Just been diagnosed with WG

Once again our friend \"Mo\" has delivered the goods and summed things up. lol. he was extremely ill and now feels remarkably better so no matter how bad i feel things get for me personally I reflect on Mo and Debbie and realise that things do get better!! Im 6 months into treatment and like Mo said you feel better within days but now 6 months on Im starting to feel a bit like my old self. So onwards and upwards as they say, best of luck and thanks Mo like i said before you are very uplifting!!

Tracey

Dear Tracey

Many thanks for your kind remarks - I'm flattered by what you say.

Regards - Mo xx

Hi All WG sufferers

Had my flu jab yesterday feeling a bit off today sore in needle area, achy muscles especailly neck and very very tired, anyone get theirs yet and feeling similar. I wasnt diagnosed last winter so this my first time

Tracey

Hi Tracey

Just read your posting about your 'flu jab. The consultants at the vasculitis clinic I attend told me not to get a 'flu jab because my immune system is so depressed with the drugs I'm on. My GP keeps pressing me to have the jab but I haven't done so for many years because the last time I had one, it made me feel so ill. I had the jab in the morning and by afternoon I became shivery and ran a high temperature and went to bed for several days! And I was not very well for the whole of that winter. I have the odd cold, but have not had any 'flu symptoms for years and years, so perhaps I have natural resistance! I am going to the vasculitis clinic in about a couple of week's time and will ask the consultants again about whether or not I should have the jab.

Hope you feel better soon.

All the best - Mo

Hi Mo

I didnt even think to query if should have it or not when the GP called for me saying its being done because my immune system low and that I should have I just went on ahead. Feeling a little better but my ear feels totally blocked had it checked out this morning and they said hearing reduced slightly but could be the start or end of a cold. Last night I went between shivering and sweating so im assuming the flu jab may have contributed to it. My arm is very red and swollen it went like that when I had the flu jab about 7 years ago as i work in the Hospital they encouraged us all to get for the safety of patients and they never gave me it again as my arm was so bad I did tell the GP this but he felt given the change in my own medical circumstances that I should defintiely go for it.

Perhaps you know your body best and will be able to decide for yourself whether to get it or not. Is your WG in remisison yet? dont you find it odd that you and I are the only two that are on the Cellcept? Although it appears to be doing the job for me I live in hope of being med free in about 2 years.

Regards,

Tracey

Hi Tracey

Just read your latest posting and you seem to be coping well with the effects of the 'flu jab.

As you say, I think we are the only two on CellCept - I was originally on azathioprine, but this made me really ill, so about 9 months ago I was put on Cellcept by the consultants at the hospital I attend and it seems to agree with me. At 4 tablets per day, I have taken several hundred by now! I don't know how long I have to take them, certainly till the end of this year, before they will consider reducing the dose.

I think I am going towards remission as my T- count is well down. It was off the radar, so to speak, when I first started this treatment but its now down to an acceptable level, although the consultants are still not satisfied with its present level and they want to get it down even further. So it looks as though I'll be stuck on these tablets for ages and they are VERY expensive! Thank goodness for the NHS!

My next appointment at the vasculitis clinic is on 27th of this month and I will make a point of asking the consultant if I would be considered to be on remission.

Will keep you posted Tracey.

Sincerely - Mo x

HI ALL

just read all your coments over the flu jab i have been told by my consultant and specialist nurse to all ways have them as i can catch things far easier and take so much longer to get rid of it again i have had the flu jab for the last 2 years now (diabetic as well as having wg ) my arm gets a little sore at needle point but only last a day the worse one for me was the swine flu i was not going to have it and was told by my specialist nurse and diabetic nurse that if i did not have it and caught the swine flu it could be really bad i had to have 2 with having w,g the first one i was fine the second one made me feel ill for a couple of days. i really think on this one you have to go with your gut feeling as we all could post totaly different feelings on this one i wish you all the best during to coming winter months i dont know if any of you get a bad chest now during the winter but mine seems to get bad each year take care jill

Hi Rebekah

Just wondering if you have had your biopsies done and if you have been commenced on any treatment as yet?

Hoping you are ok as you havent posted in a while x

Tracey

Hi Rebekha

Just read Tracey's recent posting and I would also be interested to learn what treatment your are presently undergoing and how you are bearing up. Keep thinking positive!

Kind regards - Mo x

I was diagnosed march this year after a month in hospital on anti-biotica and having blood transfusios followed by many tests, I was admitted with sinus infection, chest infection, coughing up blood and passing blood in my urine.

After diagnosis I was treated with large doses of prednisalone and cyclaphosamide,for 4 montha, Im now on Immune suppresants and a small amount of prednisalone and am so much better. Dont get down even the most severe cases have good results. Its a long road but I have come a long way. Keep your chin up.

Regards Fiona Bruce

Well done Fiona! Glad you feel so much better with the treatment and you seem on the road to remission. I've been having similar treatment since June last year and apart from the odd day of not feeling too well, am making good progress, but still have to go to the clinic every few weeks. Am going next Wednesday and will ask the consultant whether he(or she) thinks I'm going towards remission.

Kind regards and stay in there Fiona - Mo

Hello. Just discovered this site and read the many comments. I will give you my interest in this wegeners and hope it helps. Its three years now since my husband was diagnosed. At the same time he was diangosed with bowel cancer. He was in hospital for 18 weeks. Someone who never had been to a doctor, lead a healthy life but ended up with these diseases. His cancer has now spread to liver and lungs. Had two 6months sessions of chemo. I must say he has handled all of this with calm and acceptance that he is fighting two diseases together. At this minute he is off on his daily walk of two miles and is reasonably well only energy levels not be what they where. We take life one day at a time. This year we were married 40 years. Events like this have you wondering will we see this or that. But have learned to just take it day by day. As wegeners affects my husbands kidneys he has great treatment from his renal team and excelent treatment from oncology. So once over the shock of knowing you have something you never heard of, its just a case of going with the flow of whats on offer in treatment. Hope this helps people who are just diagnosed or dealing with this disease. Good wishes to all concerned. by the way from UK but live in Ireland.

Hi everyone,

Well it's been a busy and eventful few of weeks. I had my kidney biopsy and it confirmed the Wegener's. The good news is that although it has reached my kidneys, it's been caught early and there is very little damage. None that has effected the working of them, so I feel very fortunate.

I started my meds on Tuesday and I've been put on Cellcept for the immune suppressants, Lansoprazole for the nausea, Prednisol for the steroids, and calcium for my bones. It was a bit daunting at first, but I've written my timetable now and I'm settling in to my routine. I'm back and forth to the hospital for bloods and checks and so on, but that's just how it has to be for a while. I'm on a couple of research programmes, and I'm being very well looked after.

I had a trip to Australia planned in a couple of weeks, and they where suggesting I cancel it before the biopsy results, but they've now said I can go. Yippee!! I'm cutting it back from 4 to 3 weeks, but at least I'm going to have my very much needed and earned break, and as long as I'm careful, I'm sure I'll be ok.

I feel very well and I haven't noticed any side effects. So all in all everything is looking good. For once it looks like being gobby and pushy has done me well and got me the help I need early, instead of getting me in to trouble like it usually does.

Onwards and upwards!! Hope you are all well and winning. Your support and inspiration is such a comfort to me and I'm so grateful for your continued caring and interest in how I'm doing. Thank you all so much.

Take care, Rebekha xx

Hi Rebekha

Just read your latest posting and glad you are at last on the right medication. You will feel much better in a few day's time. Interesting that the docs have put you on Cellcept and I think you are the third patient on this site with this medication, Tracey and myself being the other two! We were at first prescribed azathioprine. but that made us very ill so the docs said we could try Cellcept and I have been on this for about 9 months or so and it does not appear to have any side effects whatsoever. I think Tracey has had the same experience.

The medics must have caught your Wegener's before it got to a critical stage, so you should proceed to full remission in time. My Wegener's went on for years before it was properly diagnosed and it sure got to the ctirical stage! Before I was transferred to ******** in June last year, I was nearly at the end, but as soon as the correct treatment was started at *********, I began to feel better and have continued to improve. I am going to the clinic at ** ****** on Wednesday for my checks, which I do every few weeks and I will ask the Consultant if I am on the road to remission.

Expect you are looking forward to your trip to Oz. It will make a nice break from the trauma you have suffered over the past few weeks. I hope it will be a very enjoyable experience - don't forget to take your medication with you!

We haven't heard from Tracey for a week or so now - hope she's OK!

Upwards and onwards Rebekha and regards - Mo

[color=red:25e6b43464](Sorry but Patient Admin have removed either a Consultants name, a Doctors name and or a Hospital / s name / s from this posting as it is the policy of Patient UK not to publish these on this forum. If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.)[/color:25e6b43464]

Hi Rebekah

So pleased to here from you was beginning to get worried. The good news is that your kidneys have been sparred and once i learnt that i started to feel so much more relaxed, mind you it took a while. Interesting you are on the Cellcept like Mo said only he and I appear to use it at present so then ther was 3 lol both he nad I are doing well on it and Im sure you will too. You will get weekly bloods for afew motnhs which is a pain but it is important to be monitored. I am so pleased foryou that things are a bit better than they could have been and like everyone says once you get started on a treatment regime things kick in quite quickly and you feel much better.

Wow going to Australia how nice, be careful please to pack all your meds lol and havea wonderful time Im sure you need it.

Enjoy

Luv,

Tracey