Hi, I feel a little fraudulent as it’s not myself who has recently been diagnosed with GPA (Granular Metosis with Polyangitis) but my husband. However, I work within the health profession and it’s often me that wants more information and not my husband so I hope no one minds? In fact, with such a life changing diagnosis I feel it impacts on all the family so support from others would be much appreciated.
My husband was diagnosed in April after approx 12 months of ill health, a multitude of non discript symptoms that had no apparent link which I believe is common. After what I would call a ‘crisis’ point he was eventually admitted after being told he had secondary lung cancer due to 5 lesions in his lungs and feeling ‘consumed’ (his words) will illness. After a week, he thankfully was seen by a new doctor who spotted that this may not be cancer but a rare autoimmune disease and was sent for tests. He ticked every box!! After 3 days of IV steroids he felt amazing and was discharged to a fantastic rheumatology department. He is currently on his 4th out of 6 cyclophosphamide pulses whilst simultaneously reducing his steroids, and appears to be doing well.
I’m not sure what I would like to know at this point but was just wondering if there were others out there with this diagnosis and what this has meant for you. We are told that this is a devastating diagnosis which mustn’t be taken lightly always with a knowing nod of the head. What is life like after treatment? What is the life expectancy after treatment? How should we plan our future in terms of returning to work etc?
Any advice or knowledge will be appreciated.
Thank you.
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harris1629
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Firstly, and very importantly, you are NOT a 'Fraud', you are a very Caring Wife- concerned for her Husband. No-one, on these Pages will 'Mind', at all, you asking for our help/assistance.
Cyclophosphamide is basically a 'Chemotherapy' Drug, often used to 'Stabilise' Vasculitis. I was 'on' this Drug for a couple of years, once a month for the first year- once every couple for the next year- in conjunction with various 'other' Drugs.
I can't 'tell' you which Drug(s) your husband will be 'on', long term, as it Very Much Depends on his exact 'Condition. However Prednisolone, Mycophenolate Mofetil and Rituximab are possibilities s is Azathioprine. These Drugs are called Immune Suppressants which do indeed 'Suppress' the Immune System. (Vasculitis is caused by a fault in the Autonomic Response, leading to you being Attacked by your own Defence System.)
Make an appointment with your Husband, to see his Doctors/ Consultants, to discuss ALL these Issues- 'they' will explain it all Far better that I can.
It's all rather Confusing and, I'm NOT to sure, I haven't MADE IT WORSE.........
Thank you Andrew for your reply. From what I am reading it seems like we are at the very beginning of our journey, and the road ahead will be at times smooth and bumpy! However, for warned is for armed. I feel lucky that during Pete’s ‘crisis’ that we happened upon a quick thinking and switched on doctor which prompted rapid diagnosis and subsequent treatment. From what I am reading, a lot of damage can occur before diagnosis, we were close but lucky I think.
Reading other people’s stories is terrifying but also enlightening. Obviously we are hoping for remission but realistically I know that this may be a while coming, and may not be permanent. I am also thankful for an excellent rheumatology consultant who appears to have her finger on the pulse.
Financially I’m not sure what will happen with regards to Pete returning to work. The company he works for have so far been amazing, I hope this continues! Do you know if you or others have had any success with claiming on any ‘critical illness’ on insurance policies? It seems that under the umbrella heading of ‘rheumatology’ only lupus is listed in ours, and although he is receiving chemo he doesn’t have ‘cancer’ so is falling between the gaps if you get my drift?
Welcome. My OH also has GPA diagnosed 4 years ago and started the same treatment as your partner and then went on AZA. Lucky he had no lasting organ damage. The road has been bumpy and we are still learning about this disease, Covid has made life more difficult due to shielding.
I was quite an innocent at the beginning and thought once he had been treated that would be it!! The disease is life long and with flares and relapses along the way. Everyone seems to be affected slightly differently and responds to medication differently.
The fatigue was hard to manage and we were again lucky as he had retired.
There is an excellent face book page and also one for carers. The vasculitis web site is a fountain of knowledge as is the helpline.
Look after yourself , you are in for the long haul .
Thank you Main1234, my husband is 52. Our long term plan was early retirement if it was affordable at between 55-60. I suppose we just have to see how it affects him and decide accordingly. Covid means that he could continue to work from home if necessary fortunately. ‘Suck it and see’ I suppose. Thank you for your reply.
The best thing you can do for your husband is ensure that he is seen at a vasculitis specialist centre. It may involve travel but will make a huge difference to his health!
I myself was diagnosed in Nov 2015 with Gpa after 6 months of varying symptoms i,e shortness of breath,extreme fatigue,sinus trouble,rapid weight loss,excruciating joint pain and sweating on my last visit to the Gp I was accused of wasting an appointment next day I ended up in A&E admitted for two weeks my lungs and kidneys were packing in,Initially I was thought to have lung cancer I was 45 at diagnoses now nearly six years on I am now medication free after the usual steroid,cyclophosphamide and azathioprine and have been for two years my only lasting problem is Subglottic Stenosis which I have had 3 procedures to widen my trachea I spent a whole year off work recovering but returned full time as an HGV driver I lead a new normal life as much as I can with the only difference being I attend the Hospital and local Health centre every 3months for check ups know everyone’s journey with this is different don’t post on here very much but when I see someone looking for help I don’t mind as I wasn’t given much info at the start basically told what it was and to not look on the internet as it would scare me,well thank god for the internet and this site as I have learned a lot more positive than negative info sorry for the long reply but it’s not easy to explain the journey in a few words your husbands health will improve it just takes time
Is there life after (with) Vasculitis. Short answer is yes - life is what you make of it. The long answer is it depends on a lot of variables. I was pretty fit for 54 before being diagnosed with Vasculitis and hospitalised at Christmas. I couldn't walk or get up unaided. Since end of April when my consultant said I could start exercising properly, I have done 1000km on the bike plus plenty of dog walks, and my resting heart rate is down from 80+ to mid 55s. I am pretty careful to avoid crowds and I eat a lot of fruit and fresh veg, but life goes on.
Firstly, I am sorry to hear about your husband and for you, it is a shock and will take some time to adjust. Your experience of diagnosis sounds similar to mine, I was initially told I had lung cancer as both my lungs had lesions which covered 80%. This was devastating for my husband and I, so when they though it might actually be GPA we cried with happiness - little did we know! I also had IV like your husband which I imagine was steroids and then I went on to have 9 cycles of cyclophosphamide. I then went on to have Methoxate, which is a maintenance drug, unfortunately this did not work and I had a flare so we requested to referred to the team at Addenbrookes and David Jayne. They reviewed me and I was put on Rituximab every 6 months. This has stabilised my condition, although I am yet to achieve remission and I am still on steroids although have managed to get down to 10mg a days. My husband was very much like you he has to know everything and he was the one to push to be referred, as frankly I was too ill and you have the faith in the doctors. Although putting my trust in the doctors nearly killed me as they dismissed my continuous sinus infections and continuing cough for over 18 months! So you are doing the right thing as this illness is serious and if things don’t feel right you need to ask to be referred to one of centres, like the one in Addenbrookes. This is a complicated condition and affects people differently, but I would advise one thing based on my experience. I have been left with a myriad of life limiting issues in part because my condition was not bought under control quickly, it was over a year of treatment before referred to Cambridge coupled with doctors misdiagnosis before allowed my condition to do damage, so I was let go at work and have not been able to work since, which has completely devastated me. You have a long road ahead together and it can feel a lonely place so do use this site as I have found it so very useful. Best wishes to you both 😊
Sorry to hear about your husband, you are definitely not a fraud, this forum has been a great help and source of information to me and will keep giving you and your husband positive and constructive advice.I was diagnosed with GPA in 2017, took unwell while on holiday in south of France, within 36 hours was in intensive care where I spent 6 weeks (2 of them in a coma) where they diagnosed GPA,
You don’t say whether it is a specific or multiple organ impact, for me it was my lungs, 4 weeks of cyclophosphamide initially, now on azathioprine,
I am fortunate that I am looked after by a great rheumatologist but also have a respiratory and a renal consultant.
It took a long time to come to terms with the impact that the disease had on me and the the way forward and has been a bit of a bumpy road but there is definitely a pretty normal life ahead for your husband,
He probably won’t be classed in remission until he can maintain steady health off of steroids, this took me about 4 years but is different for everyone, I have had a couple of relapses or flares since and had to go through rituximab infusions for a while, don’t be afraid if this happens as it is quite common
Your husband can lead a pretty normal life and it is about minimising risks, stay away from people with coughs, colds , infections etc, wash hands / sanitize regularly and always always go to gp to get bloods checked if not feeling great, the disease can become a real danger if relapses or infections are left untreated
Hello, I am sorry your husband has this illness and hope he gets rapid control of it. For me it is my sister. She had a history of dry eyes, multiple ear problems including hearing loss, (saw multiple ENT people) then pain in shoulder, ribs, very intermittent shoulder rash, fatigue, incredible stiffness in the mornings, then a red eye (optician didn't know what it was). As an ex nurse I knew something was then systemically very wrong. Long and short of it she ended up in hospital with suspected pneumonia also querying cancer and TB, renal problems. After what I call some dithering (at which point my anxiety was off the scale) she was put on IV steroids then oral steroids and has now has 2 x IV Rituximab. She is having weekly blood tests. A CXR in a few weeks and respiratory and renal follow up. Consultant orginigally told her it would be 2 years of treatment but at the last appt said 5 years of treatment.... I wish she was in a vasculitis centre but she isn't. She became incredibly frail. At the moment she can't do much but is hoping to slowly build her strength back up. She is putting on weight around the face and abdomen but her arms and leg are very thin with muscle wasting. As others have said the path to remission is not straight forward and neither is the medication regime. Prognosis is much better these days but there is a risk from infection , so it is good to be on top of this and report any suspected infections to the GP/specialist immediately. Keep an eye on temp. He should be monitored for the effects of cyclophosphamide and steroids and should have been advised to eat a healthy balanced diet. My sister has been advised to eat the 'pregancy diet' i.e avoiding soft cheeses, partly cooked eggs etc. At the moment take special care with avoiding infection in public places.... On Vasculitis Uk you will see that people are very variable and that many are working, whilst some take early retirement or are having persistent debilitating symptoms.Wishing both of you all the very best.
Hi Harris 1629. We are all different. I was diagnosed with GPA 18 months ago after Cyclophosphomide and now Rituximab it is under control and our planning is that I will live as long as I would have done without it. Live a normal life too. But I was diagnosed quite early by a fantastic Renal Consultant. The biggest issue I have is COVID as it’s been a double whammy. I see that as my major obstacle. Nick
Wow! Thank you all so much for your journeys so far and your positivity. You are all inspiring! And thank you for this forum - pure genius! Many of your stories mirror my husbands almost to the letter and worryingly the flippancy of Gp’s in its recognition and Mis- diagnosis! It’s frightening! In our case if it wasn’t for my persistency and sending him to A&E rather than another telephone call to the GP who knows where we would be, but how many just wouldn’t want to use A&E at this time? I’m sure just like cancer, much has been overlooked since Covid.
I can’t deny that I’m not still feeling terrified particularly with Covid cases rising. I guess continued minimising of risks is still the way forward but can’t help feeling the clinically vulnerable are being thrown to the lions.
Thank you for all your support so far. I’m sure we will have many more questions for you as we go along.
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