First Major Relapse

Hi everybody,
thought I should update my Wegeners journey.
First diagnosed in 2010 and treated with cyclophosphamide and prednisone for a year and a half until a remission of sorts was induced.
Massive side affects during the treatment including hospitalisation around 60 times with psychosis which the doctor always blamed on me. I stopped all meds to prove it wasn’t me, even with the risk of the disease harming me and after that the doctors started disbelieving I even had Wegeners.
They strung out my appointments to six months and I was not given any maintenance therapy.
About two years ago my anca levels went through the roof and pathologist was recommending urgent action. The doctors continually ignore the test results.
I was feeling progressively more ill. Weak, nausea every morning, fatigue and trouble with my hearing. My hearing was getting worse. When I talked one would block of the other might. Sometimes both would. It was frustrating and an annoyance.
After a number of complaints to the hospital and having even arguments with the doctors things started to move.
August 2017 I suddenly had a massive vertigo attack which put me in hospital. They did very little and sent me home like that. The disease rapidly escalated and I began loosing the hearing in my right ear. Still not much action. Then I went totally deaf in right side and the left ear began loosing the hearing. This was accompanied with major tinnitus and 24 hr a day severe headaches and very sore eyes.
Next came the double vision which totally disabled me. I was forced into early retirement with no financial assistance. That was the end of November 2017. I was so sick by then.
Other specialists became involved. I think panic set in at the hospital.
My original specialists were trying to put me back on cyclophosphamide and I refused. I told them I’d been on that too long and that it was like taking poison. Not to mention the very high risk l will end up with cancer.
I kept asking for Rituximab as I’ve read a lot about it. In the end they agreed to Rituximab and high dose methyl prednisone. I think the government here doesn’t like to use it due to the cost except for serious relapses which mine was.
Had the treatments late February 2018. No instant results. Last week had the 3 doses of methyl prednisone and due to my allergic reaction it was done over 3 days in hospital. Instantly cured the headaches (almost), the pressure in my head stopped and single vision returned - Yah! 😀
From here I don’t know what to expect. I trust the magic drug Rituximab will start doing its job and l will get better.
I am now permanently deaf in right side and about 30% hearing left in left side due to delayed treatment. I still can’t walk properly due to an imbalance it caused. As this disease progresses if the treatment isn’t prompt you accumulate more and more disabilities.
Anyway, life goes on. I still haven’t the energy/strength to work so l will call this retirement. 🙃

Have a wonderful day,

Peter

Peter,

Hope you can get better and soon.

Reading your story, the medical treatment (or lack of thereof) is worse than this illness. Truly frightening.

Is there a whole new set of doctors and a new hospital you can tap for assistance?

I don't know if you have a legal recourse in Australia, what you describe is medical malpractice.

You too have a wonderful day.


Ed.

Thank you for your good wishes.
After such a long battle I now have more specialists involved in my case. The original doctors seem to have stepped into the background. I’m sure they got their butts kicked.
Yes I could take legal action but I live in Ballarat which is about 100kilometres from Melbourne. A large town of about 120000 people. I don’t want to jeopardise any treatment I need. I just want to be treated appropriately.

Stay well.

Peter

You have been unfortunate to incur some of the common side effects of GPA such as loss of hearing and problems of balance, vision issues, weakness, fatigue etc. Usually we have these problems due to difficulty in getting a correct diagnosis and the necessary proper treatment. It is most unfortunate to have improper treatment once a diagnosis of GPA has been established since then doctors should do a better job of recognizing the symptoms and providing the appropriate treatment. And unfortunately often much of this damage is not reversible and the resultant limitations in functioning become part of our new "normal".

We hope that such problems will become less frequent as physicians become better at recognizing GPA earlier so proper treatment can begin earlier and stave off much of this serious life changing damage. All one can do to strive to get the best care possible forward and work on improving what can be improved as much as possible. It is often stressed on here that one needs to secure a care team that is familiar and skilled in treating GPA.

Some things I found that helped me were to have BAHA implant on my deaf ear and to get a new BTE hearing aid for ear that has some limited hearing. These along with newer hearing accessories for watch TV, listening to music, phone have greatly improved my quality of life and opened up many new options such as music concerts, lectures, movies, and the ability to enjoy normal conversation again. etc.

I found vestibular rehab and physical therapy to work on my balance very helpful so I can safely drive a car again and walk OK with a cane or wobble along slowly in a crooked manner without it. I am also in a Tai chi class to help improve my balance which has also been helpful.

Other specialists can help you manage issues like lung damage, vision problems, kidney damage in the best way possible. I also have other specialists to help me in other areas that are impacted by my diabetes.

Counseling or therapy to help me adjust to the limitations brought on by the life changing damage of Wegs (GPA) was very helpful to me too. I also found practicing gratitude to help my mental and spiritual life since I feel I was very fortunate to survive my initial attack back in 2010 and recover to the point I could leave the bed, hospital, nursing home, rehab hospital, and live in a facility with minimal assistance. Since many did not.

Best wishes to you on your journey as you strive to attain the best possible life for yourself.

Thank you Drz for your detailed response. Today had an appointment with the doctor to follow up. I’m now getting weekly appointments and blood tests. He put me on Cellcept 500mg twice a day and low dose prednisone 25 mg a day due to my allergic reaction. They are now bombing the existence out of the disease.
Im still under the original doctors but a new doctor is in control now. He is brilliant.
I said to him today that I do understand the difficulties in determining if there is a relapse taking place but it appears the blood tests and MRIs aren’t good enough to make that determination. With full blown double vision the report back from the MRI was there was no evidence of anything behind the eyes including nerves out of the ordinary. The blood test told us there was no inflammation in my body. And yet the 3 day infusion of methyl prednisone stopped the headaches, corrected my vision and stopped the progression to deafness in my left ear.
He said that was all true and when the disease flares all they can do is treat the symptoms as they appear. Then obviously aim for a remission.
Ive heard it said the doctors need to listen to the patient and take the necessary action as required. A lot of doctors don’t listen to their patients and that’s where the problem arises.
Im not angry with the doctors. I’ve got a rare disease called Granulomatosis with Polyangiitis. ��

Quote:

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Originally Posted by PJ2010

Thank you Drz for your detailed response. Today had an appointment with the doctor to follow up. I’m now getting weekly appointments and blood tests. He put me on Cellcept 500mg twice a day and low dose prednisone 25 mg a day due to my allergic reaction. They are now bombing the existence out of the disease.
Im still under the original doctors but a new doctor is in control now. He is brilliant.
I said to him today that I do understand the difficulties in determining if there is a relapse taking place but it appears the blood tests and MRIs aren’t good enough to make that determination. With full blown double vision the report back from the MRI was there was no evidence of anything behind the eyes including nerves out of the ordinary. The blood test told us there was no inflammation in my body. And yet the 3 day infusion of methyl prednisone stopped the headaches, corrected my vision and stopped the progression to deafness in my left ear.
He said that was all true and when the disease flares all they can do is treat the symptoms as they appear. Then obviously aim for a remission.
Ive heard it said the doctors need to listen to the patient and take the necessary action as required. A lot of doctors don’t listen to their patients and that’s where the problem arises.
Im not angry with the doctors. I’ve got a rare disease called Granulomatosis with Polyangiitis. ��

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Hey Peter. I was diagnosed in Australia. While in Sydney I was under Professor Dennis Wakefield. I moved to Melbourne & was seeing Professor Ian Wick. If by chance you encounter further BS from the Drs originally treating you-there are options. I wish you well & hope you never go through that again!
Natty


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Thank you Natty,

I do very much appreciate your information. I know no one else here in Ballarat with this disease. There was one man who I actually knew and worked with many years ago but I found out around a year ago that he finally passed as a result of this disease.

All good news though. The CellCept and prednisone are starting to do their job. Or maybe the Rituximab? I’m beginning to regain my balance. My vision is still improving. No headaches. This past week I’m definitely on the improve. Today is the first day I have ridden my motorcycle for at least 3 months. As my energy levels increase I will be able to clean my house and do some much needed gardening. Yesterday I changed the sheets on my bed and vacuumed my bedroom. The last time I did that was also 3 months ago. ��. I feel my appetite slightly improving as well. Maybe I will get back to cooking and eating good meals again soon. I live on my own and have nobody to assist me so I just do what I can. Usually that is sleep a lot.

At the moment I am very pleased with my treatment and the doctors looking after me. I think the neglect is in the past from here on. I’m ok about being mostly deaf now. At least I have some hearing in my left ear. Not much but I manage.

Here’s to looking forward to a new remission.

Peter

Thank you for sharing your story, Peter. It's a shame how your docs mistreated you. I am glad you got the rtx. It might take some time to fully work.
I tag @mishb who lives not too far away from you, Peter, and can help you and @NatriceRomeo to connect with other weggies in OZ.

Thanks Alysia for the tag.

Hi Pete, it's good to hear from you again. We haven't seen you around for a while.
I'm glad things have started to improve for you.

In the Oz facebook group, we have a couple of people that get seen at Ballarat Base now.
I think that Professor Richmond is more on top of things, than before.

Fingers crossed for a great remission

I’ve had two infusions of Rituximab so far. I tolerated it very well so far. My numbers have improved. I was able to discontinue a iron pills and oxygen at my first follow up appointment. I’m so sorry it took so long for you to get proper care! Luckily, once I’d had the lung biopsy and a rheumo workup, my doctor was on it full force. Next infusion in Sept.