Methotrexate, mycophenolate mofetil and prednisolone

[Wyllow]

Hi all, I have been on Methotrexate, mycophenolate mofetil and prednisolone for just over a year and many side effects are getting worse with new ones arriving. Is anyone else on this mix, I am seeing my rheumatologist soon and am going to ask if anything can be changed, my ANCA level was >177 when first diagnosed but has been 0 for the past couple of blood tests, I have GPA, thanks for any replies

[vivdunstan Volunteer]

For a long time I was on all of steroids, Azathioprine, Mycophenolate and Methotrexate. I even had a very belated (18 years into my disease ...) Cyclophosphamide set of infusions during it, while still on all the others. Oh and I was on Thalidomide as well.

My main side effects from the chemo/immunosuppression drugs were nausea and diarrhoea. With my cocktail especially I needed to go onto permanent twice daily anti nausea (Metoclopramide) and diarrhoea (Loperamide) pills to cope. What side effects are you getting, and yes definitely talk to your rheumatologist.

Were you on Cyclophosphamide and/or Rituximab originally? Has either been considered for you? I would definitely be concerned about being on a cocktail long term. In my case I have primary cerebral vasculitis, and Rituximab isn't approved for it generally. So my options were more limited. Cyclophosphamide was also initially ruled out by the consultant for fertility concerns, and then because it might worsen my already dire bladder incontinence. But I finally demanded it 10 years ago, Cyclophosphamide, and it stabilised me like nothing else, and I've since managed to reduce (but not remove) my cocktail.

It might be worth you chatting to the Vasculitis UK helpline too. Their contact details are at vasculitis.org.uk/helpline

Good luck!

[Wyllow in reply to vivdunstan]

Thanks so much for your reply, I have never been offered Cyclophosphamide or Rituximab. My side effects started out as weight gain no matter what I ate, anxiety, not being able to sleep. For the past few months though I have been suffering with deep depression (my doctor has upped my Citalopram to 40mg a day but I find myself constantly crying and in despair) upset stomach (taking Imodium every day and had tests from doctor which were negative), swollen feet and ankles and delightfully my head but nothing else running with rivulets of sweat and getting about 2 to 3 hours sleep a night. I’m glad you’ve been able to reduce your meds and thanks for the help line link. I think my body is seriously starting to object to the cocktail I am on!

[yogarita1955 in reply to Wyllow]

Ooo i feel sorry to here your story

retixamab is the answer i think i have had them all and my mental health was so bad retixamab made me feel normal again nothing else worked i have GPA

[Wyllow in reply to yogarita1955]

Thanks yogarita1955, I’m glad Rituximab has worked for you, I’ll ask my rheumatologist if he thinks it will help me, I desperately need something to change

[yogarita1955 in reply to Wyllow]

push for it i did

it is expensive but believe me it works

good look x

[Wyllow]

Thank you x

[zoe69 Administrator Volunteer Vasculitis UK]

It is positive that your ANCA level went down to normal range, but how about your inflammation markers and symptoms?

Has this been the only treatment you had or did you have cyclophosphamide or Rituximab as initial treatment?

If you have constant side effect symptoms from the treatment, you should discuss it with your consultant and ask for alternative treatment plan. If you are in clinical remission methotrexate or azathioprine could be an option.

[Wyllow in reply to zoe69]

Hi Zoe, I have never been offered cyclophosphamide or Rituximab. I have been on Methotrexate, mycophenolate mofetil and prednisolone taken all together from the start. My ANCA markers were 0 for the last 2 blood tests, I don’t understand all the other figures in the report but my rheumatologist said it all looks ok. I had another blood test a couple of weeks ago and have an appointment with my rheumatologist next week, I will ask him about changing my meds. My initial symptoms for months before diagnosis were extreme pain in my hands, scleritis in my eye, crusting and bleeding in my nose, lots of visits to my doctor. I ended up in hospital with blood clots on my lungs where GPA was diagnosed. All the initial symptoms are better, the side effects from the meds are getting worse

[zoe69 Administrator Volunteer Vasculitis UK in reply to Wyllow]

Are you sure is not vasculitis cuasing issues? If you need help to understand your tests or have a chat about your options give the VUK helpline a call 0300 365 0075

[Wyllow in reply to zoe69]

Thanks Zoe for the helpline number, I will see what my latest results are when I see my rheumatologist next week and ask him to explain in more detail, hopefully he will help with changing my meds. I will call the helpline if I need more information after my appointment

[Investigator1]

I think the side effects will mostly come from the Prednisolone,and that’s what they try to get you off if they can especially as your ANCA is so low, I was like you 177+ when diagnosed and now 4-5 but off steroids for well over a year now. Currently on Rituximab only. Worth having that conversation about a new plan.

[Wyllow in reply to Investigator1]

Thanks Investigater1, I am very slowly reducing on the Prednisolone but there’s months to go yet on the schedule I’m on. I too think it’s the prednisolone causing most of my problems

[EGPAGuy]

I too had a period on Pred/Myco..15mg/3g daily and Pred/Aza 15/150. Side effects were truely awful and had to drop them both. Myco had lung issues and Aza was truely awful..made my head spin 24/7 and was heaving 5 times a day.

[Investigator1]

oh blimey, ame as EGPAguy, Azathioprine, heaving, the squirts, felt terrible.

[Cookyboy1]

No just rituximab and prednisone, Co-trimoxazole 3x a week and rivaroxaban every day as I had a D V T. At my diagnosis my pr3 anca was 10 and after 2 years of rituximab and steroids was /is currently at 3.8.last infusion was nearly a year ago, started feeling very tired aches n pain's and possibly periferal neuropathy, having another infusion of rituximab on the 19th September and other meds, not sure what they will be as I have finished the prednisone. Hope you feel better soon and get the meds you need to help you. 👌

[Wyllow]

Thanks everyone for your comments, these different meds we have to take seem almost as bad as the disease, hoping my rheumatologist will change mine when I see him next week