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Regular Member

Date Joined Jun 2005
Total Posts : 119
   Posted 10/3/2008 7:22 PM (GMT -6)   
I have been reading alot of the posts for the past few months and have found this forum very helpful.  I just thought I would introduce myself and give you all some of my health history.  I'm a 26 year old female and have had a great deal of health problems over the past few years.  My first problems started about 3.5 years ago.  I had just lost my dad to prostate cancer and had been under alot of stress.  I had been having bowel problems for quite a while before he passed away, but things started to get worse not too long after he passed away.  It ended up I got diagosed with Crohn's Colitis and I had most of the common symptoms of Crohn's.  I went a year of being treated for Crohn's.  I was on Prednisone and Imuran for most of the year.  After a year of being diagnosed my GI Specialists told me that they had made a mistake and that they didn't think I had Crohn's.  I never really got an explanation as to what they thought was wrong with me.  At that point I had been feeling much better, so I was just happy to get the news that I didn't have Crohn's and that I was back to normal.  While I was being treated for Crohn's I ended up having a lump start growing on my back between my left shoulder blade and spine.   I blew it off for a while, but it started to grow a little as time went by so I went to my family doctor to show it to her.  She told me it was just a cyst and that not to worry about it.  After about 6 months or so and about 3 trips to the doctors and them blowing it off the lump started to grow very quickly and was causing me alot of pain because it was pushing on my muscles, nerves and spine.  Finally, my doctor sent me to see a surgeon to have him cut it open to drain it and he then realized that it wasn't a cyst.  Within a week or two I got the call to come into my doctors office and they told me that the lump was cancerous.  They were very surprised as was I!!  I got diagnosed with a very rare cancer called Leiomyosarcoma.  I went for 25 radiation treatments and had to have two surgeries.  I ended up having to have most of the tissue between my shoulder blades removed along with some muscles and part of my spine.  I just made it to my two year mark in August and I'm still in remission.  Now to my most recent problem.  I started in May with my lymph nodes in my neck swelling all up.  Then I started breaking out in hives everywhere on my body, my lips, eyes, hands and feet started swellling up.  I also started having some breathing problems where I would get wheezie.  This all kept happening everyday.  I made several trips to the doctors and the ER and they kept telling me I was having an allergic reaction.  They put me on prednisone and told me that they would get me in to see an allergist.  I started doing so much better on prednisone.  My family doctor took me off of prednisone after about two weeks of being on it. While I was off the prednisone within 3 days I was in extreme pain where I couldn't touch my body because I hurt so bad and I couldn't move.  I was also getting very bad abdominal pains.  It felt like everything including my throat was spasming.  When I went to see the allergist she told me that I wasn't having an allergy.  She did a bunch of blood work on me and it turned out my ANA came back positive.  The allergist put me back on prednisone and spoke to a Rheumatologist and they both decided to put me on Plaquenil.  I have been on the Plaquenil for a couple of months now.  I have some other symptoms, such as hair loss, joint pain especially in my hands and arms, I am always tired and have no energy and my cheeks will swell up especially one side and my cheeks and nose go either bright red or purple.  This comes and goes and I don't know if that is common with the a Malar Rash?  From what I have read these are all common with Lupus, so I'm assuming for sure this is what I have.  I have noticed that the Plaquenil is starting to help.  I have a bit more energy and my hives and swelling aren't as bad.  I am waiting to see the Rheumatologist and I don't have an appointment until December.  She will be the one that will diagnose me for sure, but the allergist told me that it looks like its probably Lupus.  Anyways, thats my story.  I'm sorry it is so long, but I wanted to tell everything incase someone else has had a similar health history.  Also I was wondering if this sounds like Lupus and if any of you think that having a significant amount of radiation could trigger Lupus?  Thanks in advance!

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 10/3/2008 10:10 PM (GMT -6)   
Hi Kara . . .

Welcome to the forum! WOW! You've had your own personal roller coaster.

I've never heard of radiation 'causing' Lupus . . . but it really could trigger a flare. Radiation could cause a flare of Chron's or Lupus or many other diseases too. Lupus is sometimes difficult to diagnose and it looks like your docs have the fun challenge of isolating your symptoms to figure out what is from cancer, what is from radiation, and maybe Chron's or other overlapping conditions/diseases.

Many with autoimmune disease will also have Sjogren's. This could cause dry mouth, dry eyes, swelling of the lymph nodes and your facial issues. But, again, its hard to isolate what is causing what.

Our Malar Rash can be quite different form one person to another. I've looked at lots of web images and its amazing the range of appearance in the rashes. We always suggest that you take a picture of any rash or mouth sores so you can show the doctor. Most of us were diagnosed by a Rheumatologist. But I can see why your primary care doc referred you to an allergist. Sounds like she is working hard to get to the bottom of things.

The plaquenil can take up to 6 months to fully build in your system. I'm glad its helping already.

You've found a great, supportive group. There are some links at the end of my signature that me be helpful . . . . but you've probably already checked them out if you've been reading for a while.

Glad you found us!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 10/4/2008 9:12 AM (GMT -6)   
Hi Kara and welcome. I'm sorry that you have been through so much with your health. It can be frustrating to be sick and not really have answers for what's wrong. I'm glad the prednisone and plaquenil help with your symptoms. Like Rosie said, we have some great resources about lupus on this site, including tips for new members and ideas to prepare for your doctor's appointments. Waiting for your appointment must be hard - I hope that means you are getting a great rheumatologist.

Please ask any questions you have - everything can be a little overwhelming. I'm glad you found our forum - I think you'll find a lot of support here. Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Regular Member

Date Joined Aug 2008
Total Posts : 431
   Posted 10/5/2008 4:29 PM (GMT -6)   

Hey Kara,

I might not have been as nice as you were to the people who first told you that the lump on your back was just a cyst.  No matter what it looked like, they should have made sure it was not cancer by doing a biopsy.  And because they did not do this, and gave the lump time to grow some more, you have lost tissue and parts of your spine that you probably can't get back.

Welcome to the forum.  It is a great place to be.  Look forward to hearing more from you.
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 10/5/2008 5:03 PM (GMT -6)   
Hi Kara,

It sure sounds like you've been through a lot ((((hugs)))). I had a lot of GI probs myself and was checked for Crohn's, turns out mine was caused by Lupus. After starting Imuran my GI symptoms improved, I still have problems usually only when I am flaring. Plaquenil is a great med for lupus. I hope your rheumy appt goes well in December. Please keep us updated on how you are doing.

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Darvocet (as needed) and magic mouthwash (for mouth sores)

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 10/5/2008 10:03 PM (GMT -6)   
Hi Kara,
Oh my... You have been through so much. Your history certainly does make it possible for this to be lupus.  Although, chrons will mimick lupus and vice versa.  The fact that you have the malar rash is a good indicator that it is lupus.  I guess the only thing you can do is wait for this rheumy appointment. 
At least you're being treated with plaquenil.  whether it's chrons, lupus or something else autoimmune, the treatment would be the same, so it's positive that you're on the right track.
Welcome to the forum and let us know if you have any questions,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Regular Member

Date Joined Jun 2005
Total Posts : 119
   Posted 10/7/2008 5:34 PM (GMT -6)   
Thanks to everyone who gave their input on my situation. It's good to know that the doctors so far have me on the right track until I go see the Rheumatologitst. I forgot to mention in my first post that looking back my very first symptom that I had that I didn't find strange until I started researching was for about two weeks off and on my eyes were really dry and burning. I actually had to go out and buy visine because I couldn't stand it. I found the visene didn't really help. This happened about two months or so before I started getting any other symptoms and went away after a couple weeks. I'm thinking that it's related to whats going on with me now. I thought at the time I was starting to develop allergies, but it wasn't really allergy season yet and I have never had problems with allergies before. I've read a little about Sjogren's and I don't know if it could mean that I have that too or if I could be developing it as well. Hopefully thats not the case! I haven't had any problems with dry mouth, just my lymph nodes swelling in my neck and that went away after a couple weeks. Anyways, thanks again for all your help everyone!


Forum Moderator

Date Joined May 2005
Total Posts : 6946
   Posted 10/7/2008 10:13 PM (GMT -6)   
Visine is not good for dry eyes. What you want is an "eye lubricant" like Tears Naturale II, GelTeal, etc. The product will say "lubricant" somewhere on it and will not have chemicals in it at all.

So if that symptom comes back now you know! :-)

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Regular Member

Date Joined Jun 2005
Total Posts : 119
   Posted 10/8/2008 5:59 PM (GMT -6)   
Thanks Lynnwood! I just assumed that Visine would help. I will definately remember for next time.
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