View Full Version : Undiagnosed with questions!!

08-07-2007, 12:54 PM
I'm 22 years old (female) and for nearly five years now I have had joint pain. Up until recently I have not been able to even remember the last time I wasn't in pain. I gave up in my search for answers after seeing multiple rheumies, orthopedists, cardiologists, and general medical doctors. I had convinced myself that I had simply overdone it in my years before college during which I played competetive sports nearly every day of the year.

So, recently I went to a new rheumie and we went over a detailed medical history including my childhood migraines, rashes, allergies, dry eyes, chest pain, and a variety of other ailments and decided to try me on Plaquenil, even though none of my blood tests show any sign of SLE. This was about 2.5 months ago that I started on the Plaquenil and I haven't felt this good in years. Improvements = pain has decreased significantly and I've even had a good couple of weeks with no pain at all, I am able to jog (which I haven't done in years), I have only had 3 migraines since starting the Plaquenil (all within the first month) whereas I normally have 1 to 2 a week, I notice that my airways are not mucousy after exercise (like symptoms of asthma), and surprisingly, my periods have gone back to being monthly rather than once every 3 or 4 months. I go back to the rheumie in the morning to share my results...

My main question is, all these things, like my mucousy airways and my irregular periods, does anyone else have symptoms like these related to SLE? I have been searching for links between SLE and these problems and haven't been able to find any. I'm really confused and wondering if there is anything else it is more likely to be. I do get the "butterfly rash" over my nose and cheeks but it's just pinkish, not red or dark. I have so many other symptoms of SLE but these just seemed to be weird to me, like they don't add up quite right.

My other question is, if it does turn out to be SLE, how likely is it that my 17 year old sister and my mother both have it as well. My mom has been in pain for nearly 10 years and constantly fatigued and was diagnosed with fibromyalgia. And my sister is still undiagnosed with low platelets and a clotting disorder and recently she has become fatigued and has joint pain constantly.

Sorry this is so long, just really confused and curious about SLE.

Thanks for your help!

08-08-2007, 09:29 AM
Hi ermerrif; :D
You need never apologize for the length of your post. All of your questions are valid and, apparently, very important to you. So, no apology needed. I will try my best to answer your questions. However, we have members here who are also extremely knowledgeable and who have personal experience with many things, they will probably pop in to give you advice also.
With reference to mucousy airways: Many believe that Lupus can active after you've had a virus. After having a virus it is possible for inflammation to linger in your lungs, nasal cavaties etc. Generally, treatment to relieve the inflammation will also relieve the mucous. Prednisone is most often used for relieving the inflammation.
You should know that The heart and lungs are frequently affected in people with systemic lupus erythematosus (SLE). These complications are known as cardiopulmonary (cardio = heart; pulmonary = lung). Pleurisy is very common in Lupus patients. The pleura is a membrane that covers the outside of the lung and the inside of the chest cavity. It produces a small amount of fluid to lubricate the space between the lung and the chest wall. As lupus activity generates immune complexes, they initiate an inflammatory response at this membrane, a condition called pleuritis or pleurisy. However, the symptoms of pleurisy also includes: severe, often sharp, stabbing pain that may be pinpointed to a specific area or areas of the chest. sometimes the pain is made worse by taking a deep breath, coughing, sneezing, or laughing.
With reference to Lupus and irregular periods: This is, unfortunately, quite common in women who have Lupus. The exact mechanism for this irregularity in Lupus patients is not known. For many women, lupus flare-ups occur during the second half of the menstrual cycle, with symptoms disappearing or becoming less severe when menstruation starts. Doctors are just starting to understand and to have additional information about the role of hormones in lupus. Like I said earlier, many patients have menstrual irregularities. These occur when the patient is having a lupus flare or in the setting of medication treatment for lupus. Doctors are also researching the role that birth control pills play in lupus flares. There is a national trial on how lupus symptoms change when patients are taking birth control pills or hormone replacement therapy [HRT] after or during menopause.
There is also a condition called premature ovarian failure when the menstrual cycle ceases much earlier than for normal menopause. Although it has not been proved, many doctors feel some lupus patients may be at risk for premature ovarian failure, but the reasons for this are not now known.
With reference to you brothers, sisters and your mother:
Many doctors and researchers believe that Lupus is genetic. Genetics is the study of genes and how they behave and function. Here is an article that I found which discusses Lupus, genetics and heredity:
" LUPUS & GENETICS: Systemic lupus erythematosus, aka SLE or lupus, is thought to be a genetically complex disease, meaning that several different genes are involved in its development. Scientists suspect that tens, or even hundreds, of genes may be involved in the disease. These genes, according to recent genome-wide genetic scans, may vary depending on a patient's ethnicity or the disease symptoms from which the patient suffers. While several genomic "hot spots" (areas where scientists believe it is extremely likely lupus genes exist) are currently being explored, some of the genes have clearly been identified (e.g. FcγRIIA; FcγRIIIA; complement components C2, C4 and C1q; PDCD-2; and HLA-DR).
THE HEREDITY OF LUPUS: Many researchers think that lupus is hereditary, meaning it is passed on genetically from one generation to another. The
pattern of inheritance is, however, unclear. It is known that not everyone who has the lupus genes develops the disease,
as demonstrated in numerous identical twin studies (concordance, or the rate at which both identical twins are affected with lupus, varies from 15-69%). This information indicates, first, that people who have lupus genes have a genetic predisposition to the disease, or a higher likelihood of developing it, than the general population. Merely having lupus-linked genes is not enough to cause a person to develop lupus. This in turn indicates that an external or environmental trigger is also involved in lupus disease onset in people with the genetic predisposition. (Known triggers include stress, hormonal changes, illness, certain viruses including Epstein-Barr virus and chemical exposure)."

I hope that I've been able to answer your questions. Please let me know if you need anything further!

Peace and Blessings

08-09-2007, 11:15 AM
Hi Ermerrif!

Welcome to the Forum! :D I'm really glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

I'm SO glad to hear that the Plaquenil is helping you so much! :D

I have been suffering from irregular and extremely heavy periods since mine started (I am currently almost seventeen years old), so I went to see the Gynaecologist last year and it turned out that I had quite a few endocrine problems, as well as Endometriosis. So, (an) endocrine problem(s) could be causing your irregular periods (you need to see a Gynae. for blood tests to have this checked); otherwise, it might be Endometriosis (which, again, is diagnosed by a Gynae., but can only be 100% diagnosed via laparoscopy). Do you have SEVERE menstrual pains? This is a key sign and symptom of Endometriosis. My pain used to be so severe that I would actually faint! S.L.E., as a systemic inflammatory disease, can make Endometriosis more likely.

Here is some information on Endometriosis:









Keep well and God bless! :)

08-09-2007, 01:16 PM
Thank you for your responses! I have been the the gynecologist and had blood tests done and was simply told that I have polycystic ovarian syndrome. Although my estrogen levels are normal, my testosterone levels are much higher than the average female. That is the explanation for the irregularity in my case. I don't get severe pain with my period. I guess I am just wondering how likely it is that the high testosterone levels could be caused by something like SLE. I find it really strange that I had such a drastic change in my cycle since starting the Plaquenil. It was completely unexpected!

Thanks for your help! I will keep your information in mind in case I do end up with severe pain... I'm not very used to having a period at all so this is actually somewhat new to me... :?

08-09-2007, 01:25 PM

It's only a pleasure! :D

I also have pretty high Testosterone levels! :( That definitely causes irregularity in one's menstrual cycle.

Keep well and God bless! :)