Please help.

[CATBURNETT]

Hi, I am just new to the site and I am desperate for some help. My dad is suffering from Granulomatosis with polyangiitis (GPA). He got diagnosed eventually 3 years ago after being admitted to hospital in the January with a very swollen and painful leg and foot which they thought at first may have been cellulitis. He became very tired and started to loose weight very rapidy, then became very weak and lost his appetite. he was also confused at times. He started to loose his voice and was spitting up blood before he was eventually airlifted to a bigger hospitial ( he lives on an island) in the March where he got given his diagnosis of GPA after having a kidney biopsy. He was put on cyclophosamine, steroid, azathioprine and other pain relieveing and vitamin and mineral drugs.

Over the past year he has been suffering from extreme pain in his hip/lower back radiating down his leg and the pain is getting worse as time goes on. He shuffles to walk almost like you would imagine a patient with motor neuron disease since his diagnosis but i see it getting worse as time goes on. He has had numerous physio appointments and injections to try and relieve the pain with no success over this period and over the past couple of weeks he has been put onto Amitriptyline, I am aware this can take a few weeks to work. He now seems to sleep alot of the time. I was so concerned that it might be a relapse so they did a blood test at the GP and said that his bloods were fine but I just cant understand how he seems to be getting worse and no one seems to know what to do with him.

Can anyone advise of a specialist I could contact for advice? The more I read the more questions I have ( I am actually a therapeutic radiographer) and the more concerned i am that we are missing something. Can it be active without it showing in the blood tests. I feel so sad about it all. My dad has no qualityof life. I dont know where to ask for help.

Apologies for the long winded message, I am sure there are lots of other points I have failed to mention.

Cat

[Nadine99]

My husband has had GPA since 2010. The only bit I can relate to in your post is the leg/hip pain which my husband suffered with, had physio but turned out to be Avascular Necrosis, he had to have 2 new hips because of long term steroid use.

It might be useful for you to speak to the Vasculitis UK Helpline, go to the site to get more information, I'm not sure how to add the link but someone else may do so soon.

Good luck & best wishes to your dad

[Hidden]

Hi,

I am part of the VUK helpline team. Please feel free to contact me on [e-mail] and I will try to help in any way I can. Happy to have a phone conversation as well, it sounds like you may be based in Scotland as am I.

Reading your post I get the impression that your Father is mainly followed up by the GP which would be very unusual. Vasculitis can flare with normal bloods, symptoms are just as important.

Best wishes

Lynn

[Hidden in reply to Hidden]

The helpline details

vasculitis.org.uk/helpline

[KirstyW1999]

3 years ago when I had the symptoms of GPA similar to your dads , before the diagnosis, I had severe pain in my legs and arms. My G.P prescribed all sorts of meds, nothing eased the pain. I had lots of B/T, but they where all fine, until my kidneys started to give up.

I agree with the above it seems as though it's a flare up. He needs to see a specialist.

I am under the team at Addenbrooke's and they have told me to contact them if I have any signs of flaring.

I hope he gets the help he needs soon.

[moon71]

Hi Cat,

My dad's story is similar: he got diagnosed with cryoglobulinemic vasculitis 2,5 years ago. It started in the feet and now he has flare ups in his stomach/abdomen/back and hip area. He does need both hips replaced but is too weak to have the surgery done.

My dad is often awake all night because of the pain. He can't lie down to sleep. He has to sit down but then he also doesn't sleep well.

He's now on a high (30 mg) prednisone dose (for a month). He usually only takes a low maintenance does. He only started a few days ago, so we're waiting for it to kick in.

You said his blood is 'normal'. I'm wondering though what they're testing for. When it's a vasculitis flare up, his blood should show a high sedimentation rate as vasculitis is some sort of inflammation. What specialist is he seeing? My dad has been seeing a rheumatologist.

I know it's very discouraging. My dad gets all kinds of tests, scans, biopsies, echoes, etc. and everything shows up 'normal', yet he's in so much pain most of the time. Can't sleep, can't walk, can barely do anything and is now getting severely depressed to top it off.

I agree.. he needs to see a specialist, if he hasn't yet. Most GP's don't know what to do with this.