Oxogen therpy

[dawncelest]

Hello all :) is anyone else on oxygen especially during a flare? ? I have some nodules and thickening in my lower right lobe with chronic dry cough (interstitial lung disease ). When im flaring (ever couple of weeks) my lung and airway vasculits just swells up and breathing is too painful and almost impossible. . My 02 levels don't go too far down maybe in the mid 80s but it's low enough to not get oxygen going to my brain and it definitely causes problems. So far cytoxin, methotrexate and cellcept has helped take the sting out of breathing for a little bit maybe a few weeks but the inflammation always creeps back in. my rhuemy doesn't keep me on these drugs long because they don't help the destruction of my cartilage from the relapsing polycondritus and its really aggressive. I ended up disabled very fast . going for my 3rd rituxan infusion tomorrow (still on cellcept ) and so far my airways opened up enough to get off my oxogen tank a couple of days ago but i still have a sting and pain when breathing .. still hopefully the rituxan cellcept combo will kick in and chill all my inflammation soon :)

[Pete]

Hope these drugs do the job for you. Does your drug regimen include any anti-inflammatories such as prednisone? If so, what is your dosage?

[dawncelest]

I have severe gastritis /mucosal inflammation and erosion in my upper stomach so i absolutely can't take oral steroids. It feels like iv swallowed razor blades :/ . my drs and figured out early on when i started getting sick a few years ago that steroids and even biologics didn't help enough even at higher doses it didn't help enough so i was put on immunosuppressives with a betterish result. We tried IV and injection steroids (hurts sooo much ) at 100 mlgs a few times a week for a few months but it still wasn't enough to keep me out of a flare . I had a bone density scan in the beginning of last year because my cartilage was disappearing so fast and i started having partial dislocations in my shoulders and left knee cap. It showed i have osteoporosis in my hips with osteopina everywhere else so i definitely shouldn't be on steroids now. Again im only 35 now . My Dr's just say that RP is a very aggressive and a hard to treat disease and having overlapping WG and lupus just makes it more difficult to manage. Fortunately my specialist are at University of Miami . Its a great teaching hospital and i have a lot of faith in them and am trying my best to stay positive though out all this craziness.

[Debbie C]

Pred is also giving me problems with my esphosagus (sp) and stomach, I have since been on 40mg protonix and a take a strong probiatic every day and this seems to have helped. They need to find something you can take for the inflammation.I just had a bad cronic cough and the meds they gave me I couldn't take and I happened to find a homeopathic cough syrup with honey, called Chestal And it worked wonders...used it twice and my cough was about gone the next day. It is all natural and has no drug interactions. Good luck to you ,I hope that the can the infusions work although they will take awhile to kick in

[annekat]

That stuff sounds worth a try, Deb. I don't understand how homeopathic medicines work, but the online reviews were very good, and I see it is available at Walgreens, where I get my meds, if not in the store, at least online, and I might try Super Supplements, too. It would seem like a miracle if it could help my nagging Weggie cough.

[Debbie C]

Yea Anne definately give it a try.The one with honey is really good.Tastes good and coates your throat.

[drz]

Yea Anne definately give it a try.The one with honey is really good.Tastes good and coates your throat.

Honey is often recommended to help reduce coughing. Usually it is added to warm tea or other hot drink.

[annekat]

Honey is often recommended to help reduce coughing. Usually it is added to warm tea or other hot drink. I do use honey in tea. I'll have to pay more attention to whether it seems to help my cough. I'm sure it must.

[dawncelest]

My cough never responded to cough medicine. .so a couple of years ago when it really became chronic ,loud and dry i told my rhuemy and pulmanologist how no suppressant would help .They both said it was from the interstitial lung disease ( thickening, mild scaring and nodules ) and vasculits. Sometimes it's way worse than others like when im in a full blown flare ever few weeks.

[Dirty Don]

I live on Ricola, sugarless, drops. Keeps the throat coated and the mucous flowing! Sheesh...

[Alysia]

Hello all :) is anyone else on oxygen especially during a flare? ? I have some nodules and thickening in my lower right lobe with chronic dry cough (interstitial lung disease ). When im flaring (ever couple of weeks) my lung and airway vasculits just swells up and breathing is too painful and almost impossible. . My 02 levels don't go too far down maybe in the mid 80s but it's low enough to not get oxygen going to my brain and it definitely causes problems. So far cytoxin, methotrexate and cellcept has helped take the sting out of breathing for a little bit maybe a few weeks but the inflammation always creeps back in. my rhuemy doesn't keep me on these drugs long because they don't help the destruction of my cartilage from the relapsing polycondritus and its really aggressive. I ended up disabled very fast . going for my 3rd rituxan infusion tomorrow (still on cellcept ) and so far my airways opened up enough to get off my oxogen tank a couple of days ago but i still have a sting and pain when breathing .. still hopefully the rituxan cellcept combo will kick in and chill all my inflammation soon :)

what I learned when my beautiful Phil was in the hospital is that if your sats are going below 85 then you need to be on oxygen.