called ESR (sed rate), and it seems like - with regards to numbers - she may have been thinking of that. Usually the norm is like 0-20, and 50 would indicate serious inflammation like seen in lupus. Ive been having abnormal CRP tests for years, and its never been over like 12 or something. 50 doesnt sound right at all, but, like I said, Im not a doc.
Ive had a doctor have me come in to see them when my CRP was 4!! That was abnormal!!
Get a copy of ALL your blood work...its really important. I dont know, I dont like the sound of this doc....maybe its me...You havent had very good luck.
By the way, where do you live? I noticed you say "wicked" alot, and that is SOO a Boston thing. Are you from the area?? If so, I can recommend my doc to you!!! Hes GREAT!! lol
Keep us posted
Lauri

Jenfrombill
07-23-2008, 08:26 AM
Yes, I am from Boston. I didn't even know I used the word wicked.. LOL! I asked my primary again, which normally he is useless and he is upset and confused as to how she thought my CRP should have been 50.... he said he never heard of that? Maybe you're right she had it confused... which is not comforting! So who do you know in Boston that is good? I need help! As far as my spine goes... my pain is actually in my spine, maybe between veterbra (sp?) I was told before I had a lot of inflmation in between them. She said no fibromalagiya (again Sp!) for me. Maybe when she has her lab tests she will understand them better?

laurid8967
07-24-2008, 04:02 PM
Jen-
I dont know how I missed this post!! I did get your PM and I gave you my docs name and address, etc. What hospital have you been going to? I also said in my post that - in my experience - sometimes the big-wig doctors have seen the WORST of the WORST cases. And because of that, the somewhat minor cases, or questionable cases, are dismissed.
I have not been to one of the big hospitals in a few years, not since my symptomolgy and blood work became much more indicitave of lupus - so I dont know what they would say today. But, a few years ago, I went to:
1) Brigham and Womens (the doc I saw was voted one of the best rheumies in the country(proffessor at Harvard)
2) New England Medical (saw the director of the arthritis center/proffessor at Tufts)
3) Mass General - one of the top immunologists/ proffessor at Harvard
4) The first two one more time each..
All said "something" going on, but not sure what...fibro (bull) The Brigham and Wom doc put me on prednisone; NEMC doc wanted me to come back in 6 months - didnt.
My blood work back then didnt even show inflammation (normal sed and CRP) and all my other blood was normal - That has changed dramatically, so Im not sure what they would say today.
My point is, however, that these docs see EVERYTHING, so any "borderline" or questionable case seems like no big deal to them, you know?
When I did decide to pursue an answer again after I got sick this winter, I went to a well-educated MEDIUM sized office. My doc has many patients, and is affiliated with all the best hospitals (has priveledges there), but hes not so big that Im almost intimidated by him, you know? If my lung involvement got really bad, or more organ involvement happened, I know I can go into one of the best hospitals, but Ill stick with my doc anytime...
So, where do you live? What hosp/med center have you gone to? My doc is Dr. Daniel Sheff at Granite Med Ctr in Crown Colony (the big medical bldgs right off the Xway in Quincy). AND - I was able to see him in a couple of weeks!! (Though, Ive never waited as long as some of the people here for appts. That must be HORRIBLE!!). Ive waited like 6 weeks maybe at the most. We are so lucky we live in Boston with all the great medical care right at our finger tips. When you get a chance, let me know about the ?? I asked...maybe weve seen the same doctors!! lol
Love Lauri