marion

[mars19750]

Hi im Marion and I am 33 years old and i was diagnosed in dec 2006 after a gruling 5 months of operations an tests to find out what was wrong . I have been in remission now for 1 year but have been told I will have to stay on medication for the rest of my life. I am very lucky I have a great Consultant who looks after me and has got the medication spot on first time. I have not came across any one else with this disease even at my clinics so it was great to find this forum to see what other people have gone through.

[Derek]

Hi Marion

Welcome to the site. If you look round you will find a lot of information about WG. Glad you are in remission but do not get complacent as it will creep up on you. Take care and look after yourself.

Derek

[Jack]

Hi Marion, welcome to the Forum.

After two and a half years, I'm sure you have learned a lot about you condition, but there is always something new it can throw at you! Be prepared to tackle each problem as it arises and make changes to medication accordingly.
Hope your initial problems did not cause too much permanent damage. Tell us your story if you have time.

[mars19750]

It first started in August 2006 that I had a bad cold that would never go away then I was sent for x-rays and they thought I had pneumonia and after 4 weeks was sent for a further x-ray only to find the cavity had got larger. I was then sent to Aberdeen royal Infirmary for a bronoscopy but did not show up any thing then the following day the gave me a fine needle aspiration which I thought was horrific only to be told they could not find anything . As this was happing i lost a lot of weight and just was not fit to look after my children who were only 4 and 7 At this point in our lives we were staying in a caravan as we were building our new home! STRESS.
The Doctors could not figger out what was wrong to i was sent for CT scan only to find i had a cist on my liver so was then sent for a PET scan which also showed up nothing! I was then put on morphin for the pains I had in my chest as i could not cope any more only to find out it was poising me so my GP made me go cold turkey which now when i look back is just a blur but i do remember the cold sweats.
At this point i put my foot down and said they have to do something as i could not cope with everyday life, so they sent me for an operation to check limph nodes in my chest as they thought i had a cancerous tumer in my lung and thought it was a matter of time i would die from it. I was then told it didn't show up anything and said they should never of done the operation (which was nice to hear not as im am very badly scared from this operation.
My GP then asked me to come and see him and to make sure I had my husband with me.
He proceded to tell us I had TB and asked if i would give a urine sample which i did as this was the first time since August i was asked to give one ( not even when i was in the hospital was I asked for one)
It was then my GP found large amounts of blood and was sent straight to aberdeen hospital which was over 70 miles from whwere we live.
That day in dec My consultant told me he thought I had WG and was sent for a kidney biopsy which confirmed the problem .At this stage I was told I was very ill and didn't have a good chance of survial but they started the medication and it worked 6 months pasted and I went from strenght to strenght but then the Azaioprine ( sorry cant spell) did not agree with me so i was changed to Mycophenolate 3 times aday which from then i have had no problems.
My only complaint is my nose bleeds which are bad and quiet often get chest infections.
my medication im on now is
500mg mcyophenolate 3 times aday
5mg prenisolone
20mg omeprazole
10mg ramapril
1mg doxazosin
40mg furosemide
I have to see my Consultant every 2 months but I am very lucky as he will see me a short notice if I have any problems.
The way i see it is if it was not for Dr fluck and Aberdeen royal infirmary i would not be here today.

[Jack]

Sounds like you had a close call there! My own sinus and nose bleed problems cleared up as soon as I started treatment, but I did end up having to have a renal transplant. Your medication sounds about par for the course although the amount of pred you are taking seems quite low. Perhaps increasing it would help your nose?
If you suffer from nasal congestion, I can recommend saline irrigation (neti). It used to work well for me and is gentle enough to allow your nose to recover and not bleed as often.

[mars19750]

The doctors have been reducing my pred slowly and I must admit my nose seems to be getting alot better so far so good.

[Sangye]

Marion, I'd recommend getting a consultation with a Wegs specialist, even if you're happy with your current doc(s). Your frequent "chest infections" can certainly be Wegs in disguise. It takes an expert to tell the difference. I've been having the same thing for months, and it's only in retrospect that we can tell it's been Wegs increasingly flaring up.

And, nice to meet you!

[RCOSSIO]

I notice you take Mycophenolate 500mg 3x daily...Not sure but maybe you should switch to the brand from Roche lab "Cellcept" I'm not saying one is better than the other but i always question some generic and where they are manufactured, especially since the FDA only ensure the ingredients of the generic is similar to the brand but never measures the delivery of the medication.

Anyway...I take Cellcept but I take 500mg 3 x morning and 3 x evening...it may be because height and weight not sure. But ask your doc if the regime for your mycophenolate should be increased if your Wegs is acting up.

[Jack]

I had a list of approved medications from my clinic a few weeks ago due to the confusion over generics. Mycophenolate was given the all clear.

[mars19750]

I am on the brand Cellcep But I have incountered a problem as my chemist is finding it hard to get this drug I have ended up writing to my MP and they are now in talks with the health minister as they are saying its a distrubuition problem, but my chemist says it money that is the problem .SUPRISE SURPRISE
When you get a prescripition from your GP you take it for granted they can get it for you! I am now going month to month wondering if I will get my medication.
The drug must be working alright as my consultant does not want to put me on an alternative!