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

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.

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

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.