Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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tinaunger50
tinaunger50
you all know, I started a few months back on 40 mgs of pred, due to my lung issues. after a month, I went to 30 and last wednesday a fill in dr said I sounded clear of the pneumonia and put me down to 20. well 2 days ago..I started coughing again and today Im already crackling and harder to breathe, feeling crappy again. I go see my regular pulmonoligist today(hes back from vacation) so Im sure Ill have to start all over again. my question is this...do you all think the fill in dr brought me down too fast? it was only one and a half weeks on 30 mgs. Im really praying I get good results again with getting rid of the inflammation. if the pred dont work, Im doomed. this really stinks.. also I went to the eye dr last week for my field test from the plaquenel. the very rare problem with build up behind the eyes? well Ive got that too, gotta go for extensive tests in 3 weeks due to that. and no treatment for Ra at all now.its never ending with this disease!! prayers please. hugs to you all Tina
bcatz
bcatz
Tina, I'm so sorry you are dealing with this.
So, your lungs need the prednisone to stay clear otherwise, they are inflamming and allowing fluid to build up, right?

I bet you could have dropped to a lower dose slower and found an amount that was still effective by going slower. Like dropping just 2mg each week. I'm no doctor but it must have been enough of a drop to stop your lungs from working right. Maybe you will have to be on prednisone for a much longer time, but taper super slow??

As for your eyes, the damage is supposed to be seen quickly and stopped before anything permanent (hydroxychloroquine retinopathy is what it's called) can establish. I read that it can take a full year after quitting for the final impact to be seen so it's good that you stopped taking it.

I will absolutely keep you on my prayer list.
deleted_user
deleted_user
Do you have a diagnosis for the lungs? Is it asthma, or Rheumatoid lung disease? Standard protocol is 5 days on 40 mg and then stop. So you were on a long time.

I had this issue for years. It preceded RA. I had periphery lung disease, a small airway passage asthma. No one really knew what it was, I was just constantly coughing up junk. I still do, but just tiny bits.

Did you try antibiotics? If you are not allergic, try doxcycline. That was recommended by a friend of mine who is a nurse, and it always works.

I did allergy shots for 7 years, which helped but probably triggered RA. I am pretty sure I have Rheumatoid Lung Disease now. Going to see my rheumy this week to find out.

Hope you feel better soon. Prayers for sure!
ncgranny62
ncgranny62
Prayers are sent and more on the way! So sorry that you are having these problems, Tina. You sound like me. A drug takes care of one thing and causes another. After 6 months of prednisone, I am now down to 12.5 mgs for the next 2 weeks, then 10 mgs for 2 weeks, and then down 1 mg each 2 weeks. Long, slow taper.

Sounds like you need your prednisone dose upped for a while to get your lungs working right and then when the time is right, a long, slow taper off the prednisone.

Hugs and prayers for a speedy recovery.
lycesq
lycesq
My rheumy is very careful at tapering off. I'm no doctor but a l0 mg. drop seems like too much at one time.

Hugs to you and I hope you feel better soon.
Angelpuss
Angelpuss
Tina, I wish this hadn't happened on top of everything else.
10mg is a big drop and it would seem that your lungs need a higher dose to function.I tapered off Prednisone very slowly.
I hope that your Pulmonologist has sorted this out for you.
Sending love and hugs
sandi7213
sandi7213
wishing you the best.

I have asthma along with the RA, plus I'll get acid reflux that backs into my lungs.
Lung issues are not fun..

So best of luck I hope you can get some relief
tinaunger50
tinaunger50
thank you all for your help and prayers. I seen my regular Pulm dr yesterday and you all are right, it was too big of a drop at once. he said the other dr dident know the extent of my condition...so he bumped me up to 25 mgs and put me on an antibiotic called levofloxacin. and back on breathing treatments 4 times a day !! I do feel better mentally today knowing that my dr seemed optimistic that the fluid go away by monday when I see him again. sometimes its so hard to push through the issues that arise with this disease. instead of looking ahead for better days...I need to learn to take one day at a time. wishing you all a blessed day ! and thank you again!!