Vasculitis UK
5,441 members5,005 posts

Vasculitis and flucuations

When I read many posts, there are people who are ANCA positive with no symptoms, and some with very severe symptomology and some in between. It seems that vasculitis has changing and variable effects on different people.; that symptomless vasculitis can progress to symptoms later. and some symptoms get better, come back, and to me, it seems like it is a disease that keeps you off balance because you can always get worse, or hopefully get better.

Does anyone else feel that way? Two steps foward; one step back and so on..

15 Replies
oldestnewest

Dear Christophene47,

I just saw my Nephrologist today, as I struggle to find a diagnosis. Interestingly, we had this very conversation. He says that nothing is straightforward with vasculitis. The “go-to” guidelines continue to change. Like you said, some are ANCA positive, with no symptoms, and ANCA negative, with symptoms. Apparently folks can have varying ANCAs too. My doc used the term “smolder” to describe low level symptoms. He said some people smolder, and never get worse, and some smolder, then go full blown. He thinks I’m in the smoldering category. I’m certain many other people here know much more than I, but thought I’d share my conversation.

All the best,

Canygirl

4 likes
Reply

Dear Canygirl,

Your comment was on point; it makes me think of a volcano that just smolders, can stay like that for a long time, but can explode at any moment and is not at all predictable. You are too well to be sick, and to sick to be well.

I am also afraid that even the experts can get it wrong. For me, it is taking an emotional toll. How can we keep this disease from becoming who we are and stealing our identities and sense of confidence.?

Even if you try to put it out of the forefront of your mind, it is still always there. Thanks for your reply.

2 likes
Reply

I think you've described it very well. It's why I keep a diary of any changes but then I'm new to this journey, ANCA negative, unremarkable bloods but have signs and symptoms. I'm a prime example of why we need to have a consultant with vasculitis knowledge as they need to understand the whole picture and not just results in front of them.

Reply

There seems to be a type of pre-clinical time when you know something is wrong, but don't know what exactly. In a way, I wish I never had learned I was ANCA+; I feel like I am in limbo; I can cope with pain and discomfort, but not with the lack of energy and motivation I had just 2 short years ago.

You are right, doctors look at tests, reports, whatever studies they have ordered, but no one looks at the patient as a whole. I am so tired in general, and being sent from one specialist to another is exhausting, and I think a waste of time.

Maybe we expect too much of our doctors; these vasculitic diseases are poorly understood, research still being done, and all just leads to frustration. I was recently being seen by a neuro-ophthalmologist for an episode of vision loss, and he was evaluating me for giant cell arteritis; (no test results yet) ;I mentioned that temporal biopsies seem to be falsely negative much of the time, and his response, as a highly specialized trained physician, was "It all depends on who you ask." I took that to mean that there is ongoing contoversies among specialists.

There is no magic bullet, and no direction I fear. And I fear that many doctors just don't know what to do with us. Very dispiriting.

What may I ask are your symptoms?

2 likes
Reply

I had sinusitis, a cough and a rash. My GP looked at the rash and sent me straight into hospital as he, correctly, suspected vasculitis. I saw a few consultants in the next 3 days and there was never a question of the vasculitis diagnosis; it was more about which one of them did I sit under. Although I have an ENT consultant, I went under the rheumatologist for management as she has the vasculitis knowledge.

Reply

Yes, Christophene, I think we all feel like that, constant anxiety about if and when we might relapse, and most likely about when rather than if, and what damage the relapse will do. It's the unpredictably that wears on you, and it's always with you. I am glad to see that there is a growing drive for awareness about vasculitis, all due to patient groups and their families. What I don't get is how doctors fail to consider vasculitis when presented with glaring symptoms, even if those symptoms can present themselves in other diseases. I almost lost my life to GPA. I could barely walk and was first told I had rheumatoid arthritis, then I was treated for almost 2 weeks in hospital for pneumonia, while getting steadily worse and eventually crashing, I was then intibated and put unti an induced coma. It was only then that I was diagnosed with GPA, which was later confirmed by a kidney biopsy. I eventually recovered with large doses of steroids and other meds, but have had 2 relapses since and I'm now on dialysis. At this time, I'm ok and can live a pretty normal life, but the anxiety about relapse is always there, and curbs many life plans that I might have had without the dark cloud of vasculitis hanging over any long term plans.

I have heard of people being ANCA positive without symptoms, and wonder if someone has no symptoms, why an ANCA test was done. My ANCA test done only once vasculitis was considered.

Reply

Dear Slem2,

I am so sorry for what you have been through. You have been and are weathering a lot of storms. You are exactly right; it is like a black cloud hanging over your life plans or would-be plans.

I think that doctors are trained to think "horses", not "zebras." It is a rare, disease, and most doctors, except for the special few, look for routine things with easy remedies. In addition, unless a psychologist or psychiatrist, doctors don't have the time and/or the patience to listen; they too get burnt out and jaded.

I don't know why I was ANCA tested; a rheumatologist ordered many different tests. My only reason for going was a new and severe muscular upper body pain and a growth on my hand which turned out to be a granuloma annulare. I did see on the office notes from that first visit "unexpected lab result.." I also overheard him tell another doctor in the office that he had only seen 2 prior cases of C ANCA +, in his long and entire career so I know he has very limited experience

I had thought it was the residual effect of a tropical virus that I had 2 years prior which has been implicated in triggering autoimmune problems 2 years later, and it was 2 years later, especially 0+ rheumatoid arthritis. He immediately "blew off" that idea.

So far, I have been spared the degree of harm you have endured, I hope. Now I have symptoms of GCA with a sudden temporary loss of vision. I am awaiting results of duplex dopplers of the carotid s and orbits. As I understand it, it would be too late for an accurate temporal artery biopsy because on prednisone too long.

Even with report of vision loss, the response was to reduce 4mg. of Prednisone and start low dose weekly methotrexate. The lack of awareness and confusion and how it psycholgically affects the patient is worrisome. I myself found a neuro-ophthalmologist.

We don't have a forum in the US, like this one, and I don't think established doctors are interested in doing research that might help their patients. Like they have for diabetes, it might help if clinics and hospitals had "educators" for patients who know enough to unravel the complexity of these diseases.

I have an appt. with a different rheumatologist with many years experience in early June who "advertises" that he compassionate, a solo practitioner and does not rush.

At the last office, I was assigned to a PA.

I wish you continued stability and pray no relapses for you. Best of luck..

1 like
Reply

I'm in Canada, and there is very little awareness of Vasculitis disorders here. Most of the general public have never heard of it, and although doctors know of it, it doesn't appear to be on their radar when examining patients. It was fortunate for me that my rheumatologist came to see me when I was admitted into intensive care in the hospital he attended. The hospital that was treating me for pneumonia for 10 days was a different one, and my rheumatologist didn't know I'd been hospitalized until I was transferred to his hospital. Although he was the one who first thought it was rheumatoid arthritis, when he saw me in the hospital, he realised it was something else, and he was the one who convinced the attending doc in the ICU to do a kidney biopsy because by that time he was pretty sure it was GPA. He was right. If I hadn't been transferred to the hospital he worked out if I wouldn't be here today.

Most of the information on vasculitis, treatments, and research I get from the UK. There's a rapidly growing number of support groups there, generally started by patients and their families, who are doing all kinds of things to spread awareness of vasculitis, but a number of doctors and specialists are tapping into them too. Check out vasculitis.org.uk. There's also a group called The Lauren Currie Twilight Foundation that gas lots of good information and support.

Hope you get an accurate diagnosis soon and that everything works out for you. Although it can often feel like it, just know that you are not alone. Research and action most often comes from the activities and fundraising of patient support groups.

1 like
Reply

It does seem like the UK has the best information and resources for patients. I am in the northeast of the US; if, in giving a history to a doctor or an assistant, I mention C-ANCA, a blank look comes over their faces; in the US, there is very little awareness except at major teaching institutions, like the Mayo Clinic and Johns Hopkins which have a few doctors in a small unit.

There is the Vasculitis Foundation here which hosts fundraising events and has a newsletter. I didn't know anything about it either until it happened to me.

Thank goodness for this site because there are so many types of vasculitis, so many inconsistencies between blood work and symptoms. At least we have the chance through the internet to learn from each other.

Thanks for your reply and support,

2 likes
Reply

UK is the best! I tell everyone in US about this site!

Reply

I’ve had PMR and been on prednisone for two years. I’ve had a lifetime of sinus issues but they were worse, so my rheum doc ordered an ANCA test a year ago. Positive P-ANCA with low levels of MPO antibodies. She sent me off to a sinus specialist who suggested the results were a fluke since he didn’t note any signs of disease.

So my rheum retested this year. Same results. She said it’s clearly not a fluke. I feel like I’m in some sort of limbo now. She says she’ll monitor me. She ran a urine test which was perfect. My CRP level was normal for the first time in 2 years. I’ve been holding at 4mg prednisone per day. I’m in the US. I love my rheumy and we work well together but I don’t know her experience with Vasculitis. I feel a bit lost and vulnerable right now.

1 like
Reply

Hello SusanEleven,

May be a FDG PETCT scan is worth discussing with your specialist as also a Doppler Study of your Axillary and Temporal arteries. If both shows changes of diffuse Vasculitis, appropriate future measures relating to treatment and followup scans, blood tests on CRP, ESR, Interleukin -6 level etc can be made by a team ofspecialist your own doctor and a Rheumatologist. The radiation from modern FDG PETCT scanners when looking for vasculitis related uptake is much less that what one is exposed to in cancers related PETCT scans. Because of that they could do a repeat scan after a few months of treatment to evaluate the success of the treatment and take steps to adjust any further dosage regimes etc

cggkumar

1 like
Reply

I don't think it would be inappropriate to politely, but bluntly ask a doctor how many patients has he/she treated in career with vasculitis; is he or she willing to take the time to listen and do a little research on your behalf.

Years ago, I was developing large water blisters on my hands and feet without anything to cause it. My dermatologist, who had also been a GP before going into dermatology, took a biopsy which came back as likely an allergic reaction to any number of things; I could not think of anything new or different I was using at home, or any new medication. He then ordered tests searching for an autoimmune cause ; everything normal.

With that, he invited me to join him at a."difficult diagnosis meeting" held monthly at one of the local medical schools. It was a chance to have numerous dermatolgists as well as dermatologists still in training to collaborate on your case. A dermatological pathologist was there and said, I think I know what this is. My own doctor called me with a bad diagnosis from the pathologists. I found a doctor who had published medical journals on that diagnosis for a 2nd opinion. He ordered a lot of same tests, and asked me very pointed questions.

He also gathered some of his colleagues into the room, and they started asking "what meds are you taking ; let's look at that again." When I mentioned Naproxyn, an non-steroidal anti-inflammatory, one of the students had a Physicians' Desk Reference in hand, and said blistering was a side effect of Naproxyn per the PDR.. I stopped that drug and it never came back again. If I had just accepted that diagnosis, I would likely been put on large doses of steroids for a wrong diagnosis, although well intentioned.

My point is why doctors confronted with.confusing symptoms , inconsistent findings ,as occur with vasculitis, do not have such meetings with their colleagues and patients and collaborate with each other to get to the root of things. Thereafter, the dermatologist who invited me to attend , told me he had 2 subsequent patients with my symptoms; he asked them if they were on Naproxyn which they were, and bingo, he had learned something!

I think that concept be should be utilized for vasculitis and include rheumatologists, GPs, and all other specialties that interface with vasculitis. Doctors and patients might learn something from regular collaborative meetings with patients in attendance instead of pretending to know it all when they don't have a clue.

Maybe the various organizations, the few vasculitis experts there are and hotline people put that suggestion into the minds of Doctors and start hosting such meetings on a regular basis. The concept could be used in any difficult diagnostic situation.

One way to find an experienced vasculitis specialist is to see who has written books and articles and make an appt. That may mean traveling and paying privately If it is possible, but it's your quality of life at stake.

1 like
Reply

It's the attitude amongst Doctors in the UK & US, except rare gems of doctors, who simply would not be many. They are generally work-shy. They worked hard enough through beating competitions, to get themselves the status as a doctor. I lived in Asia. I had seen quite a difference. Doctors were far more serious, try to ge patients diagnosed, especially complex, challenging ones. They love their challenge and are well-equipped, too. Patients don't need to try to get their attention. Doctors will give it their best shot, and that was abroad. They have more pride and think their job is get their patients sorted out as quick as they can. A different attitude, probably cultural. Most accomplished career-minded doctors in the UK and in the US are doing fine without unusual illnesses. It's your fault, just as if. Again, there are good Drs, but these are rare.

Reply

Well said. Bold indeed !!

cggkumar

1 like
Reply

You may also like...