Wegener's (GP)

[LouIeJA]

I got diagnosed last year with GP after finally crashing and ending up in the ER. I had several signs prior to the crash like burning feelings in my joints/ arthritis type pain in my hands and some sinus issues and also the continues coughing until finally I started coughing up some blood. I was in the hospital for 8 weeks and on daily oxygen for my lungs and dialysis and blood plasma transfers because my kidneys had almost completely shut down.

I've been getting a little better after about a year of treatments. However lately as I've been coming off the Prednisone I started getting a cough that comes and goes, been going on now for about 4 weeks. Was wondering if anyone else with GP is experiencing this same problem and what their doing about it or taking to help stop this cough?

In addition if anyone needs some advice on this disease. I have no problems shading my experience from the beginning and up to this point with you.

Thanks for any additional advice.

[DevonLottie]

Hi. I have gpa (diagnosed 17 years ago) and have experienced coughing up blood, although the cough went with initial treatment. You don't say what level of prednisolone you are on or how quickly you are tapering. It may be that you are tapering too quickly and need to take a slower approach? Have you discussed your cough with your consultant? I'd recommend you do as any changes should be reported. Best wishes Charlotte

[LouIeJA in reply to DevonLottie]

I think your correct, It was a slow tapering of the prednisone and I might just be dealing with. My PLLC gave me an inhaler to use for awhile, thinks that might help.?

[DevonLottie in reply to LouIeJA]

Maybe. Have you been given a new regime for tapering the pred?

[LouIeJA in reply to DevonLottie]

Yes, I just came of after 10 months of taking the Prednisone.

[Omil04]

Hi lauieja. I too suffer from GPA, and like you had cough ect. Had also flare up not long after the treatment chem ect. Stomach bloated. Had appointment last week with my consultant who I have faith in. His view was that the prednisone was reduced too quickly, and thought that the Azathrioprine has not fully kick in yet , possibly will take 3 mths. I also have urine infection due to drugs, antibiotics to take for a 3mths. How ever all is good and learning all the time regarding this condition. Hope you get sorted soon . Keep going and be positive. Kindest regards Lorraine.

[LouIeJA in reply to Omil04]

I think your correct, It was a slow tapering of the prednisone and I might just be dealing with that issue as it relates to the cough. My PLLC gave me an inhaler to use for awhile, thinks that might help?

Going in for surgery next week for ear tubes and deviated septum. I'm hoping that will help with the fluids in my sinus track. Amways feel like I'm walking around with swimmers ear, like a bucket is over my head. Driving me crazy!

[LouIeJA in reply to Omil04]

I've never had the Azathioprine for my GPA?

[Suzym2u Moderator Vasculitis UK]

John was diagnosed over 16 years ago with GPA and was diagnosed 6 weeks after coughing up a great deal of blood, lost the use of his legs and suffered incredible mouth ulcers. With hindsight he had probably had the GPA (WG) creeping on for about 2 years before- stiff joints, blocked sinuses and headaches. As Devon Lottie asks you don't say what level of prednisolone you are taking or what other drugs you are taking to control the GPA. Or what initial drug you were given when you were in hospital.

Any new symptoms or reoccurring symptoms should always be investigated.

[LouIeJA in reply to Suzym2u]

I had exactly those same similar symptoms that you noted for like 2 years also before coughing up the blood and hardly being able to breath, also had a real bad mouth ulcer and bad ear aches.

After getting out of the hospital I was placed on cyclophosphamide, prednisolone, Rituximab Infusions and an antibiotic called dapsone.

I came off the cyclophosphamide after like 3 months, I was slowly taken off the prednisone, decreases every month and I just finished my last dose about two days ago. I'm still getter ngcthe Rituxian Infusion about every three/four months. And still taking the Dapsone Antibiotics.