Any Similar Experiences?

[Alliand]

Hi, I am Alliand. , I sense the anxiety and frustration as well as optimism in most of you. I am from Southern New Jersey, near Philadelphia,PA. I am PR3 positive after experiecing severe upper body pain; from shoulders to fingers; never experienced before, preceded by 2 bouts of vague viral feelings, about 10 days each May. 2016.and Sept.2016. The upper body pain abruptly started 2 or 3 days after the 2nd viral episode.

. A "top doc" rheumatologist ordered many blood tests and the only thing that was positive was the presence of the PR3 antibody. Diagnosis: C-ANCA vasculitis. Polymyositis rheumatic was considered as well.

Started on 16mg prednisone, felt miraculously better very quickly. Had no perception of lung or kidney problems, just musculoskeletal. Got a 2nd opinion from a Professor in the Vasculitis unit at Johns Hopkins in Baltimore in April, 2017. Many more blood tests repeated and then some, and again, the only positive result PR3 antibody at a low titre 1.1. She was thorough, and concluded that such diagnosis of systemic vasculitis was premature; I have tried tapering very slowly per her guidance, resulting in extreme lethargy which is to be expected, until I lost vision in my left eye in Novemer, 2016 for about 7 minutes , after which it returned to normal.. To protect my vision, I unilaterally returned to 16 mg again.

Saw eye doctor who could not find any reason within the eyes; did some other tests to rule out optic nerve problem; none. She concluded it must be a vascular issue. When I taper below 8 mg. , original pain comes back, but more mildly.

I do not want to become a professional patient and would like to be enjoying life, but fatigue can be overwhelming some days.

I WANT TO ADD THAT IN 2014, I HAD A TROPICAL MOSQUITO BORN VIRUS CALLED CHIKUNGUNYA WHILE IN THE CARIBBEAN. Research shows that people over 65 start to develop chronic arthritic/autoimmune syptoms about 2 years after the acute infection resolves. Seeing more and more chickungunya connections to autoimmune disorders online in scholarly works.

Feeling lost at this point. Two conflicting opinions; still afraid to taper again. Has anyone had this tropical virus? Or any other ideas or experiences to share? Thanks.

[Pace1967]

I would recommend a drastic dietary change. Consider going vegan. Watch the Netflix documentary forks over knives. I believe it is also on utube if you don’t have Netflix. Allow your body to assist in healing itself.

[Hidden in reply to Pace1967]

Hi Pace1967,

Do you have any evidence that you can cite that dietary change is a treatment for Vasculitis?

[Pace1967 in reply to Hidden]

There is evidence that dietary changes improves health and subsequently, many diseases. There is a documentary called the China study that documents this over many years. In addition, the documentary fat, sick and nearly dead follows two people who cured their vasculitis through dietary changes.

[Hidden in reply to Pace1967]

So you can't cite any placebo controlled/ randomised evidence to support your recommendation for " drastic dietary change "?

Don't get me wrong, I am very interested in optimising health through diet and exercise. The issue here though is a lack of diagnosis and definitive treatment.

Vasculitis is a potentially life and organ threatening disease, effective timely diagnosis and EVIDENCED based treatment has the potential to save lives and organs.

Medical staff are responsible for ther acts and omissions and can be held to account, documentary makers aren't!

[Pace1967 in reply to Hidden]

I am not advocating NOT seeking treatment. I am, however, suggesting a dietary change that can be nothing but beneficial. Eating a plant based diet filled with essential vitamins and nutrients cannot harm anyone. It only takes two weeks to see improvement as compared to weeks, months and even years from medication. There is not one reason to dissuade anyone from seeking to try this as a remedy. B12 is the only supplement that is needed. Fruits and vegetables are loaded with healing properties and it does not take a double blind study to reveal this.

[Hidden in reply to Pace1967]

If only it were that simple, whilst a plant based diet may do no harm being unable to access a definitive diagnosis and evidence based treatment has done many patients great harm.

Appropriate medical treatment such as prednisolone, plasma exchange and other immunosuppressants can stabilise patients in days preventing loss of life and end organ kidney or lung failure, are you really suggesting that a plant based diet can as well?

There is a definite place for dietary advice and for people on here sharing their anecdotal experiences, I just don't think the place for that is on a post where the issue is difficulty in getting a definitive diagnosis and treatment.

[Pace1967 in reply to Hidden]

It is actually someone like you who does a disservice to this site. People are seeking advice for treatment options from people who have seen results. I contributed to this. You have too much time on your hands seeking to attack people who have suggestions based on their own experience. I have vasculitis and have every right to share my experience. I no longer have any interest in trying to convince you of this as I have better things to do, and frankly, am getting bored with it. We will agree to disagree. Now go search for someone else to try and discredit you did not succeed here.

[Hidden in reply to Pace1967]

You know nothing about me and my contribution to VasculitisUK.

I don't think asking for the evidence base for your " suggestions " warrants such a personal attack.

VasculitisU.K. have a duty of care towards the people who post on here and assuring that the advice given is evidencebased and safe., that's all I was attempting to do.

[ludo]

Hi your symptoms sound more like polymyalgia Rhematica which is often associated with Giant Cell Arteritis which can affect vision. It may be worth looking it up to see if you think your symptoms fit.

Interesting enough I had a bad reaction to bring bitten whilst visiting a wildlife farm in Ohio which had a swamp area and exotic animals. I developed Vasculitis a few months later.

Best wishes

[Alliand in reply to ludo]

Hi ludo and. Chris-Bromsgrove,

To ludo- do you know the critter that bit you?

My symptoms definitely and classically fit PMR and GCA except for blood test results; no elevated sed rate or CRP as yet ; just the detection of a low titre PR3 antibody. By his own admission, my rheumatologist had only "come across" 2 other PR3 cases in a very long career. So I think he was not up to speed on the titre levels or viral issues.

At the Johns Hopkins University lab in Baltimore, Maryland, a PR3 detection under a titre of 2 is not diagnostic for vasculitis as Chris points out. And I did have the acute mosquito-borne tropical virus 2 years prior . 2 years post acute virus seems to be a benchmark for the trigger of other autoimmune diseases. There were many new case reports of rheumatoid arthritis -like symptoms approx. 2 years after the 2006 chickungunya virus epidemic in the French Reunion Islands , especially those 65+. And there are a couple of published articles by Indian doctors , one being a new case of the chikungunya virus triggering lupus in a younger patient. These viral mosquitos are Asian mosquitos in origin, not African, and have been traveling West from the Indian subcontinent and from East Asia.Doctors in affected regions have taken to calling it CHIK-V arthritis. Fortunately, there is no human to human contagion. But I think PCPs and rheumatologists need to educate themselves and become more aware about viral causes and ask if a patient has suffered an insect bite while in a a hot or tropical environment.. Ultimately, that could lead to more research and ultimately better treatment options.

I have read in one of the medical literature websites, to Chris's point, that there is seems to be a genetic link with autoimmune /rheumatoid disorders. My maternal grandmother had PMR at about my age now, (70) recovered, got off prednisone and lived independently until 91, and passed away peacefully at 92 of natural causes.

My brother, 11 years my junior, has had a bout with gout (no rhyme intended), and chose to treat it with a low purine diet, rather than with meds, and it did resolve. So far, it has not come back.

My daughter has 0+ rheumatoid arthritis , diagnosed shortly after having her first and only baby 12 years ago at which time she was very ill and at home taking care of a baby with an IV drip of Prednisone monitored twice a week by a visiting nurse. At the moment, she is in a flare, but going anti-inflammatory with diet and herbs, trying to avoid a return to prednisone. I hope she succeeds.

So, as someone on this site has already said ,once you have the disease , you can't change how you acquired it and know for sure whether it is a genetic link or a viral link.

I think my rheumatologist considered me a rare specimen and , therefore, over-reacted with the diagnosis of C-ANCA associated vasculitis and an initial recommendation of Azanthopine and IV infusions of Rituxan. And only after, gave it more thought and suggested to hold back If I was doing OK.

I think most people have an instinct for what they have and do not have. Will be seeing him next week for updated blood work and to ask whether to taper or not to taper. Since the brief loss of vision incident, I have developed tinnitus also, so GCA may be in the picture. I am at 12 mg a day.

I imagine I will be onto the cardio- vascular docs since eyes appear fine. And even with the tinnitus, my hearing is fine and it is only slightly bothersome.

Does anyone know if an angiogram of the cardiovascular system or the brain would show signs of inflammation.? Does anyone see a chiropractor for musculoskeletal pain, and, is so, does it help, or an acupuncturist?

Finally, what type of exercice is recommended for PMR/GCA ? Thanks to all for your time and thoughts. Considering the combined pain and suffering of all of us, this site makes it all a little more pleasant. I agree with ludo and Chris that I have PMR/GCA, not Wegener's. Thanks again.

Alliand

[Chris-Bromsgrove]

Hi Alliand,

Being ANCA positive doesn't always point to vasculitis, especially if it is just slightly positive. Viruses can be one of the triggers for an auto immune disease. Ludo has made a good suggestion. My mother had PMA and what you describe sounds very similar. Hope you get to the bottom of it. Chris

[cdenoncourt]

Hi Alliand,

Losing vision, even temporarily, must be frightening. Frankly, I can't imagine that a place with the expertise of Johns Hopkins Hospital, plus an eye doctor could have possibly failed to consider Polymyalgia and Giant Cell Arteritis, so it seems to me that is an unlikely consideration for you. Knowing all about what triggered your condition does not change the fact that you have it and you may be in for an extended time (several years) of treatment, management, and investigation. Be patient and proceed slowly with tapering if tapering is advised. Your goal is to stay at the lowest dose that keeps you functional, for as long as you need to. I had Polymyalgia and Giant Cell for 5-1/2 years before getting off prednisone. Then it took 10 months after that to start feeling normal again.

[Alliand in reply to cdenoncourt]

Hello and thank you for your response and to the others who responded. To cdenoncourt, your experience of eventually getting well and feeling normal again is greatly encouraging. I believe that rheumatolgy is a very difficult area of medicine because blood tests results and imaging studies do not always neatly match or correspond to diagnoses or symptoms.

Both rheumatologists I saw did consider PMR/GCA, but discounted it because of normal sed rate and CRP results. The first rheumatologist admitted he had "only come across " the presence of a PR3 antibody twice in his entire career (a long and reputable one), but did not seem to know that the mere presence of the PR3 antibody with very low titre is not necessarily diagnostic for ANCA associated vasculitis. I have no symptoms or sense of my lungs or kidneys being involved. All tests and scans negative for this.

It is true that I did see Dr. # 1 quickly after the upper body pain became intolerable and it may have been too early for the unfolding of a diagnosis via blood test results. We can't go backwards now and check blood test results without Prednisone being in the mix .

I do believe a junior doctor, participating in the consultation did think I had PMR/GCA, but was reticent to speak up to his superior and employer who wanted to focus on the presence of the antibody.

The so-called "best doctors" do not know everthing. What prompted me to get the 2nd opinion was the eagerness of the Physician's Assistant to start oral Azanthopine and Rituxan infusions. I am suspicious of the profit motive in American medicine (even though my health insurance would have paid for it) and thought it way too premature to be going down that road. In fairness, the PA spoke to the senior doctor (after I left the office) about the Azanthopine and Rituxan infusions. That afternoon, I received a call from one of the nurses who was told to call me to say that if I was "doing OK" to hold off on the additional meds for the time being.

My PCP suggested to get yet a third opinion. And, yes, it is frightening to suddenly lose vision while calmly watching the morning news. But I remained calm and it did return in less than 15 m.( which can happen with both vasulitis and PMR/GCA. Since bumping up to 16mg/day, I have had no reoccurance , and may not have either way.

I have days when I can do most everything, and days when I cannot. And, yes, it does not matter the cause of whatever triggered all of this b/c Prednisone is the first line of treatment for all autoimmune/inflammatory conditions ; it has to be where I will stay for the foreseeable future.

I am following an anti-inflammatory diet, in hopes it will help curb the inflammation and to keep weight in control while on Prednisone; It is too early for me to say whether it is helping or not.

Thanks to everyone who replied to my post and I am glad. to have found this site. We must help ourselves and each other. Will keep in touch as things develop down the road for better or worse. The only evidence I would trust at this point would be a biopsy to rule out (or in) temporal arteritis. I have been researching the ant-inflammatory properties of medical marijuana which is legal with a certified doctors' prescriptionin my state of NJ, as well as cbd oil which is legal to buy without a prescription (negligible THC) ; Will be working on getting a biopsy for temporal arteritis, and trying the cbd anti-inflammatory tinctures.

Has anyone tried cbd oil in some form?

Alliand

[cdenoncourt in reply to Alliand]

Hi Alliand,

Just so you know, a temporal biopsy can only confirm GCA, not rule it out. If no giant cells appear in the small sample taken, but you have the symptoms, doctors proceed to treat you as if you had it. It would be negligent not to.

[Alliand in reply to cdenoncourt]

Thanks for that information; I did not know that.

[Suzycat]

Wow....to follow up on Keyes, I would agree wholeheartedly, that when dealing with any type of vasculitis and its treatments, evidence is a must. Keyes is one of many volunteers on this site, with an in-depth knowledge and experience of vasculitis. I also agree that eating a healthy diet is good for anyone, not just chronically sick people. The mainstay treatments, as we all probably know, are prednisolone and usually an immune suppressant drug. If a vegan diet was implicated in any way, in effecting a'cure' , the research papers etc would certainly have been mentioned and a link placed on this site.

Alliand, I hope you get the clear answers that you seek. It can take time, I know and I wish you luck.

My vasculitis seems so simple when I read about the many complex issues discussed here, but I think you have come to the right place. ☺

[Hidden in reply to Suzycat]

Thank you Suzycat.