Confused and (lucky?): So, from previous posts... - Vasculitis UK

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Confused and (lucky?)

sealives profile image

So, from previous posts, readers will note I was diagnosed with churgg strauss in April. Consultant (renal because it attacked my kidneys), put me on mexa prednisolone, followed by 12 weeks on cyclphosphamide then onto 150mg per day of azathioprine. After 3 weeks I was re-admitted to hospital with fevers. All meds stopped except for 20mg per day of prednisolone, which incidentally is a maintenance dose I had been taking for years. During the cyclo, I felt terrible with fatigue, muscle weakness etc. Having not been on anything except Pred now for 3 weeks, I estimate I am 80% of the person I was before all this started. Mentally though, I still get headaches and stress related symptoms. Letter from the consultant to my GP today, states I have no vasculitis symptoms, bloods are normal except for a low white blood count and kidneys have recovered well. The plan after 4 weeks is to wean me off Pred and onto 100mg per day of azathioprine. The current 'thought' process is I was over supressed and my immune system needs time to recover - all sounds plausible.

Please dont get the wrong idea, I am very grateful and relieved to be feeling relatively normal again. My question is this - is this what remmission feels like or I am I currently living in a fools paradise? I would be interested to know how others have faired at this time. FYI I am Panca confirmed via kidney biopsy.

12 Replies
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Hi sealives,

I don't have ANCA associated Vasculitis but I do know if caught early and treated appropriately, before end organ damage has occurred, then quick remission is possible. Only time will tell if your remission will be sustained but fingers crossed!

My Mum Was over immune suppressed and contracted pcp pneumonia. Ask about being put on a profolaxis to protect against this.

Hi Sealives

I was diagnosed with MPA in 2012. I remember one of the first posts I read was from somone in remission. The post said something along the lines of "if the Dr says I a have no active Vasculitis why do I feel so crap?" I couldn't relate to that at the time as I had only just started treatment but I certainly can now. Outward signs and blood results don't always reflect how we feel.

You shouldn't feel like like this all of the time but in my case I do get bouts of fatigue often along with headaches. I was put on Azathioprineas a maintenance drug it made me feel worse than the cyclophosphamide treatment. I was given Mycophenolate as alternative which has suited me better. The usual maintenance dose for pred is 5mg. I have recently been weaned off pred and I do suffer more muscle aches/stiffness now.


Hi Chris

Thats interesting as I also felt worse on Azathioprine, than I did on cyclphosphamide. I do agree with the experts that 20mg of Pred. has to stop; I am told its not good long term. My consultant tells me Azathioprine is the best drug during remission and that we should exhaust that as an option before trying anything else.

I am sorry to learn you still suffer from fatigue and headaches. These are also my primary symptoms, along with a stiff neck and neck pain. With me, an early warning sign is when I start fevering, usually because my temperature is above 37.5 - at this time, they call me back to hospital to administer I/V antibiotics. Does anyone else crash in this way?


Wow Steve, I hadn't picked up you had been on the 20mg of pred for years Your consultant is right, you need to reduce the pred dose. I also understand that Azathioprine is the best maintenance drug for ANCA associated Vasculitis but it doesn't suit everyone. I am just thankful that I can normally do most things I do in life before Vasculitis. Chris

Suzym2u profile image

Can I just ask why you were taking 20 mg of prednisolone as a maintenance dose for years before you were actually diagnosed with CSS? Even when remission has been achieved you will still be left with the legacy of irreversible damage. So sadly, you will never be quite as you were before. John reckons that GPA ( WG ) aged him by 10 years, so life is very different to the one we planned but not necessarily worse.

sealives profile image
sealives in reply to Suzym2u

When I was in my early twenties, I started suffering with asthma. I also developed nasal polyps. I was told, (and believed) I had allergic rhinitis; I also lost my sense of smell. Over the intervening years (20's to mid 50's) I used prednisolone a lot. It started off being used to clear up bad chest infections, but I started to use it daily as it helped breathing during exercise. This was in addition to lots of different inhalers. My Doctor and various other consultants tried various other tablets to try and control the breathing, but nothing seemed to work very well, except Pred. So, as I had an open prescription, I just carried on using them (anything from 5mg to 20mg per day). Eventually, as it was noticed I had been using Pred. for a long time, the warning bells sounded and I was sent to see another consultant. This one insisted I ween myself of Pred, which I did over a 3 month period. Interestingly, I came off them completely in February and had my first episode of vasculitis in late March - I think the Pred. was and had been masking this underlying condition for years; so does my consultant.

I recently saw my ENT specialist. He was very interested in what had happened to me and commented that had Panca been suspected earlier, they could have taken a polyp biopsy and then possibly treated me differently.

In summary, I expect I have had vasculitis for at least 25 years, but hidden/controlled by regular doses of Pred.

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Hidden in reply to sealives

Interesting, i have heard quite a few patients who have EGPA tell the same story as it responds well to prednisolone which is routinely prescribed for asthma!

Suzym2u profile image
Suzym2uModerator in reply to sealives

Very interesting , there are two very closely related diseases - eosinophilic asthma and EGPA ( CSS ) . Prof Anoop Chauhan at Portsmouth Hospital has been making a special study of these diseases for several years.

sealives profile image
sealives in reply to Suzym2u

Hmm, I am wondering if I have eosinophilic asthma as well? Do you have any suggestions as to how I could present to Prof Anoop Chauhan - he is not too far from where I live.

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Hidden in reply to sealives

My understanding is that EGPA is especially complex as it can have 2 components, Vasculitic and eosinophilic.

I know that patients with EGPA can have eosinophilic asthma as part of their disease, the tricky thing can be working out when eosinophilic asthma becomes more than that and tips over into EGPA.

You can ask your GP or Consultant for a referral to Prof Chauhan. As you see a Nephrologist but have chest issues too I don't see why that should be a problem.

Following on from above posts, today I am told I am now in remission, which is of course good news.

They tell me all my bloods are now at normal levels - so presumably, this tells them that my immune system (vasculitis EGPA) is under control - Correct? But how do they know to what extent my immune system has been crushed. The reason I am curious is that presumably this can range from a little to a lot. A little could mean that, for example, I could travel internationally (and keep my job), whereas a 'lot' would mean the other extreme.

I am probably asking too much of the science, but I would be interested to know if anyone has a fuller/better explanation as to what this all means.

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