Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
Does anyone know whether taking prednisone will aggravate Sjogren's Syndrom by drying out the body more? In particular, the lung? I've been diagnosed with COPD and have been on a nebulizer 3 times/day as well as an inhaler once/day and I've heard that these things may add to the dryness of the lung. The breathing has become quite compromised and so a visit to my practitioner today resulted in a prescription for prednisone. I've not been diagnosed with Sjogren's yet but my daughter has been doing research and everything she finds seems to correlate with my present condition.
Has anyone in the NY metro area been diagnosed with SS and have a doctor they feel worthy of recommending? I need to see if I have the syndrome for sure and then work on treating my breathing issues with medicines that won't make the syndrome worse.
Many thanks,
Clever Canine
Has anyone in the NY metro area been diagnosed with SS and have a doctor they feel worthy of recommending? I need to see if I have the syndrome for sure and then work on treating my breathing issues with medicines that won't make the syndrome worse.
Many thanks,
Clever Canine
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I'm not aware that dryness is a side effect of Prednisone use. Medicinet.com says these are the usual side effects of using it:
SIDE EFFECTS: Stomach upset, headache, dizziness, trouble sleeping, or weight gain may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly. Tell your doctor immediately if any of these unlikely but serious side effects occur: black stools, bone pain (fracture), "coffee-ground" vomit, easy bruising/bleeding, heartburn, increased thirst and urination, irregular/fast/pounding heartbeat, menstrual period changes, mental/mood changes, muscle weakness/pain, persistent weight gain, puffy face, seizures, signs of infection (e.g., fever, persistent sore throat), slow-healing wounds, stomach/abdominal pain, swelling of the feet/ankles, thinning skin, trouble breathing, unusual hair growth, unusual skin growths, vision changes. A serious allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction include: rash, itching, swelling, severe dizziness, trouble breathing. If you notice other effects not listed above, contact your doctor or pharmacist.
Usually, the doctors now only give it to you to treat a flare (increase of symptoms) and then will taper you off of it as the effects of long term, high dosage usage can then be avoided. The most serious side effects are bone thinning (osteoporosis), cataracts, and weight gain.
It took me some time to totally taper off because I was on a higher dose for the 1st 2 yrs. I do now have osteopenia (thin bones but not thin enough to classify as osteopororis-YET!). I also have the beginning of cataracts, which are sooner than expected for my age.
If you do have an autoimmune condition such as Sjogren's Syndrome, they will most likely put you on Plaquenil as it is also a DMARD (disease-modifying antirheumatic drug) but does not have the side effects of Prednisone. You do have to have your eyes check 2 times a year if you take Plaquenil, but the odds of vision side effects of using Plaquenil are so rare that (in my opionion) they are worth it.
Also, if you are diagnosed with Sjogren's Syndrome, there are a couple of drugs available that will stimulate your body to make more moisture-Salagen & Evoxac. I started with Salagen and then changed to Evoxac when it became available.
Was your diagnosis of COPD related to smoking or something else? The reason I ask is that s lot of Sjogren's patients have lung involvement related to the Sjogrens. In my case, the lung biospy provided enough evidence to relate my Pulmonary Fibrosis to Sjogrens. The good news is that, with agressive treatment in beginning and ongoing treatment since, last October my pulmonologist declared my Pulmonary Fibrosis as "resolved". The previous 2 years he had said I was in remission, so I was delighted to know it is now considered GONE! I was also diagnosed with Asthma at the same time as Sjogren's & Pulmonary Fibrosis so I have to keep using Advair, Singulair & Combivent to keep it under control. My doc did say that the Pulmonary Fibrosis could recur so he will keep me on all the meds to prevent it from recurring.
As for doctors in New York that treat Sjogren's Syndrome, have you checked with the Sjogren's syndrome Foundation? Since they are located in Bethesda, MD, they might be able to refer you to a NY doctor who specializes in Sjogren's. I also believe there is a Sjogren's Clinic at the National Instutute of Health in the DC area. The foundation should be able to put you in touch with it too. The following is contact information for the Sjogren's Syndrome Foundation:
Sjgren's Syndrome Foundation
6707 Democracy Boulevard
Suite 325
Bethesda, MD 20817
Toll Free: (800) 475-6473
Local call: (301) 530-4420
Fax: (301) 530-4415
Good luck