New Member - Living in the United Kingdom

[charitygolfdays]

Hello to everyone here. My wife was diagnosed with WG this morning. She starts her steroid treatment tomorrow and first batch of chemo on Monday.
I'm greatly comforted by the support I have found in many of the forum messages and, although on the other side of the World, I strangely feel just next door to you all.
I'm certain to be dipping in and out as we begin our battle with WG together as a family.
Having so much usfeul information to hand is a God send and I may well sleep a little better tonight!
Best wishes to you all,
Jason

[misskay]

Welcome Jason. Look forward to talking with you. Recently diagnosed here also, I'm still learning about this lovely rollercoaster ride called WG...

[Sangye]

Hi Jason, so glad you found our group so quickly!! I'm sorry your wife was dx'ed with Wegs. At least she's starting off with a lot of support and info from people who collectively know more than the doctors!

Please ask anything you like. :)

[elephant]

Hi Jason we are here for you and your wife!

[pberggren1]

Welcome Jason. I hope your wife has good docs over there. Where exactly are you located?

[DEE]

hi Jason im from the uk too good news that your wife is starting her treatment so soon . what wg involvement does she have ? DEEx

[Hammy8241]

Morning Jason. Give your wife a big hug and make sure she knows she's not alone in this.

We are all here to give support when required. No question too small or silly, rants accepted and we even give our full attention to the strangest of subjects like where we have our washing machines!

Look at that a post without a question - do I really fit in with this forum? Oh bugger - maybe I do!:rolleyes:

[pberggren1]

As you can see Jason Hammy has a good sense of humour as well as many others on the Forum as well. Even I am know to crack a joke now and then. I find it important to keep a sense of humour going even when times get tough.

[brocky99]

Morning Jason, Im in UK as well, sunny manchester, except it isnt very sunny. We are all a great bunch on here and I have found this forum to be a great help, I have laughed and cried at some of the topics. But it is a great community very helpful and very supportive. Hope your wife endures the treatment not too bad, and please remember it helps to make us better even tho we dont think so at the time. Looking forward to hearing more from you.

Lisa

[Jack]

Hi Jason, yet another UK member here so you are far from alone. When you can get round to it, please give us a brief story of your wife's symptoms and diagnosis. Everyone is so different and it gives us a chance to give more relevant advice should you need it.

[charitygolfdays]

Hi everyone,

Just a quick note to thank you for all your messages today; I'm genuinely overwhelmed.

Having left the hospital yesterday clutching some WG information they'd downloaded from the internet (and we'd already read!), it was of great comfort to find this forum last night and start to read about you all.

Ju had been suffering with what started out as our doctor saying it was Glue Ear, coupled with a sore throat, blinding headaches and, over the last few weeks constant coughing. This started to make her feel very low and having gone down various antibiotic routes and treatments our doctor organised an appointment at our local ENT department.

The consultant thought it was WG straightaway, although the blood test results only came through yesterday which was a little frustrating, having seen how poorly Ju was last week. Anyway, at least the consultant send for the right blood tests!

When we saw him again yesterday morning, even without the final blood test results, he sent us over to the Rheaumatogy Dept where we started to get some action from the team there.

It's all still a bit of a blur this morning to be fair; so much information about the treatment and I'm afraid I can't add any fancy numbers of levels of dosage at the minute.

Suffice to say that whatever steroid they have started to give Ju (tablet) has started to make her feel better already. i got a text this morning saying she felt better than she had in weeks; which is great news.

Monday is the first bout of chemo, although I think you guys call it something else and, then another bout a fortnight later over the next 6 weeks.

Naturally, I'll keep you all posted and try to update the levels/dosage information when I have them.

Thanks again for all your support; I'm trying to get around to sending you all a private message and look forward to introducing the star of the show to you next week when she's home.

Jase

[Hammy8241]

Monday is the first bout of chemo, although I think you guys call it something else and, then another bout a fortnight later over the next 6 weeks.


Just in case they did not explain, the chemo drugs that are normally given does not necessarily mean hair loss, sickness etc. as the doses given are very much smaller than they give in treaing Cancer. That said we all react differrently to the medication. I know I worried about it until I was 'educated'.

[Jack]

Hi Jase,

Glad to hear that your wife had an early diagnosis and has been referred to the Rhumy dept. I hope they are up to speed with their knowledge of Wegener's. It is a difficult disease to diagnose because there is no definitive blood test to confirm it, the results just give indications that Wegs may be the problem. The only definitive test is a positive biopsy result, but it is often not possible to obtain this.

With her diagnosis and good response to treatment so far, I would think that the prognosis is good.

[Sangye]

It's incredible that she was dx'ed so quickly. A thousand gold stars to the doc who ordered the right test straight off the bat. :)

[Doug]

Jason - You will find that this forum is great for after remission sets in or a "new normal" begins because we are in so many stages of the disease here: No matter where your wife's medical condition finds her, there probably is someone on this site who is there, too. As Jack noted, the definitive diagnosis of WG comes through sinus, lung, and/or kidney biopsies, but it sounds like her doctors are doing exactly what they need to do so she is turning around, starting to be better. That's the best news of all! Once she's home, perhaps she can come on board with you and tell her story from the patient's perspective.

[pwc51]

Like many others responding here I am in the UK too. I was diagnosed almost exactly a year ago, when I was hospitalised for a week. After 9 weeks off work followed by another 3 months part time I returned full time and live an almost normal existance with considerably reduced energy. I have to travel a certain amount for work - recently been to Norway and the US and flying does not seem to be a problem now, providing I can get my feet up on long flights. I have to avoid countries requiring Yellow Fever injections as this is one jab that cannot be given with a dead vaccine. My company cover all the insurance requirements for these business trips. Have not been abroad privately as I have not felt fully confident of my condition when looking after myself and I know holiday insurance premiums have almost quintupled since diagnosis (unless anyone knows otherwise).

I had 6 months of Cyclophosphamide, together with pred and then transferred to mtx and pred. Just saw my consultant and he has increased the mtx and pred as he felt I had not quite reached the remission state that he thought I had 3 months ago, though I could not tell too much difference! At diagnosis I could not climb a flight of stairs without becoming breathless. Once I could start walking again, about 3 weeks after diagnosis, I increased my effort from daily 15 minute walks to daily hour walks. walking over up and over the downs, without getting breathless. Once back at work fulltime the daily walks became impractical so I only manage about once per week now when I walk just over 4 miles in a little over an hour.

As you will see this forum contains members with every variant of WG known to man (or woman) so no two stories are the same - what you will find are folks with symptoms similar in some areas and different in others and hence subtle variations of treatment. However, over time, you will get a feel as to whether your wife's treatment seems to be about right.

Don't be afraid to ask if you need answers to a specific question - jusr bear in mind you may get several answers as there are many knowledgeable members watching our every move!

[pberggren1]

I am so glad to see more members from the UK on here. I am not saying that I want people to have Wegs. I just like the posts from the UK and I am a night hawk so I can usually find someone up in the middle of the night.

[elephant]

Phil do you find that the Bactrim gives you insomia?

[pberggren1]

Phil do you find that the Bactrim gives you insomia?

Not really. But I am not sure. I find I sleep so much and then when I do have a really good and day and wake up early I tend to over do it and then am wiped out, so to speak, for the next few days. I just have to learn to pace myself. It probably is the Bactrim that has been doing this the last couple of weeks or so.

[charitygolfdays]

Quick update on Ju's progress.

I got a txt from her early this morning and she felt a million times better than she had during the last few weeks.

Ju had one dose of Methalyprediolne (50mg) followed by two water flush injections. She sweated for England last night and they had to change the bedding twice; bless.

Her voice, while still a bit croaky, was a lot clearer than the whisper we had grown to know during the fortnight and it was refreshing for all to see such a change.

Ju has had another dose of 50mg tonight so we will see how she is feeling tomorrow afternoon when I visit.

A bit of a roller coaster ride emotionally as the full extent starts to kick in for us all. I cancelled our holiday today (we were off to Cyprus next week!). All covered for the cancellation and I note your comment above pwc51 with interest with regards to future travel and insurance arrangements.

This brings me to think about the varying response to WG amongst insurance schemes. We have a policy which covers our mortgage called Life & Critical Illness. Amazingly, considering the nature, severity and long term health implications of WG, the policy doesn't class WG as a Critical Illness.

Yet, when it comes to travel, it's right up there the worst of the lot to get any cover.

I was informed by the policy helpline that Julie have a lung or any other organ transplant as a result of WG, then the policy would cover us!

We also have a bit of a challenge when it comes to Julie's job. With her immune system all over the place and vulnerable to infection, I guess being a healthcare nurse at a doctor's surgery isn't teh best of working environments to be in! Not to many well people walking in and out of that place the last time I looked!

Ju also works at a Horse Livery Yard where she teaches and rides to a fairly good standard. What to do with our horse is another question worrying her.

having said all that, it is tremendous to see a bit of the old Ju back again while, under no illusion that there are many bad days ahead of us.

Thanks again to all your responses; Ju was touched when I showed her some of the messages appearing on my phone when I went in tonight.

More news when I have some.

Jase

[elephant]

If I take the Bactrim once a day I can sleep, but twice a day causes insomnia, I can not fall asleep...until 3:00 am! Yesterday I purposely didn't take two pills, I needed my sleep!
Yea, it's a vicious cycle cause you feel that you slept well and want to use that energy and then bam your exhausted!

[pberggren1]

Jason, Wegs is a tough struggle. Julie needs you more than ever now.

We will all be here for you and Julie.

What is Methalyprediolne?

[charitygolfdays]

Meth is a steroid Ju is being treated with over the weekend in advance of her chemo treatment on Monday.

Jase

[pberggren1]

Do you know how much cytoxan she will take on Monday?

[charitygolfdays]

I'm afraid I have no idea. I may be able to find out tomorrow. The staff are very good. We asked them about the medication and they went off and told us; no fussing.

So, hopefully the notes re her treatment for Monday will be avaiable and I will update the forum when I get back tomorrow night.

[pberggren1]

I hope you and Julie have a good nights sleep. God Bless

[Sangye]

Jason, many things will sort themselves out in the coming weeks. As hard as it sounds, don't worry too much about whether Julie will be able to work, the horse, etc... Wegs can take many surprising turns, including surprises for the better. Some people are in terrible shape at diagnosis and bounce back surprisingly quickly. And some don't. There's absolutely no way to predict how she'll do, so for now just deal with what is actually happening.

[DEE]

jase
ditto to what Sangye said take each day at time i use to worry about work i work in a primary school , breeding ground for bugs etc but it took awhile to realise my health comes first
hang in there both of you things will start to improve
take care of each other DEEx

[Deanne Hull]

Hi Jason, welcome from Perth Australia, I hope your wife shows some improvement very soon.

[Doug]

Jason- Let me join the crowd advising you and Julie to avoid panic over the future. Be calm (you may have the hard role here, as a major part of Julie's support group), take each day as it comes. Write down everything that comes up in a notebook, something that fits in a pocket, and go over it each day to establish a priority to complete it or deal with it. You can organize the book by date to complete or however best serves your needs, but the main thing the notebook does is help with anxiety because you have important and small things written down where they won't be forgotten! (Busy work helps with anxiety, too!) Actually, from what I read in your posts, you are handling this tough time a lot better than you give yourself credit for! Keep it up!!

[Hammy8241]

Quick update on Ju's progress.


We also have a bit of a challenge when it comes to Julie's job. With her immune system all over the place and vulnerable to infection, I guess being a healthcare nurse at a doctor's surgery isn't teh best of working environments to be in! Not to many well people walking in and out of that place the last time I looked!

Ju also works at a Horse Livery Yard where she teaches and rides to a fairly good standard. What to do with our horse is another question worrying her.



Remembering that we all react to WG/meds differently, I should not worry too much about work and the horse. I work in the sewage industry with all the related problems that could bring. Inoculations are available and should be offered to you when the time is right - if not ask, Ju works in the right place (and she can educate the Drs)! Whilst these are not 100% infection proof, life is for living and many of us have a good standard of life including work and pets/horses/hobbies etc. All is needed is the awareness of your body and to react to changes a little quicker than before diagnosed with WG. Treat it with respect, yes, as it is a serious illness but do not be afraid of it. After 2 weeks on meds I was climbing the wall to get back to work and hope that Ju's will feel the same way soon.

[pberggren1]

Nice posts there Doug and Hammy.

[pberggren1]

Marta: If you are awake i sent you a private message and an e-mail.

[Hammy8241]

Marta: If you are awake i sent you a private message and an e-mail.

Not got a few hours spare for a quick phone call then Phil?:D

[staystronglivelong]

Hi everyone,

Just a quick note to thank you for all your messages today; I'm genuinely overwhelmed.

Having left the hospital yesterday clutching some WG information they'd downloaded from the internet (and we'd already read!), it was of great comfort to find this forum last night and start to read about you all.

Ju had been suffering with what started out as our doctor saying it was Glue Ear, coupled with a sore throat, blinding headaches and, over the last few weeks constant coughing. This started to make her feel very low and having gone down various antibiotic routes and treatments our doctor organised an appointment at our local ENT department.

The consultant thought it was WG straightaway, although the blood test results only came through yesterday which was a little frustrating, having seen how poorly Ju was last week. Anyway, at least the consultant send for the right blood tests!

When we saw him again yesterday morning, even without the final blood test results, he sent us over to the Rheaumatogy Dept where we started to get some action from the team there.

It's all still a bit of a blur this morning to be fair; so much information about the treatment and I'm afraid I can't add any fancy numbers of levels of dosage at the minute.

Suffice to say that whatever steroid they have started to give Ju (tablet) has started to make her feel better already. i got a text this morning saying she felt better than she had in weeks; which is great news.

Monday is the first bout of chemo, although I think you guys call it something else and, then another bout a fortnight later over the next 6 weeks.

Naturally, I'll keep you all posted and try to update the levels/dosage information when I have them.

Thanks again for all your support; I'm trying to get around to sending you all a private message and look forward to introducing the star of the show to you next week when she's home.

Jase

Hi Jase

Sorry to hear about your wife being diagnosed with Wegs. My husband was diagnosed on June 31st. His story sounds similar to your wife. We are in nottingham, england. The hubby was started on 60mg of Preds and started to feel better immediately. And his dose is being lowered by 10mg each week until he got down to 35mg which they seem to be keeping him on for the time being. He was dx'ed on the thursday, admitted to hosp the next day for intravenous steriods and started cyclophosphamide by drip on the monday. So far he has had 3 chemos and has been feeling fine, he has got to have 3 more. The chemo started off 2 weeks apart, now its going to be 3 weeks apart. They said today his blood inflamation is going down so that sounds incouraging. The side affects hes getting (which I think are from the steriods) are weight gain and spots. Its a great shock to learn, I know how you feel. I struggled to come to terms with it the first week but we can beat this. Hoping your Ju has a very good response to the treatment and gets good care taken of her. All the best. Lin x

[charitygolfdays]

Well, the star of the show is now home!

A roller coaster ride of a weekend saw Ju start her 1st chemo dose this afternoon and, we left clutching a bag full of pills.

Ju is still coughing a little but, not 24/7 as she was by the end of last week. The steroiads certainly got her smile, and appetite back!

Quick dosage breakdown for you all...

Co-Trimoxazole 480mg Tablets - 2 every day at 17.00 - Dose 960mg

Omeprazole 20mg Capsules - One every morning - Dose 20mg

Prednisolone 5mg Tablets - Six every morning - Dose 30mg

That's the science lesson over and done with. I'll have to come up with some abbreviations as I'm using letters on the keyboard I never knew existed!

Our television is back on OAP setting for the volume, as it appears that some damage to Ju's ears has occured, although we won't know for sure for a while yet. She can't hear in her left ear at the moment.

I found a website which appears to have been launched this year, click this link (http://wegeners.org.uk/). Could prove useful for us all unless you've come across it before?

Tremendous thanks to you all for your continued input and support.

Jase & Julie

[Sangye]

Glad to hear Julie is back home. She'll be feeling better and better Wegs-wise as the chemo kicks in.

[Hammy8241]

Glad to hear Julie is back home. She'll be feeling better and better Wegs-wise as the chemo kicks in.

Ditto......

[elephant]

Glad Julie is eating and enjoying her home. She will start to feel better soon.

[Lightwarrior]

Charitygolfdays,
I am the Clinical Nurse Expert in an ICU and I still work full time. I have to stay in my office and off the unit when my white count is below 3.5 (this is going on week 5 and I'm tiring of my office) I just use a lot of common sense, if I have to go into a patients room I wear a mask and wash my hands a lot. The Doctors and nurses I work with are very protective of where I go..so if I forget they don't. I hope that your wife will find that her co-workers will be supportive, she may have to teach them about Wegener's and protect herself extra on days when she is lower.

[LisaMarie]

Jase and Jill welcome to our group...I am also newly diagnosised and learning alot...I want to commend you on how supportive u are being....not all of us have that bonus...from family and or the health care world...I am a nurse and change from the rapid pace world of ICU med/surg/teley and stress test to concurrent reveiw and core measure desk job....i wear a mask on the floor ...and constantly wash my hands.....WG is a horrid roller coaster ride....I have trach....right jaw...right sinus...heart and possible new eye and ear .....like everyone has said we are all different in how it affects us.....please feel free to vent share and laugh with us......glad therapy is working for your wife...I start rituxan this week or next.....

[DEE]

HI jase and ju
glad your home so nice to be able to sleep in your own bed !
take things easy rest as much as you can andcarry on ben there for each other
i dont know ere i would be without my hubby s support
take care wishing u a better day just take each day as it comes DEE x

[Hammy8241]

If you have not thought of it already, don't forget to set up a pre-payment prescription card.

[DEE]

Jase
im on oral chemo and several other drugs and used to pay for pre pay prescrip cert
but was told to ask the doctor for an excemption (sp) form by the hospital pharmacy
i got one granted now i dont pay for any meds its a life time cert
hope this helps as i did not know for the first six months DEEx

[Jack]

DEE - how did you manage to get an exemption cert? Which category do you come into? I have always understood that I can't get free prescriptions and have always paid the annual fee.

[Hammy8241]

DEE - how did you manage to get an exemption cert? Which category do you come into? I have always understood that I can't get free prescriptions and have always paid the annual fee.

Ditto... I feel cheated:D

[DEE]

I didnt apply for it on my own my gp helped me he did have a thick book to read through to find how i would be accepted
i have thiteen different tablets a month plus compression socks cream and bath lotion maybe every two or three months dont know if it makes a different and ive been on chemo tablets for over a year
apparently it has to be done through gp and they dont have to tell you about it you have to ask a friend told me about it
they looked on the fact that diabetics get it free ?
i didnt ask just know itbwas taking a large amount of my wages each month and as i dont get any benefits to qualify that way it was worth asking
and as i said it was the hospital pharmist that said i should not be paying as i used to collect my drugs through them
i hope this makes sense DEE x

[Jack]

Maybe you have something that I don't.
I've re read the exemptions - Free or Reduced Cost Prescriptions | Health | Patient UK (http://www.patient.co.uk/health/Free-or-Reduced-Cost-Prescriptions.htm) and I can't see how I can qualify. :(

[DEE]

Jack i will try to remember to ask one of them when i see them next
all i know is we would find it harder if i didnt have this every lottle helps im now on my seventh month of work !! DEEx

[pwc51]

I have heard from other sources (I will try to find the reference) that it is possible to get free meds for WG but it did seem somewhat marginal and quite complex to qualify. Like others I currently pay the annual prescription fee

[eileenv]

Hi there Jase sorry to hear your wife ahs been diagnosed with WG, I'm currently waiting for a conformation myself of WG. I'm in Romford, not far from you.

[charitygolfdays]

Just another update for everyone.

Ju had her second dose of chemo today. Blood results came back without anything major to worry about; a small amount of blood in her urine; again not too much for the doctors to get excited about.

Medication has been reduced from 30mg per day to 20mg per day for the next fortnight.

After the third dose fo chemo they'll look to reduce medication to 15mg per day and, increase the intervals between the chemo to every 5-6 weeks.

Came as a bit of a shock to be told that this would continue for next 6 months at least. We're lucky that Ju's job has been held open ready for her return. As she works in a Doctor's surgery they don't want her to go near anyone with any sort of infection.

No side effects as yet. Ju still gets tired towards the middle of the afternoon; she has at least learnt to listen to her body and just go and rest rather than continue.

We still need to learn about recognising any early signs of 'flare ups', as we don't really know how the Autumn/Winter weather will effect things. We're continuing to keep a diary of any changes, meals, fatigue etc to try and help things.

In the meantime I'll have to start thinking about a T-Shirt slogan. The only 'Weggies' I know are the ones from my school days; which weren't very pleasant! ( Having your pants yanked up your backside for those who don't know!!)

Thanks for the support again Guys and Gals.

Jason

[JanW]

Thank you for the update on Ju. Keeping a diary is an excellent idea and I did it in the early days. I stopped when every day started looking the same and my bloods returned to normal.

[elephant]

Good to hear from you Ju. I am doing the same, keeping a diary.

[Sangye]

Thanks for keeping us updated. I started a daily journal a few months ago. Very useful. I never would have figured out certain trends without it, and since every day kind of blurs into the next, I would have trouble remembering when a symptom started or I changed drug dosages.

[alive and kicking]

Hi Ju and jason.

I was diagnosed on august the 9th 2010,so i know exactly how you're feeling, i had pulmonary hemorrhaging when i was on hols in spain in july,and after icu for 2 weeks,a week on a ward,and then being flown home to uk, for another week in local hospital........i was sooooo glad to be home, so i send you my love,and understanding,and we can help carry each other and all us weggies through this 'new' life xx

[charitygolfdays]

Hi Everyone,

Quick update for you all.

Last Friday we visited the ENT clinic at Winchester hospital and met a Dr Patel. We hadn't met him before but were assured as he introduced himself as a weg's specialist for the area.

very interested in everything which Ju was feeling, experiencing etc and, was very pleased with the progress Ju has made during the last few weeks.

Looking at her windpipe again he doesn't feel the need to operate to stretch it so that cheered Ju a bit.

Ju's next bout of chemo was yesterday (Wednesday) and today has been a bit of a low day for her. Feeling sick and very tired mainly. No blood was found in her urine yesterday which is great news but, there was no-one around to chat through the next stages so we await a phone call. i will call them tomorrow to find out how things will progress.

Still taking 20mg of steroid each day although the chemo is being lengthened to every 4 weeks instead of each fortnight.

That's about it for now; thanks for all your support and thoughts.

Jase

[Sangye]

That's great, Jase. Glad to hear she's doing well and things are moving in a good direction. :smile1:

[elephant]

I second that, good news Jase!

[DEE]

Good to hear from you again Jase and that things are going well :thumbsup: DEEx

[charitygolfdays]

Good morning to you all; it's been a while I know but we've been slowly plodding through.

Just a quick update following the last of Ju's chemo sessions a couple of weeks back. It's amazing that we've been through six of these now.

I think we're fortunate in that we've had no major side effects from the chemo...no hair loss and, the blood test results have all been very positive/clear.

We've also seen a gradula fall in the steroid levels as well; now down to 9mg per day!

We're now embarking onto a new tablet regime to continue the treatment; in summary to the above steroid intake...

1 x 20mg Omeprazole Capsule (taken AM)

1 x Co-Trimoxazole (taken 5pm)

1 x Azathioprine 50mg (taken after dinner)

Ju has only been taking the Azathioprine for the last week, so perhaps it's a little early to see any side effects. Ju battled with some sickness during her chemo which was countered with lost of flushing during the treatment meaning she spent most of a whole day each time in hospital, so the doctors have been a little wary about the Azathioprine.

Ju is now having blood tests each week so that the doctors can keep track of things closer.

On the more postive side of things...

The ENT doctors are dleighted with her progress and don't want to see her again till April 2011, and the same can be said of the respiritory team. Her CT scan and lung function tests have been excellent and they too have discharged her from their check ups.

So we meet 2011 head on with continued optimism that we've got some control. Ju is looking forward to the continued lowering of the steroids (and dress sizes) as the year continues. I'm looking forward to being alittle more active with Ju's progress here on the forum and to organising a charity golf day for WG during year as well.

Thanks to you all for your support.

Jase

[Jack]

Glad to hear that things are progressing well. Azathioprine is relatively free from side effects as these things go so hopefully there will be no trouble there. Lowering the steroid dose is great news, but can get tricky as you get towards 5mg as you probably already know. Hope it goes well in the new year, Jack.

[Sangye]

What a wonderful way to end the year, Jase. It always brightens my day to hear good news from another Weggie. Big hugs to Ju. :thumbsup::hug3:

[DEE]

:thumbsup:Great news Jase a good way to start the new year :thumbsup: