GPA under control but still get joint pain

[rwl89t1967]

I have GPA which is under control but I still get joint pain. My rheumatologist has scanned my joints & says its not inflammatory so is unrelated to the gpa. She says it's osteoarthritis. I'm not so sure. Has anyone else experienced this & can I still have joint pain related to vasculitis if my bloods are stable /normal?

[Jackie1406]

Yeh, I am same AAV under control but terrible joint pain especially in my legs. My Rheumatologist also said osteoarthritis and it’s due to the amount of steroids I have taken over the years. But like you I think it’s caused by the Vasculitis. Keep well 👍

[rwl89t1967 in reply to Jackie1406]

Ah good to know 😁 I asked my rheumatologist if steroids contributed to osteoarthritis & she said no!

[1943bonnie in reply to Jackie1406]

i am in remission for GPA vasculitis, but still have pain in joints. it feels like my whole body. my Dr. says i have underlying factors ( fibromyalgia) i still think it is vasculitis. blood work all normal. i find it difficult to understand the reasoning, when a lot of what i read seems related.the only thing dr. looks at is blood tests. stay strong

[buster1502]

Hi yes I have GPA I am in remission but still get joint pain all my bloods are all normal so they say I am ok joint an muscles pain is like it was when diagnosed but not as bad I am on 40mg amitriptyline

[rwl89t1967 in reply to buster1502]

Dies your rheumatologist agree your pain is linked to vasculitis?

[buster1502 in reply to rwl89t1967]

Hi he said look at it like you had a storm go though your body and that's the damage done

[rwl89t1967 in reply to buster1502]

Good one 😁

[Mooka]

Yes my mpa is under control and still have joint and muscle pain and pins and needles. I had hip x rayed to see if it was caused by steroids and was told it was degeneration wear and tear. As my vas consultant sent me for the x Ray I assumed they could tell if it was Vasculitis/steroid related. I also have sciatica so not sure how much that is to blame for some of the symptoms. I was told a while ago if the pain is transient then it’s Vasculitis. If it’s constant it’s something else. Whatever the cause it’s not nice and you have my sympathies.

[rwl89t1967 in reply to Mooka]

Oh transient pain makes sense. I haven't always got the pain. Thank you

[tracey65]

Yes I’m told the same and they also say fibromyalgia I’m always taking pain killers

[rwl89t1967 in reply to tracey65]

I have checked the symptoms of fibro myalgia & can't say I fit them. Thank you

[NikkiFlack]

I am the same as you I have GPA which is under control but was getting joint pain. I have been taking Tumeric as a supplement as I read it helps with joint pain and my joint pain has improved considerably - I checked with my Rheumatologist before taking it and she said it was ok. You need to make sure you get the right supplement as it needs to have a certain level of Curcumin in it and they say black pepper extract helps it absorb into the body. I get mine from the Autoimmune Institute which you can buy through Amazon. It has really helped me so maybe give it a go.

[rwl89t1967 in reply to NikkiFlack]

Thank you for that tip. I try and add turmeric to my food.

[Gjw62]

I get exactly the same joint pain but egpa seems to be ok at the moment

[rwl89t1967 in reply to Gjw62]

Keep well x

[1943bonnie]

i have the same problems, my DR. says i am in remission, but still have some of the symptom's . i don't understand. wish i could be a help.

[rwl89t1967 in reply to 1943bonnie]

It's so frustrating isn't it. I'm waiting to see a specialist to find some answers.

[poppet2]

I too am the same. Get terrible problems with my legs and lower back in the main. My rheumatologist also says not related to GPA as bloods okay, x rays say not conclusive with osteoarthritis, but didn't suffer pain and weakness like this until GPA diagnosed. I wish someone knew what the cause was.

[rwl89t1967 in reply to poppet2]

So frustrating, I'm just reassured because all these replies are similar to my experience. I'm waiting for a second opinion & hopefully find some answers. I've been struggling with work so off at the monent

[michichgo]

MPA with kidney involvement, diagnosed in July 2013. My disease is currently deemed to be "in remission". That aside, I have significant joint and muscle pain, as well as neuropathy pain in my feet and hands. I'm unable to return to my pre-diagnosis life. Too many other significant health issues have been diagnosed in the past 6 years.

My opinion? Vasculitis does a lot more damage than most physicians realize & successful treatment for the systemic issues is incredibly difficult for many doctors.

[rwl89t1967 in reply to michichgo]

You are right.

[ZiggyDiego]

I have had osteoarthritis for many years in many joints. Now I have GPA as well. The pain is different. Osteoarthritis is a constant draining pain, often flares up & settles down, always painful. I found GPA joint pain stopped me moving and moved rapidly from joint to joint. The only relief before I was diagnosed was with rest. That was nearly three years ago. I still get GPA type pain but it’s much more transient. The new ongoing pain is neuropathy, caused by GPA. I’ve always been highly ANCA positive so ongoing symptoms are part of the deal. Find gentle regular exercise, good company & interesting things to do are the best painkillers. Wishing you well.

[rwl89t1967 in reply to ZiggyDiego]

Your reply makes sense. I'm starting to think I'm imagining all this! I'm convinced these joint pains are gpa related. Thank you for your reassuring reply

[rwl89t1967 in reply to ZiggyDiego]

Hi, when you say you're highly Anca positive, are you referring to the titre levels? Mine is consistently >1:320 but pr3 levels in a normal range. Do you think that's why I still have joint pain & fatigue? I think we will always have the ANCA antibodies but should they be so high? The lowest they've been is 1:40 on one occasion.

[ZiggyDiego in reply to rwl89t1967]

Sorry it’s taken a while to reply.

I might ask my consultant to explain the “titre level” as I have always had one number. For most of the time it appears like this PR3 ANCA >177 I assume this is because they can’t reliably count the ANCA higher than 177. I got down to 38 in March but was then heading back up to 51 in June when I had my last rituximab. So I was getting another round of the incapacitating joint pain that comes with GPA. I just get twinges now, echoes of it, unlike the grinding continuous pain of my osteoarthritis. I find the rituximab really helps with fatigue: I can have a shower, get dressed and empty the dishwasher with a big rest in between each one. This will last for another couple of months if I’m lucky! Hope that makes sense.

[1943bonnie]

I have the same challenge's My Dr. says the same thing. my blood work is good. go figure it does not answer my question . why the pain and fatigue. sorry you are going through this. rest and take care. God Bless

[rwl89t1967 in reply to 1943bonnie]

It's good to know I'm not alone x