Out of breath

Any advice I would appreciate. I've had sarcoid for 3 years, no meds, CT scan every 6 mths. No change, better or worse. Finger oxygen meter is always 98/99 percent. I also have sleep apnea and recently restless leg syndrome. Now I have been so tired, difficult breathing Like I am always out of breath. When for PFT today but won't have results for 3 days. asked doctor for something as I feel like I can't catch my breath. I gor prescription for Prednisone 3@20mg a day... I am nervous but if it will help me breath I will take it. Does sarcoid cause shortness of breath but oxygen levels ok..... Does anyone have these same issues... Thanks...

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My first sign, before they found out it was sarcoidosis, was shortness of breath...it was because I was in complete heart block, no electrical signal getting through...blood pressure and blood oxygen were perfectly normal...heart rate 48 and dropping.

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Bob65,

Did your doctor have you do a "6 minute walk" and or did he just check your oxygen levels while sitting down? My O2 levels are also great just sitting, but as soon as I start walking, they drop to 80.

Someone else in another post had suggested purchasing a pulse oximeter yourself and monitoring your O2 levels. Then you will have some actual figures to give your doctor. (you can purchase one on Amazon.com for about $30.00)

I felt like a real "hypochondriac" when I first purchased one, but I was able to get a much better grasp on what was happening with my breathing. It helps give me a better idea of which medications are helping my breathing.

Best wishes and please let us know when you get the results of your PFT's.

karen

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My first sign--thought I had Bronchitis.
I had the cough and the shortness of breath but it did not go away with normal meds.
X-ray indicated a mass in righ lung area.
Biopsy indicated sacroidosis.
CT scan showed the granulomas and inflamed lymph nodes.
Started on Prednisone 80 mg a day for 6 weeks and then to 40 mg. and inhalers--Symbicort and Combivent.
O2 sensor shows around 93 sitting down.
I can sit there and take deep breaths amd get it up to 95.
Problem is at night if falls to 88 at times.
I have the Prednisone down to 15 mg a day now after a year of being at 40 mg. a day.
I could finally sleep again after getting it down to 30 mg.
I think doc confused sleep anea with prednisone side affects for me.
I know the prednisone made the sleep issue worse for sure!!

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Does your shortness of breath happen when you are sitting still or when you are moving about?

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The first time I was struck, in 1988, I had the bronchitis type symptoms with the sarcoid cough/choke. I would get SOB but not bad like I do now. My oximeter reading is 100% so I don't understand why my limbs feel so heavy and I'm so exhausted. I used to walk 6-8 miles but can't make it across the parking lot any more. I was given a special spot in the visitors parking lot right by the door at work so it only takes me about 20 minutes to recoup instead of an hour. I'm not sure if I understood this correctly but my lung capacity was at 73% of what a woman my age and size would be. Then, how come I still measure 100% on the oximeter???

When it first started getting bad a couple of months ago, we thought that it was cardiac (congestive heart failure) because there were other symptoms of edema, pressure in chest, etc. I went to the ER on a really bad day (2 weeks ago) but the "doctor" was a jerk. He actually said, "I don't know why you came here. You should have just called your cardiologist. I'm going to have to do that anyway." I was humiliated! I had never been to an ER before and it took a lot out of me to go then, especially with a $100 co-pay! He said that "it all looks good on paper". He must not have even looked at my chest x-ray because my new pulmonologist saw the sarc within seconds.

I go for a sleep study tonight. I'm not looking forward to having somebody watch me when I sleep. I have old "issues".

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Thanks for all the replies... I always have my levels at 100 percent (98/99). Even when running on a treadmill but I am... ( I did purchase the oximeter at amazon and test all the time. I also have sleep Apena but if i use the CPAP or not I still feel tired / same. After 3 years the CT scan showed the granulomas and inflamed lymph nodes staying the same, not going away not getting better.. Just the same. I did start the Prednisone this morning 3 pills of 20mg.. I assume to take all 3 at once and I now can breath easier. Is this bad? does this mean I have to keep taking this medication, I am afraid of the side affects but so happy I can breath a little easier now... I wonder what my PFT will results will show. After 3 years of Sarcoid I start having issues, dont understand....

Thanks for all the support and listen to me ramble...
Bob

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Hi Bob
Ben here from Belgium. Have you ever tried natural products which will help get the inflammation down? At this moment I am taking 4 pills of longvita curcumin a day and 2 tablespoons of mangosteen juice.
In december-january, just after having a knee operation and wanting to go jogging again, I noticed I was having some problems with breathing, as if I only had 1 lung instead of 2. I used to go jogging once a week and then 5-6 kilometers without problems, but now i can't even get 1-2 kilometers done. So I'll just have to accept it. And being 61 doesn't make things easier does it.
Good luck and take care.
Ben

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When I am short of breath, my pulse oximeter is typically 98/99, unless I try to walk any distance. The doctor just kept giving me prednisone and antibiotics. I finally got so short of breath that my 16 year old daughter called 911, they admitted me but didn't understand why I felt short of breath, my pulse oximeter at that time was 92%, on oxygen, continuous breathing treatment and started IV salmeterol. They discharged me after three days of IV antibiotics, salmeterol and oxygen, I was still short of breath, but my pulse oximeter was okay. I saw my regular doctor two days later and he wouldn't let me leave, admitted me to the hospital, he said there is definitely something wrong even though mypulse oximeter was 94%. They decided that I have bronchiectasis. They referred me to the pulmonologist who now questions if I have a different auto immune disease. I also sleep with a BIPAP and never feel rested and always fatigued, my pressures are the highest they can be on a BIPAP. Went back to my regular doc for a recheck, short of breath again and he said that I needed to be back on prednisone and weaned slowly and left on a low dose. I didn't believe him, but it does seem to have helped. I give up on trying to get the correct diagnosis, medicine or help.

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continue with prednisone u need it pul sarc does cause sob pred will help side effects can be counteracted with other meds I have to take benadrly 50mg to sleep and low dose xanax0.25mg to counteract the constant fleeting thoughts but pred does help.my sats are good at rest but go down with activity I am going to see cardiologist to see if I have heart involvement. Keep coming back to this site good info and get the free pamplet on sarc and your body

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Karen,
Thanks for the info concerning the O2 meter - It would sure give me better piece of mind. I have laryngeal sarc and have had a trach in the past - I can compensate for my narrow airway most of the time... but when I get fatigued in the evening I can't pull air through as well and I get really short of breath. It is embarrassing to go to the ER though - SaO2 is always in the 90's - so they look at me like 'Why are you wasting our time?" I think the more information we can gather on our condition the better! I will look and order one tonight!

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