P-ANCA and MPO - not yet diagnosed and extremely anxious

[ImWithTheBand]

Hi everyone,

I’m new here and so glad to have found this forum. Just found out that I am p-anca with MPO (negative inflammatory markers) and I am so scared of what might be happening. I have a referral to a rheumatologist and I’m anxiously awaiting booking my first appointment.

I’m feeling extremely anxious about what’s happening to my body and what my quality of life will be like, especially with a young child who is my world.

It was a psoriatic rash that I developed post-partum (2014) blood and mucus in stools, dizziness and weakness that prompted my recent doctor visit. Not knowing though is awful. It probably doesn’t help my anxiety that I keep googling stuff.

Thanks for reading. Hoping for some reassuring words from a caring community as I don’t know where else to turn right now.

[Suzym2u Moderator Vasculitis UK]

P-ANCA with MPO suggests Microscopic Polyangiitis , are you taking any medication at the moment and where are you seen if you don’t mind me asking.

[ImWithTheBand in reply to Suzym2u]

Hi suzym2u, I’m in Australia. I’m not on any medication yet as I only just received the blood test results from my GP on Friday. I was taking advil and voltaren over the last couple of weeks for some headaches I had and an old back problem (stopped about two days before blood test). He’s written me a referral for a colonoscopy to investigate the bowel issues and a referral to a rheumatologist to investigate “a potential vascular condition”.

I’m really worried about having cerebral vasculitis given my symptoms of brain fog, headaches and tinnitus. I feel so sick over all of this and have lost so much sleep wondering about the unknown.

[PattyMPA]

If you mean you are P-ANCA positive and have anti-MPO antibodies, that sounds like MPA or Microscopic Polyangiitis, which is what I have. Treatment may be high dose Prednisone and something like Methotrexate as well, or Rituximab infusions. That all depends on your own Rheumatologist's view of your needs and where you are, i.e. U.S., U.K., or otherwise and what they tend to do there. Those treatments are very helpful, and Prednisone is usually necessary at first to decrease the attack on your system, but decreasing it exactly as your doctor says will keep you safe, and never missing a dose either.

[PattyMPA in reply to PattyMPA]

Also, I am being seen near Seattle, WA. The Methotrexate ended up not being good for me, and I had a horrendous flare in which the disease attacked my lungs, so I came out of the hospital in April on even higher dose Prednisone, tapering down (now at 10 mg.) and began Rituximab in May. I have energy back, but have suffered Edema (since the Rituximab) and nerve pain causing bad left leg pain.

[ImWithTheBand in reply to PattyMPA]

Hi Patty, I’m sorry to hear that the Methotrexate didn’t have a good outcome for you. To answer your question, I’m P-ANCA/MPO positive. Just waiting now to make an appt with the Rheumatologist for further tests and a diagnosis. The wait is torturous and not knowing what’s happening with my body is awful. To top it off, I have a bad head cold and dizziness, which isn’t helping my headspace at all. I just want to feel normal. I would imagine that stress makes it worse?

I’ve been so low since getting my blood test results on Friday and keep bursting into tears randomly. Ugh.

[Mooka in reply to ImWithTheBand]

Hi

So sorry to hear you are feeling so poorly. Please be careful which sites you are googling. The Vasculitis uk site is a wealth of information as is the Lauren curie foundation trust here in the uk. I don’t know if you have similar in Australia but there’s a lot of misinformation out there. Stress will probably make you feel worse so try to concentrate on eating healthily and your young child and I know this is easier said than done. Let us know how you get on. X

[Blearyeyed in reply to ImWithTheBand]

Hi there,

I am not currently being checked for PMR or GCA but another vascular autoimmune disease which has been building in symptoms and severity for over 11years but I saw you post and realising that in general terms all of these chronic illnesses have the same affect on our minds and energy that I wanted to give you some words of support and tips that have helped me so far.

Try and Find the positives in your situation. The upside is your blood tests have meant that you are near to a diagnosis , at which you will get help and medication that will help you get back to a more normal life.

Never forget you are anxious because you have a disease that is not yet diagnosed, you are not ill because you are anxious, something that health professionals often confuse. Your anxiousness will make your symptoms worse however, so remember the positives, do what you enjoy and what makes you feel calmer to distract your mind until you get to that appointment.

Get as much rest as you need, if you need a nap have one, I see you have a little one, turn you nap into a bit of fun with a pretend sleep over or get a friend to watch her for a few hours if you need the rest. Sleep is really important to keep going with all vascular , auto immune illnesses.

Make a list of your history, family history, symptoms, old and new , and current test results and medications and keep a diary of your illness , especially in flares of pain.

This is to take to all your appointments so it is easier to remember and it really helps GPs and consultants with diagnosis and recommendations. If something has visible signs like swellings , rashes etc take photos of it , they like them, as it shows what is actually happening, as we all know sometimes when you get to the doctor you sometimes have no inflammation. It helps take the stress from appointments knowing you don't have to remember everything.

You are feeling low with a cold at the moment, and dizzy, try and have a healthy diet with lots of water, and dizziness is helped by allowing yourself a moment for your body to adjust as you change position, from laying down, sitting , prepare and stand , wait and move.

I take garlic, omega 3 and turmeric supplements at the moment which seem to help cramps and circulation, in the morning, in the middle of breakfast to get the most absorption, but check on the PMR website before adding any supplements or making changes in your diet.

Lots of fruit and vegetables filled with lovely B bits and Vit C help with the tiredness , oily fish, less meat , diary and sugars. Have fun with healthy foods with your child too, make preparing and eating them together a cool game .

Keep up gentle exercise , that can be enjoying games with your child, swimming, little walks , it helps the pain , stiffness and headaches, but don't try and push it, for the healthy no pain , no gain works, with a chronic illness it puts you on your back for a week. Just remember , sitting while you change or dress can stop dizzy spells, and keeping you feet moving rather than standing still too long helps the circulation and pain in your legs .

Until you are diagnosed and have a set care pattern be willing to say NO for awhile. Let family and friends know you feel bad and may need to miss things or slow down at the moment, the real friends will understand. Set your priorities on what you must do and WANT to do each day , and let the other stuff go without guilt , don't over commit to helping out or doing lots of things , most of us did it all before and tried to keep it up and then paid the physical price. In some ways a chronic illness forces you to make the right work , fun balance all people should have.

If other symptoms come on before seeing your Rheumy , don't be afraid to ask for advice here or from the Society , and you GP, getting new symptoms on the record doesn't harm and it may mean you can get some medical help during the wait.

Chronic illnesses do change your life , but they don't end it.

You will be exactly the same person you were before you got one, you will just have to do things differently.

You will learn who you real friends are, you will get you priorities right, you will be one of the few people who learn early on to give up guilt about not being able to do ten things at once , and you will know not to sweat the small stuff.

Remember , what you do isn't all that makes you who you are.

Keep calm , and you will be able to cope with the changes ahead of you.

Good luck and let us know how things go for you.

[SusanEleven]

For what it’s worth I’m also p-ANCA with low levels of MPO and do not have an associated diagnosis. It does feel a bit like a sword hanging over my head. My first positive test was January 2017 and my rheumatologist repeated it March 2018.

I was diagnosed with Polymyalgia Rheumatica about 2.5 years ago. Classic symptoms. Fast response to prednisone. We stopped my prednisone taper in December 2017 at 4mg/day because it got painful trying to go lower. My CRP blood test for inflammation has been normal or near-normal at my recent quarterly tests.

The only thing my rheum doc has said so far is that she’ll monitor me since I don’t seem to be having vasculitis symptoms. She ran a urine test (perfect results). She says the pains I have right now are bursitis. And arthritis (confirmed by x-ray) in both hips and hands.

She also said that if I do get active disease that they have great success with meds for p-ANCA MPO that will knock it into remission.

We have a good relationship and I know she worked with a leading vasculitis expert at a major teaching hospital before moving to my health center. So for now I’m just sitting tight. (Unless folks reading this tell me that’s crazy

(She originally ran the p-ANCA on a hunch because my lifelong sinus problems were getting worse. But my ear/nose/throat doc threw a lot of prescriptions at me and that daily regimen has helped immensely.)

[ImWithTheBand]

I can’t thank you all enough for your kind and supportive words. You have really helped me to put things into perspective. Thank you!

Yesterday morning was rough. I had a massive crying meltdown, which I think I really needed to allow myself to have. I’m sure the pent up anxiety was making things much worse.

I was quite tired yesterday (barely slept the last two nights) and rested a lot and took my son outside to jump in puddles and pick up sticks. Simple but soothing. A long, hot bath with candles and meditation music relaxed me immensely. As someone who usually gets worked up over my messy house, I put that aside and chose to not care about it. That was quite liberating, haha!

I have my first rheumatologist appt tomorrow and I’m really looking forward to (hopefully) knocking this on the head and moving forward with some sort of treatment.

So thankful for this community!

[Blearyeyed]

Glad to see you are taking care of yourself emotionally and not sweating the small stuff.

The little joys in life really are the best complementary medicine we can all indulge in.

How was your appointment ?

Hope it went well , please let us know, and here's a big pat on the back for what you have achieved so far.