I had got myself into a good position with my ANCA marker after Cyclophosphamide and Prednisolone and after monthly blood tests it’s started to creep up from 40 to 51 to 62. Not a massive increase and no returning symptoms. The last blood test results for ANCA was early August because I had to go local for blood tests in September and they cocked it up. Anyway my point is folks it was only a week before my last ANCA Test my specialist put my Azathioprine dose up from 100mg per day to 150mg. So my questions are:
1/ Is a week too early between increase in dose and test to see a difference?
2/ Has anybody had instances where Azathioprine just doesn't work?
3/ Am I being over optimistic re timescales.
My Specialist doesn't seem worried but I am not due to see her and have my bloods done until 12th Oct so I have taken things into my own hands and got my GP yesterday to book me an ANCA Test for next week, the results will then be available for my specialist when I go in October. It will be 8 weeks between ANCA tests so I am hoping for positive news. All my other bloods I.e Kidney, Liver, Haemoglobin are spot on. It’s chaos at the hospital where my specialist is now because Covid is taking over again.
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Investigator1
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I was only on azathrioprine for a few months. I changed hospitals and went on to rituximab as I wasn’t improving. However this was judged on my symptoms rather than ANCA results. I’m sorry I don’t have the answers to your questions.
My OH was initially on 150 mgs of AZA which was reduced after 18 months to 100mgs as he was doing well.
Early this year he had a relapse and has just had RTX and his oral medication has been changed.
I understand from other posts that AZA does not always control vasculitis and sometimes the consultant needs to change medication we have learned that it’s bit an exact science and experience of the consultant is really important.
I was on azathioprine as a maintenance therapy for about 2.5 years. However apparent flares (i.e. vasculitic rash) became increasingly frequent, each time treated with a short dose of prednisolone. My consultant was concerned that the azathioprine was not working well enough and didn't like me taking prednisolone too frequently. We therefore switched from azathioprine to rituximab, which has been very successful, with flares almost elminated. When they do occur, they almost always subside of their own accord within a week or so, leaving no adverse effects.
As indicated by the other replies Azathioprine can stop being effective as a maintenance therapy but in your case I think that is too early to tell. From what I understand Aza suppresses the production of new white blood cells so I think the effect of dose increase may need longer than a week. I am currently in a similar situation (although my poison is Mycophenolate). ANCA levels have remained stable in the mid twenties, since 2012. However over the last 12 months they have started to creep up. The last reading at the hospital (prior to lockdown) was 65 and like you all other blood results are stable. Also no change physically. After much too-ing and fro-ing I managed to get a full set of bloods done at my GP surgery. I've been told the results are OK but the key one (ANCA) they couldn't give me because it has been sent to the Vasculitis clinic at the QE for review. So like you I wait with baited breath for an answer from my consultant. As yet I have not had an increase in dose of Mycophenolate.
Wow Chris! How similar! I sometimes think that I am at the bottom of the list when it comes to being dealt with. I am giving bloods via my Local GP on Tuesday for ANCA PR3 only so I am ready with results for my Consultant on the 12th Oct. Of course it would be unthinkable to think that I could return to what I was, but I dare say possible. What a waste of time effort and taxpayers money, let alone the summer I have totally dedicated to getting fit and doing my part. Hopefully it won’t come to that. My Consultant is a Renal specialist and brilliant but it’s getting to her if there is a problem if there is an issue, I ring her secretary (sparingly) but she never gets back to me, sometimes after persistent reminders it’s taken 3 weeks and levels have risen and time lost. If another rise is recorded on Tuesday I am going in like a gunboat, I can’t have this Covid or not. I will let you know mate.
I agree, you really need an answer from an expert on this. The GP posted my blood results which came through today. ANCA PR3 has dropped to 38 which is good news. I'll see if I get a response from my consultant. Good luck with the bloods.
I'm going to answer you here, without reading anyone else's answers. Firstly 'Yes' Drugs can, and often do, take Time to have an effect, so it is Not unusual that your Results hadn't changed much.
As regards Azathioprine, I was On this drug, until my Kidney Transplant- way back in July 2013. I was On it for about twelve years, it Worked Well for me- with little, or no, 'Side Effects'.
Can I ask you some questions please Investigator1..... From your 'Post' you seem quite Well, relatively speaking anyway, your Blood Results are also 'Stable'...... so why are you so apparently Worried? Most of us would be 'Cock-A-Hoop' with Stable Results like yours. Has anyone, in the Medical Profession, suggested to you that there might be a 'Problem'?
As regards your Results 'creeping up a bit'..... IF that is a Problem then, Your Doctors/ Consultants WILL 'Tell You'.
So What IS worrying you so Investigator1, is there 'something' that you are not mentioning? Maybe a Pain, Itch, Sickness, Tummy Upset....ALL unfortunately quite 'Normal', with Auto- Immune Conditions, I'm afraid.
If you prefer you can Private Message me, I appreciate that there might be 'things' you would rather not put, on an open 'Forum'.
Hi AndrewT thank you for your directness it’s quite refreshing. Yes I am in good health otherwise, bloods “spot on” as described by my Consultant. Fitness levels good as cycling 50 miles pow week and walking 20 miles per week. My worry is this, after getting down my ANCA to a really low level I have a fear because of 3 x consecutive rises they are dropping the ball, with Covid coming back treatment at hospital is becoming more difficult and I just don’t want to go back where I was. Yes I have tummy pain sometimes, yes I had to go back to an inhaler recently but my specialist doesn't seem worried about either. I guess my anxiety comes from the fact that at 59 years old I have never had any serious illness and I am a worrier as it’s all new to me. Every little headache, tummy pain, back pain has me thinking although I am getting better at just accepting them. Thanks mate appreciate it.
I had Azthioprine 50 mgs rising quickly to 100 mg and due to go to 120mg which was thought to be the right dose for this body. It did nothing for the Vasculitis or the Erythromelagia (burning feet syndrome) secondary to it. But it hit my liver big time and only 2 weeks of starting on the 100mg dose. Alt, alk phos and gamma GT were 4x, 5x and 10x normal values respectively. I felt rubbish. Needless to say I came off it and am now ticking over nicely on Rituximab. Best wishes A
Andrew has hit it on the head here with his advice. I was on Aza for four years [100mg up to 15mg after a bit] but then didn't feel great and shadow creeping back in my lung so was switched to Rituximab Oct '19 which is a more toxic drug to be on on the long term - the second round six months later got cancelled because of Covid and I have just had the second round three weeks ago. I managed fine through these months without treatment and didn't worry unduly as I really don't think this helps [ worrying and stress are what I believe got me into this mess so I don't now].
You don't say when you were diagnosed but presumably relatively recently and I think perhaps you are understandably worrying too much. Believe me, when there is something to worry about, you will know. I was diagnosed 4.5 years ago and still can only walk a mile [haven't tried cycling] but when I hoover I need to rest for 10 mins and also after showering and hanging out washing etc. Everyone of us is different so although we can all advise we can't predict that our advice will have the same result for you. Please have confidence in your specialist and I wish you all the best.
Hi there, I have EGPA, my main meds have been Prednisone, Azathioprine, and then Rituximab over the last 4 years. My Aza dose was holding steady at 125mg, and we tried to taper the prednisone down. Reached 8mg and then relapsed. Prednisone went back up to about 30mg and rheumy decided to add Rituximab. Got stable and have gone to 6month maintenance for the Ritux, stayed at 125mg for the Aza, and prednisone tapered down to 5mg. That process has taken 4 years. Rheumy says we should stay put for a while. I was under the impression that we're trying to get the Prednisone as low as possible and rely on the Aza instead (they call this steroid sparing). If that goes well for a time, then lower the Aza and stay with the Rituxan. Then eventually stop the rituxan too. aha! Yay! maybe...
So, it may take weeks to months to see changes, try to be patient.
Azathioprine does not work for everyone, your results may vary. In my case, we had to add the Rituxan too.
Hi, I feel pretty good, all things considered. Compared to a couple of years ago, this is great! I am mostly pain-free! I can now walk and hike, drive, work- sort of . I write and research for patient health education, and the problems now is fatigue, ability to focus, concentrate, memory. Now, my therapy centers on management of the steroid-induced problems, diabetes, high blood pressure. I now have severe osteoporosis in my spine and hip, 2 compression fractures in my vertebrae. But.... I'm alive
I am still building up strength from a bad COVID experience in April. When I got out of the hospital, I couldn't walk without assistance. I was extremely weak from malnutrition and muscle loss from being on a ventilator for almost 3 weeks. Months later, I still tire easily and feel fatigued when doing regular chores. I have to say it was a big setback from the EGPA recovery.
For those of us who are immunosuppressed - I urge you to do whatever you need to to avoid getting this virus. It's real, it's deadly and it will kill you. I retreated to isolation way before they were talking about it getting bad here and I still got because my husband got it. After that, there was nothing I could do expect hope that the virus wouldn't kill me. I was in the hospital for a month, in isolation and unable to see my family. I felt distressed that I may die without even getting to say goodbye. That I survived, without major injury, is noting short of miraculous. Kudos to my wonderful doctors and nurses!
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ANCA BLOOD TEST
Stopping Azathioprine
