or make the tired go away???? Most of you know my story, I have been ill for 3.5 years, they thought ra, treated for ra but after a 3 week hospital stay this fall and a mediastinal biopsy, they say I do not have ra but a disease called sarcoidosis. Its sort of like an autoimmune disease of the lymph system, the symptoms and treatments are similiar to ra. Since I had already run through all the standard ra drugs, steroids, placquenil, imuran, enbrel, humira, mtx-they decided to start me on remicaid infusions 6 weeks ago.
The first 2 were two weeks apart and helped. Than you have to wait 4
weeks for the third one and I got so wore down, all the pain, swelling,
uvieitis, depression, not being able to breath, the whole kit and
caboodle.
I just kept telling myself the next infusion was soon. That infusion
came and went last Thursday. I continued to get worse and went to
Urgent Care Saturday morning. BIG MISTAKE. The doctor was rude and
clueless. First, she said its really hard to dx sarc and how did I know
thats what I had because the last time I was there a year ago, I told
them RA. I explained it took 3.5 years to get the proper dx, through a
mediastinal biopsy and handed her my huge chart turned to the page
with the biopsy results that said SARCOIDOSIS on it. She than said,
well sarc doesn't make people this sick. WHAT???? My eyes were so red
and almost swollen shut from the uvieitis, my hands look worse than the
pilsbury dough boys from the swelling, I am gasping for air and
coughing, can hardly move I hurt so bad, etc.
I asked her for a shot of steroids, a week pack of steroids and a
tordal shot for the inflammation and pain. She refused. She said
because I had been on blood thinners for previous blood clots, that
steroids would cause another pulmonary embolism.
I explained to her its been over 2.5 weeks since my last blood thinner
pill and that steroids actually enhance the effect of blood thinners so
if anything, we would have to worry about bleeding, no clots.
She than got snotty, asked me if I was a doctor, told me it sounded
like I knew too much which met I was probably making this up? HUH?????
If I was going to make up something, why would I make up a disease most
people don't even know about and ask for steroids, wouldn't I ask for
pain pills or something a bit more fun than steroids?
She refunded my copay and told me to go to the ER. After spending over
3 weeks in the hospital this fall, I have had enough hospitals. I went
home and tried to call my pulmonologist, of course he wasn't on call
and no they would not contact him and the doc on call wouldn't do
anything except say go to ER. GRR.
I dug around and found some old prednisone so I took 25 mg and started
loading up on the vicodin. Slept all weekend, literally. Finally got to
talk to my pulmonologist Monday and he said I did the right thing to
continue the steroids for another 4 days or so. He called in more
prednisone, eye drops and vicodin.
He said it will take several more treatments before I stabilize on the
remicade and that I might have to do short burst of steroids now and
than because I refuse to take them daily.
Its been 4 days on the steroids and I feel like there are only two
elephants on my chest instead of the whole heard but I hurt from head
to toe. My eyes are still real bad, my hands are barely functioning and
I am working full time. I go to bed at 7 pm and sleep until 8am when I
have to get up for work and I am so exhausted, I am falling asleep
driving to work and at my desk. My bones are tired. I need to crawl
into bed and sleep for a week.
Problem is, I work for a small optometrists office and I am the only
girl, there is no one to call to cover me. We have patients scheduled
this afternoon and tomorrow morning so there will be no time off for me.
Sorry this is so long, I guess I just needed to vent to people who understand. Thanks for listening.
Oh goodness! *gentle hug*. I am so sorry you are going through this, it isn't fair! And I understand what your frustration with the doc. We have all seen multiple doc have had this explained to us in depth. Not to mention most of us have researched and asked questions. I am sorry no one listened to you, you know your body and what helps your body! So I hope this doesn't stop you from speaking up again. I don't know how to help with the fatigue because I am there myself, I can't get off work and I can't get enough sleep. I am running so low right now! Treat yourself to something nice though, and relax for a little but before you drag yourself to bed. I find I sleep much better if I calm my nerves before heading to bed. Oh, it makes me so mad! Hope you feel better! While you are feeling so tired though make sure your eating lots of colorful veggies and fruits! This will at least give you a little energy! Michele, I was hoping you were all better by now! So sorry you're feeling badly, and you're getting the usual garbage from docs. Definitely make sure your regular doc gives you extra scripts for steroids so you can get them when you need them in the future.
Sarcoidosis most commonly affects young adults of both sexes, with a slight preponderance for women having been reported by most studies. Incidence is highest for individuals younger than 40 and peaks in the age-group from 20 to 29 years.[1]
Sarcoidosis occurs throughout the world in all races with a prevalence ranging from 1 to 40 per 100,000. The disease is most prevalent in Northern European countries, and the highest annual incidence of 60 per 100,000 is found in Sweden and Iceland. In the United States, sarcoidosis is more common in people of African descent than Caucasians, with annual incidence reported as 35.5 and 10.9 per 100,000, respectively.[2] Sarcoidosis is less commonly reported in South America, Spain and India.
The differing incidence across the world may be at least partially attributable to the lack of screening programs in certain regions of the world and the overshadowing presence of other granulolomatous diseases such as tuberculosis, that may interfere with the diagnosis of sarcoidosis where they are prevalent.[1]
There may also be racial differences in the severity of the disease. Several studies suggest that the presentation in people of African origin may be more severe than for Caucasians, who are more likely to have asymptomatic disease.[3]
Sarcoidosis is a systemic disease that can affect any organ. Common symptoms are vague, such as fatigue unchanged by sleep, lack of energy, weight loss, aches and pains, arthralgia, dry eyes, blurry vision, shortness of breath, a dry hacking cough or skin lesions. The cutaneous symptoms vary, and range from rashes and noduli (small bumps) to erythema nodosum or lupus pernio. It is often asymptomatic.
The combination of erythema nodosum, bilateral hilar lymphadenopathy and arthralgia is called Löfgren syndrome. This syndrome has a relatively good prognosis.
Renal, liver (including portal hypertension), heart[4] or brain involvement may cause further symptoms and altered functioning. Manifestations in the eye include uveitis, uveoparotitis, and retinal inflammation, which may result in loss of visual acuity or blindness. Sarcoidosis affecting the brain or nerves is known as neurosarcoidosis.
The combination of anterior uveitis, parotitis and fever is called uveoparotitis, and is associated with Heerfordt-Waldenstrom syndrome. (D86.8)
Hypercalcemia (high calcium levels) and its symptoms may be the result of excessive conversion of vitamin D to its active form by epitheliod macrophages.
Sarcoidosis most often manifests as a restrictive disease of the lungs, causing a decrease in lung volume and decreased compliance (the ability to stretch). The disease typically limits the amount of air drawn into the lungs, but produces higher than normal expiratory flow ratios. The vital capacity (full breath in, to full breath out) is decreased, and most of this air can be blown out in the first second. This means the FEV1/FVC ratio is increased from the normal of about 80%, to 90%. Obstructive lung changes, causing a decrease in the amount of air that can be exhaled, may occur when enlarged lymph nodes in the chest compress airways or when internal inflammation or nodules impede airflow.
Chest X-ray changes are divided into four stages
Because sarcoidosis can affect multiple organ systems, follow-up on a patient with sarcoidosis should always include an electrocardiogram, ophthalmologic exam, liver function tests, serum calcium and 24-hour urine calcium.
No direct cause of sarcoidosis has been identified, although there have been reports of cell wall deficient bacteria that may be possible pathogens.[5] These bacteria are not identified in standard laboratory analysis. It has been thought that there may be a hereditary factor because some families have multiple members with sarcoidosis. To date, no reliable genetic markers have been identified, and an alternate hypothesis is that family members share similar exposures to environmental pathogens. There have also been reports of transmission of sarcoidosis via organ transplants.[6]
Sarcoidosis frequently causes a dysregulation of vitamin D production with an increase in extrarenal (outside the kidney) production.[7] Specifically, macrophages inside the granulomas convert vitamin D to its active form, resulting in elevated levels of the hormone 1,25-dihydroxyvitamin D and symptoms of hypervitaminosis D that may include fatigue, lack of strength or energy, irritability, metallic taste, temporary memory loss or cognitive problems. Physiological compensatory responses (e.g. suppression of the parathyroid hormone levels) may mean the patient does not develop frank hypercalcemia.
Sarcoidosis has been associated with celiac disease. Celiac disease is a condition in which there is a chronic reaction to certain protein chains, commonly referred to as glutens, found in some cereal grains. This reaction causes destruction of the villi in the small intestine, with resulting malabsorption of nutrients.
While disputed, some cases have been determined to be caused by inhalation of the dust from the collapse of the World Trade Center after the September 11, 2001 attacks.[8] See Health effects arising from the September 11, 2001 attacks for more information.
Corticosteroids, most commonly prednisone, have been the standard treatment for many years. In some patients, this treatment can slow or reverse the course of the disease, but other patients do not respond to steroid therapy. The use of corticosteroids in mild disease is controversial because in many cases the disease remits spontaneously. [9] Additionally, corticosteroids have many recognized dose- and duration-related side effects (which can be reduced through the use of alternate-day dosing for those on chronic prednisone therapy [10]), and their use is generally limited to severe, progressive, or organ-threatening disease. The influence of corticosteroids or other immunosuppressants on the natural history is unclear.
Severe symptoms are generally treated with steroids, and steroid-sparing agents such as azathioprine and methotrexate are often used. Rarely, cyclophosphamide has also been used. As the granulomas are caused by collections of immune system cells, particularly T cells, there has been some early indications of success using immunosuppressants, interleukin-2 inhibitors or anti-tumor necrosis factor-alpha treatment (such as infliximab). Unfortunately, none of these have provided reliable treatment and there can be significant side effects such as an increased risk of reactivating latent tuberculosis.
Avoidance of sunlight and Vitamin D foods may be helpful in patients who are susceptible to developing hypercalcemia.
Michele, the theory is to hit the sarcoidosis hard and prolonged and then taper. 25mg, hit and miss, for a week only, etc. isn't hitting it hard. How does he want you to take the Pred.? Getting the sarcoid in remission is not secondary to the side effects or swelling of taking Pred. Remission should be your primary goal and I'm not sure you can do it without steroids used in the prescribed manner. Sarcoidosis long term will cause you more problems than a heavy dose of steroids and tapering will. I know that each of us has to do what we feel is best for our bodies but the long term effects of Sarcoidosis is pretty daunting. I know because my father never had remission with his. Have you been on antibiotic therapy along with the initial run of Pred. Lindy
Michele, I'm so sorry for what you've been going through. To have to deal with a doctor who is total jerk makes everything more difficult. Why on earth would you make up such a trying disease? Is that doctor nuts? Of course you know a lot about it. You've been living with it for a long time. Give me a break! At least your personal doctor seems to have your back. But Lin has given you the benefit of her own experience with the same disease. If I were you I'd talk to the doctor about trying the therapy that was so successful for her. You can't keep going on this way. You've been through too much already. Please keep us posted on how you're doing. I did do high dose steroids over a year ago and than tapered down to a low dose and stayed there for over a year. My pulmonologist seems to think that the remicaid will work given enough time. My adrenal glands still haven't recovered from the last go around with steroids but if after the next couple of treatments, things don't improve, I am sure I will agree to the steroids again. The sarc has spread to my eyes, liver, kidney, joints, lungs and heart so we need to get it calmed down but I have read that when it has progressed this far for so long, its very hard to obtain remission.I didn't pick up in your previous posts that you had tried high dose steroids, sorry for preaching to you but I wanted to make sure I covered all the bases. I have lazy adrenals also and I have to stay on 7.5 mg. of Pred. everyday, probably for the rest of my life. If I don't I'm so sick and fatigued that I can get out of bed. If you're not taking 7.5 mg. a day and if your adrenals aren't working then you'll have extreme fatigue, nausea, emotional and cognitive issues. Your body makes approx. 7.5 mg. of steroid a day. We need that amount to live. If your adrenals are sluggish or have stopped producing then you need to supplement with Pred. It takes about 4 days for me to start feeling normal if I get too low on steroids. I've tried to taper off several times and almost ended up in the hospital one time. I'm not saying that this is what's wrong but it could be contributing. Take care. Lindy