For how long wg patients have to get medication and infusion?Does anyone get off from wg medication?

[monikagoyal]

Just curious to know gor how long wg patients take madications and infusions?Does anyone get off from medications and live normal life?

[Llinos]

Hi, I was diagnosed 15 yrs ago, went into remission for 5 yrs , treated again and was medication free for 10 yr and lived a very normal life,brining up the kids alone, working, took up fencing for sport etc.

Have relapsed now and am having Rituximab infusions for the next 2 yrs but that does not hold me back. In June I went on the longest Zip wire in Europe and am out and about all the time, hoping to return to work soon after my 4th infusion. WG is not a death sentence and you can live a normal life.

[Hidden in reply to Llinos]

Hi Llinos, you have said you were diagnosed with WG 15 years ago, 5 of which you were in remission and 10 were drug free. Now, you have relapsed you are getting a 2 year rituximab regime.

Please can I asked where you are treated, as the course of events appear seamless with your treatment.

I'm desperate to live a normal, uninterrupted and drug free life but I'm struggling to get there...I've been told I'll be on MTX for at least the next 4 years and I was diagnosed 2 years ago.

How was your WG diagnosed? Do you struggle sometimes with symptoms?

Thanks.

[Llinos in reply to Hidden]

I live in Swansea, I think I have been very lucky with the speed of my diagnosis and with the treatment I received. Many others havent been so fortunate. I was 5 months from first symptoms to diagnosis.

I stared with nose bleeds , I was a sports Diver and had been diving in Port Talbot bay ( heavy industry and Steel work)s so I thought I'd picked up an infection. I was also an ITU nurse and had been in contact with an active TB patient so for a few months a few other Dr's thought I had TB. My hearing went next then the usual symptoms, night sweats, joint pain, nasal crusting s etc. My ANCA's were always -ve but just switched to +ve one day and the rest is history.

My biggest issue is fatigue and I have learnt to listen to my body, when it says stop, I stop! I sleep for 1/2 an hour most afternoons to recharge.

Learning to live with WG is a learning process, this Rituximab is a new treatment for me so Im learning each infusion I have. Rest for a few days after it then small steps in the big wide world again.

Where do you live? What medication are you on? How bad was your WG and how long before you were diagnosed?

Llinos

[Hidden in reply to Llinos]

Thanks for your reply. My symptoms were very similar (except I have never been a diver or a nurse). Days after my daughter was born I was struggling with a blocked nose and dry mouth...everything was blamed on my hormones, emotions and even (wrongly) illegal drugs. I was diagnosed when she was almost 10 months old...I felt cheated, because I wanted her so much, but it was such a bad start for us. I had cyclophosphamide x10 (4 of which were done at weekly intervals as there had been little change with the first few, then all treatment was stopped because they thought it was cancer but a negative biopsy ruled it out) then 2x rituximab then following a flare up I was put on azathioprine which was switched 6 months ago to methotrexate as I have psoriasis too. I have modified my diet and live as healthily as I can, including being active. I spend hours at night, obsessing and reading about fixes as I've always got niggles. I was doing really well recently, however my skin has started to flare and my joint hurt...I'm a little demotivated to say the least. I know I'll get there but it smacks hard when I read what others have managed.

Good luck with your rituximab, I hope it works you and thanks for the advice.

[monikagoyal in reply to Llinos]

Thanks for reply.it give a hope for future

[Llinos in reply to monikagoyal]

I have psoriasis too!!! How strange these auto immune diseases are. My skin was clear whilst on higher dose Pred but i'm now starting to flare up. We need a month in the sun all inclusive care of the NHS :):)

Chin up x

[Suzym2u Moderator Vasculitis UK]

It is a difficult question this and I can only answer with what people have experienced and told us , who have contacted VUK.

John was diagnosed nearly 15 years ago, WG, particularly aggressive the Cyclophosphamide infusions saved his life. John was given Azathioprine after the infusions but sadly it did not control his WG at all, so was kept on Oral Chyclophophamide, ( he was not given Methotrexate because of the Liver implications ) eventually after 5 years he was given MMF. Three years ago he eventually was weaned off prednisolone and started to reduce his MMF. John is considered in clinical remission but because he is always ANCA + he will probably be taking the MMF for the foreseeable future, but he leads a fairly normal life, life is different and not quite the same but it is certainly not a dull life, believe me.

We do know those who have been able to "come off" all the drugs and go onto to lead a relative normal life and feel no need to join a support group at all.

We know a guy who has been in clinical remission for over 20 years and leads a pretty normal life.

We know a guy who has been in full remission for almost 10 years now, no sign of relapse but he is monitored every 6 months.

But we also know a guy who was in remission for over 10 years but sadly experienced a major relapse and had to start the initial treatment all over again and certainly is not as well as he was, by any means.

I attended a meeting a few years ago and the doctor speaking said, no one who has been diagnosed with vascultis should be discharged even in full remission, should always be monitored once or twice a year.

Hopefully one day, the research doctors will be able to find a drug or the means to "switch" the vasculitis off so it will not relapse.

Susan

[monikagoyal in reply to Suzym2u]

Another question if the researchers really doing any research to cure from wg or other Vassculities.

[Suzym2u Moderator Vasculitis UK in reply to monikagoyal]

There is so much research happening at the moment, we attended the BSR conference in April in Manchester, earlier this year, over 2,000 doctors and research doctors attended this conference. Vasculitis was included in the programme with over 200 Rheumatologists showing an interest. 10 years ago, I believe there were only around 10 doctors who showed an interest in Vasculitis. This year for the first time there were also many on going research projects and posters shared.

Also in April, the 2015 International Vasculitis conference and workshop was held in London. Over 500 doctors and research doctors from all over the world , who have special interest in Vasculitis attended this 3 day conference. There were over 200 research studies/posters on display and doctors were encouraged to talk about their particular research project.

The biggest problem these doctors face are patient numbers, researching a rare disease is not easy when the patient numbers are low. This is why it is so important to take part in Research studies, especially if you have been diagnosed with a rare disease.

There are many taking place at the moment.

Rudy Study - This is the link to explain all about it and it is easy to join and register. vasculitis.org.uk/news/rudy...

DCVAS - This is the information - I do believe they need more Large Vessel types of vasculitis -

Diagnostic and Classification Criteria for Primary Systemic Vasculitis - The aim of this international study is to develop new diagnostic and classification criteria for the different types of primary vasculitis. The study will allow the investigators to improve the ability to distinguish patients with vasculitis from those who do not have the disease (diagnostic criteria) and to distinguish between different forms of vasculitis (classification criteria). The DCVAS study is led by Professor Raashid Luqmani (Chief Investigator) at the University of Oxford. The UK sites participating in this research are on this download - just click on the link - vasculitis.org.uk/content/d...

UKIVAS are also collecting patient data and information but you would have to talk to your doctor/consultant about joining this research study - If you click on this link it will give you more details - vasculitis.org.uk/news/news...

Susan

[vargus57]

ive got wg been on aza and pred 20yrs tried twice to come off but got ill so on for life.

[monikagoyal in reply to vargus57]

Sorry to hear that. Hopefully you

Will get better soon

[Kenneth]

I was first diagnosed with GPA (WG) in 1994. I went in & out of remission 4 times. I last had a course of Ritaximub over a 2 year period. that was completed 4 years ago. I am still in remission & Dr Jayne from Addenbrooks informed me on my last visit in March that he doubts if I will come out of remission again. On top of all this, I do not take medication for the GPA , I don't know if I am unique, but I'm not complaining. The disease effected my lungs & airways. I was originally under the care of Mr Martin Lockwood before he tragically died. I have over the years been treated with Campath & CD 4. Cychlophosfamide, Methatrexate, mycophenolate, & finally Rituximab. I am 66 years old & still in full time employment.