View Full Version : New to Lupus not to Autoimmune Diseases

01-27-2009, 12:56 PM
5 years ago I was Dx'd with Crohn's disease, The doctors found ulcers near my ilium (the junction where the small intestine meets the colon) at that point I tested possitive for Crohn's after a year of getting no where with treatments had more test done and was told nope you dont have Crohn's had to get a differnt GI doc because my old one moved had more test and yep I have Crohn's then had to get a new GI doc and I am back to nope you don't have Crohn's but something is deffentantly wrong. For 5 years I have taken Imuran, prednisone, entocort, Remicade infusions to treat Crohn's all with little to no relief. So I fired my new GI and went to my PCP and said fix me LOL!!! He did an ANA test which came back possitive for Lupus then did a more sensitive ANA test which came back negative.

By this time I am off all medications and my immune system went haywire on me. I have a funny rash on my upper body, I have stomach pains and intestianal pains, I got an UTI which quickly spread to my Kiddney's and then the boils started and then the mouth sores. I felt like I was falling apart. Friday my PCP drew 8 more vials of blood from me and put me on Plaquinil and by yesterday most of my mouth sores are gone.

I don't know if I have SLE I do know that family members (mom & aunt) have the skin lupus. My doctor knows that my immune system is out of whack. I have had 4 misscarriges, renaulds syndrome, and out of whack blood work most of my life. I am now 42 years old and I feel like a medical freak show. Thanks for letting me join looking forward to getting to know all of you!


01-27-2009, 02:42 PM
You have come to the right place! If you cruise this site you will find that there is a bunch of support here and that there is also a lot of knowledge. I was lucky enough to get the d/x quickly cause my ex has it also. When I started getting the symptoms, I also went to my GP and when he asked "what can I do for you taday?" I said, "Prove to me that I do not have Lupus." And he could not.

Again, there is so much information on this board from individuals that there is not enough time to soak it all up. I would say welcome aboard but as you can see, I do not feel that I have contributed enough yet to say so.

Here is to being pain free!

01-27-2009, 03:36 PM
Gentle hugs to ya RedHairAngel

...and welcome.

I'm a 48 (soon to be 49) yr old female, living in eastern canada.

My mother had lupus and my sister is diagnosed with it as well. I how ever am not yet diagnosed. My blood work is all over the place, but I do have alot of the classic symptoms: butterfly rash, poor immune system, sensative to sunlight, joint involvement that came on me suddenly, mouth sores, nose sores...and a few other goodies.

I'm taking plaquenil and arthrotec 75. I don't know if your doctor explained to you are not, but plaquenil can take up to six months before it builds up in your system and you start to feel the benifits....but it's worth the wait.

If you have any problems with some of the side effects, ie: dizzy spells or upset stomack and diahrea, ask your doctor if you can take both pills right before bed with some food. I take mine with yogart.

You sleep through the worst of the side effects and wake up the better for it in the morning.

Not everyone has problems with these side effects. I just would feel bad if I didn't share that information :lol:

One the plaquenil kicked in for me, life has become alot more managable and less painful. :)

01-27-2009, 03:43 PM
Hello and Welcome RedHairAngel, :D

Sounds like you've been on the emotional diagnosis rollercoaster like so many here on the forum.

I know there are some members here who have Lupus as well as Crohn's.

So sorry you've had what sounds like a flare of your symptoms since stopping all your prior medications. Makes you feel pretty miserable. I hope the Plaquenil will work well for you and help some of the symptoms calm down.

I've had Lupus for 27 years, since my teens. The first 5 years or so were the roughest for me, but I've been in remission for about 12 years now. My Lupus was managed pretty well with Prednisone and Imuran of varying doses. I managed to get off the Imuran during my second pregnancy, and I've been slowly tapering off the Prednisone. I'm just about completely off of it.

I just wanted to welcome you, say hi, and let you know that this is a place where we understand exactly what you are going through. There always seems to be an understanding person to listen. :)

I noticed you're in Oregon, too. Looks like we're fellow Oregonians. Did you get any snow today? We woke to white again this morning. Just a little though.


Lori :P

01-27-2009, 03:57 PM
Thank you for the replies! I live near Bend OR and we got 8 inches of snow on the ground at our house this weekend and since we just hit 30 degrees for the first time in days I think we will have the snow for another week.

Question for anyone - Who do you see for your Lupus?

We only have one Rhuemy in my area we also only have one allergy specialist, 1 GI clinic, and a limited other doctor specialties, but if your in need a OB-GYN they are everywhere here LOL . MY PCP is taking really good care of me and is on top of things. I wrote him a couple of letters while dealing with the GI and he was there for me. MY husband and kids like him too so that cool. At least I am getting somewhere now.


01-27-2009, 04:43 PM
I have a really good family doctor. I have a really horrid rheumy...there are other's here in the area, but the waiting list is years long. Yes I'm on some of those waiting lists :P

The idget I see thinks that lupus is just a catch phrase used by doctor's who can't find out what's wrong with ya.

Hmmm she hasn't been able to pin point what's wrong with me either. Idget.

Well at least I'm on medications that are working well for me.

Flipping cold here too...been in a deep freeze for a couple of weeks now. My skin feels like it's trying to crawl off my body.

01-27-2009, 04:45 PM

I've been with the same doctor for 27 years, since being diagnosed. He's an Immunology/Allergy Specialist at OHSU, Oregon Health and Science University.

I've been so fortunate to have an excellent doctor and to be able to stay with the same one for all these years. That is a blessing for sure, with this illness. I've had excellent continuity of care, and he knows all the best specialists for any problems I've ever had.

Stay warm..........


Lori :P

Angel Oliver
01-28-2009, 05:30 AM
Just to say hello and welcome. I hope you settle in here nicely and we all can help you in some little way.


01-28-2009, 09:29 AM
Hi RedHairAngel,

Glad to have you here...this is a good "rant and rave room" :) because the people really listen and empathize. I now consider this Forum part of my medication :D I am pretty new to all this but I hope you feel a little more comfortable knowing we will listen.

01-28-2009, 12:32 PM
Hi RedHairAngel;
I am late in welcoming you to our family. However, I see that you've been warmly welcomed by other members. I just wanted to add my welcome to the mix! As you've seen, if you need anything...we are here to help.

Peace and Blessings

01-30-2009, 12:11 PM
I got some of my blood tests back and Lupus is still suspected but so is Crohn's as both came back possitive. The good thing about that is that they both are treated with the same types of drugs Prednisone and immune supressants. Plaquinil is my doctors choice for right now been on it only a week and I haven't seen any really improvements just more dreaded "D" and nausea but I was reassured they are only temp side effects I hope !


Angel Oliver
01-30-2009, 12:14 PM
Sending you lots of gentle hugs.


02-05-2009, 02:51 PM
Has anyone ever heard of Lupus panniculitis (lupus profundus)?? I have sores and skin rashes that looks like this.


02-05-2009, 03:47 PM
Yes those side effects do subside. However, I am finding that those side effects are common for a lot of our drugs for this wonderful gift! (I am being sarcastic in that last line just in case anyone is wondering)