Anca vasculitis

[Westley]

I have had this illness about seven years now and am not having infusions now though I do have an injection of methotrexate every week. I live a quite busy life but am always tired as vasculitis gives me chronic fatigue and bad pains in joints. Now apparently a lot of the pain is I'm told arthritis. What I am asking is, does vasculitis cause arthritis ? Just wondered if anyone else has found anca to be so painful?

[StephanieDiane]

Hi l have MPA anca positive,diagnosed 13 years ago , I still see the nephrologist every 3 months but l saw rumotolagist last Thursday,as lalso have osteoarthritis.

[gooseflight]

Hmm. Were you on Rituximab before? I would be asking if the arthritis is a symptom of vasculitis (skin and joint involvement is common) or is there some other cause? If the former then your vasculitis is not under control. Are you on prednisolone as well?

[Olive456]

Hi, I have been diagnosed with GPA Vasculitus over 2 years ago. It is now under control after infusions of Rituximab. Just had my 6th. Before that I was on Prednisone and Mycophenolate, which kept it under control to some point. But then I did have terrible joint pains and swelling on knee ankles and left wrist as they tried to wean me off steroids. So yes arthritic symptoms were there. Hope this helps?!

[Mooka]

They can send you for an xray to confirm it’s arthritis. Prednisone disguises a lot of aches and pains and so as we reduce the dose we realise we have a lot more achy joints. I was told if the pain seems to move around the joints it’s likely to be vasculitis if it’s constant it’s arthritis. Not sure if that’s correct or not.

[SusanEleven in reply to Mooka]

Yes, my early prednisone years and the occasional higher dose bursts through the years definitely disguised the pain from my arthritis progressing. Prednisone is the best worst drug :>) I miss having a grip (I drop things constantly), having fingers and thumb joints that don't ache constantly, and being able to walk without pain.

[Diamister]

hi Westley. I was diagnosed with Anca after having arthritis-like symptoms for only a couple of months. Doctor prescribed a lot of ibuprofen for 6 weeks which reduced the symptoms but probably brought on kidney failure along with the vasculitis. so I now have stage 5 kidney failure. But no signs of arthritis funnily enough.

[dbjuly23 in reply to Diamister]

Hi. I was diagnosed with ANCA vasculitis in 2022. It took a while to diagnose and resulted in renal failure and also caused pulmonary haemorrhage. I've had a rough 2 years but don't give up hope. I too was on peritoneal dialysis but was lucky to get a kidney transplant a few months ago ( even though I had a very low chance of one due to rare tissue type and antibodies) and I'm feeling better now that I've recovered from the surgery. I hope you get a transplant too.

[gooseflight in reply to Diamister]

Probably more correct to say that kidney involvement was missed and problem may have been exacerbated by ibuprofen. I am surprised that given your rapid diagnosis your kidneys were not checked. Even a urine test would likely have shown haematuria/proteinuria, which should have resulted in a biopsy.

[Diamister in reply to gooseflight]

I’m sure that’s true. Probably wouldn’t have made a lot of difference. Currently waiting patiently for live donor testing.

[Westley in reply to Diamister]

Hi Diamister, thank you so much for your reply. I found your reply very helpful

[Investigator1]

I was diagnosed in 2019 still on Rituximab, definitely suffering from joint pain but I think for me it’s the Rituximab because it’s almost like “Arthritis Light” I do suffer but it’s sporadic and it usually occurs 4-8 weeks after infusion. Exercise can be a bit of an ordeal but I grin and bear it because it does seem to ease things. It’s mostly in my ankles and knees but y’know back in the day I represented the School, Area (Richmondshire) and County (North Yorkshire) in Football, Rugby, Athletics and Cross Country so I suppose I had it coming knowing what I know now. The way I look at it getting older is like a Stranglers line in Peaches (look like I’m gonna be stuck here the whole summer well what a *&£#%+ ) but it could be a lot worse, none of us can change the hand we have been dealt but we can change the game using the same hand and make it fit. I was in South Africa on holiday last week, woke up one morning after a great nights sleep to find my knee and ankle (right) was hurting and stabbing when I walked, then next day my hip, but then next day completely gone. How can that be? I don’t get it. Take care all. Nick.

[SusanEleven in reply to Investigator1]

Exercise helps me with the hip arthritis (both hips). A physical therapist taught me exercises that strengthen my core and other muscles that help offset the strain/pain on my hips.

[EGPAGuy]

Hi Westley. Interesting question which I asked recently whilst I was getting a cortisol shot in my knee. As well as tearing a ligament I have osteoarthritis rendering an op other than a knee replacement pointless. I have now also noticed a pain in my shoulders and have had to stop playing banjo because I can no longer move my fingers with the accuary and speed required. No link between the 2 according to knee specialist but will ask specific question when I am at Addenbrookes next. Dr Google seems to suggest a link between inflammatory disorders and Osteoporosis so perhaps there is something there.

[Westley in reply to EGPAGuy]

Hi Guy yes it's interesting the different reasons we are told for the pains in joints. So is it because of our illness or age its difficult to know. I do hope you manage to get some relief for your knee

[sunshineday]

Hi, my hubby has RA, then started with peripheral neuropathy, the neurologist thought the cause was rheumatoid vasculitis. Hubby had a nerve biopsy which confirmed that RV was the cause of the neuropathy but the RV was a result of having RA. it's a bit like chicken and egg!!

[SusanEleven]

I was diagnosed with GPA last year after being misdiagnosed for six years by a previous rheumatologist. No renal involvement but it did give me interstitial lung disease.

I have daily pain and I do have osteoarthritis confirmed by x-ray. Hips, hands, and now seen in my spine at the site of a previous injury. My left hip is totally trashed from the arthritis, bone on bone, but an orthopedic surgeon told me that while on rituximab infusions he considers me at too high a risk of infection for hip replacement surgery. I use a cane to get around. I've had three rituximab infusions so far (#4 coming in September). My latest blood work looks good and my lung CT was greatly improved.

My rheumatologist says my pain now is from the arthritis, versus the original pains years ago that were the (originally misdiagnosed) vasculitis. Next appointment we'll discuss what might be helpful. I'd been warned off ibuprofen since the beginning of prednisone use because of the risk of gastric bleed. (I take one occasionally on a full stomach.) I've been on prednisone for 7 years, low dose for the last several, and am slowly weaning off the last few milligrams. That has set off a world of heightened pain as well, which both my rheumatologist and endocrinologist told me would happen. I feel like I'm 100 years old between the constant fatigue and the pain.

I had to do a month long high dose steroid burst in late 2023. It made me emotionally volatile and a champion insomniac but my hips were so happy I felt like I could run a marathon. Sigh.

[P123sue]

hi ,I find pain is an everyday event foe me ( also on mtx weekly) .iv had a recent infusion and initially was ok now the tiredness joint pain back pain throat pain etc is back.I think it’s governed by how much I do ,if I overdo things it gets worse .Sometimes I think it’s just part of getting older .I think trust your gut feeling if it’s not right go back to docs .I haven’t found them particularly helpful in giving pain relief they say take paracetamol 🙄 but if it’s extreme please go and get.ooked at

[trijaws]

I can't say if Vasculitis "causes" arthritis, but my rheumatologist did advise me that with Vasculitis, one can be more likely to suffer with arthritis. I've had AAV since 2016 and still have some fatigue. Exercise (walking, cycling, using light weight machines) seems to help me with my endurance. My rituximab infusions stopped 5 yrs ago and I am "long term remission off drugs". Have you spoken with your clinician about slowly weening you off methotrexate? Getting drug free is the main goal here.