Medication on GPA

[Mingtai]

Hi everyone, I was diagnosed with GPA in February 2020. I was wondering what medications others are on. Im on 4 500mg mycophenolate daily, calceous and alendronic acid. I was tapered off predisinolone and stopped in May 2021 and also stopped co tricamazole. I get no feed back from consultant or gp so wondered since I've recently had a flare if i should be back on steriods or if I should stop alendronic acid and calceous.

[May7]

Hello Mingtai, I seem to remember you posting here about a month ago, having received little or no communication from your consultant. Have you had no luck in contacting the secretary for blood test results and other info? You really need to get advice from the consultant regarding your meds following your flare. It's not good enough them leaving you on your own, and you must pester them until satisfied in my opinion. In answer to your question to us, I am on low dose preds ( my body can't take living without them as my kidneys suffer) and I take 2x 500mg Mycophenolate specifically for my EGPA. Are you on Alendronic acid for your bones, due to taking steroids? That is a separate issue I would have thought, and also needs looking into. I was on that, following a vertebral fracture , soon after taking steroids, but have been on other bone medication since. Good luck with getting through to your relevant doctors.

[citygirl1234]

Hi Mingtai,

I’m on low dose pred and methotrexate for my GPA. I had co-trixomazole in the past but they stopped it when I started methotrexate (they can interact). Usually if I’m flaring I try and contact rheumatology so my consultant can review and decide if my treatment needs to be upped (usually by upping steroids for a few weeks and then reviewing). (My rheumatologist takes the lead for my GPA - for some people it might be a nephrologist). My GP defers to my rheumatologist for flares, but has helped me out before by contacting rheumatology for me in the past if I haven’t been able to get through.

Have they given you a number to call to speak to a nurse, or an email address? If you have no luck with that, sometimes contacting the consultant’s secretary directly can help. I think you need to be reviewed and hope you can get through to one of your doctors

[Roughley17]

Hi MingtaiI was diagnosed with GPA in Feb 2020 and am now on Mycophenolate,same dose as you. I also take Alendronic Acid, Calcichew and am still on Prednisolone 5mgs daily. I find it shocking that you aren't being monitored as I see my Consultant every three months and have regular blood tests. I agree with May 7 (below) that you must pester your Consultant as you need advice. I wouldn't change any meds without speaking to your doctor first. I believe the Alendronic Acid are to help keep your bones strong. Please 'phone your Consultant's secretary and if you get no response, make a formal complaint.

Good luck.

[Mingtai in reply to Roughley17]

thanks to everyone who replied to my query about medication, y our replies were very helpful. I have a number for a nurse specialist although its an answering machine when I ring, she will usually get back to me about a week or 10 days later. I have left a message to say Im concerned about my treatment and await her reply.

This website is a very helpful tool and has helped me make a bit of sense of things.

Ill let you all know if I get any information.

[Sparkypatrick]

Prednisolone leaches calcium from your system, which alendronic acid and calcium supplements would protect from. I don't think Mycophenolate has any such effect, so you probably don't need those unless you have other risk factors for osteoporosis.

At least check with your GP before stopping anything.

[Mingtai in reply to Sparkypatrick]

Thankyou sparkypatrick, Ive taken your advice on board and will ring GP on Monday, whteher I get an appointment is another matter.

[Sparkypatrick in reply to Mingtai]

It is a challenge! 🤞

[Aviatrix]

Hi Mingtain, I have EGPA and in the past have been on 2000 mg daily of mychophenalate which is a much better drug than methetrexate. Here at Oxford, before Covid I had a number for the nurses/drs if I had a flare and they answered within 24 hours, usually within 2 and, if they couldn't help referred me to the consultant or into a flare clinic urgently. With Covid that number has ceased but there is an email I can contact them on. I've learned to recognise my signs and know what my bloods should look like. Recently they haven;t been as good - my last flare in November was treated with a phone consultation for Feb despite abnormal eaosinophils and neutrophils. I coped by a wonderful GP who asked me what I needed which ended up being anti-biotics and 2 short courses of pred. I'm now lucky enough to be on mepopulzimab which, so far is looking good.

[Mingtai in reply to Aviatrix]

Hi Aviatrix, Thank you for your reply. I'm glad youre getting sorted. I'm waiting a call back from my Nurse Specialist and will try to speak tp GP on Monday. Hopefully Ill get sorted too.

[orthotist]

I also have gpa . I have never heard of mycophenolate .since remission achieved by cyclophosphamide I have been on150mg azathioprine daily this worked well unfortunately I stopped taking it to get good response from vaccines and thought I might be cured of gpa this caused a flare up which is proving difficult to reverse despite prednisolone and higher dose of azathioprine how is your haemaglobin level mines declined steadily and is now under investigation

[John_Mills Volunteer]

You need to talk to your consultant asap. Your consultant has a duty of care to care for you. It could be that MMF is just not working for you and you need a review appointment