Ok so now I'm back to where I was a year ago. Today was my third visit to the rheumatologist and I told her my symptoms seem to be returning since tapering down to only three mg of prednizone. My head feels loopy and I have dizziness and weird visual things .... but she said egpa does NOT affect the central nervous system.
She also says that my ANCA tests have always come back negative and that although there is ANCA negative egpa, the ANCA should be positive during a flare up of the illness, which mine isn't if this is a flare up.
So we are left with not knowing what the heck I do have. She says some hypereucinophilic syndromes have really unusual symptoms. She does not believe I actually have any vasculitis. She thinks my brain damage could be due to the blood flow being blocked by too many eucinophils. My new respirologist believes I have actually had vasculitis for a long time and he says I meet all the criteria for egpa. My rheumatologist says I don't.
So...the plan is for me to have another bunch of blood work done, then take a large dose of prednizone (50 mg) for seven days, then 25 for seven days , and then see if I feel better. Meanwhile she has ordered another MRI of my head but it will take three to six months to happen.
My rheumatologist seems through. She has explained that there is lots of overlap between these conditions. She has also said that all my inflammatory markers are looking better than they did six months ago so it is not adding up. She wonders if the prednizone and azathioprine are making the blood look better than it is. She says that egpa patients likely feel pretty crappy all the time but they don't have my symptoms.
I just want to get better.
Thoughts?
Cathy
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Cathywp
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Hi Cathywp, You do normally expect an increase in ANCA levels during a flare or relapse. However vasculitis doesn't always follow the general rules and some patients can have active vasculitis and be ANCA negative. So being ANCA negative doesn't necessarily rule out vasculitis but probably means it is less likely to be vasculitis. Chris
EGPA is different as only 40% of patients with EGPA are ANCA positive.
There are 2 different types of EGPA, the Vasculitis type ( ANCA positive ) and the more allergic type associated with eosinophils and asthma ( this is an oversimplification to make a point! ).
If you have ANCA negative EGPA is very unlikely to ever be positive.
I think the issue here is that the Dr concerned has a very poor understanding of EGPA which is a rarer Vasculitis variant and can be complex to treat.
Thank you for the clarification. Sighhhhhhhhh.....I was afraid that was a definite possibility: that perhaps the doctor is mistaken. It was so difficult to even get a referral to any rheumatologist that I now have no idea how I can suggest (and to whom?) that the referral I fought for is incorrect and I wasn't another one. Keyes can I ask how you know all this? Are you a doctor or a patient or what is your connection?
I am part of the helpline team at Vasculitis UK and used to be a nurse.
I don't have EGPA but do have a hard to define auto immune disease which thankfully is responding to treatment.
The reason I know these things is that I go to a lot of meetings and conferences where these things are discussed. Plus it's quite clear from reading about EGPA that the majority of patients never have a positive ANCA!
The only thing I can suggest is printing off some information ( such as the links that I have provided on your other posts ) and give them to your Consultant for comment. Questions like
" what is your evidence base for telling me that I can't have EGPA if I am ANCA negative " can be useful. If they tell you something you disagree with get them to document your disagreement and reasons for it in your notes. Also get them to document your concerns. Everything they tell you ask for the evidence base.
None of these things are easy but what alternative do you have?
My rheumatologist said egpa does not affect the brain because the brain has harvested veins and egpa only affects small veins. Does that seem sensible?
I think you need to be very clear about what you mean by affecting the brain. Auto immune disease can cause neurological type symptoms such as brain fog, difficulty processing and finding words, headaches, dizziness etc without any structural brain damage occurring. I have all the above symptoms as well as a type of neurological disease called Blepharospasm ( a type of dystonia ) but don't have any " damage " on scans.
The brain is very vascular, whilst the arteries carry the blood to the brain there are also veins, aterioles and capillaries which are tiny blood vessels which help perfuse it. Is your Rheumatologist really saying that the brain only has arteries and large blood vessels?
I could have misunderstood her. I will ask my daughter as she was at the appointment with me. As for what I mean by affecting the brain.....I mean brain damage which I have been told by a neurologist may improve but it will take a long long time. He had my brain scan on his computer and he showed me that it had many areas of flashing lights that he explained represented damage. He said that is probably why my right arm is always sort of numb, why I could not remember the alphabet or the multiplication tables, etc etc. When asked if the damage would be permanent he said I might improve but it would take a really long time.
I only got in to see him because ..... oh geez it's such a long and dreary story ...never mind....anyway he said no need for any follow up as I seemed fine.
I don't feel fine
Cathy
I will dig out the paper copy of my brain scan results ...
Oh yes.... the hemotologist who was assigned to my case called them....changes.....she didn't offer any more explanation and just said that I must have a bone marrow problem. I was put on 65 mg of prednizone daily and sent home. I could hardly walk. I kept going back to the emergency and asking what's wrong with me. The doctors said I has fine and i probably felt bad being on prednizone. Months went by and I retaught myself lots of stuff that I had forgotten. Sorry I'm droning on here...anyway my head never fully recovered and eventually the hemotologist got fed up and yelled...I told you already! It's from your brain damage! Meanwhile I had been reading lots and thought I must have an autoimmune illness rather than a bone marrow disorder so I had to get a referral with a rheumatologist...it all has taken lots of time but I was hoping I was finally in the correct hands
I think you need to take this further with someone more local. It's very difficult to comment when we have no knowledge of the Canadian Health care system. Hopefully they can recommend a more knowledgable Consultant close to you.
I went through a lot of testing and differences of opinion so know how you feel, I was diagnosed with Vasculitis then the neurologist said it wasn’t that it was vasculopathy. I’ve got a few things and thankfully things seem under control and have been for a long time now with occasional flare ups. I did a lot of looking into things back in 2008 to 2010 and then I decided to let them argue amongst themselves so long as they make me feel better.
I take a low dose of pred 5mg, 150mg of azathioprine and tinzaparin as I have APS. I have rituximab more or less annually or have been just waiting to find out on this year. My ANCA test are now negative but I was told that this is because the treatment is working and is what they want them happen, not sure if this is the same for your condition.
I think it’s good to look into your illness and find out what other people have experienced. I am a member of Vasculitis UK and they are really good at helping and getting info it may be worthwhile for you to look them up. It is run by John and Susan Mills, John has Vasculitis and hasn’t been too well but they always try and get information to people to help them.
I know that it is frustrating when you can’t get straight answers and it still feels like for me after 10 years but I think these diseases are unusually and unfortunately drs disagree with each other when they review your file. Get in tough with Vasculitis UK and they will be able to provide you with information on EGPA.
I can only relay my experience- I have had Wegner’s for a little over a year. My rheumatologist seemed only interested in my case when I was in the hospital covered in leg ulcers. So I have an appt with a new rheumatologist this month. I had the same experience with my urologist so I just broke up with him & have an appt with a new one in March. The only way they diagnosed me with Wegner’s was because cartilage fell out of my nose- all my labs were normal.
I wish I could figure out what I have. I don't think there is any plan to look any further with my current health care professionals. I will have to figure out what to do next.
Hi Cathywp I have churg Strauss syndrome or EGPA as it is now called. I am under the care of my rheumatologist at my local hospital who is good and very thorough and liaises with a respiratory consultant who I also see there - but I also see a consultant about once a year at Manchester hospital which is further to travel who specialises in Vasculitis. My condition is very rare and I go for a second opinion or extra input into my care from a consultant who sees more patients with it. Vasculitis UK recommended dr Bruce at Manchester as a consultant with a special interest in the disease. If I were you I’d try and get that specialist care in Canada too. I don’t know how your system works - I asked for a referral through my GP - but if there is a Vasculitis charity over there, they will probably know the best people to see for a specialist opinion. My Manchester consultant does liaise with my local hospital rheumatologist and makes recommendations. Hope that helps and best of luck. For me the most important thing is to get to see the people who know most about your disease and also that you can talk to easily.
Thank you for the information and sharing your story. It sure is difficult to get this figured out. I have no idea what to do to get further answers. I'm planning to try to get ahold of my rhymatologist tomorrow to ask what is her plan. She agreed to see me last week because I insisted I was feeling terrible. I was prescribed 50 mg of prednizone for seven days then 25 mg for seven days and told to come back in four months. I'm not very comfortable with that as it does not seem much of a plan
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