I've just been told I have serious inflammation in my lungs from primary sjogrens. The doctor from john hopkins wants to put me on 30 prednisone for 2 months then recheck the lungs then taper off slowly for 4 months if getting better. He also said I would need to be on an antibiiotic to make sure I don't get a kind of pnemonia that prednisone can cause. Anyone diagnosed with similar problems? Thanks.
This is sadly one of the more frustrating and all to common symptoms of SICCA. Fortunately docs have a lot of experience treating it and most folks get on pretty normally.
If you have not been on Predi before, there are a few things you can do to make that go better. Most of us have found that taking it early in the day doesn't interrupt sleep patterns as much. I prefer (or at least my wife, staff, and students prefer) to take 20 in the morning and 10 around noon. (Check with your doctor of course) I'm a wee bit less owly. I also find if I take some quiet time a couple times a day for 10 - 15 minutes just to clear my mind and pray/meditate things are better for everybody. You need to keep your adrenals active as the Predi is telling them to stop working. Aerobic exercise daily now will make that taper a whole lot easier later on. As will drinking a ton of water if you are not getting up during the night or there is the tiniest bit of color to your urine, you are not drinking enough.
Check your weight DAILY and respond immediately. Its not uncommon to put on a pound a day. Exercise and count calories. There are a number of good apps to help you do so
I assume your doc has checked your Mineral levels especially calcium but ALL of us with Sicca need to watch our calcium intake. Calcium really gets Sarcoidosis rocking and rolling.
That mouth dryness that comes with SS is the cause of Sarcoidosis. We need to do everything in our power to control it. Gum, sour candy, biotene, water intake, humidifiers, mist, ultrasonic treatments etc etc I even had a doc tell me to keep a smooth stone in my mouth (its an old army ranger trick too) when doing anything physical. All those little things add up. All the little tricks to avoid acid reflux help as well.
Good luck
What are the symptoms when Primary SS is affecting the lungs?
The primary symptom is a dry cough and maybe a shortness of breath. In a physical exam, it is virtually identical to a "smokers cough" consequently it has been tough to "study" because there are so many smokers in the SS population. So estimates vary widely as just how many have it. When you "listen" you will here a constriction (sort of a whoosh) in the area of the airway epithelia. Also when he tells you to "breath out" he will hear close to 50% less than what he hears when "Take a deep breath"
Its pretty treatable in non smokers. Smokers on the other hand are pretty much screwed longer term if they don't stop.
Thank you, TJ! I get days where I can't get a deep breath in so I was wondering if it could be related to SS. It lasts 2-3 days, sometimes longer, but then I'm ok again for awhile. Never mentioned it to the doctor. I thought it was just air quality -- which is could be since I live in a large city.
tj1 said:
The primary symptom is a dry cough and maybe a shortness of breath. In a physical exam, it is virtually identical to a "smokers cough" consequently it has been tough to "study" because there are so many smokers in the SS population. So estimates vary widely as just how many have it. When you "listen" you will here a constriction (sort of a whoosh) in the area of the airway epithelia. Also when he tells you to "breath out" he will hear much less than when "Take a deep breath"
Its pretty treatable in non smokers. Smokers on the other hand are pretty much screwed longer term if they don't stop.
They constantly try to impress on the students and residents there is rarely if EVER a time when they should have a patient contact and not take a listen. That stethoscope is an extension of them and singularly the most important tools. In this day of evidence based practice, some of these guys are missing critical skills. You can almost tell how "good" a doc is by how they use/wear their stethoscope
Thanks for letting me know that, TJ. My last doctor, who I went to only 2-3 times, and had since left her practice, never picked up that stethoscope to listen to my chest. I had a hunch she was a lazy doctor and I guess that proves it.
tj1 said:
They constantly try to impress on the students and residents there is rarely if EVER a time when they should have a patient contact and not take a listen. That stethoscope is an extension of them and singularly the most important tools. In this day of evidence based practice, some of these guys are missing critical skills. You can almost tell how "good" a doc is by how they use/wear their stethoscope
Just opened this e-mail upon return from Rheumatologist who has just confirmed both Rheumatoid Arthritis, Poly arthritis and sjogrens.
My lungs were very bad today and I asked for an inhaler allbluterol. Last time down with this; it helped some. Mine is ocurring now because people in the mountains of West Virginia where I know live need to burn wood and make smoke this time of year. It hurts.
He prescribed prednisone; but (2) 10 mg tabs twice a day for three days each week. I hope I don't have too much trouble with this, the weight thing is scary tho because I take 1200 mg gabapentin also.
good luck to all of us, sabra
I'm reading all of this and can't believe it. I've had a cough forever. Does sound like smoker's cough. People in work will ask if I'm sick. Also have constant mucus. No saliva, just mucus. If I don't take Nexium daily the reflux is awful.
I've only seem my Rheumy once since I was diagnosed. I go back in January. He did listen to my lungs, but said nothing about it. I'll ask when I return.
I'm now on generic Placquenil. Can't say I've noticed a big difference. Perhaps a bit more energy, but not daily. What is the standard dose? I'm on 1 1/2, 200mg tab daily. Been on it for about one month.
Thank you all for listening, and your advice. It means so much to all of us.
I didn't have hardly any symptoms just a cough when I lay down. The doctor acted like my lungs were quite serious. Don't get how that can be without serious symptoms. Drygirl
DLT88 said:
What are the symptoms when Primary SS is affecting the lungs?
Thanks, I agree. My primary doctor has NEVER listened to my chest or looked in my ears, etc. He sits with his computer and talks. I'm switching to a internal meds doctor as soon as I can get in, but stuck for now. Any hints on controlling highBP if I can't take any of the meds? Thanks so much. Drygirl
tj1 said:
They constantly try to impress on the students and residents there is rarely if EVER a time when they should have a patient contact and not take a listen. That stethoscope is an extension of them and singularly the most important tools. In this day of evidence based practice, some of these guys are missing critical skills. You can almost tell how "good" a doc is by how they use/wear their stethoscope
That's exactly what my doc did, too, Drygirl!
I have a cousin who has RA and had high bp and was put on meds. But, at her request, the doc let her try out taking Omega 3's (Ovega 3's in her case since she was a vegan) for 2 weeks to see how that went. After the 2 weeks, her BP was normal so the doc said she could stay off the meds and stay on the Omega 3's and they'd keep checking in. She's been fine that way for quite awhile now.
drygirl said:
Thanks, I agree. My primary doctor has NEVER listened to my chest or looked in my ears, etc. He sits with his computer and talks. I'm switching to a internal meds doctor as soon as I can get in, but stuck for now. Any hints on controlling highBP if I can't take any of the meds? Thanks so much. Drygirl
tj1 said:They constantly try to impress on the students and residents there is rarely if EVER a time when they should have a patient contact and not take a listen. That stethoscope is an extension of them and singularly the most important tools. In this day of evidence based practice, some of these guys are missing critical skills. You can almost tell how "good" a doc is by how they use/wear their stethoscope
How much Omega 3 does your cousin take?
drygirl said:
I didn't have hardly any symptoms just a cough when I lay down. The doctor acted like my lungs were quite serious. Don't get how that can be without serious symptoms. Drygirl
DLT88 said:What are the symptoms when Primary SS is affecting the lungs?
She didn't specify, but I think she just followed the recommended dosage on the box.
drygirl said:
How much Omega 3 does your cousin take?
drygirl said:I didn't have hardly any symptoms just a cough when I lay down. The doctor acted like my lungs were quite serious. Don't get how that can be without serious symptoms. Drygirl
DLT88 said:What are the symptoms when Primary SS is affecting the lungs?
I had the same thing happen to me. Mine was caused by a reaction to methotextrate. It was serious. I had more than a bad cough. I would cough so hard I would choke. I was referred to a pulmonary doctor who promptly put me in the hospital. I was treated with IV steroids and antibiotics. They put me on 40 mg of prednisone for 2 months and then tapered off. I put on 18lbs in 3 weeks. I hate prednisone. As I tapered off they gave me Rituximab IV infusions which should last about 6 months. It didn't for me. Now I'm on Humira and doing fairly well.
This is just my opinion but there are other anti-inflammatories that are better and work faster than heavy doses of prednisone. Even getting a steroid shot is better than being on prednisone. Doctors don't think about drug interactions or side effects when prescribing for an ailment in a Sjogren's patient. The weight you put on when taking prednisone only makes it that much more difficult to breathe or work out. Plus they prescribe according to what the insurance companies dictate as a "step-up" method of drug treatments.
You have to tell your doctor that you want to explore all options before settling on prednisone. If he can't or won't list options like steroid shots or Rituximab treatment then I'd find another doctor.
I have had breathing problems since I was a child. All of the specialists said it wasn´t asthma but couldn´t come up with any alternative. My regular doctor gave me ventolin and I have been using it ever since...it is the only thing that helps. I was always prone to chest infections and even had whooping cough, but now at 38 and newly diagnosed with primary SS I am thinking that it has always been down to that, especially as I read that a viral infection such as whooping cough could trigger Sjogrens in the first place.
Just a quick note. Steroids are steroids whether by pill, injection, or IV. The weight gain is because of increased appetite, so long as you wstch what you eat, weight gain is not a given. The biologics take months to work, something you don't have with an acute condition.
This has happened to me before several times. I live on 10 mg daily now everyday as I can not taper any lower or I have breathing issues. During your taper, you will have side effects such as mood swings, stomach ache sweating and headaches so go slow to minimize side effects after being on so long. Your doctor will help if you get these let him know. Hang in there is will get better!