View Full Version : Bloods, med history point towards auto-immune probably SLE
12-20-2008, 02:44 PM
Hi my doctor just told me yesterday that my bloods and medical history point towards an auto-immune disorder probably SLE. She suspects that I have mild Lupus but doesn't really know much about it she looked some stuff up on the internet and printed it off for me. She has referred me to a rheumatologist but with the way our medical system works over here in Ireland it will be some time, maybe months, before I get an appointment so in the meantime I was wondering if anyone can offer me advice or has any opinion on whether my doctor is right.
Here is a brief medical history:
I am a female aged 46, ex-smoker (11years), non-drinker, not over or under weight.
1. In 1999 I was sent to a physician for various tests because I had the following symptoms for the preceeding 18 months;
Chronic fatigue, persistent itchy ear infection (otitis), itchy skin, recurring boils, cysts in my breasts, a swollen ear lobe, severe rash around my perinium, and lower limbs, frequent persistent colds and headaches.
Results showed that I tested positive for helicobacter pilori and that I had gastritis, duodenitis, IBS and diverticular disease. FBC and ESR were normal with an ESr of 12. Liver tests showed raised bilirubin confirming Gilberts disease (which is benign) An antibody screen was clear except for antinuclear factor with a titre of 1/160 but the double stranded DNA antibody was negative so they said I didn't have lupus.
2. In the years since then I have had periods were I feel good and periods where the overwhelming fatigue returns. However the itchy skin and the otits never go. Every so often I go back to the doctor about the overwhelming tiredness occasionally she has sent me for tests for thyroid function and anaemia. Blood tests usually show that I am anaemic or borderline. This year in addition to my iron tablets she prescribed tablets to reduce bleeding during my period in an effort to address my fatigue. I also suffer from frequent headaches which my doctor says is caused by chronic sinusitis a specialist confirmed the sinusitis.
3. About 9 months ago my fatigue returned but this time was accompanied with soreness in the joints of my fingers - over the last months the soreness and stiffness has spread to my elbows, hips, knees and most recently my wrists. My muscles ache all the time and walking up stairs is like climbing a mountain, I find it difficult to get up from sitting and my fingers have started clicking. I also wake most mornings with a headache. I am doing my PhD at the moment and decided to go to the college doctor instead of my regular doctor when I told her my symptoms she sent me for blood tests -
ANA - moderately positive between 1:160 and 1:640
DNA ELisa - above normal 62.2 (over 55 is positive and 0 - 35 is normal)
DNA Crithidia - negative
total protien above normal 82
Gamma- Gt - above normal 49
total cholesterol above normal 6.37
RCC 3.78 - below normal
HCT 0.366 - below normal
ESR - normal
C-Reactive Protien - normal
Thyroid function normal
As I said based on these results, my med history and the fact that my ana titre has increased the college doctor thinks i may have mild sle but she doesn't think that anything can really be done I got the feeling that it will be a case of learning to live with it - is this true? I am worried about the disease progressing and wonder if the slightly elevated liver results are a sign that something is going wrong with my liver - any comments or advice would be greatly appreciated. Oh I forgot to mention I also had chronic pain in the base of my spine for four years and received spinal injections for these thankfully in the last few months this pains only occurs rarely.
12-22-2008, 09:50 AM
From your symptoms, I have to agree that there is some type of auto-immune issue going on. In fact, it sounds as if there might be overlapping issues. In auto-immune diseases, it is quite common for us to suffer from more than one illness at the same time. For instance, I have mild Lupus, but very active Fibromyalgia, active Raynaud's Syndrome, active Irritable Bowels Syndrome (a symptoms of Fibromyalgia), recurrent migraines (due to Lupus and Fibromyalgia), extremem fatigue (due to Lupus and Fibromyalgia), widespread pain in my muscles (Fibromyalgia), chronic pain and inflammation in my joints (Lupus), extreme sensitivity to cold (Lupus and Raynaud's Syndrome), extreme sun sensitivity (Lupus), etc. I could go on with my symptoms, but you get my drift.
At any rate, it appears that you and your doctor will have to learn about Lupus and its many, many overlapping illnesses so that you can learn that THERE IS SOMETHING THAT CAN BE DONE ABOUT THE SYMPTOMS! The cornerstone treatment for Lupus (and other auto-immune diseases) is Plaquenil, Prednisone, and NSAIDs.
1) Plaquenil: Used for the arthritic pain in Lupus. Also used to treat cutaneous manifestations of Lupus (rashes, mouth and nose ulcers etc.). Also, helps with fatigue.
2) Prednisone: Lupus is a disease that causes inflammation throughout the body. This is partially due to the over-active immune system (the body attacking itself and destroying healthy tissues etc. and making harmful antibodies). The immune system protects against foreign bacteria and viruses. In some illnesses (such as Lupus), the immune system produces antibodies, which become overactive and cause undesirable symptoms. These illnesses are referred to as "autoimmune diseases".
Prednisone suppresses the production of these antibodies. This suppression can make it slightly harder for you to fight off infection but also stabilizes the immune system if it is overactive with an autoimmune disease (such as Lupus).
3) NSAIDs (Non-Steroidal Anti-Inflammatory Drugs): Pain and inflammation are common in people with systemic lupus erythematosus (SLE) and in people with other auto-immune diseases. Sometimes these symptoms indicate serious organ involvement which may require powerful anti-inflammatory and immunosuppressive drugs, such as steroids (cortisone, prednisone).
At other times, the inflammation is not as severe or does not affect major organs, and a less potent drug is indicated. In these cases, other milder anti-inflammatory and analgesic drugs can be used, especially a group of drugs called the non-steroidal anti-inflammatory drugs (NSAIDs). There are many different types of NSAIDs, available either by prescription or over the counter. Traditional NSAIDs-ibuprofen (Motrin, Advil), naproxen (Naprosyn, Alleve), and piroxicam (Feldene), to name a few-inhibit both cox-1 and cox-2 prostaglandins. Many of the undesirable side effects of using these non-selective NSAIDs result from inhibiting the cox-1 "maintenance" prostaglandins.
The beneficial effects of the newer NSAIDs result from inhibiting, or limiting, only the cox-2 "inflammatory " prostaglandins. These specific NSAIDs are effective for treatment of musculoskeletal pain and are without many of the side effects associated with the traditional agents.
Since it does appear that there is some type of atuo-immune issue happening with you, perhaps you can discuss your symptoms and the above mentioned treatments with your doctor.
There are times when doctors will say that they have to wait for more symptoms to develop before they will make a definitive diagnosis. However, this DOES NOT mean that the symptoms that you are currently suffering should go untreated.
I wish you the very best and please know that you can come to us with all of your questions or concerns and we are always here to help you as much as we can.
Peace and Blessings
12-22-2008, 10:36 AM
Thank you so much for your comprehensive reply and so sorry to hear that you have so many symptoms. I've read lots of your posts around the site - you do a fantastic job.
I'd like to do some more reading around the subject before I see the rheumatologist can you recommend any good books? I am very sensitive to ibrufen and asprin (instant severe diahorea) so I have been taking paracetamol/codine based otc meds for the pain and over the counter antihistamine for the itch which is persistent and maddening - Can you recommend any alternatives?
12-22-2008, 11:40 AM
The quintessential book about Lupus is:
* The Lupus Book: A Guide for Patients and Their Families by Daniel J. Wallace.
Other good books are:
* Living with Lupus: The Complete Guide, Second Edition
by: Sheldon Paul Blau, Dodi Schultz
* Lupus: A Patient's Guide to Diagnosis, Treatment, and Lifestyle
by: MD, Iris Quintero Del Rio
If, after reading these three books, you still need more information, I will be happy to suggest more books. However, most people find that these three books tell them almost everything that they need to know.
Antihistamines, which block certain types of allergic reactions, are sometimes included in topical preparations to relieve the itching associated with allergic reactions. However, they are not usually helpful on itching caused by an illness (such as Lupus).
Doxepin is an effective topical antihistamine for many conditions. However, the antihistamine diphenhydramine (common in many nonprescription topical preparations) can trigger an
allergic reaction when applied to the skin and is usually not recommended. Taking antihistamines by mouth does not seem to produce this type of reaction, so oral rather than topical antihistamines are preferred to relieve itching.
You should know that corticosteroids are the main topical drugs used to relieve inflammation (swelling, itching, and redness) of the skin. Corticosteroids are most effective for rashes caused by allergic or inflammatory reactions to things such as poison ivy, metals, cloth, drugs, eczema, and many others. Because they lower resistance to bacterial and fungal infections and inhibit wound healing, corticosteroids usually should not be used on infected areas or wounds. Corticosteroids are sometimes mixed with antifungal drugs to help reduce redness and itching while simultaneously eradicating the fungus.
Topical corticosteroids are sold as lotions, creams, ointments, solutions, foams, oils, and gels. Creams are most effective if rubbed in gently until they vanish. In general, ointments are the most potent. The type and concentration of corticosteroid in the preparation determines the overall strength.
Hydrocortisone is available in concentrations of up to
1% without a prescription; concentrations of 0.5% or less offer little benefit. Stronger corticosteroid preparations require a prescription (and, generally, we always need stronger concentrations). Doctors usually prescribe potent corticosteroids first, then less potent corticosteroids as the disorder improves. Generally, topical corticosteroids are applied 2 to 3 times a day in a thin layer, but high-potency formulations may be applied only once a day.
Again, this is an issue that you and your doctor should discuss in order to start a treatment regimen that works for you.
Peace and Blessings
12-22-2008, 02:00 PM
thanks for the advice. I just ordered the Wallace Book from Amazon. Enjoy the holiday season.
01-02-2009, 04:49 PM
I got the book from Amazon and read it from cover to cover the very same day - very informative - thanks for recommending it. I've got my first appointment with a rhuematologist on Monday - I got a cancellation so I don't have to wait for weeks which is good - I just don't really know what to expect I'm keeping my fingers crossed that she is good - I'll keep you posted.
01-05-2009, 02:19 PM
Had my first appointment with the rheumy today. She says that my symptoms aren't consistent with Lupus but thinks that I have Sjogrens. I don't know very much about Sjorgens but don't think I really have the right symptoms for it. Do you know anything about it? She has ordered a new blood test its hard to read her writing but I think it says TNA she's also ordered ANA and ds-DNA again plus an xray of my hip. She prescribed difene for the joint pain and wants to see me again in a month after the bloods come back.
01-06-2009, 09:11 AM
Sjogren's is one of the many "overlap" (aka: secondary illnesses) diseases that many Lupus patients suffer with. It is not at all unusual to find that, with Lupus, we also have other diseases, such as Sjogren's.
Sjogren's syndrome is also an autoimmune disease. Like Lupus, Sjogren's is characterized by the abnormal production of extra antibodies in the blood that are directed against various tissues of the body. In Sjogren's (an autoimmune illness), the disease causes inflammation in certain glands of the body. Inflammation of the glands that produce tears (lacrimal glands) leads to decreased water production for tears and eye dryness. Inflammation of the glands that produce the saliva in the mouth (salivary glands, including the parotid glands) leads to dry mouth and dry lips.
Sjogren's syndrome that is not associated with another connective tissue disease is referred to as primary Sjogren's syndrome. Sjogren's syndrome that is also associated with another connective tissue disease, such as rheumatoid arthritis, systemic lupus erythematosus, or scleroderma, is referred to as secondary Sjogren's syndrome.
Symptoms of Sjogren's syndrome can involve the glands (Extraglandular = outside of the glands), but there are also possible affects of the illness involving other organs of the body. Other glands that can become inflamed, though less commonly, in Sjogren's syndrome include those of the lining of the breathing passages (leading to lung infections) and vagina (sometimes noted as pain during intercourse and/or recurrent vaginal infections).
Other extraglandular problems with Sjogren's includes joint pain or inflammation (arthritis), Raynaud's phenomenon, lung inflammation, lymph-node enlargement, kidney, nerve, and muscle disease. A rare serious complication of Sjogren's syndrome is inflammation of the blood vessels (vasculitis), which can damage the tissues of the body that are supplied by these vessels.
"The treatment of patients with Sjogren's syndrome is directed toward the particular areas of the body that are involved and complications, such as infection. There is no cure for Sjogren's syndrome.
Dryness of the eyes can be helped by artificial tears, eye-lubricant ointments at night, and minimizing the use of hair dryers. When dryness becomes more significant, the ophthalmologist can plug the tear duct closed so that tears cover the eye longer. Cyclosporine eyedrops (Restasis) are recently approved medicated drops that can reduce the inflammation of the tear glands improving their function. Signs of eye infection (conjunctivitis), such as pus or excessive redness or pain, should be evaluated by the doctor.
The dry mouth can be helped by drinking plenty of fluids, humidifying air, and good dental care to avoid dental decay. The glands can be stimulated to produce saliva by sucking on sugarless lemon drops or glycerin swabs. Additional treatment for the symptom of dry mouth are prescription medications that are saliva stimulants, such as pilocarpine (Salagen) and cevimeline (Evoxac). These medications should be avoided by people with certain heart diseases, asthma, or glaucoma. Artificial saliva preparations can ease many of the problems associated with dry mouth. Many of these types of agents are available as over-the-counter products, including toothpaste, gum, and mouthwash (Biotene). Vitamin E oil has been used with some success. Infections of the mouth and teeth should be addressed as early as possible in order to avoid more severe complications. Diligent dental care is very important.
Saltwater (saline) nasal sprays can help dryness in the passages of the nose. Vaginal lubricant should be considered for sexual intercourse.
Hydroxychloroquine (Plaquenil) has been helpful for some manifestations of Sjogren's syndrome. Serious complications, such as vasculitis, can require immune-suppression medications, including cortisone (prednisone and others) and/or azathioprine (Imuran) or cyclophosphamide (Cytoxan)."
I hope that this has been helpful to you. I am so glad that you found the book to be informative. Our best weapon against this disease and in helping us to manage our illness is knowledge. Keep learning, keep asking questions, and always be pro-active in your health care. :lol:
Peace and Blessings