Portsmouth uk, newly diagnosed

[alive and kicking]

Hi all,
I am newly diagnosed,after original diagnosis of psoriatic arthritis. Now we know the arthritis was a symptom of wegs.

I have had nasal drip for about 2 months,arthritis for 8 months.Hoarseness,sore throat, all the usual smaller symptoms, that without even having heard of wegs,you wouldn't put them together.

My daughter and i were due to fly to lanzarote on the 8th july this year. the night before i noticed a large blood red bruise on the inside of my leg,and a raised red lump behind my knee,and my ankles were swollen. So at midnight, i saw the duty doctor, who said it was nothing to worry about,of you go on holiday,so we did.
Arrived thursday 8th, i was getting more and more tired each day, started to cough too. Saturday 10th coughed a small amount of blood,then nothing, again on sunday,hotel doc gave me a shot of penn. and said i should feel better, if not come back and have an xray. So the tues had xray, they thought it was pneumonia,right lung was almost full. The weds night i was hemorrhaging blood everytime i coughed, was transferred to the main hospital on the island on thurs night straight to icu! What a shock,so fast and confusing,everyone speaking spanish, foreign country,had to leave my 14 yr old daugter in a small hospital on her own as she couldnt go to icu with me :(
Anyway, i was given a 30% chance of survival,both luns full of blood and fluid, my family flew out to be with me. I was on a bipap ventilator for almost 2 weeks,cyclo,massive amounts of prednisone,fought like merry hell,4 weeks of hospital AND I AM HOME!!!!!! ALIVE!!!! And i am so very grateful
I have all the usual side effects of the treatment and from what ive been through, but oh my!! LIfe is such a wonderful thing, no matter what type of life it is, i have little use of my legs, eyes,hearing affected. lungs still have a long way to clear,hair loss- but whats hair! moon face, swelling/fluid going down at the moment.
Am still on 60mg pred a day, then will add something else when down to 20mg.

I want to say hi and well done all you strong weggies,dealing with this condition everyday :)
And i am so glad to have found you x

[elephant]

Welcome Alive and kicking, glad you are feeling better after that horrible ordeal! I was wondering if your seeing a Wegeners specialist? They usually see 100's of wegeners patients and are able to give proper treatment. Their are several people on this forum who live in the UK and can help you find a specialist if you don't have one.
You will start to feel better, your joint pain will subside eventually. Did you have a hearing test yet? Your hearing might improve. How are your eye's? Did you have a Ct scan of your eyes ( orbitals)? Thanks for sharing your story. Wish you the best!

[alive and kicking]

I only flew home a week ago,and was in my local hospital until weds this week. My GP is useless, will be ringing them again today to give them a quick kick in the behind. My rheumatologist is following up and also the respiratory specialist. This is all new to me so any info and ideas will be gratefully recieved,we've basically been left in the dark,sent home with pills,and the usual "wait for your follow up appt" So we shall get on to it today.
Concentration has been on finding out what it is,and why. As the only thing i flew home from spain with was a 2 page form, written in spanish! So my hospital have been fumbling in the dark with no info. I think/hope the eyes are blurry etc due to the prednisalone. But unfortunately,my father has glaucoma,so thats a worry. I will get the hearing test done as soon as i'm well enough,its my right ear,left is fine,so i can still hear. I'm learning new things everyday,and a lovely lady on facebook sent me the link to this site,which has helped enormously :)

[Jack]

Hi and welcome to the forum. :)

Sounds like you've been having a rough time, but you were lucky that someone was clued up enough to diagnose Wegener's. Hope you have not suffered too much damage and will continue to improve now that you are being treated. I'll ask the standard question - what meds are you taking and is your consultant experienced in treating Wegener's? It is a tricky disease that does not follow a book of rules and you will be relying largely upon the knowledge of your doctor.

Look forward to hearing more from you.

[Hammy8241]

Hi, I'm being treated at QA Pompy where I presume you are/ will be too. I'm under Dr McCrae, Rhumy. Sugguest you ask to see her as she seems to know what she is talking about and listens too. Treatment at QA was very efficient and without much waiting too. Exceptions are the ENT where waiting can be a problem and the hospital pahrmacy where taking a packed lunch is often a good idea. Maybe see you in there one day:drool:

If I can help further then just let me know.

[DEE]

where waiting can be a problem and the hospital pahrmacy where taking a packed lunch is often a good idea. :rolleyes1:

Must be a uk thing sometimes can be waiting over an hour in pharmacy but sorted out when i see wg consultant he gives me a regular prescription to take to chemist or fax what i need to my gp who has prescription ready for me when i get home (gp surgery at top of road )

just a thought once was was going to collected meds for my hubby and I when he got swinflu , i rang to see if they were ready the nurse said i could not get them that a pharmacy / chemist was not a place for someone immiune supressed to be , when i ask why she said
think about it most people are there because they are ill and how do you know they are not carrying something that could be past on EG airborn infection etc
just food for thought
DEEx

[Hammy8241]

Must be a uk thing sometimes can be waiting over an hour in pharmacy but sorted out when i see wg consultant he gives me a regular prescription to take to chemist or fax what i need to my gp who has prescription ready for me when i get home (gp surgery at top of road )
[/QUOTE]

I'm on mex injections so I have to use the hospital Pharmacy..........regrettably:flapper:

Nothing personal Dee - just wanted to use the smilie!

[Sangye]

LOL-- You UK'ers might have the monopoly on clotted cream, but I'll meet your long wait times with a few of my own! Many of my docs are routinely several hours late.

[Sangye]

Hi Alive and Kicking, welcome to the group. I lived in Spain back in the 90's and hope their medical care has improved since then! I had a pretty bad experience....

Glad you got dx'ed quickly. Please follow Jack's advice and get a Wegs specialist involved asap. A regular rheumatologist can't do it.

[Jack]

we've basically been left in the dark,sent home with pills,and the usual "wait for your follow up appt"
The standard of treatment you are receiving is just not good enough. Wegener's can kill you if not treated correctly and any delays in taking action required due to changing blood test results or symptoms can result in serious permanent harm. I don't mean to scare you, but we have lost several members of the Forum this year, possibly because they did not receive the correct care. The drugs used for treatment are highly toxic and must be monitored closely. You must seek out someone who knows what they are doing.

[Sangye]

Ditto what Jack said. Wegs is not a typical disease.

[JanW]

I will add to that in saying that since my own case has not been, as of yet, particularly severe (I've never been hospitalized except for surgery on my trachea), I have been sobered by the fact that we have lost people here (I've only been here since January) and there are a few (many?) people, who have posted that I have had the niggling feeling are not receiving the 'standard of care' that they should be, and, perhaps, as a consequence, are sicker than they should be. Please take care of yourself and get someone to take this disease seriously. It really cannot wait.

[Geoff]

Wotcha 'Alive and Kickin'
Hope you are getting to grips with life at this moment. Its been almost 3 weeks since your last post on this thread. How are you? Have you managed to get your follow up appointments rushed thru? Like you I was taken ill on holiday overseas in Portugal. Fortuantely I managed to get on the plane back to the UK where I was admitted to Hospital. Take heart, there is life after WG but you must get looked at by somebody who knows what to look for etc. As a former resident of Gosport I would like to hear from you. Play Up Pompey!

[Hammy8241]

Play Up Pompey!

Bottom of the league?The only way is 'up':thumbsup::thumbsup:

Would be nice to have an update. As a local I'm also nosey:lol: (ok then interested)

[alive and kicking]

I lived in Spain back in the 90's and hope their medical care has improved since then! I had a pretty bad experience....



The icu was faultless, clean and efficient. But the ward!!!! Oh my! Dirty, the staff were awful,some cleaned my central line with no gloves!! not good.
~Thanks for your welcome :)

[alive and kicking]

My sister-in-law has worked with Dr McCrae during her training. She said she was really good and very helpful. How are you doing now? What drugs are you on?
Not had the delights of the pharmacy as yet :)

[alive and kicking]

Would be nice to have an update. As a local I'm also nosey:lol: (ok then interested)

Hi :) have seen respiratory and rheum, but am getting gp to refer me to McCrae as im not happy with rheum. my lung capacity is better now 61%. Still on 30mg a day of pred as symptoms have come back , so will need to start on a cocktail now :(
Have sorted a GP hes new, and very good, concerned and thorough.
My kidneys are now involved which isnt good,b ut having regular tests to keep an eye on it.
Am being referred to ENT as it now looks as if the septum is eroding.

How are you doing?

[alive and kicking]

The standard of treatment you are receiving is just not good enough. Wegener's can kill you if not treated correctly and any delays in taking action required due to changing blood test results or symptoms can result in serious permanent harm. I don't mean to scare you, but we have lost several members of the Forum this year, possibly because they did not receive the correct care. The drugs used for treatment are highly toxic and must be monitored closely. You must seek out someone who knows what they are doing.

Hi JAck,

Am now getting sorted slowly, looking to be referred to a new rheumatologist, gp is on the ball.
Respiratory has been sorted too now, my lung capacity is up.
But symptoms are back so i have to go back and sort the meds out again, theyve put pred back up til i get to my appt.

Hope you're doing ok

[Geoff]

Hi There A&K,

Looks like you are getting the required 'Hand' of consultants together. Dont let that Appt drift, how long till that one and is it with the ENT guy?

Given Hammy's suggestions you should get to see Dr McCrae as soon as possible. Hopefully they will be able to give you the comfort factor of having an Ace in your hand!

[Jack]

Glad to hear things are starting to turn around for you. It bothers me when people don't seem to be getting the right treatment because that sort of thing nearly killed me and others on the forum so it would be nice if new members could learn from our experience and not have to go through it themselves.

I'm having one of my better days today thanks. :)
Hope you are feeling OK too.

[elephant]

:hug3:Hi Alive and Kicking sorry thing got worse for you, but glad you have a new Rheumy. Wishing you the best and better health soon.

[Hammy8241]

My sister-in-law has worked with Dr McCrae during her training. She said she was really good and very helpful. How are you doing now? What drugs are you on?
Not had the delights of the pharmacy as yet :)

Sorry for delay in answering - been away.

It will good if you get on Fiona's list as i can ask for a referal fee.:rolleyes1: Hope you get on with her. I'm not due to see her until 15th Nov but at QA tomorow for bloods and collect my mtx injection sRe: ENT who are you seeing? Its the one area I have my doubts about but Dr McCreae is sending me to a new one on 4th Oct. Will let you know opinion. Main meds are pred 22.3mg and 20mg mtx. I feel that progress is being made but listen to my body as much as i can.

[elephant]

Glad to hear you are progressing Hammy ...hope your appointment goes well.

[Sangye]

I'm happy to hear you're making good progress, Hammy!

[Hammy8241]

Thanks guys.

I trawl throught he posts reading the peaks and troughs that so many here are going through, I know how lucky i was to get an early diagnosis and gained so much info from yourselves.

Your input has helped me as much if not more than the proffesionals - keep it up.:thumbsup:

[drz]

Thanks guys.

I trawl throught he posts reading the peaks and troughs that so many here are going through, I know how lucky i was to get an early diagnosis and gained so much info from yourselves.


Your input has helped me as much if not more than the proffesionals - keep it up.:thumbsup:

Early diagnosis and correct treatment are the main key to getting better. You are lucky to get an early diagnosis. There is also lots of info on correct treatment and help available here.

[alive and kicking]

Sorry for delay in answering - been away.

It will good if you get on Fiona's list as i can ask for a referal fee.:rolleyes1: Hope you get on with her. I'm not due to see her until 15th Nov but at QA tomorow for bloods and collect my mtx injection sRe: ENT who are you seeing? Its the one area I have my doubts about but Dr McCreae is sending me to a new one on 4th Oct. Will let you know opinion. Main meds are pred 22.3mg and 20mg mtx. I feel that progress is being made but listen to my body as much as i can.

I'm seeing her on friday 5th nov. So i will let you know what she says :)
on the downside had to start iv cyclo again friday,lung function is shot,back below 50% again.
And symtoms in general starting to take over again.Ct was still showing both lungs full of granulomas,and his words were he was petrified,for want of a better word, of the long term consequences,so high doses of cyclo are on the cards i'm afraid but i have no alternative at this time.
Well ok then, took them long enough, but my bloods arent playing the game , negative ANCA now but symtoms rife. But the good news is my kidneys are ok at the moment, thankfully.
Hope you're holding up ok :)

[Hammy8241]

I hope that she lives up to my expectations. Please consider taking a list of ALL your symptoms before diagonisis, after your first lot of treatment and where you currently are. I find I forget some if I try to talk 'on the fly'! She loves to answer your questions and is great at listening - honest.

I presume its your old rhummy reacting to your present flare?

I see her on the 15th so let me know how it goes,

[elephant]

Hi Aliveand Kicking, hope all goes well at your appointment. Sorry you lungs are in bad shape! Make sure you stay on top of your kidney function, WG is very sneaky!

[alive and kicking]

I hope that she lives up to my expectations. Please consider taking a list of ALL your symptoms before diagonisis, after your first lot of treatment and where you currently are. I find I forget some if I try to talk 'on the fly'! She loves to answer your questions and is great at listening - honest.

I presume its your old rhummy reacting to your present flare?

I see her on the 15th so let me know how it goes,

No it was Dr Neville respiratory, if you need to see someone there he is very good, has a bit of a rep for his bedside manner but i found him ok, and what he doesnt know isnt worth knowing.
Rheumy was disinterested,said it wasnt wegs cos my kidneys are ok,and hes never seen anyone with wegs with ok kidneys, so i decided i shant be seeing him again lol

I gave the respiratory team my list last time, its in my notes, but i have a few questions for her, i always have questions :) Theres a few about the cyclo, i want to know if it can change your heart, cos mine is now bigger and i have a murmor which i didnt have, and it races like i dont know what.

Oh what fun we weggies have!

Will let you know what she says

[alive and kicking]

Hi Aliveand Kicking, hope all goes well at your appointment. Sorry you lungs are in bad shape! Make sure you stay on top of your kidney function, WG is very sneaky!

Thanks elephant i will, i know i cant believe how sneaky it is, snuck up on me and gave me a good kicking i can tell you lol!
I know its not really to be laughed at,but with out my sense of humour i wouldnt get through it, if i laugh at it i stay in control, i guess we all feel that way

[Jack]

Wegener's affects the heart very often, but usually without symptoms. A Beta blocker will regulate the pace.

[Geoff]

I know its not really to be laughed at,but with out my sense of humour i wouldnt get through it, if i laugh at it i stay in control, i guess we all feel that way
I second that Emotion!
Good Luck on Friday, dont forget to take some notes or better still a syptom Diary.:smile1:

[Sangye]

Wegener's affects the heart very often, but usually without symptoms. A Beta blocker will regulate the pace.
I'm sure what Jack meant to say is that while Wegs itself does not often affect the heart, the drugs we're on often do. :wink1:

[drz]

Wegener's affects the heart very often, but usually without symptoms. A Beta blocker will regulate the pace.

I remember when released from hospital I was told I was at risk of a silent heart attack--no pain but might have indigestion or gas as only warning signs and should seek medical evaluation if this happened.

[Jack]

I'm sure what Jack meant to say is that while Wegs itself does not often affect the heart, the drugs we're on often do. :wink1:
That is true too, but I did mean Wegener's itself. It can affect the blood vessels of the heart in the same way as it does other organs. I seem to remember reading a paper reporting that the damage was commonly detected at autopsy even though not showing previous symptoms.

[manalolana]

Welcome home and bless your heart! What a fighter you are with such great attitude! Take care of you and welcome to the forum.

[alive and kicking]

Sorry for delay in answering - been away.

It will good if you get on Fiona's list as i can ask for a referal fee.:rolleyes1: Hope you get on with her. I'm not due to see her until 15th Nov but at QA tomorow for bloods and collect my mtx injection sRe: ENT who are you seeing? Its the one area I have my doubts about but Dr McCreae is sending me to a new one on 4th Oct. Will let you know opinion. Main meds are pred 22.3mg and 20mg mtx. I feel that progress is being made but listen to my body as much as i can.

She was great, thanks for the referral!:)

Shes the first of a dozen drs to share our concerns about me having a stroke in spain, so examined me and sending me for brain scan,and sinus scanned whilst i'm there.
We discussed drug regimes, wigs, symptoms, history, mobility,muscle weakness, loads of stuff. we were in there well over an hour. She's happy with Dr Nevilles diagnosis and treatment. I've got to have at least another 5 sessions of high cyclo ..yuk!
She's contacting Spain for my records, she said if i bled in so many places at one time,lungs,braun,skin,bladder etc,it would be very helpful for future referrence,for them to be aware that if i have a severe flare,just what my body does.
Hope you're doing ok

[alive and kicking]

Welcome home and bless your heart! What a fighter you are with such great attitude! Take care of you and welcome to the forum.

Thank you :)

[Hammy8241]

She was great, thanks for the referral!:)



Cool. I'll take a doughnut or two when I see her next... why should she have a good figure whilst I'm 'Pred' out!

Things going well currently thanks, pred down from 40 to 15mg, managed my first 5k yesterday in about a year with no reaction today. Fingers crossed!

[DEE]

Great news about preds reduction Hammy , im down to 15mg to but have some withdrawral symptoms i think
please take care of you ,you're the only one i can talk jelly babies with .which reminds me i have not had for a while .although hubby bought some for me on thursday when i was not feeling so good :drool: still in the bag :thumbsup:

[Hammy8241]

Was in Doncaster the other day and did consider coming to see you in Hull.......but i might have had to share my babies with you so thought better of it.lol

Go on... open that bag... you know it makes sense:drool:

[elephant]

That is great Hammy doing the 5 K! Yes, open that bag Dee!:thumbsup:

[DEE]

Hammy sooooooooooo near those babies , i live on the outskirts of hull so i am about 30/40 max from Doncaster.

j babies bag closed for five days saving for the next bad day !!!!! ,,,,,,,,,,,hopefully not soon although going for bloods this morning and my flu jab
hubby had his done last thursday and said only one now flu / swine flue together
did not bother me last year and only had one chest infection no colds as such ,so think it must be worth the risk :ohmy:

[Sangye]

I didn't have any colds or flu last year, either, and no flu shot. :flapper:

[Geoff]

Shes the first of a dozen drs to share our concerns about me having a stroke in spain, so examined me and sending me for brain scan,and sinus scanned whilst i'm there.
We discussed drug regimes, wigs, symptoms, history, mobility,muscle weakness, loads of stuff. we were in there well over an hour. She's happy with Dr Nevilles diagnosis and treatment. I've got to have at least another 5 sessions of high cyclo ..yuk!
She's contacting Spain for my records, she said if i bled in so many places at one time,lungs,braun,skin,bladder etc,it would be very helpful for future referrence,for them to be aware that if i have a severe flare,just what my body does.
Hope you're doing ok

Sounds you you are getting on the right track with your treatment regime. Hope that you get some real progress shortly!!