[Rhapsody]

I am so sick and tired of this body rash that no one seems to know what it is since my blood work came back NEGATIVE for Lupus..... not that I wanted to have Lupus on top of everything else, but at least the doctors would of known what it was and how to treat it.

The reason I am starting to hate my rash...... it that after about 4 months of it just being an eye sore when it broke out all over me - it is now so ITCHY and the itch travels all over my body..... no limit to it where it goes and I have to scratch so much to get it to stop (for the moment) that I am now breaking skin with a pre bruising look on my skin.

I have RA and was Dx with Rosacea on my face when the Dermatologist examined me in January.... she was the one that said I might have Lupus once she saw the red flat blotchy rash all over me. But now what.... no Lupus and no reason for the rash, and I am growing tired of doctors that cannot find out WHY.

... with in the last month I have been given the Dx of Rosacea and TMJ - but nothing for my irritating rash. My Dermatologist says that if the rash was due to an allergic reaction to something then when I pull on the skin the redness would vanish.... but if you tug on the skin and the skin is still red then it is due to some thing else, some thing from within.

Any Ideals........................... Any Helpful Advice? - and no it is not due to an allergy or allergic reaction.

Thanks...
LoVe,
Rhapsody -

[LMo]

No ideas, but I'm really sorry, Rhapsody

[Rhapsody]

P.S.

The rash comes and goes and I often feel sick like I have the flu or something when the rash is present..... I am better after the rash disappears.

The RASH: Flat, Pinkish-red, Blotchy, has become Itchy and lately small red lumps (not bumps or pimples) can be seen on my arms and legs.

[Rhapsody]

P.S. P.S.

I also fear that I might be among the rare 2% of people that have Lupus and yet they test NEGATIVE.... and many doctors will not give you the Dx of or treat you for Lupus unless you test Positive... I have all the symptoms of having Lupus - plus another doctor thinks I might have it and yet the blood work does back her up.

My LIFE really sucks at times............... I hate to think that I might have to seek out a 2nd or 3rd medical opinion, and have the blood work performed at a different lab.

LoVe,
Rhapsody -

...... still open to any ideals - SKY what do YOU think?

Rhapsody,

Grrrr! I'm sorry this is happening with you.

Have you researched online to see what you can come up with?

The dermatolgist's statement about how to tell if it is a reaction is one I've never heard before. Have they had you stop medications, ones that you can discontinue for a while, one at a time, to see what happens? Even meds we've taken for a while can suddenly affect us. (I took statins for years, then suddenly and unexpectedly had reactions to 2 of them I'd taken during that time.)

Have you eliminated, one at a time, products like lotions, bubble baths, or changed laundry detergents, fabric softeners?

I hope they figure it out so you can have some relief!

And I'm happy for you that you tested negative for Lupus!

[Soidhonia]

Hello Rhapsody.
I hope the rash goes away soon and you feel better. I once had a breakout that was excrutiating, and it was from chicken and the diagnosis was urticaria. (HIVES). I had to take medication and an nasal decongestant (non drowsy for the day), to help the itching. I really feel for you and I hope that they get to the correct diagnosis soon to get the medication you need for the symptoms. Take care Rhapsody I hope you feel better soon. Soidhonia

[Rhapsody]

</font><blockquote><div id="quote"><font class="small">Quote:</font>
ECHOES said:
Rhapsody,

Grrrr! I'm sorry this is happening with you.

Have you researched online to see what you can come up with?

Have they had you stop medications, ones that you can discontinue for a while, one at a time, to see what happens? Even meds we've taken for a while can suddenly affect us. (I took statins for years, then suddenly and unexpectedly had reactions to 2 of them I'd taken during that time.)

Have you eliminated, one at a time, products like lotions, bubble baths, or changed laundry detergents, fabric softeners?

</div></font></blockquote><font class="post">

YES..... I have been researching so much that my eyes now hate me, but over all what I keep coming up with is LUPUS, and that has been for the last 5 years with symptoms rising and still confirming Lupus.

I cannot really stop any of my meds - two are for my RA and I would be in wheel chair if I was to go with out then for even a week (and no telling how long it would take to get me better - or if I would even get better again) and the other med is for my Depression/PMDD and I fear I would be six feet under if I stopped it..... plus the Dermatologist says it is not due to an allergic reaction of any kind, based on a physical exam and blood test.

.......................... In a nut shell - It SUCKS to be ME!!!


LoVe,
Rhapsody -

[Peanuts]

uck - how awful that you have to deal with this rash. I wonder if you would be able to detect under what situations does the rash appear .. I wonder if that would lead to a trigger getting identified. Does taking an oatmeal bath help when the rash appears ?? Oatmeal baths are supposed to help for chicken pox .. not sure if that is really true or not. I would be great to get some relief from the symptoms while you wait for the medical community to figure out what the rash is. Unfortunately, they don't know everything and it is really frustrating when they can't figure something out. Hang in there, hopefully you will get some answers and some relief soon.

[Rhapsody]

</font><blockquote><div id="quote"><font class="small">Quote:</font>
Peanuts said:
uck - how awful that you have to deal with this rash. I wonder if you would be able to detect under what situations does the rash appear ..

</div></font></blockquote><font class="post">

I have tried (with little luck) - for as I said "it comes on goes" as it likes....... most of the time I do not see it when it first appears, but rather that I start to feel sick and then I will check my skin, as sure enough the rash is there, and lately the rash has started to appear with tiny little red lumps on my skin.

I have noticed that the itching in always around (mild itch) but that it increases in its degree of itchy feeling more later in the afternoon, say after 7 PM or so.

LoVe,
Rhapsody -

[wanttoheal]

Hi Rhapsody,
It's just my opinion, but I would say that your body is toxic. Perhaps trying to do some detoxing would help. The rash is a reaction or symptom of something and often times when you are toxic, any extra thing will put you over the top. I have some detox recipes if you are interested. Good luck.

[Rhapsody]

Thank YOU for the suggestion - and while I have used detox in the past to cleanse my body I did not think about it right now, and probably because the doctors were looking at Lupus or that my RA has finally entered its worse state of being.

RA - is an Autoimmune Disorder....... and in laymen's term that means that my own body will attack its self thinking that the body / organs / skin are the enemy.... so in the long run I think you are right - My Body is Toxic.

SIGH!! SIGH!! SIGH!! SIGH!! SIGH!

LoVe,
Rhapsody -

P.S.
I would love to have the detox recipes - please send them to me via PM.

.............................. Thanks a Million.

[January]

(((((((((( Rhapsody )))))))))))))

I'm so sorry you're going through this.

I have two suggestions.

First, are you taking a med in the lamictal family? It can cause a Stephens/Johnson, (or Johnson/Stephens) rash and it's very important you talk to your pdoc and show her the rash if you are taking a drug in that family. I took Lamictal for years with great success and all at once I got the rash. You can develop it at any time, not just when you start the meds. When you stop the med, the rash stops but you must hurry. Your pdoc will back you off it much faster than normally done.

Second, last week I was diagnosed with Mixed Connective Tissue Disease. It is a mixture of lupus, polymyocitis, schleraderma and Raynaulds. I have other kinds of arthritis, ect., all autoimmune problems. With MCTD, you have some symptoms of them all. In time, one may come to the forefront, but right now, it's like a cocktail of autoimmune problems. It's not fun. You do feel like you have the flu when the rash hits and you run a fever. Right now my face and legs are broken out again and it burns. I never know where the rash will be when I wake up.

My Dr. told me to use only white Ivory soap. It helps. I try to buy odorless detergent and fabric softener.

If you want, you are more than welcome to send me a pm about it. I'm still learning, but I'd say you have one of the two I've mentioned.

Hugs,

Jan

[Rhapsody]

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January said:
Second, last week I was diagnosed with Mixed Connective Tissue Disease.
It is a mixture of lupus, polymyocitis, schleraderma and Raynaulds. I have other kinds of arthritis, ect., all autoimmune problems. With MCTD, you have some symptoms of them all. In time, one may come to the forefront, but right now, it's like a cocktail of autoimmune problems. It's not fun. You do feel like you have the flu when the rash hits and you run a fever.

First, are you taking a med in the lamictal family?

</div></font></blockquote><font class="post">

Yeah - I forgot about that one (the MCTD) - Mixed Connective Tissue Disease.

I just read about that the other night so I have not talked to my doctor about it yet....... but my GP - Dermatologist - Rheumatologist all know about this problem and they are trying to figure it out..... my GP even sent me to see a Neurologist when I started to experience numbness and pain - the head area and nerves were all given the big O.K.

And YES..... as stated some where in one of my other post - I do feel as though I have the flu and some times I run a low grade fever - never over 100*.

I am not on Lamictal itself and I do not think I am on any of its family meds..... is there a list that I could look some where on the Internet to see if I am?

LoVe,
Rhapsody -

[Rhapsody]

If I may ask? - What medicine do you take for the MCTD?

And - What test were performed to check you for MCTD?

Thanks....
LoVe,
Rhapsody -

[January]

Hi Rap,

I'll try to find a list for you of the drugs in the lamictal family. I know trileptal is one of them.

Oh gosh, what tests weren't done on me? Every kind of blood test, an emg, an echocardiogram, sleep tests to rule out sleep apnea, etc. My dr has worked with me for three years to finally come up with a proper dx. When I read about MCTD and read the polymyocitis part, it took my breath away. I was reading about myself. I have long suspected I have lupus. I have all but 2 of the criteria for it.

I also have a list a mile long of other immune system disorders.

I hope this helps.

Hugs,

Jan

[January]

Here is a link that has the list of medicines. Scroll down to the anticonvulsant part.

LINK

Hugs,

Jan

[Perna]

There are allergies that are within; my "skin" organ is susceptible to rashes and hives, etc. I do inside out sensitivities unrelated to location as well as contact dermatitis. It was 4-5 years ago that I figured out the rash I'd had on my leg since I was 13 was because I was "allergic" to my cat(s)! I was, for the first time that I was paying attention, without a cat and the rash went away and then a couple years after getting my two I have now -- though I don't sneeze or have any "usual" allergic responses, the rash is back :-) Too, I've just gotten back my occasional dramatic neck hives that have been gone since my last cat died 6 years ago (and I've had these two critters for 5 years). But only the rash is consistent and there all the time but it's on my inside calf and my cats don't ever get there :-)

Were I you, I'd look at EVERYTHING that changed up to a year before the rash? Does it itch consistently, the same itch or are there variations in how bad the itch is, etc.? Are you taking any different meds from before the itch; might be an inert substance in them that you're allergic to; those things aren't on the bottle :-) the taste maskers (my husband invested in a pharmaceutical company that specialized in medicine taste maskers; who would have thought there was such a thing?) I have never seen a rash that "disappeared" when you did anything to it? Are you just "blotchy" or do you actually have raised bumps? I'm worse at night when I'm trying to go to sleep, I guess because I'm settled and not distracted at all/doing anything.

Did you see this site with 326 medical conditions causing rash:

http://www.wrongdiagnosis.com/symptoms/rash/causes.htm

[(JD)]

Contact dermatitis and allergy usually is worse quickly from whatever you touched etc. Inhalent allergy often is also quick onset. Food allergy, while some can be quick reactions, nearly always (also can) returns at night.

If it's a medicine, then you would be worse at it's peak and then some better until the next pill, imo.

Grrr hope you figure this out.

[Rhapsody]

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January said:
Here is a link that has the list of medicines. Scroll down to the anticonvulsant part.

</div></font></blockquote><font class="post">


Ok - I checked the list out (and I know most of the meds on the list for my daughter took them for uncontrollable seizures)....... but - NO, I am not taking any of them.

Back to the old drawing board..... but I will bring up the MCTD at my next GP appt in 2 weeks - for I too have suspected that I might have Lupus for a few years now and the only thing that says I do not have Lupus is the negative blood work.

Thanks...
LoVe,
Rhapsody -

[January]

Here is the list of blood tests they ran on me. I hope this helps.

CBC, CMP, TSH, Free T4, ESR, Vit B12, Folate levels, Arthrtis Panel, HBAIC

Let me know how things go, ok?

Hugs,

Jan

[(JD)]

Did you change the type of detergent you wash the clothes and sheets in?

[Rhapsody]

No - nothing has been changed....... NOTHING!!!



LoVe,
Rhapsody -

[(JD)]

not even... your toothpaste? the flowers blooming outside? ((((hugs))) Stress can do this too

[Rhapsody]

Nope..................... not even the toothpaste. lol -

[(JD)]

Well, then, if it's not from an allergy... it's from stress. Obviously your body doesn't like something going on... it is probably the same chemical that causes hives... which is similar to what you have without the bumps?

Time for a chill pill maybe. Take an hour and meditate about calming things, in a dark, quiet, or with soft music you love... and tell yourself to relax, how you are safe right now and free to calm down.

Even if it's not the cause, that should help anyway. good wishes.