Glad to be diagnosed

It was a year ago at Christmas when I developed flu like symptoms, sitting on top of the fire shivering whilst everyone else was stripping off, and the wallpaper was peeling off the walls due to the heat! I slowly got worse with severe attacks of joint pain all over my body but principly in the fingers. It was worse when I returned from work and would get to the point where my wife would have to help me upstairs and undress me, the pain was too bad to push a button thru a button hole. She would also have to pop the pain killers and sleeping tablets out of the foil as this was too much to bear. Surprisingly come the morning I would have a hot shower and then go off to work until it would start again in the afternoon. I was going downhill and saw numerous consultants who diagnosed my condition as just a virus. I had been to visit my parents in Busselton, West Australia just a few months before and my brother, who lives in Perth, and I had recaptured our youth, bombing into muddy pools in the woods. Yes I was convinced I had picked up something exotic! We booked a week in sunny Portugal just after my doctor diagnosed a lung infection. We hoped the sunshine and 'getting away from it all' would be the best medecine. Sadly I spent the week in bed, so tired that I could only walk very slowly and very limited distance. I started to cough up blood and had to sit up in bed all night as the cough racked my body. Getting home was a trial as I suddenly realised how many stairs there were in the airport apart from getting on the plane! I saw another consultant who sent off some more blood tests and fortunately some bright spark at St BArts Hospital in London picked up that I was suffering from WG (Boy do I owe him a drink!) I was rushed into hospital and once again the gods were smiling on me as I was admitted into Addenbrookes, a fantastic hospital near Cambridge. Dr Jayne looked after me and I see him and his staff every month for a check up. I am on a world wide trial of Mycophenolate Mofitil which appears to be doing the trick. Of course I am also on Prednisolone (Watch the waistline go south!) When I was discharged from hospital, I felt very weak and couldnt walk upstairs or even drive to the nearest shop (500 yards) for a packet of chocky biscuits.. crikey how bad could it get. Still I set myself targets, the first one was when I was browsing thru the sunday papers and saw that my 'hero' Neil Young was playing a festival in Kent. His only British appearance. Came the day, and of cpourse being England, it was raining. Still we stood in a field for hours and got home about 4 in the morning. I did all the driving and then went to work as the alarm went at 6am! Not much was done that day but I had proved to myself that by listening to my body, and resting when necessary, I could still live a fairly normal life. My final target for 2008 was to go surfing in Cornwall. I have always loved the sea and spent many happy holidays with friends at surf village, Skewjack near Lands End. I did rather resemble a stuffed whale (damm those steroids) as I struggled into my wet suit and dragged my board out into some of the biggest surf I have ever seen in the UK. Sadly I could not stand up, too fat and too old but I felt warm inside as I had at least 'given it a go' The hospital are delighted in my progress but I know that I have avery long way to go yet. Reading some of the cooments on this web site have made me realise how lucky I have been. I have developed a much more positive attitude now, and at 57 years of age am fortunate to have seen my two children grow up and leave home. My wife works as well as me and so I guess we dont have too much to complain about. I would be delighted to communicate with anyone out there and expand my knowledge of this illness which has us all in its grasp. I like to think I may have just loosened the grip of a couple of its fingers!:)

Hi Geoff,
So nice to meet you. It sounds like you're through the worst of it maybe? I sure hope so. You're the first person who's described the same pattern of joint pain I had-- torture at night, better by morning, cranking back up in the afternoon. My mornings weren't fine like yours, but until the last couple months before diagnosis I could still work. My functioning time was 10a-2p each day. Before or after that was non-negotiable. I began to fear 8p every night, since that's when it was all over. Have you ever heard an explanation? My docs said I was crazy. :p I think I'll ask my JHU rheumy this week.

hi geoff.
i started with similar symptoms to you except it was muscular pain instead of joint with me.that was xmas 2006.i also tried mycophenolate but had to come of it after suffering side affects.anyway two years older and three stone heavier i still suffer from severe fatigue when attempting to do the simplest of tasks that my 6 year old grandson would do without a second thought.it's good that you are progressing well.keep us informed and come back soon.
john

Hi Sangye,
Pleased to report that the joint pain has gone completly, the only reminder is the tingling to the edges of my feet where I am told I have suffered some nerve damage. I believe the nerves will grow back in time. I didnt receive any explanantion as to why I was experiencing the joint pain at such precise time frames.

Awesome! Wishing your neurons happy healing.

Hi Geoff, had same joint pain but combined with muscle pain. Couldn't get out of bed, but once I did and walked about it receded slightly so that I could function. But then by 7 to 8 pm it got so bad that no matter what I did I could hardly stand. if I just sat or lay down without movement I was OK. My doc diagnosed me with Polymyalgia Rheumatica, my ear as just an infection:confused:. I was treated with prednisone at low dosage for a few months until a trip to neurologist because of dropped left foot and neuropathy and his suggestion that I had vasculitis. Ha, with my husband and all our friends bing doctors, no one even thought of Wegener's, even now they all read up on it just to get familiar so obscure is our little diseases. This is my second time on cyclophosphamide and once again its doing the trick:D. Besides having loooooow lymphs, everything else seems back to normal. Just ANCA is 45. But because last time I wa on cyclo 6 months and had the same good results, was taken off cyclo and tailspinned back within a month, this time I will probably stay on for a year. bummer.:eek:
I too look like a whale, from 160lb to 210 in a few months. Ugh. My vanity suffers and I still can't recognize myself in the mirror. And I say to all fat people please stop eating and get a healthier lifestyle. I know that my disease is making me this tired and ungainly, but being this fat is probably 50% of why I huff and puff with everything I do:mad:. I am lucky that I live in Canada with our greath health care, that I own my business have a great partner and work full time but can take off for doc appointment or just because at any time. And I am grateful that my symptoms while painful are nowhere as bad as many of my fellow sufferers here.

Hi Jola, Forgot to say that apart from the joint pain, I had this amazing feeling in my upper arm as if someone was pulling tight on a lassoo made of piano wire! Glad to say thars gone for now. How is cyclophosphamide? do you have any side effects? I am on Mycophenolate Mofitil (MMF) and have very wierd dreams :D which if I have been able to sleep leave me exhausted come the morning. I take sleeping tablets on 2 nights during the week to get some quality sleep. I also have some mood swings :( (ask my wife!) which have put me in some strange 'places'. I practise Reiki and have had some counselling and feel ontop of the situation. Had to chuckle seeing your picture of the snow. WE have had a 'dusting' of the white stuff here in the UK and the whole country has ground to a halt! Best WIshes, Geoff:)

Ah, dreams, for most part I don't remember but thats good since they are the weirderst dreams ever. Cyclo is OK, I am lucky and have no side effects, except for curly hair, a bonus, no need for a perm now.:)
I have always been a happy person and so it is now, a bit shorter on temper, but no mood swings. Only sleepy and tired from noon on. Weight gain is my biggest problem :eek:and I wish I could loose some of it now. The snow pic is pre weight gain. Yes I heard how snowed in you were, and how everything ground to a stop.

I just read this Geoff. I can't say I had any joint pains, all of my pain was in my head and ears, but if I remember correctly, the time frames were the same as yours. I would wake up relatively ok, and it would ramp up during the day and would get crazy in the evening, and insane during the night. This got progressively worse until I just couldn't sleep at night and the days became part of the night so I would hurt all the time (this last part only lasted a couple of weeks at most as I ended up going to emergency three times - the third being the magic visit that got me my dream team and diagnosis). It's an interesting correlation. I wonder if other people's symptoms worked on the same schedule, and if there is a physiological reason for the correlation.

My joint pain followed the same weird schedule. I began to dread the evening and night-time, since I'd (literally) spend them them screaming in pain. I don't know of any physiological reason for it. In Eastern medicine, the liver meridian is most active in the middle of the night, so if it's a question of liver irritability (eg toxins) then symptoms would be more active at that time.

Yeah Sangye, I was thinking that if a whole bunch of us felt our symptoms on that schedule (it would probaby NOT be something that we'd tell our docs and therefore not something they would document, as when we speak to them there is usually a miriad of other more important things we would like to say) if it's something that might give doctors a clue as to the disease process and get them one step closer to an answer. You know me, always dreaming the big dream. ha ha.

Unfortunately it's not at all unique to Wegs. People with cancer often have increased pain at night, too. It's one of those signs that medical doctors do not have an explanation for, so they generally ignore it.

Hi Geoff, Well you have just describe the jiont pai that i'm having to a tee. It begins worse in the evenings can't use my fingers, no strength in then at all and yes getting those bloody pills out of the fiol i dread getting out the bed to go to the loo because of the problems getting back!!. But still count my self lucky that i haven't had the horrendous problems that others have had on here.

Quote:

---

Originally Posted by Sangye

Unfortunately it's not at all unique to Wegs. People with cancer often have increased pain at night, too. It's one of those signs that medical doctors do not have an explanation for, so they generally ignore it.

---

hmmm. wouldn't it be nice to just ignore problems and pretend they don't exist just because you have no explanation for it. too bad we can't do that. :glare:

The thought that has occupied my mind is that we present ourselves to the Doc with almost a conditioned response to 'How do you Feel'. We struggle to come to terms with the wierd aches and pains and rationlise the whole or Big Picture. We are conditioned from our mothers knee not to moan about 'little aches and pains' and to 'put on a brave face'. Over 2 years since DX, and I have had a very good remission apart from one heavy flare exactly a year ago which needed Cyclosulphamide infusions over 3 months to quiten down. Plain sailing from then to now as I managed to get my pred down to 5mg and hospital visits to almost 3 month intervals. The 'Holy Grail' was in sight!!.... and then MBF crept up on me unnoticed. I am fortunate to still be able to go to work and to all outward appearances enjoy a 'normal' life, so I put my general health issues down to me trying to live to previous expectations. The joint pain was a very unwelcome vistitor the other weekend and I suddenly felt very vulnerable. Its true to say that I have turned a blind eye to the inevitable hold this illness has over us. Fortuantely I was tended to very quickly by Addenbrookes and for the moment an increase in pred seems to be doing the business. Had a letter this week to invite me in on Monday for a CT scan and starting to feel upbeat again. Its nice to be wanted!! Sorry to blag on, I know that so many of you are far worse off than me and wonder why I am simpering on. I am with you all the way and pray for our 'Big extended Family'

It's nice to hear from you Geoff and I hardly have any symptoms except sinus stuff but I had endured severe Wg symptoms and so glad today I am at a point where I feel pretty good. So continue to Blag on!

Quote:

---

Originally Posted by Geoff

The thought that has occupied my mind is that we present ourselves to the Doc with almost a conditioned response to 'How do you Feel'. We struggle to come to terms with the wierd aches and pains and rationlise the whole or Big Picture. We are conditioned from our mothers knee not to moan about 'little aches and pains' and to 'put on a brave face'. Over 2 years since DX, and I have had a very good remission apart from one heavy flare exactly a year ago which needed Cyclosulphamide infusions over 3 months to quiten down. Plain sailing from then to now as I managed to get my pred down to 5mg and hospital visits to almost 3 month intervals. The 'Holy Grail' was in sight!!.... and then MBF crept up on me unnoticed. I am fortunate to still be able to go to work and to all outward appearances enjoy a 'normal' life, so I put my general health issues down to me trying to live to previous expectations. The joint pain was a very unwelcome vistitor the other weekend and I suddenly felt very vulnerable. Its true to say that I have turned a blind eye to the inevitable hold this illness has over us. Fortuantely I was tended to very quickly by Addenbrookes and for the moment an increase in pred seems to be doing the business. Had a letter this week to invite me in on Monday for a CT scan and starting to feel upbeat again. Its nice to be wanted!! Sorry to blag on, I know that so many of you are far worse off than me and wonder why I am simpering on. I am with you all the way and pray for our 'Big extended Family'

---

I'm totally with you there. I'm so afraid that someone will think I'm being a hypochondriac that I tend to downplay my symptoms. I think that honestly, in my case, it's because my parents are both nurses and I grew up hearing the horror stories about people going on at length about issues that they didn't really have. So I conditioned myself eventually to tend to ignore things, that and I have a relatively high level of pain tolerance. That said my parents are the first to tell me I should be telling the doctor all my symptoms, so it's really my own psychosis on that part :)

Sangye - I always tell people that possibly one of the reasons that the pain increases at night is less items for the mind to focus on ( number of people, how many are blond, brunette, are you hungry, etc... during the day) and a common focus to turn inward..( thoughts, pains, aches, breathing, etc...) due to less distractions... It seems to make sense....

Oh, it definitely wasn't the case with me. There just aren't enough distractions in the world to drown out the kind of pain I was in!

I seem to recall learning an explanation of the increased pain at night for people with cancer, but I don't remember it, and don't remember if it was a holistic explanation or medical.

Quote:

---

Originally Posted by Sangye

Oh, it definitely wasn't the case with me. There just aren't enough distractions in the world to drown out the kind of pain I was in!

---

Ahmen to that Sangye!
Stop me if I have missed something posted somewhere, but has anybody come up with a definitive reason as to why this joint pain( and muscular for that) increases in intensity at almost definable times of the day (for me, late afternoon and then intensifying thru the night) only to dissapate come the morning?
I recall the blank expression on a doctors face (before my DX) when i was trying to gather together all the variety of syptioms for an explanation.

Quote:

---

Originally Posted by Psyborg

I'm totally with you there. I'm so afraid that someone will think I'm being a hypochondriac that I tend to downplay my symptoms. I think that honestly, in my case, it's because my parents are both nurses and I grew up hearing the horror stories about people going on at length about issues that they didn't really have. So I conditioned myself eventually to tend to ignore things, that and I have a relatively high level of pain tolerance. That said my parents are the first to tell me I should be telling the doctor all my symptoms, so it's really my own psychosis on that part :)

---

I think this, and a little bit of proffit mindedness, are responsible for the numerous signs popping up at doctor's offices around the city (haven't seen any in our little town - yet) that irritate me to no end... "one symptom per doctor visit". Can you imagine where we would all be if we told our doctors one symptom at a time and got treated for such? Six feet under is the appropriate response. It's something that totally freaks me out, enrages me and makes me feel like many doctors have either forgotten why they became doctors in the first place or became doctors for the wrong reason. I know that there are hypochondriacs out there, but shouldn't the system work in the favour of those who need the help instead of punishing them for the shortcomings of others.

There, I ranted. Thanks for indulging me.

Psyborg, I feel the same. I feel I often downplay what I'm feeling, not sure what my reason for doing this is - wanna be a supermom, don't want to be perceived as a whimp, not sure if what I'm feeling is normal and I'm over-reacting in my new hyper-self-aware state.... I honestly don't know. One thing though, I am way better at speaking up for myself and figuring out how to get heard when I'm at the doctor's office. Not quite where I want to be, but being a Weggie, I'm sure I'll get the necessary practice to assert myself more and more.

Geoff - take care of youself friend. Hopefully pred alone will stop things from progressing further, and you'll feel better in no time. Big hugs from across the ocean.:hug1:

Quote:

---

Originally Posted by marta

I think this, and a little bit of proffit mindedness, are responsible for the numerous signs popping up at doctor's offices around the city (haven't seen any in our little town - yet) that irritate me to no end... "one symptom per doctor visit". Can you imagine where we would all be if we told our doctors one symptom at a time and got treated for such? Six feet under is the appropriate response. It's something that totally freaks me out, enrages me and makes me feel like many doctors have either forgotten why they became doctors in the first place or became doctors for the wrong reason. I know that there are hypochondriacs out there, but shouldn't the system work in the favour of those who need the help instead of punishing them for the shortcomings of others.

There, I ranted. Thanks for indulging me.

Psyborg, I feel the same. I feel I often downplay what I'm feeling, not sure what my reason for doing this is - wanna be a supermom, don't want to be perceived as a whimp, not sure if what I'm feeling is normal and I'm over-reacting in my new hyper-self-aware state.... I honestly don't know. One thing though, I am way better at speaking up for myself and figuring out how to get heard when I'm at the doctor's office. Not quite where I want to be, but being a Weggie, I'm sure I'll get the necessary practice to assert myself more and more.

Geoff - take care of youself friend. Hopefully pred alone will stop things from progressing further, and you'll feel better in no time. Big hugs from across the ocean.:hug1:

---

"One symptom per doctor visit" Are you serious Marta? That is totally insane. My doc said that when one chooses to practice medicine that they choose to treat fellow humans and to help them as much as possible and that working long hours and nights is part of the job. He also said that a doctor should make themselves easily available to their patients and to take the time to listen to them and not just push pills.

I also watched a documentary about mental illness and how it is severely downplayed by mainstream medicine. It was on PBS last night. I forget who directed it, Joe Palot.......something or other, he is an actor I recognize from the movie "Momento." Anyway I had already discussed this with my doc a couple of months ago and he said it is very common that when a patient presents with mental illness the doctor no longer takes the patient seriously and treats them much differently. He said it is very sad this happens but there is a stereotype of people with mental illness that groups all people with mental illness into one pot.

That is very sad, there are so many people who are mentally ill and don't come out secondary to the fear of being stigmatised.

Quote:

---

Originally Posted by Geoff

Ahmen to that Sangye!
Stop me if I have missed something posted somewhere, but has anybody come up with a definitive reason as to why this joint pain( and muscular for that) increases in intensity at almost definable times of the day (for me, late afternoon and then intensifying thru the night) only to dissapate come the morning?
I recall the blank expression on a doctors face (before my DX) when i was trying to gather together all the variety of syptioms for an explanation.

---

I had the exact same thing. I could set my clock by it, actually. Each day I had a window from 10am to 4pm where the pain was much less. It was still horrific, but nothing like what happened outside those hours. I don't even have an adjective to describe that.

Even if they aren't posting it, most PCPs (GPs) in the US are also going by the "one symptom per visit" rule these days. It's a diagnostic nightmare. Most diseases present with a constellation of symptoms that lead the doctor to a diagnosis. Also, the number one rule you're taught in diagnosis is to listen to the patient-- 99% of a dx comes from the history. The exam and diagnostic tests just narrow it down and confirm the dx.

I'm pretty sure this is why i had two stupid rheumy's turn me away, they had latched on to a false positive for malaria and refused to look beyond very basic rheumatolgical testing. Oddly it was my hematologist, who it turns out I didn't need to even see, that called that it was a rheumatological disease. Though he picked the wrong one, he probably saved my life.

Funny thing is my last rheumy also discounted that it was WG because he had decided I didn't have granulomas in my lungs it must be something else, even with c-anca at 9.1. I went home and looked it up and realized I never mentioned the shortness of breath or the tracheal thickening to him because my ENT said it was from acid reflux. Basically I got very lucky because if I hadn't requested prednisone from my PCP I would have probably progressed much further during this run around.

Psyborg ~Looking back, I feel very lucky my pulmonolgist made some very right decisions in diagnosing and treating the WG, and, more importantly, helping me make the right decision to follow his advice to go to Denver for the treatment that brought me back to healing instead of my body continuing to shut down and die. He always gives me the facts, straight forwardly, in his calm, quiet manner, and answers questions completely. Your hematologist is the first one to be the one hero of a weggie diagnosis story!

Quote:

---

Originally Posted by marta

I just read this Geoff. I can't say I had any joint pains, all of my pain was in my head and ears, but if I remember correctly, the time frames were the same as yours. I would wake up relatively ok, and it would ramp up during the day and would get crazy in the evening, and insane during the night. This got progressively worse until I just couldn't sleep at night and the days became part of the night so I would hurt all the time (this last part only lasted a couple of weeks at most as I ended up going to emergency three times - the third being the magic visit that got me my dream team and diagnosis). It's an interesting correlation. I wonder if other people's symptoms worked on the same schedule, and if there is a physiological reason for the correlation.

---

Hi Marta. I read your blog yesterday and its very interesting to read. And well done with the clothing etc. I will definately be buying some items. I've just read the above post and thought I'd add my two penneth. Mark followed the same pattern quote - "it would ramp up during the day and would get crazy in the evening, and insane during the night.". He would go to work, be fine during the day, then, when he came home in the afternoon he would start to feel rubbish - headache would start to come on and get progressively worse so by night-time he'd be in agony with it and describing it as unbearable throbing like his head would explode. His pain was all round his head, sinuses, and his teeth and he had a sunburnt feeling on the top of his head. His nose was blocked for 3 months but constantly running bloody fluid for weeks. He was blaming it on the house or it must be something in the house at one point. When it got so he couldn't go to work anymore as he was in constant severe pain in his head the top of his nose swelled which was scary, like the size of a ping pong ball. I wonder why the wegeners symptoms get worse at night.

Quote:

---

Originally Posted by staystronglivelong

Hi Marta. I read your blog yesterday and its very interesting to read. And well done with the clothing etc. I will definately be buying some items. I've just read the above post and thought I'd add my two penneth. Mark followed the same pattern quote - "it would ramp up during the day and would get crazy in the evening, and insane during the night.". He would go to work, be fine during the day, then, when he came home in the afternoon he would start to feel rubbish - headache would start to come on and get progressively worse so by night-time he'd be in agony with it and describing it as unbearable throbing like his head would explode. His pain was all round his head, sinuses, and his teeth and he had a sunburnt feeling on the top of his head. His nose was blocked for 3 months but constantly running bloody fluid for weeks. He was blaming it on the house or it must be something in the house at one point. When it got so he couldn't go to work anymore as he was in constant severe pain in his head the top of his nose swelled which was scary, like the size of a ping pong ball. I wonder why the wegeners symptoms get worse at night.

---

Mark also had no sense of taste for months leading upto his diagnosis and treatment and loss of hearing intermittently - he never went deaf but it would come and go like his ear felt blocked. Once they put him on the high dose pred he felt better immediately.

Quote:

---

Originally Posted by staystronglivelong

. He was blaming it on the house or it must be something in the house at one point.

---

I remember seeing someone who tested me for allergies as it was the only thing that I could think of that might account for my sinus issue and hearing loss. The consultant said I was allergic to yeast and told me to stop drinking beer and wine as well as reduce or eliminate other food items. It was the worst diagnosis I have ever heard!! The totally bizarre issue was that I had to send a sample of poo thru the post to a lab in Germany. I couldnt keep a straight face when the assistant in the Post Office asked me for the value of the parcel and did I want to insure it. :lol:

LOL! He probably thought well least your happy customer!

Holy crap that's funny! PPP (Priority poo post).

ROTFL... What's the postage for poop? :laugh::lol:

I cant remember exactly........ but I do recall stepping back from the counter as they rubber stamped the parcel:ohmy:

I too could not keep a straight face either, that would of been funny if you did tell the postman what was in it.....his facial expressions "Priceless"

I thought it was bad enough having to deliver it by hand to the hospital. (Actually, taking the sample on the wooden "spatula" and smearing it in the spot given on the sample card was the worst. I neartly gagged several times before finishing the job. It was clear, even to me, I'd never be worth a $#!+ changing poopy diapers.)

Things like this just don't gross me out or bother me. I have had to send in several stool samples like this before. I even take pictures of it and of my chunks as well.

ROTFL :lol:

Geoff, That really had me laughing i can just imagine you at post office with poo in hand so to speak. Going to the docters with one sympton at a time, can you just see it, Docter i have jont pains, I will come back and tell you about the mouth ulcers next week:w00t:

Hi Geoff your story started a little like my own I can relate to the preds I have more stretch marks than my wife and I am only 28.I was diagnosed in 06 and have been in remission over a year but it was very hard getting to that but like you I know how lucky I am my wife is great too and my beautiful children.

I am glad you have good family support Barry.
Oh the indignities of illness Geoff LOL

Well I'm pleased to report the parcel has 'winged' its way from these shores, never to be seen again. In a more sensible manner I can report that of late I have been 'flaring' as I got my pred down to 5mg and the immunosuppresant (azathiaprine) at 150mg daily. Nothing to get out of my tree about, but just felt like I was dragging my knuckles on the floor and living about 1/4 of a life. Then I got the joint pain back and that was a reality check. The worst syptom I experienced (apart from coughing up blood) before my DX. Antway saw Dr Jayne today at Addenbrookes today and he has increased my pred to 20mg and perscibed a gradual increase of the Aza to 200mg and then 250mg daily. I started on MMF (Cellcept) and have been on Aza all year but he says that it the increase doesnt get my markers down then he will put me on Retiximub. He said that my Kidney and Lungs were going well and then after my blood work he sent me down to see the ENT guy (jonny) who is a real laugh. How anybody can maintain that level of humour whilst they peer up peoples noses is beyond me! He took some nasal swabs and then gave me the results of my recent sinus scan. Everything looks good and no 'perforations' etc caused by the Wegs. Dr Jayne doesnt want to see me until the middle of Jan (must be because of the Optician joke!) but wants an interim blood test to see how I'm going. Got to watch out for any tummy pain possibly attributal to the increase in Aza. It was good to see him today as he answered all those sort of questions that ping about your brain. They have over 250 Weggies on their books at Addenbrookes and so I feel reassured that they are working with practical experience and not from a guide book. So I am going to celebrate by letting off a couple of rockets in the back garden, well it is Guy Fawkes Night!!

I´m allways curious to learn something new, and so I read that Guy Fawkes Night is the celebration of the anniversary of the failed Gunpowder Plot of 5 November 1605.
Hope you have a beautifull evening, with lots of great bonfires! :biggrin1:

He was a Terrorist driven by his religious beliefs. Nothing much changes does it? :wink1:

Nothing much changes indeed.
We 've all seen it before...:rolleyes1:

Forgot to mention that when I went on friday I got chatting to Jane who does my blood work and she gave me an update on my DNA sample. I agreed to give this about 5 months ago as part of a research incentive being undertaken at Addenbrookes. As we know only too well, there is no one clinical test to correctly diagnose WG and also, from reading thru this Forum, it is apparent that an nearly diagnosis is critical to management of the disease. Adds have about 1,000 DNA samples from the UK taken from weggies and I think the other group was PMA? (not too sure about that, but apparently very similar in the vasulitus group). They are scanning thru the DNA to try and identify any common 'markers'. This will hopefully give the docs a chance for a quick but accurate diagnosis for anyone suspected of having the illness. They also have a DNA pool drawn from throughout Europe (1,000 samples) which they will use to hopefully ratify the earlier results. Who knows, they may even get an insight into the disease which may lead to even better things!!:thumbsup:

Thats amazing. And brilliant news for us!!

Well I hit the 5mg Pred wall last week with the same results..AAAggghhhh! I couldnt finish 2 weeks at that doseage as I had very high Tinnitus, felt weak as a kitten and a 'Pressure Cooker' headache that would not go away. I stuck with it for 5 days and then called the Clinic at Addenbrookes. They saw me the next morning and although Dr Jayne was flying off to the States, he looked over my notes and made some recommendations.

My feet didnt touch the ground as I saw Dr Trividi, who said that it was probable that I would have to go onto Alemtuzumab (I will be admitted into hospital for the infusions shortly). I was then off to the next Clinic to see Jonny who 'scoped' my nose and checked out my ears. Evidence of some infection but overall not too bad. Had my bloods drawn, picked up a perscription, and then had a chest X-Ray and out of the Hospital in just over 2 hours...Hurray for the NHS!!!!

I have had to bump up my pred (now 20mg) as an interim thing which sucks but there you go.

I have been looking for some info on Alemtuzumab, anyone had any personal involvement with this drug?

I have never heard of Alemtuzumab Geoff. Do you know if it is similar to Rituxan or Rituximab?

I haven't heard of it either. Why didn't they go with the usual drugs?

I guess I will find out more Sangye when I get the call to go back in. We discussed Rituximab with Dr Jayne back in Feb and I looked set to go with that, perversly I then had my best run of health since DX in April 2008. I am guessing that they may want to keep RTX in the locker for if I get a 'big flare'??

Apparently Alemtuzumab (aka Campath) has been used with success from Addenbrookes from the mid 90's (apologise to anyone who knows more about this drug and I'm talking outta..) There is also the cost factor in that RTX costs approx £10,000 for a course of treatment and I would have to get the approval of my PCT.

And compared to so many, my involvement with Wegs palls into insignificence, this drug would appear to fit the bill, and I am of a mind that if Dr J says so, then thats fine by me!!! I'll fill in the gaps when I next go to Cambridge. :smile1:

I felt compelled to "go back in time" after all these years and revisit my first posting on this amazing Forum. It enabled me to weigh up the experience, the drug regime, the friends I made along the way (Some sadly no longer with us) and also gather my thoughts about my journey since DX in April 2008.
Reading my above post came as a shock as I was admitted into Addenbrookes to begin treatment with Alemtuzumab with the endorsement of the senior consultant who informed me that about 70% of the patients then go on to a drug free remission! what could go wrong? sadly I fell into the minority 30% and it was a very dark day when they informed me of the fact.
By this time, late 2011, I had gone along the top shelf of drugs available to us WG sufferers and repeated cyclo infussions and to say I was getting a bit scared would be an understatement. Fortunately I started RTX in the February of 2012, the same day as our first Grandchild was born, how poetic is that. I am delighted to report that 2 and half years down the line we are both doing well!! I have had to retire from work ( i am 63 now) and we get by on a couple of small pensions. Life is good and although the past 2 years have seen some ups and downs (3 chest infections at the start of this year), I was delighted to visit the Clinic at Addenbrookes last friday where they told me that they didn’t want to see me for another 4 months, the longest I have been between clinic visits. My ANCA is negative, I have tapered down to 6mg of pred ( In 6 years since DX I have never got below 5mg, but hey its only a number!).
We recently travelled to Greece to stay with my Son in Law's parents and I was shocked and delighted to swim every day and towards the end of the week, I managed to go round the buoys at the end of the bay, about 600ms in total. My aim now is to try and lose the 42lb that Mr Pred has kindly given me!
Its easy sometimes to slip into a dark well of despair with this illness but I have tried my best to keep a positive frame of mind for most of the time, and when I haven’t I have been fortunate to have had some excellent counselling and medical care, as well as the support of my family. How Lucky am I :thumbsup:

And how lucky we are to have you here with us Geoff ( sorry the disease brings us all together ) but what a great support group we have. And so glad that your holiday inspired you to push even further. Now you'll have to join Pete's workout post !

Quote:

---

Originally Posted by Debra C

And how lucky we are to have you here with us Geoff ( sorry the disease brings us all together ) but what a great support group we have. And so glad that your holiday inspired you to push even further. Now you'll have to join Pete's workout post !

---

The more the merrier!!

Love ya Geoff! How lucky are we indeed!

Very good, Geoff! Its really nice to hear some good reports.

Well here we are again, those of you who know me well will recall that I want to stay positive and upbeat, although sadly that cannot be the case 24/7.
Returned from Addenbrookes yesterday on Cloud 9. 12 months after my last RTX infussion and still going strong. The word Remission was thrown into the air and I grabbed it! Still on 6mg of pred but given the all clear to slowly taper. 7 years since DX and never been below 5mg so watch this space.
I make no apologies for posting an upbeat message as my wife and family have supported me through thick and thin and it would be an injustice if i didnt punch the air and celebrate my good news. Sometimes we put the Wegs dog firmly in its kennel and today, Rare Disease Day is quite appropiate that I do just that.

Great amazing news !!!!


Sent from my iPad using Tapatalk

That is really great, Geoff! Have they given you any specific taper schedule?

Now about that pint..... :-)

Such awesome news Geoff and a promising report for every one of us to look forward too.

:hug3::hug3::hug3::lol::lol::hug3::lol:

Once again, could I "like" this post twice, heck, three times. Happy for you. And family
Dale

So happy to hear your good news, Geoff! As it happens, we were both dx'ed in April, although mine was three years later in 2011. Although I believe I actually had Wegs in 2008. In any case, you are a great example to all of us, and I'm coming along right behind you! :thumbsup:

Cheers Guys, you put a smile on my face! :smile1:

Now as for that pint vdub, we need to reduce the miles between us! You coming this way or will it wait until I get to you??

Well, I was sort of thinking of doing both! :-)

SOOOOOO Happy for you Geoff,its been a long time coming so you are right to rejoice. Good luck with the taper :hug3:

Great news Geoff!

Got the Atlas out yesterday vdub and planned the route....... its on!! (next year, god willing :wink1: )

Quote:

---

Originally Posted by annekat

As it happens, we were both dx'ed in April, although mine was three years later in 2011.

---

April for me too you two--2012 for me.

Quote:

---

Originally Posted by MikeG-2012

April for me too you two--2012 for me.

---

I think someone on here was dx'ed the same month and year as I, April 2011.... just can't think who at the moment. I do know that I'm more likely to flare in the winter, and winter of 2011 is when I got sick enough to be dx'ed.... it just took until April for it to actually happen.

Quote:

---

Originally Posted by annekat

I think someone on here was dx'ed the same month and year as I, April 2011.... just can't think who at the moment. I do know that I'm more likely to flare in the winter, and winter of 2011 is when I got sick enough to be dx'ed.... it just took until April for it to actually happen.

---

I caught a nasty upper respiratory infection that January, and had the nasty croup cough for more than 3 months. Finally, I went to the the ER because I had aspirated one of the lung lesions and I was coughing up blood. Docs at the ER couldn't believe that my other docs just kept prescribing steroids and cough suppressants, and told me I wasn't sick enough to have wegs. Guess what, I have a new team of docs now! (-8 Had them since the hospital stay in 2012 and have had great care ever since.

I think we have diagnosis in the early spring because of some trivial cold or cough that is persistent and then the disease has a chance to run us down enough by March/April to take over fully. Like you Anne, I now know I had this for about 4 years prior to diagnosis, but docs were not communicating with each other about my symptoms and treatments. <sigh>

Quote:

---

Originally Posted by annekat

I think someone on here was dx'ed the same month and year as I, April 2011.... just can't think who at the moment. I do know that I'm more likely to flare in the winter, and winter of 2011 is when I got sick enough to be dx'ed.... it just took until April for it to actually happen.

---

I was diagnosed in August 2010 but officially commenced WG meds (after positive biopsy) in April 2011
I was only on RA meds before then

Geoff,
That is some very good news, Remission is a wonderful word! You can take a deep breath now and know how it feels when people talk of remission. Take care of your self and your family, so happy for you.:hug3:

That sounds very much like what happened to me, Mike, with the lung problems starting in January or so and getting worse over time. I even talked to my dad's wife, a former nurse, about maybe having pneumonia, and she just brushed it off as what SHE had had, the something that was "going around", and which she had trouble getting over (she smokes, duh....). Later, she discounted Wegs, as did my pulmy, until presented with my saddle nose and the results of a nasal biopsy I'd gotten while he was on vacation. I never did aspirate a lesion, although I did have them scattered throughout. "Not sick enough to have Wegs", now there's a concept that's wrongheaded, and lack of communication between docs seems to be prevalent these days, as well..

Quote:

---

Originally Posted by MikeG-2012

April for me too you two--2012 for me.

---

April 2010 for me. Is spring a a bad time for the Weg dog getting out?

Quote:

---

Originally Posted by drz

April 2010 for me. Is spring a a bad time for the Weg dog getting out?

---

Apparently so. I think it starts in winter, for me, around the holidays, and then builds up slowly to culminate in late winter or early spring. I've been managing to fight it off all winter this year, but will find out today if my blood work shows any increase in inflammation or possible disease activity. I've been feeling a little off lately, and woke up with a bit of sweating last night, for the first time this year. Will let everyone know the results.

Quote:

---

Originally Posted by annekat

Apparently so. I think it starts in winter, for me, around the holidays, and then builds up slowly to culminate in late winter or early spring. I've been managing to fight it off all winter this year, but will find out today if my blood work shows any increase in inflammation or possible disease activity. I've been feeling a little off lately, and woke up with a bit of sweating last night, for the first time this year. Will let everyone know the results.

---

Between Thanksgiving and Valentines Day I have been sick the last three years for at least a few weeks, one year it was over 10 weeks and the shortest was about three weeks. I think it is partly due to decreased humidity, increase indoor activity that helps spreads germs for colds and flu, and the colder weather contributing to less outdoor activity and exercise.

Quote:

---

Originally Posted by annekat

Apparently so. I think it starts in winter, for me, around the holidays, and then builds up slowly to culminate in late winter or early spring. I've been managing to fight it off all winter this year, but will find out today if my blood work shows any increase in inflammation or possible disease activity. I've been feeling a little off lately, and woke up with a bit of sweating last night, for the first time this year. Will let everyone know the results.

---

Well, my SED rate is up from 16 three months ago, which was pretty low, for me, and well within the normal range. Now it is 26, higher than normal. My doc is not very concerned, and in fact didn't remember the low number from last time and had to look it up, at my prodding. He figures I could be fighting off a cold or whatnot. He was a little concerned about the night sweat last night, but not with my slightly higher temperature, which is usually around 97.6 but has been closer to the "normal" normal of 98.6. I never thought this was a big thing, but I do feel a little worse and more fatigued than say a month ago, so am on my guard. He gave me permission to take more pred for a few days, at my own discretion, if I continue to feel not quite right. And of course I'll call him if things get noticeably worse. My other blood work such as creatinine was at acceptable levels.

Bags all packed, going to try my new found "Remission" by a weekend away dancing! The idea is we have dance lessons from the professionals on the very popular TV series "Strictly Come Dancing". I have tried for years to get tickets to the BBC set, but when you realise that over 2 million people applied for tickets just to the last series you can see what I have had to compete with! Extra pred tucked away along with knee and back suppoorts, oh the joy of growing older!
If I can type on Monday I'll let you know if my Foxtrot is up to scratch...:laugh:

Geoff,
Oh my that sounds like a wonderful celebration for "Remission". I can't wait to here how it goes when you two cut the rug. Have the time of your life you and your wife. Let the fun times begin!:smile1:

That sounds great, Geoff! I'm happy for you! And when you get back, enjoy a nice restful day or two.

Hi Geoff,
Reading your post, I'd like to think that you have succeeded in unlocking the grip itself over you. Your attitude is shining thru'. Best wishes.
Ravindran

@Geoff, just read your story [emoji1360]. Wondering what became of the DNA studies?

ongoing Gab, in fact during my latest Clinic visit I was asked to take part in another trial, this time about the long term effect of Retuximub.

Its always very exciting to hear about ongoing research into our illness and to hold out hope for a breakthrough in its treatment.

https://d13yacurqjgara.cloudfront.ne...0_anim_gif.gifYou go Goeff!!

LOL - love it Mikeg-2012! Where did you get that?

Quote:

---

Originally Posted by Gab122

LOL - love it Mikeg-2012! Where did you get that?

---

I did a simple google search for dancing animated emoji and saw this one instead! I was looking for a smiley face dancing and this one was MUCH better! ROFL!!

Quote:

---

Originally Posted by Geoff

ongoing Gab, in fact during my latest Clinic visit I was asked to take part in another trial, this time about the long term effect of Retuximub.

Its always very exciting to hear about ongoing research into our illness and to hold out hope for a breakthrough in its treatment.

---

@Geoff can you please vote on the Poll of rtx efficiency (if you didnt vote yet) ?

Quote:

---

Originally Posted by Alysia

@Geoff can you please vote on the Poll of rtx efficiency (if you didnt vote yet) ?

---

Speaking of voting.... @Geoff Could you also come over and run for president. We need someone else to vote for on Tues.

3 years on and what can I say??.. RTX is doing its stuff for me, yes I have some bad times but seriously no complaints...for the life of me I cannot get Pred free after 11 years but it doesn't bother me anymore... its just a number.. Just returned home from a visit to the Endocrine Unit at Addenbrookes, Cambridge, UK where they have been monitoring my adrenal glands. I'm delighted to say that 11 years of continuous pred haven't sent them to sleep!!.. the glands that is and not the staff!!...I live a full life now that I am retired at 68 years of age, I get a full work out looking after my 3 granddaughters aged 4 to 7 years.. phew! I know I am lucky but have always adopted a full on positive attitude as long standing members of this amazing Forum know only too well..
I spent so much time in the early days on this excellent Forum chatting to fellow Weggies and fact finding, there is no equal..I wish you all the very best of health and love..xx

Geoff, I was at Adds today! Clinic 12 for me. Good to hear how you're doing.

@Geoff

Hey Stranger!! Glad to hear all is well with you!!

Great to see you on here again, Geoff! And to hear that you are doing so well. Especially interested in your adrenal glands! Though not sure why you can't get off pred if they are working. I recently put myself on a fast taper from 7.5 to 5mg and haven't felt a thing. I would like to get that test for adrenal function, out of curiosity. Have appt. with rheumy in mid October, and will bring up the subject. Wishing you continuing good health and happy times with family.

Sent from my MotoE2(4G-LTE) using Tapatalk

so nice to see you here, Geoff, I've missed you. Thank God you are doing well. I am also on the pred almost 11 years, celebrating my wg anniversary in 10 days from today.
How much rtx do you get (2000mg, 1000mg, 500mg ?) And how often ? Are you on maintenance meds too ?

Like ships in the night Sam!!..great to speak with you the other day, hope all is going well.
I'm in Clinic 12 on the 15th..hope the Prof is up to speed and hopefully ironed his shirt!!

Hi Pete!..no wonder you look so well with those 3 scallywags to give you the run around! Having grandchildren is like working out in the gym every day!

Hello Anne, yes getting your adrenal glands tested is a reassuring thing; good luck for later this month!..the dark green spoon rest is still in pride of place in our kitchen!

Thank you for the kind words Alysia, I don't have the answers to your questions but could inquire later this month when I am back at Addenbrookes...only maintenance meds is 5mg of pred!..I hope all is well with you my dear friend.

Wonderful to hear from you Geoff.
So glad that everything is going so well.

If ever you get back to Oz, let us know, we will be in for a catch up

I have missed your taunting over the cricket :flapper:

Don't be a stranger, you hear :hug1:

Some things never change..and I admit to feeling a bit sentimental when I read these messages from dear friends, some of whom I've been very fortunate to meet, as we travel through life together on this crazy path!
This illness has given me a wonderful opportunity to reach out across the world and make lasting friendships.
I love and miss you all..xx

Hi Geoff,

I’m glad you got a diagnosis. I tried Mycophenylate but it never worked for me. When I was first diagnosed I was placed on Methotrexate and prednisone (of course[emoji3525]). After several years the methotrexate stopped working and I was placed on Imuran. After several years that stopped working & was placed on Mycophenylate. I was on that for a year with no relief. I’ve been on Rituxin for a few years now on and off with prednisone. I find that I have a definite love hate relationship with prednisone. My body loves it till I try & come off... then I become a very scary human [emoji48]. & everyone evades me. Sometimes I go on it and don’t gain any weight and sometimes I will gain 30 lbs in 8 weeks! Every time it seems different-but always decreasing the dose... well it’s no fun. I’m pleased that your symptoms are more controlled.
Btw-I love this group. The people here are wonderful. Which I’m sure you have noticed.
Natty


Sent from my iPhone using Tapatalk

Oops sorry! Should have read the whole thread. [emoji849]


Sent from my iPhone using Tapatalk

Hi Geoff,
Good to see you on the forum. How often are you at Addenbrookes now?
I seemed to be there most months for the first couple of years, but since my transplant it looks like I'll only be going twice a year. Most of my blood tests and some drugs for my transplant are very similar or even the same as for Vasculitis, so it makes sense that Adds don't make me more frequent appointments (especially considering it's much further away than my transplant clinic in Leeds)
I do hope our Adds appointments collide at some point. Would be good to see you again.