On medication but not doing well

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Hi and thanks for your posts,

I have been started on medication and have gone from being on steroids only ay 40mg - felt great on this- then Methotrexate was added and this started me off again. I am now on Mycofenalate Mofetil 750 mg twice a day and 30 mg of steroids along with a few other things and i am still getting constant ENT pain.

How long does it take before the right meds are established?

Can anyone advise?

Kazz

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9 Replies

  • Posted

    Hi Kazz

    I read your posting and sounds very like my own. Mainly ENT / sinuse problems. I was diagnosed 18 March 2010 and was started on 60mgs steroids then Azathioprine the Aza caused problems with my liver function so if was replaced with Mycophenolate Mofteil. i have now reduced the steroid slowly to 10mgs and am on 1g twice a day of Mycopeholate and have had no adverse effects. My sinuses / ENT problems improved whilst i was on the high steroid alone but due to side effects it must be reduced and to reduce it you need to have the other immuno-suppresiive agent ie: Mycophenolate. Ive been medicated in total now for 6 months and ANCA blood test show Im in \"remission!\". I do however still suffer from recurrent sinus infections, bunged nose etc and have alot of crusts in my nose to help relieve this i use the NeilMEd sinus rince kit available from Boots which does give some relief. My joint pains have settled, I still get snail like pattern lesions on my tongue but apparently things going the right way and I am tolerating the medicationwell to date. So fingers crossed I get on top of this. Hope the meds work for you. How you feeling at present?

    Tracey

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  • Posted

    Hi Tracey

    I have just read your message to Kazz. Your treatment has been similar to mine, but I have been prescribed Betamethasone drops for my nasal problems, which were similar to yours, but have now cleared up. I have been using the drops since June last year and the consultants want me to continue, as with the other medication. My wife inserts four drops in each nostril every morning and night - you cannot administer the drops satisfactorily on your own. You could ask your doctor to give it a try!

    Regards - Mo Grant

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  • Posted

    Hi Mo

    Thank you for that information I will relay to my Doctor. I have read your posts over a period of time and find your posts all very interesting, you really a remarkable man given all you have come through and still remain postive I have thought about writing toyou for a while. Yes I noticed you were one of the few on Cellcept, i had to go on it as the Azathioprine cause my liver function to be deranged so far the Cellcept has been agreeing with me.

    I hope you continue to do well. I will enquire about the drops. Do you have much nasal problems? that with lesions on my tongue, joint pains and protein in my urine were my main findings, i do suffer alot from sinusitis. Emotionally, the diagnosis completely floored my as Im only 33 and 2 young children but i am improving emotionally. Thank God

    Tracey

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  • Posted

    Hi Tracey

    Many thanks for your message. Initially, I was on azathioprine but it made me feel so ill that the consultant put me on Cellcept about 9 months ago and this medicine has no adverse effect upon me, except that I tire very easily. Some people say the tiredness is because of my age, but before I contracted this wretched disease, I was very active, walking, swimming, doing major jobs in the garden and house. In fact I only sold my yacht a few years ago and I used to sail this thousands of miles each year and I was commodore of our sailing association for four years, ending in 2003!

    During my treatment and just before I entered hospital, my nose was in a terrible mess, with bloody discharges and lots of crusting. When I was in hospital, the WG consultants sent me to see the 'in-house' ENT consultant. He put a camera up both of my nostrils and said 'what a mess'! He was amazed that the other consultants had not taked a biopsy here, instead, they did this on my right kidney. Anyway, the ENT consultant prescribed the drops and the nose condition cleared up in no time. I only suffer from the occasional runny nose, which responds well to anti-histamine tablets.

    In the past, I had three operations for the removal nasal polypi, so I have always had trouble here. The hospital consultants for WG think it started in my nasal passages, so I take particular care. One interesting development was that I saw and ENT consultant at our local hospital during 2006, as I was having a little trouble with nasal blockages. He did a scan of my nose and sinuses and discovered that I had a hole in my septum - one of the symptoms of advanced WG, but he did not make the connection as WG is so rare. In fact, my GP said mine was the only case they had heard of in over 30 years of the practice!

    I saw the hospital consultant on Wednesday this week and she told me that they are having great success in bringing WG under control. They find that once the drug combination brings the disease under control, a large number of patients are responding very well, but it is a long haul.

    Anyway, enough about me - and I hope the drops work if your doctor does decide to prescrbe them and I sincerely hope that you proceed to remission with your treatment.

    Best regards and sincerely - Mo

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  • Posted

    Hi Tracey,

    Thanks for your post and i am sorry to hear that are still sufferng with your nose also. My ENT consultant who i saw recently suggests using Sterimar daily which is a saline nasal wash. You can get this over the counter or from your gp.....i have been using this since he suggested it and i find that it helps greatly with the crusting and also with blockages and preventing infections. Don't know whether it will work for you but worth giving it a try.

    I went to see my renal and rheumatology consultants yesterday and they have now taken me off Mycophenalate as this is not working for me and have put me on a 3 month course of Cyclophosphamide. I was a bit in shock when then said this as this is only usually prescribed for people who have WG and kidney involvement. They said that even though no kidney involvement in my case this is the next step for me. I am still on my steroids at 30 mg and my Septrin and am now about to start vitamin D3 and calcium tablets. Hopefully this will work for me.

    The nasal symptoms do improve rapidly once they start and even though when i first wake i still suffer a little pain (only lasts for a hour) this is a great improvement so don't give up. If you want to get in touch my telephone please let me know.

    Kazz

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  • Posted

    Hi Mo and Kazz

    Thank you both for your very detailed replys it is a help to know there are people going through the same symptoms and emotions, the more i read the more confident I am becming that we can get on top of this dreaded WG at first all I could think about was dying as I had googled WG and it gave a very gloomey picture therefore it is good to speak to real people about their experiences.

    My diseae definitely seems to be worse in my nasal passages and sinuses on reflection i have suffered ENT problems for a long long time but it was only round Christmas things got really back and after several failed antibiotics a biosy was done and the WG confirmed, thankfully my kidneys have been spared to date as that and advanced lung involvment appear to be the most serious however are also known to respond well to treatment as I hpe we all do. Dear Kazz you seem to be having it rough getting your meds establised I was like that for a while Azathioprine and Methotexate were no good for me as they were causing me liver problems so Mycophenolate was the alternative Ive been on it 10 weeks now and having weekly bloods so far so good. Like you said the Cyclophosamide is only really used when the kidneys are involved its a shame the oters didnt work for as the side effects are much less toxic but whatever it takes to get this thing uner control has to be done, the steroid is good at controlling things but unfortunately has alot of side effects which is why the Docs like to get it reduced.

    Hopefully, we will aal get things under control and live as normal as posisble. The fatigue is often difficult with working full time and 2 kids but needs most. My huuby and family are very helpful are supportive and perhaps in a way we can also support one another.

    I would of course exchange tel numbers if anyine wanted to chat as opposed to type!! lol either why I amjust happy to have people to relate to who really know what its like to suffer from WG. i have aslo beenin touch with 2 others from this site, Mepper and Debbie Ley both who have aso been supportive.

    Regards,

    Tracey

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  • Posted

    Hi Tracey

    I have just read your latest posting and you seem to be thinking very positively and I'm glad that your husband is very supportive. That's a great help, as I have found with support from my wife. She has been so good, visiting me every day when I was in the hospitals and I don't know what I would have done without her.

    You a quite right about the steroids, I've come down from 60mg per day to 5mg per day, but I still have problems. The main difficulty has and is still, with my skin. it's become so thin that the slightest pressure causes a big red bruise, which takes a long time to disperse. And if I graze the skin, it bleeds profusively so I have to get a dressing on it straightaway. The consultants have said this will eventually clear up, when the steroid dose is reduced to a minimum and God know's when that will be.

    Tracey - still think positively, there is light at the end of the tunnel.

    Kindest regards - Mo

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  • Posted

    Hi Mo

    Thank you for your reply I didnt really go on the site alot but now find i am checking awaiting your replies, lol as I find them very comforting and reassuring. You are a great age, you and your wife obviosuly looked after each other very well. I cant imagine how your dealing with this disease given your age and also you history of malignancy, your attitude is uplifting, I hope I live as long as you, lol.

    I am feeling a lot more positive about things and more confident in the Medics getting on top of it.

    I hope you continue to do well and enjoy life. With regards to the drops I had previosuly been on Flixonase nasules which are similar to your drop think they are a topical steroid so the Doctor is going to issue them for me again as my nasal passages are still quite crusty and yucky. I have used Sterimar in the past but find the Neil Med does a better washout.

    Regards,

    Tracey.

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  • Posted

    Hi Tracey

    Many thanks for your reply to my recent posting and I sincerely hope the steroid drops work as it is essential, in my view, to get the nasal passages back to a healthy condition.

    Your comments to me are very flattering, especially about my age. As a matter of fact, until I developed Wegener's, I never thought of my age as a problem since I have always been active both mentally and physically. It's all in the mind!

    I firstly married in 1948, but my wife passed away in 1983. I re-married about a year later to a friend of many years, who had been widowed a few months before my wife died. Now, we have been wed for 27 years! About 3 months after we were married, I had the cancer in my right eye and now I have Wegener's, so my wife has had a lot to put up with, but she has never complained and is such a support for me.

    The things that I used to do before WG are gradually coming back like reading, doing cryptic crosswords, playing the piano and small DIY jobs in the house. We would like to go on a cruise, or holiday of some sort but this is not possible at the moment, due to hospital visits and me getting so tired. But I feel it in my bones that I will conquer WG.

    I hope my telling you all this helps you to feel positive, which is essential if you are going to win through, which I sure you will.

    Keep in there Tracey - kind regards - Mo

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