GPA – The Killer Disease No One Knows About!

I let out a gasp when I heard the Doctor say
“You are all very entertaining to us”

Should I laugh or cry?
I think I did both. I heard myself laughing but I had
tears falling down my face!
Did he really mean just what he said.
We had been discussing how the testominies from lots
of GPA patients were very similar and yet all different
I had not met this Doctor before.

My current specialist had asked him to see me as we are
at a cross road and she wanted a second opinion.

So what is GPA

Granulomatosis with Polyangitis (also known as Wegners Disease).
Everyone needs to know about it.
It can be as devastating as Cancer and other well know
diseases. Yet few people know about it.
It is a vasculitis disease. Inflamation of the blood
causing swelling and severe pain. It attacks the sinuses,
the lungs and the kidneys.
It comes on very suddenly.
It presents as many other diseases
There is no infection, only inflamation.
The pain can be excruciating.
It can take months to get a correct diagnosis
Currently, Doctors do not know what causes it.
Very few GP’s know about this disease therefore many
patients get treated for other diseases instead of GPA

I first had GPA 3 years ago.  I noticed a very strange
tingling feeling on the left hand side of my head. I could not
touch my scalp. It was very sore.

I mentioned it to a nurse friend of mine who immediately
thought it might be shingles and to get to the Doctor asap.
Although there were no other signs of shingles (rashes etc)
my Doctor did decide it was shingles and gave me medication
for that.
Two days later my left knee had blown up to the size of a
football.
Doctors verdict was “reactive arthritis”
I could not put my foot to the ground. The pain if I bumped
even my toe on something was excruciating.
I was put on pain killers and sent off to have xrays of the knee.
The chinese Doctor who saw my xrays said to me
“Yes you are a candidate for a knee operation…..but do not have
one until you absolutely need to have one, as many people are
disappointed with the result”
I’m glad I kept this in my mind.
My family were wanting me to go ahead with an operation and
I even had a date set for one. I am so glad I did not go ahead
with the operation as now
I could do the Can Can with that very same knee.
That same Chinese Doc admitted me to the Emergency Department
at the Thames hospital as he was concerned there might be infection
in the knee.
My GP had already had a go at getting some fluid off my knee in her
surgery but had to give up after a few tries as I was in so much pain.
So I insisted in the ED that they gave me some pain relief before
hand. The Doctor trying to take some fluid from my knee did not have
any luck either.
Several hours later the Chinese Doctor came to see me in ED and said
he wanted to have another go at getting fluid off my knee.
I looked him in the eye and said
“Two doctors have tried and failed, what makes you think you can get
some fluid.”
I guess I was pretty frustrated by this time not to mention the pain.
He said
“Well, I want to try with your leg in a different position and come from
a different angle. I am concerned there might be some infection in your
knee”
So I agreed and after several tries he managed to get a “speck” of fluid
which was enough to grow a culture.
A week later I got the result
“No Infection”
I am telling you all this because this is the general pattern that all GPA
patients go through with the medical profession. The Doctors have to
first determine if there is any infection before they can come to the
conclusion that it is just inflamation causing the swelling and the pain
I had blood tests every week.
One of my blood indicators was at a very high 180 in the beginning for
what should have been a normal of 1 – 15.
Fortunately my indicator had come down a lot before I discovered what
was normal or I would have been very frightened.
I spent two months on crutches and then used a walking stick for another
two months. It was another six months before I could walk up and down the
stairs normally.

I had been through Breast Cancer 5 years earlier and I can tell you
Cancer was a walk in the park compared to this GPA pain.
My knee gradually came right and I have not had even a tweek of pain
in it since.  Like I said earlier. I could dance the CanCan with my knee today.

I basically got through this first session of GPA on pain killers. I had days
of just feeling like a zombie, sleeping and moving as little as possible. My
brain did not want to function. My husband was chief cook and bottle washer
for at least three months before I could hobble round again.

During all of this, I had peculiar sinus and ear trouble but all on my left side
I kept telling my GP about the “crusting” that I was experiencing in my left
nostrill. My voice sounded as though I was in a tunnel.
However, she was not the least concerned and gave me some
medication to spray up my nostrill. This had no effect. I mentioned it several
times. I also had my ears rinsed. Again no effect.
Eventually, about six months later when the swelling in the knee had gone down I brought the subject up again about my sinuses. My GP decided I should go and see an ENT specialist.
This I did. He discovered something had overgrown in my nostrilll, snipped it right away and gave me some ointment to put up my nose for the the next six weeks.
There was no investigation as to why this had happened nor was there any follow up.
Only a hefty bill.
However, the sinuses healed, the ears eventually cleared and so I just went on with life.

12 months later, I had a second bout of GPA. This time the swelling occured in my left wrist. The same type of ramdom shooting pains I had experienced in my knee.
At the same time, I noticed the very same feeling in my sinuses I had had when my knee was affected.
We had moved house and I was now with a different GP.  December 2016
I mentiioned to him the experience I had had with my knee and my sinuses and asked if he thought there was a connection

He very clearly thought no.
He wanted to put me on Prednizone. I resisted at first but after talking to people who were taking it I decided to give it a go. This was about 3 months
later.

The pain relief was such a blessing.  I began to feel normal again.
However, I was concerned about what was going on with my sinuses. I said to my GP “I know my body, I know this is not a normal feeling and I know the swelling in my wrist and my sinuses have to be connected just the same as my knee and my sinuses.”
Fortunately,  he was sypathetic and decided to phone and get me an appointment with a Radiology Specialist right there and then.
A month later I was seeing Dr Ravi Suppiah.
I told him my history and he knew almost straight away what my problem was although he did not tell me. He sent me that same day to have xrays, CScans and blood tests and an MRI.

A week later he told me I had GPA.
He put me on a strict medication regime using Methotrexate, Risedronate and Folic Acid.
I was pain free and back to normal with my blood tests after about 5 months.
However, I had to stay on my medication.
I took a trip to the USA to see my brothers. I was fine while I was there apart from a lot of “swets” although NY was experiencing a heat wave at the time.
However, I had only been home a few days when I noticed a hugh egg shaped
lump come up in my jaw just under my right ear.

This was October 2016
I saw Dr Ravi Suppiah a day later. He sent me to an ENT specialist who could not find anthing unusual. At that time there was no pain in the swelling.
But……only a couple of days later along came the pain. Same as before.
Ramdon shooting pains that made me cry out. I had also had more xrays
and now had nodules showing on my lungs.
Dr Ravi Suppiah had told me in the beginning that if Methotrexate did not do the job then I would have to go to hospital and have Chemotherapy.
With nodules on the lungs I had reached that point

.
Because I was not living in his jurisidiction and he would not be able to monitor me he handed me over to the Vasilitis Specialistat at Waikato Hospital. Dr Vicki Quincey
Talking to Dr Vicki Quincey gave me confidence in my next step. She had a team of experts at her fingertips at the hospital and they would all be playing a part in my diagnosis. Dr Vicki was not prepared to move forward with Chemotherapy until she and her team had ruled out every other possibility as that could be a dangerous decision later down the track if anything untoward
cropped up.
I was introduced to Dr Harry Gallagher from the Respiratory Department to check out my lungs. Breathing exercises went fine. Next came 3 different lung biopsies.
Because I had been a breast cancer patient 8 years ealier, Dr Gallagher was being extremely causious even though all the tests he took came up negative.
The ENT specialist at Waikato Hospital also could not find anything untoward.
So In January 2017 I commenced my Chemotherpay treatment.

Six sessions over 3 months.

The first session went fine. I did feel very very tired the next couple of days and a little nausus. However, after my second session and also my fourth session I had to return to hospital within hours as I had a fever reaction to the Chemotherapy.
Xrays after the first two months showed the nodules on my lungs were disintergrating.
That was encouraging
But unfortunately my sinuses flared up during the last month. I am now having quite a lot of pain on the left side of my head. I had a Cscan last week which did not show anything untoward. I am about to have an MRI this week.
I have had to take a lot of pain killers the past month. It is hard to get through the night
Lying on either side puts pressure on my head so I usually wake about 2 or 3 in the morning, get up and make a cup of tea, take my paracodine  and sleep sitting up in a lounge chair till morning.

I have seen some beautiful sunrises!!!

I quite forgot although I’m not sure how I could……..I have had horrendous
sneezing fits during the height of each bout of GPA.    It appears to be one
of the symptons!

If you look online for GPA testomonies you will find many many stories like mine.
I know the medical profession are doing their best to get a handle on this disease but the more people who are aware of it the quicker people will be able to get diagnosed correctly.
It is important to take responsibility about how you feel. Learn to recognise signs in your body.

The more you can relay to the specialists the better.

Many many GP’s do not even know about this disease yet so will diagnose you for something else.
Do not just accept their findings. Both of my GP’s I was
under during my GPA experience had never heard of GPA. Some GP’s may recognise the name Wegners disease as this is what it used to be called. Question everything especially if you have a gut feeling about what is happening in your body. That is your best protection.

There is a Vasculitis Symposium in Chicago on 25 – 27th June. Any Vasculitis patient can attend.
There will be a lot of Vasculitus Specialists giving talks on varioius aspects of GPA and other related diseases. I would love to attend but not sure what condition I will be in for international travel.
Time will tell.

I trust this information has been helpful and that you will keep it in mind should you need it for your own health or for the health of a loved one.
It may be that this information has thown a light on something you or your loved ones are experiencing right now.

Thank you for reading this information.

Love and Blessing to you all.

 

2 thoughts on “GPA – The Killer Disease No One Knows About!

  1. Judy Dunne says:

    Anne, thank you so much for sharing your journey. My, what a journey it has been! I’m sure you just long to feel normal again. I didn’t realise just how much you have been through. May the Lord continue to be your strength and comfort. Judy x

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