New member from Scotland

[Chas]

Hi, My name is Chas from Renfrew, Scotland
I was diagnosed via kidney biopsy two weeks ago after hospital admission with vegeners after experiencing joint/muscle pains on and off for six months and three months of hearing loss(100% in left and 80% in right ear). I have been prescribed Prednisolene 60mg, Cyclophosphamide 150mg and Co - trimoxazole 480mg for two weeks now. Joint/muscle pain has abated quickly and my hearing loss has improved already by about 50% in each ear.
Docs have told me that depending in how my body reacts I could be on the drugs for up to two years.
I am just starting to accept all this but I would appreciate any advice on the treatment and what to look out for concerning any new symptoms and side effects I could experience.

Thanks
Chas.

[elephant]

I know you should not be on Cytoxan for two years. Most Wegener specialist only want you on Cytoxan for 3-6 months then they will put you on a lesser immunosuppressant drug ( Cellcept, Imuran, methotrexate) for about two years. They try to reduce the prednisone usually after 6 months.

[Terri]

Hi Chas,
Sorry you had to find us, but I am glad you did. You will find many answers here from people who have experienced so many different things with wegener's. Some more severe, all the same our regime of meds seem to be about the same at one time or other. Pred, cytoxan, bactrim, then pred, imuran or methotrexate,.......it varies but most drs say 6 months with cytoxan. You will be one of the fortunate if you get off the meds in two years but it can happen. I'm going on 3.5 yrs and still take pred, methotexate and bactrim.
Be fore warned.....the first question to you will be Are you seeing a wegener's specialist?
Keep us posted as to how you are doing and don't be afraid to ask anything.

[Jack]

Welcome to the forum.

Two years to drug free remission is a good target, but there are so many variations between patient outcomes that you have to be prepared for anything. If you were diagnosed before any major damage occurred and you now receive the sort of careful monitoring that will prevent it from happening, then it is a realistic possibility. Bear in mind that the progress of the disease is in no way predictable and your road to recovery will undoubtedly run into a few problems. Most of these can be overcome with good treatment and there is always plenty of advice to be had from these pages.

[DEE]

Hi Chas
Like Jack says it can be a bumpy road for some my advice would be take it one day at a time. DEE x

[Sangye]

Hi Chas, welcome to the group. I agree with the others. You shouldn't be on the same drugs for 2 years, but there's a good chance you'll be on others.

[Wee Gerry]

Hi Chris, my name is Gerry. I stay across the river from you in Old Kilpatrick. I was diagnosed in December 2009 and get my treatment at the Western Infirmary and Gartnaveel General. I have had to be admitted to hospital a few times for extra treatment, IV Prednisilone, when my tablet dosage was reduced and all of my aches and pains returned with a vengeance. You should let your doctor know of any recurrence or new symptoms ASAP. Of all the forums I have seen on the Internet i must say this is the best to be on. You should be able to find anything you will need to know and if not the memberrs will certainly help if they can.
Hope all goes well for you.

Wee Gerry

[Hal]

Did you see an Ear-Nose-Throat specialist (ENT) regarding your hearing? When my hearing went it was among the first signs of Wegs, along with the coming-and-going joint pain. I ended up having to get a stent/drain in ear ear to clear them out (literally takes minutes to do in each ear), along with sinus surgery to remove the buildup of polyps. Perhaps you should consider seeng an ENT doctor as well if you have not already done so, just to be safe.

I agree with the others regarding the drugs. I am in Month Five of Cytoxan, looking forward to getting off that drug in weeks if everything goes OK, with a gradual switch to an immunsuppressant for another two years.

Take care of yourself and try and see specialists as required.

[ian anderson]

hi chas im ian from ayrshire ive had wg for 16yrs now and a heap load of probs but im still fightin, im getting iv cyclophosphomide right now andim on all kinds of pills had trachea stenosis 3 dilations, heart attack with stent fitted. weight went up 5 stone with steroids, lol but still here chas so take heart youll be fine if you want any help let me know, kind regards Ian

[Chas]

Hi Hal,

Thanks for your reply, I really appreciate any advice and info I can get. I have been seeing an ENT specialist since mid-December after my hearing had deteriorated since October. He orginally diagnosed me with fluid build up in inner ear(glue ear) causing deafness. After inserting grommets in each ear(dont know if they are the same as a stent/drain) my hearing actually became worse, lost hearing completely in left ear and about 80% in right ear. It wasn't until three weeks ago that my joint and muscle pains returned which I had not had for over six months that he suggested I be tested for Wegeners. I tested positive via a kidney biopsy. As I said in original post since starting the medication my hearing has improved. Can I ask you how long you had the hearing problem and has yours returned to normal yet?

Regards
Chas