I am new
I was dx with sle last week after 2 flare ups with the same s/s a year apart. I have fatigue, joint pain, rash, microcytic anemia and last positive
labs. I was diagnosis with auto-immune thyroid about 3 years ago after
bouts of joint pain, brain fog and positive labs and ultrasound after taking
levothyroxin I thought I was fine until this September. I am scared,
depressed and I don't like needles or pills. I have rx's for Plaquinal and
steriods but I have not filled them yet. I am having a hard time dealing
with this especially after I saw the rhuemotologist. He basically told me
that treating this dx holistic was not going to work I could keep taking my
vit and supplements if I wanted to spend the money. I can say I did not
like him very much.
I am married, I have good resources, great benefits and I am trying to
keep working at least part-time. I know stress is the enemy and exercising and staying fit is my friend. Yet, I read the postings and
wonder when or if this dx will get worse, will my hair fall out, will I get
organ involvement and can I control this dx. I am so confused!!!!
Hi Tgirl :lol:
Welcome to our family. I can truly understand your fear and your trepidation. Yes, it is scary to have a diagnosis of Lupus and there are so many possible symptoms that the prospect of getting them can cause you great anxiety. You are right about eating right, exercising and making appropriate life-style changes to help maintain a reasonably normal life-style. What is also important is taking your medication so that you help your body to possibly stave off any further complications and/or symptoms. Although there is no cure for lupus, effective treatment can minimize your symptoms, reduce inflammation, and maintain your normal bodily functions. Which medications you take and their dosage depends on which organs (if any) are involved, the severity of involvement and which symptoms you are presenting.
The common treatments are as follows:
Nonsteroidal Anti-inflammatory Drugs (NSAIDs) – These drugs, such as aspirin and ibuprofen, are usually recommended for muscle and joint pain, and arthritis.
Acetaminophen – A mild analgesic used for pain, such as Tylenol.
Corticosteroids – Synthetically produced corticosteroids, such as Prednisone, are used to reduce inflammation and suppress activity of the immune system.
Antimalarials – These drugs, such as Plaquenil, are prescribed for skin and joint symptoms of lupus. It may take months before these drugs demonstrate a beneficial effect.
Immunomodulating Drugs – These drugs, such as Imuran and Cytoxan, act in a similar manner to the corticosteroid drugs in that they suppress inflammation and tend to suppress the immune system.
Biologic Drugs – These drugs include agents that block the production of specific antibodies, like those against DNA, or agents that act to suppress the manufacture of antibodies through other mechanisms.
The most common Lifestyle changes include these preventative measure that can reduce the risk of flares:
* Avoid excessive sun exposure. Use sunscreens regularly to prevent rashes.
* Regular exercise helps prevent muscle weakness and fatigue.
* Immunization protects against specific infections (always check with your doctor first).
* Maintaining a healthy lifestyle – get plenty of rest, reduce stress, eat a balanced diet, and quit smoking.
* Educate yourself and your loved-ones about Lupus, its symptoms, treatments and medications.
If you start doing these things now and remain didligent about them, you may have great success at maintaining a relatively normal lifestyle and minimizing flares. However, it is important that you take your medications, make the lifestyle changes and keep yourself informed!
I wish you the best
I's really important to educate yourself about this disease as much as you can - Fear can often be overcome with knowledge. Many people live for years with relatively mild symptoms and never progress to organ involvement. One thing you have to keep in mind when viewing the postings - lupus affects everyone differently - just because someone develops kidney problems or some other symptom, it doesn't mean you will. There are folks on this forum who have been living with lupus for twenty years or longer - you may have periods of remission where you feel relatively normal.
It sounds like you are not happy with this rheumatologist because he doesn't accept holistic medicine. If changing rheumatologists is not an option, and it often isn't, this may be an area where you have to talk frankly and reach a compromise. Many doctors are more comfotable with holistic medicine if you explain that you aren't rejecting conventional medicine, simply choosing to look for the best treatments available in both conventional and complementary therapies like nutrition, yoga, and so on. Many of us take prescription medicines and also use alternative therapies - the two aren't mutually exclusive. It's a matter of educating yourself and learning about all the treatments available - lupus is such a complex disease , you need all the ammunition available to fight it.