I have been in remission now from MPA over two and a half year. I have also been very fortunate that post remission I have been able to resume a near normal active life. Fatigue has been there now and again but it has not caused too many problems. However things changed last April. I had a bad cold virus which eventually cleared up but left me with a cough which slowly subsided and is now almost gone. Shortly after the virus I started to experience bouts of fatigue which gradually got worse and more frequent. Most of May was pretty awful, June has shown a bit of improvement but it has significantly changed what I can do on a day to day basis (something I find difficult to accept and I keep battling with it). No doubt many of you will be thinking “welcome to the club”.
I was also getting muscle aches in my legs and it did lead me to believe my vasculitis was flaring. However after blood tests and a visit to my consultant I have been told there is nothing to indicate vasculitis activity. It has been put down to post viral fatigue which seems to last as long as it lasts according to what I have read. Despite being in remission I have remained ANCA positive and I was wondering if vasculitis is playing some part in this. That’s a question I am going to have to ask the consultant next time but I was wondering if anyone else has experience this sort of fatigue.
Chris
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Chris-Bromsgrove
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I have MPA as well and had been 3 years in remission. Then I too started to feel less well, more fatigue and pains in feet again. All slowly getting worse. This was march 2014. My consultant did anca test and it showed they were rising. It was suggested that the azathioprine wasn't working as well now. So I started steroids again and changed to mycophenalate. I can't take methotrexate as I have chest involvement. Anyway that didn't do for me either so in February I had rituximab. 2 treatments. And now my anca has dropped again and I am reducing the steroids. My consultant says that in my case anca is a good telling point. Along with ESR and crp.
I am back on the mend again with no worse damage this time. So I would ask for an anca test along with you bloods to see if anything is going on. It does come on slowly so listen to your body as they say.
Like you and Lynne, I'm always ANCA +ve but with no blatant WG symptoms - apart from the need for a regular afternoon nap & muscle & joint pains. Unlike you & Lynne, I can blame old age!! The fatigue seems to be associated with underlying inflammatory activity and probably associated with autonomic nervous system activity - it's a deep subject! Rituximab might be the solution to your problems, if your consultant can get approval. It does seem to be very good for overcoming those problems that other drugs don't get to grips with.
Hi Chris, I have GPA and have been in remission for some time, but still in mycholphenolate and prednisolone. Like you my fatigue seems to be getting worse and some days are a real struggle to get through. So much so that Its affecting my quality of life.
My husband who is free from vasculitis but suffered severe fatigue was found to be very low in Vitamin D. After treatment he is almost back to his normal self.
I am going to request a blood test next time I'm at clinic.
Also if your on a statin it can raise your C K levels causes muscle aches and pains etc. both are worth checking if only to discount them.
Whatever the cause is I hope they find the cause and the fatigue improves.
Best wishes
Hi Chris, I recently (about 2 months ago) had a cold which went to my chest. It seemed to go on for weeks. I was also getting the dreded sinus pain (the area where my WG usually strikes first) and fatigue. The only point of concern in my bloods was that my kidney function wasn't as good as previously, but mine is up and down anyway. My GP agreed to give me a one week course of antibiotics, that was about a month ago. Luckily it cleared up and the fatigue has lifted. (I should mention that I also introduced B12, omega3 and magnesium into my diet through supplements and went gluten free at around the same time, but I have no idea what, if any, difference it made to my recovery).
Thank you for all of your advice. By way of an update I have just received another appointment letter from the Vasculitis Clinic. It looks they are going to further monitor how I am going on
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