ANCA PR3 Rising after finishing Cyclophosphamide and transferring to Azathioprine.

[Investigator1]

Hi Anybody out there, I have been doing really well reducing my ANCA PR3 Levels since diagnosis of GPO in December, they were off the scale but after 4 treatments of Cyclophosphamide it had a marker reading of 56, I then was transferred to Azathioprine and after 6 weeks of it my marker reduced to 40, then 4 weeks later I was told my marker had risen to 52. Has anybody experienced a rise. I am going for Blood Tests this week as I have had pains in my lower abdomen over the weekend. The Doctor doesn’t think the pain is associated with ANCA but wants to run tests just in case. Anybody with similar experiences please.

[Brussels]

Hi,

Why were you transferred to Azathioprine after only 4 Cyclophosamide infusions, most people require 6 or 10.

Do you attend a specialist Vasculitis clinic?

[Investigator1 in reply to Brussels]

Well I asked about that at the time (end of March) the specialist said it was because the ANCA was not causing damage any more, it’s no coincidence that at that time the Covid-19 Virus was reaching a peak, my specialist (who’s has been brilliant throughout) added later that they had to weigh up the risk against going to hospital. Originally 2 weeks after my last Cyclophosphamide I started Azathioprine with 3 x 50mg tablets taken together but after about 4 weeks I was suffering vomiting and Diarrhea my ANCA marker had reduced from 56 to 40 so my specialist said to drop the dose to 2 x 50mg tablets taken separately. I don’t attend a Vasculitis Clinic, it’s the Renal Unit who have Vasculitis experts. My form of GPA is not thought to have Renal involvement but initially it was, that’s why I was referred to them, but they have been brilliant! It was only this weekend I started having pains in my lower back and it moved to my lower tummy and this morning on one side of my rib cage. That’s why I called them I thought it could be a bug or kidney infection but haven’t got any other symptoms and got the news they are Sending me for full blood tests Wednesday morning but they don’t think it’s the ANCA. A bit frustrated because in last 12 weeks got myself really fit, lost the weight I gained on Prednisolone. Just hope they don’t increase the Steroid doses. Take care.

[Brussels in reply to Investigator1]

Problem is it’s not just about your ANCA level! GPA needs to be knocked into submission ( remission ), I understand the risks of COVID 19 but you have only had 4 infusions, your prednisolone and Azathioprine dose has been reduced, your ANCA is rising and you have symptoms.

The question I would be asking is have I had adequate treatment to put my GPA in remission and what are the risks of COVID 19 compared to the risks of insufficiently treated GPA?

Not saying that your specialist isn’t right but the fact that you are posting on here asking this question points to the fact you are concerned.

[Investigator1 in reply to Brussels]

Thanks Brussels, always concerned, will ask about that!

[Chris-Bromsgrove]

Hi, sorry to hear about your woes. It does seem your doctor took a calculated risk in cutting short the Cyclophosphamide treatment. Usually they aim to get you ANCA negative before moving to milder immunosuppression. However some of us (like me) do remain ANCA positive in remission. I think you do need to be monitored closely now to see which way you are heading. Not everyone gets on with Azathioprine (I didn't) but there are alternatives such as Mycophenolate. Hope you get things sorted.

[xz3sgn in reply to Chris-Bromsgrove]

Hi Chris,

How long have you been with positive ANCA ? What level is it ? I'm interested to know as I'm also with positive ANCA for almost five years but fortunately on remission ? Have you heard of anybody reporting gout problems owing to the treatment/medication as side effects ???

Thanks

[Investigator1 in reply to xz3sgn]

Hi Chris, my ANCA PR3 marker is currently 52, after 4 blasts of Cyclophosphamide it came down to 59, then after 6 weeks of Azathioprine it came down to 40, but they cut the Azathioprine from 150mg daily to 100mg and I guess that’s why it rose again so a bit of tinkering might be all that’s needed. I am really lucky that my GPA has never had Renal Involvement and Little Lung Involvement, just eyes, head, and body aches. When diagnosed it was “off the scale” as they reported. Could have been as high as 200+. I was only diagnosed in December so early days. I have got my head around things a bit more now but I got really anxious every time I got a pain or even sneezed. Compared to some poor souls I have had it easy really. Take care.

[Chris-Bromsgrove in reply to xz3sgn]

Hi xz3sgn. My ANCA PR3 readings are generally around 25-30, although I've remained in remission since 2012. I've never had gout and I'm not aware of anyone reporting problems with gout due to medication or treatment.

[xz3sgn in reply to Chris-Bromsgrove]

Many thanks for such a prompt response Chris.

Most Appreciated

[Investigator1 in reply to Chris-Bromsgrove]

Funny thing is, I had gout, had been on Aluprinol for 18 years and then when I went onto Azathioprine in April I was told to stop taking it due to a possible reactions. The pharmacist said Prednisolone would counter act gout anyway, I am only on 7.5mg a day. No sign of gout! Funny old world.

[xz3sgn in reply to Investigator1]

Hi Investigator1,

Many thanks for your response. My consultant wants to start Aluprinol. As you have been taking it for so long did you feel side effects like ulcer etc, Google search suggests that Apple Cider Vineger is helpful but no conclusive reseach. What is your take ????

Takw care

[Investigator1 in reply to xz3sgn]

Hi xz3sgn. Well I started on Azathioprine in mid April and it was 150mg, for the first two or three weeks all was fine and then I started feeling sick about 90 minutes after taking them, the sickness lasted about 2 hours, it got worse where I was actually vomiting and this was followed by bouts of Diarrhoea for about 6 toilet visits over another 90 minutes, I was told that this was normal in the first few weeks until my body got used to it. After about another 3 weeks I contacted my specialist to see if I could split my dose, she dropped it to 100mg and let me split it and to take lansoprazole in early morning and it worked a treat.

[xz3sgn in reply to Investigator1]

Many thnx investigator1. All the best

[MAC12]

Just to say that my own experience, being treated for GPA, was that although 6 infusions of cyclophosphamide had been planned it only took 4 to bring the disease fully into remission (in terms of both ANCA and kidney function) and I was then put into azathioprine. That was eight years ago and I have remained in remission ever since. So if the cyclophosamide treatment has worked there is no need to continue the infusions. I wish you the best of luck.

[Investigator1]

Thanks Mac, a really good reply, I am thinking they will do some adjustments, I know it isn’t unusual to have a bit of a balancing act in the early stages, I am not panicking, feel great at the moment, walking 7.5 miles Mon’ Wed and Fri and cycling 17.5 miles Tue and Thursday. I feel that if I have a bit of a fight in the next few months I can give it my best shot, I am fortunate that I have stuck to a low carb plan for many years so the little weight I gained on Steroids has gone. Thanks mate and take care.

[Clay6852]

Hello, I to was stopped at 4 x cyclophosphamide infusions by my renal team due to covid risks. I was put into myclophenolate moffiet.1000mg twice a day. I still was ANCA positive and ACR 328mg. No way was I in remission but they kept saying my bone aches etc were steroid tapering! I became so ill over the coming weeks I needed walking sticks to walk. I had bilateral pleural effusion!! I’m only 46. They tested my MPO levels which were also high and agreed I was not in remission. They upped my steroids again and I’ve just finished 2nd Rituximab. Feeling much better. They are not specialists in vasculitis, yes they have knowledge. But you need to shout loud and make them here you. Also get a referral to a Center of excellence that run a vasculitis clinic. I’m due to be seen in September at the royal free hospital in London. The vasculitis uk call line can give you details of hospitals close to you. Good luck!!

[ZiggyDiego]

I have GPA and have been ANCA positive since I was diagnosed in January 2017. My reading was off the scale. It came down to 159 after 6 cyclophosphamide. I couldn’t tolerate azathioprine - it gave me stomach pains and made me feel very unwell so I took mycophenolate for 3 months. My ANCA went straight back off the scale again and I was given 4 rituximab. I had scleritis (eyes) and lung involvement again. I relapsed again 8 months later. I’ve now had 10 more rituximabs and my ANCA is down to 19 but rises as soon as the rituximab wears off, so I’m having it every 5 months. I have got to know what my vasculitis does when it’s highly active but it has taken a long time. I still report every problem to my doctors. My specialist at Addenbrookes says GPA has to be the first suspect in any new problem. I hope you get good advice and treatment: it is an art rather than a science, to be honest.