Discussions that mention septra

Lupus board

Hi Everyone... I'm looking for advice and opinions if anyone has any to share.

Around 4 years ago I started to feel really sick all the time and tired as well as all kinds of pain. I'd go to the hospital with some of the worst pain I've ever had... they'd come back and tell me that my white cell count is high and that I must have some type of infection they couldn't find and they'd give me pain meds and send me home.

One day I woke up with some mild pains in my back and by the time I got to work I could barely stand the pain. I once again went to the hospital and by the time I got there my legs just wouldn't hold my up or do anything. The pain was the worst pain I've ever felt. Again I was given pain meds and anti inflammitories and sent home. Eventually my legs worked again and shortly after the pain subsided, but I broke out in mouth ulcers that were also very painful. My Dr said this was an allergic reaction to the anti inflammitories. Since then I break out in mouth ulcers often. For about three years I've had chronic hives or urticaria and my allergist said that I'm just a highly allergic person if that makes any sense. I do however have some legitimate drug allergies the main one being septra which has been prescribed to me in the past for my multiple bladder and kidney infections.

Because I'm always tired and feel weak I've been treated for "depression". I've also been taking 20mg of reactin for the last 3 years to treat the all over itchiness and chronic hives.

I'd recently gotten tired of the treatment and asked my GP to send me to a different specialist. She decided to send me to an internalist. I went to see him yesterday and that was the first time I'd ever heard of lupus. He took 8 vials of blood and said he'd screen it completely for autoimmune disorders but figured it would come back positive for lupus based on my symptoms. At this time I know very little about lupus and what to expect for my future. Since I left his office yesterday I have a hundred questions that I never asked.

The only way I can describe the pain I have is that I feel like I'm in heavy labour. When I had both my kids I had severe back labour that went from my lower back and hips into my knees and ankles. I'm wondering if this type of pain is normal?

Any advice is very much appreciated and thank you for listening to my story

Hi Sherry and welcome to our Lupus haven :)

First of all, I am glad that you have seen a specialist for your symptoms and I am beaming with GLEE that they are testing you for Lupus. The symptoms that you describe are very typical with Lupus. There are also many misconceptions when it comes to Lupus and I will try and get you on the right 'road' to understanding Lupus a bit better.

Lupus is an autoimmune disease where the body basically is allergic to itself (simply put) and attacks itself. The immune system is in overdrive and mistakes healthy cells for unhealthy ones. When we get a cold or a flu our immune system kicks into gear and helps to get rid it. In a person with Lupus, the body will think that it has to kick into high gear and get rid of infections that aren't actually there. The immune system can go into overdrive and have a real hay day in our bodies! They call this period of "hyperactive" immune response a "flare". You will see a lot of people use that word, and now you know what it means. There are two different kinds of Lupus. One is Systemic Lupus and the other is Discoid Lupus. Discoid Lupus more involves the skin causing rashes and scarring type lesions on the skin. DLE patients can have organ involvement but a lot of it is isolated to the skin. SLE patients (which is what your doctor is more leaning toward just by looking at your symptoms) is a systemic form of Lupus that can affect the internal organs and tissues. I said earlier how the immune system will go into overdrive and attack healthy cells, and this can happen in the organs and tissues. A common place for inflammation to occur is in the kidneys. Lots of Rheumatologists (or "Rheumy's" as we like to call them) will diagnose patients that don't have the blood work markers positive by doing a kidney biopsy. I can get into a lot of the details, but I will keep things as short as I can so I don't make your eyes go crossed with information!!

I want to point out next that every patient with Lupus is different. Some have very mild form of Lupus and have mild symptoms, while others have more aggressive forms and have severe symptoms and organ involvement. Every single patient you talk to with Lupus will tell you a different story about themselves! There are also many patients that not only have Lupus, but have some of the associated autoimmune diseases that can go with Lupus. One is a blood clotting disorder that can affect 70% of patients with Lupus called Antiphospholipid Syndrome or "Hughes Syndrome". If you look on the Lupus board here, you will find the Criteria to diagnose Lupus (and symptom list) and Hughes Syndrome there. Have a look and see how many symptoms you have (or have had in the past) of Lupus! Another thing I want you to know about Lupus is that it is NOT contagious. Lots of people think that it can be caught like a cold or flu, or through sexual contact. It can't! BUT Lupus can be genetic! Try and think of anyone in your family that has a history of Lupus ( or symptoms that were undiagnosed that could be Lupus) or other autoimmune diseases including Rheumatoid Arthritis. Can you think of others in your family that may have or have an autoimmune disease? I am the only one in my immediate family with Lupus, but my grandma had Rheumatoid Arthritis. Lots of people don't have a family history of Lupus too, so its kind of hit and miss.

The reason that I got so excited about your doctor doing the blood work for Lupus and actually thinking of Lupus as a possibility is because many of us go for YEARS and are passed off from doctor to doctor to doctor and no one can figure us out. Lupus can be a tricky one to diagnose, but a good clinician (and blood work master) can figure it out quickly. There are blood work markers for Lupus and that would by why you had so much blood taken! The basic ones include the ANA, Anti-DNA, Anti-RO, Anti-LA, Anti-SM etc. The list is endless... trust me on that one~! :) This is where things get tricky. There are 10% of patients with Lupus out there that do NOT have the blood work antibodies positive, and never have in the past! These patients are considered to have "Sero-Negative Lupus". Sometimes the blood work only comes back positive when someone is in the hospital very sick, and sometimes the blood work never comes back positive at all! So thats why I say it takes a good clinician to catch Lupus, its a real sneaky one :)

It sounds like you have gone through enough with your symptoms and I am glad that you are seeing someone that can look after you. I want to make a few comments about things that you have said in your post that lead me towards Lupus as being a possible diagnosis:

~ You have an allergy to septra~ It is very common for patients with Lupus to have this drug allergy, and they aren't sure why

~You have had multiple kidney/bladder infections~ As I said above, this is common

~You have had mouth sores~ This is a common symptom of Lupus patients

~Depression~ Even if you did have depression, this is a symptom of Lupus!

~You have pain~ Ohhh let me tell you about pain!! I have had pain in my abdomen like what you describe for 3 years!! This is common with Lupus patients too. They aren't able to figure out where mine is coming from because with Lupus it can be a tiny little area that is undetectable with testing

I would check out that Criteria to diagnose Lupus at the top of the Lupus board here. Let me know how many of the AMA criteria you have, and the alternative criteria. Once you look at your whole history it gets the mind going and you will be saying "OHHH yeah!! I remember when I had _______!!" It really surprised me how many symptoms I had of Lupus before I was diagnosed properly. Please take care Sherry, and ask any questions that you want :) I love looking at blood work, so if you want you can post that here when you get it back too! I am hoping and praying that this doctor will get this all figured out for you! Lupus is a journey, right from getting diagnosed! Talk to you soon,

~Luv, Angelic
Dear Sherry,

Welcome! I'll add on, but try not to duplicate the good info AngelicBrat has already posted...

When we think of lupus, it's full-blown SLE. The "sticky posts" listing criteria at the top of this board *only* apply to SLE. To be Dx'ed with SLE, you must have had at least 4 of the criteria *at some time in your life*---which means not necessarily all at once & not necessarily present at time of appt. You'll also note that some of the criteria are single (e.g., "photosensitivity") while others are groups of related possibilities.

Counting SLE criteria is weird & multi-layered. It's made more complex by the fact that the ANA test is only a threshhold test, meaning, in itself ANA is not diagnostic of lupus. ANA can be positive in people with simply a passing virus or a family tendency; it can go positive in people with any one of *several* autoimmune-type problems (not just lupus); and it can wax and wane. That said, a very high percent of people with the SLE (maybe as high as 95% to 98%; figures vary) have a positive ANA at some point along the road.

But lupus runs along a continuum & has subsets. At the "least" end is the DLE subset (discoid LE). Its main identifiable feature is scarring &/or depigmenting rashes that are "discoid", meaning coin-shaped. Pain & fatigue may also be present. ANA is positive in only about 50% of the DLE subset.

Then there's a newer intermediate subset identified in 1978, called SCLE (subacute cutaneous LE). Two different rashes occur in SCLE, often on torso; and both are usually nonscarring & nondepigmenting (unlike DLE rashes). One possible rash is circular, and the other looks like (but isn't) psoriasis. The odds of a positive ANA are only about 70%. Anti-Ro antibodies are found in about 70%. Symptoms can range through the entire SLE range, but SCLE is typically milder than SLE. The toughest lupus problems (CNS & kidney) are possible but considerably less likely. Many SCLE patients score at least a "4" on the "4 of 11" criteria at time of Dx, but often not the most profound "4" from the list.

Then there's DILE, which is drug-induced LE. There are at least 70 or more drugs known in the U.S. known to cause lupus-type symptoms. Within weeks or several months of starting a drug, lupus-like symptoms can appear, symptoms that rarely affect the major organs, instead more often making ANA positive & causing pain, fatigue, rashes, etc.

ADDITIONAL THOUGHT ON DRUG REACTIONS: AngelicBrat pointed out that many people with lupus (or on the road to developing it) are reactive to certain drugs, mentioning Septra as one. This is a different situation than a person who gets flat-out *DILE* from a drug that *induces* lupus. Such a reaction may in fact add additional weight to a Dx of SLE, SCLE, or DLE.

Neo-natal lupus is the last of the identified groups. It refers to a very small number of *infants* born with lupus symptoms due to autoantibodies crossing the placenta. ('Nuff said...)

Moving on... Even SLE patients can remain mild to moderate, meaning that despite loads of varied symptoms, major organs & CNS are spared. Where there's no major organ involvement, many people respond well to a class of drugs called antimalarials. The other two broad classes of lupus drugs, steroids & immune supressants, are reserved for people with greater problems, incl. major organ involvement.

Many people with lupus can lead full & active lives---yes, they get tired, alter their schedules & lifestyles, etc.---but basically managing their symptoms pretty well although not perfectly. And even the tougher cases fare far better today, thanks to modern drs. and meds.

Meds, regular checkups, and sun avoidance are the major cornerstones of a treatment plan once lupus is Dx'ed.

It's the milder cases that tend to be much, much harder to Dx than the severe ones. Example: if a dr. finds anti-ds-DNA and a malar rash and kidney markers in a very sickly person, lupus ought to come to mind very, very quickly. So while it's good when we have lesser problems than that, from a diagnstic standpoint we can wait many appts. and a few years for answers. Which is maddening & depressing, too...

Sometimes a good dermatologist (or dermatopathologist) skilled in autoimmunes can perform skin biopsies of lesional (or sometimes even non-lesional) skin. Under a microscope, cell structure changes can be seen in lupus rashes; then under immunofluorescent stain tests, the samples can light up due to presence of "immune junk" (subcutaneous immune by-products not seen in healthy people).

Because of the huge range of symptoms & problems, we often look different from one another. I had many problems over years that in retrospect now look like lupus OR like "pre-lupus" (if there is really such a concept!) I was Dx'ed with SCLE, but was sero-negative for ANA & anti-Ro (which happens to perhaps 30% in this group). I had other blood anomalies (e.g., anemia) but none that screamed "It's lupus!"

It was my persistent & particular rash that put me into the SCLE subset---not the wide variety other symptoms, which could happen in SLE, too. The rash was on upper arms & torso: 4 years of welts that looked like hives but didn't itch much. For the enxt 4 years, the welts would begin per normal but "morph" into almost perfect circles, then expand outwards and fade.

A couple of questions: (1) Have you ever seen a dermie for an evaluation, incl. skin biopsy (you'd mentioned an allergist)? (2) Do you see any correlation of symptoms (rashes & other stuff) to recent sun exposure? (Photosensitivity can become very obvious quickly---or build slowly.)

So... while I'm surely no dr. (to put it mildly!), your symptoms ring bells with me, as they did with AngelicBrat. Courage! I hope you can get some answers soon---whether it's SLE, one of the lupus subsets, some similar autoimmune, or something else... Sincerely & with best wishes, Vee

(P.S. I'm negative for antiphospholipid---but watched for vasculitis. I've got *cutaneous* vasculitis; but it's the "systemic" vasculitis that can be a show-stopper. As AngelicBrat conveyed, such "extras" seen in lupus patients also need evaluated and monitored.) P.P.S. Had to edit out a boo-boo sentence fragment, sorry. V.)