Mpa vasculitis

Hi all. I’ve recently been diagnosed with mpa after months of ilness and testing. Has anyone had eye problems and what other symptoms have you experienced? I currently have terrible trembling which is driving me mad. Is this down to steroids or cyclophosphamide?

Thanks

[AmyS1]

Eye problems can be serious. Make sure that you see an ophthalmologist with experience in Vasculitis. E.g. at a specialist eye hospital.

[Hidden in reply to AmyS1]

Thank you. I’m due to see my consultant in 3 weeks so I will be raising it then. They keep weeping and when I try to dry them it hurts.

[charleydee]

Hi sorry to hear that. i was diagnosed in 2015 with MPA anca positive...kidneys nervous system and eyes affected. i see an ophthalmologist regularly, i am border line glaucoma and have dry eyes, so various drops regularly every day...the dry eyes can be painful. so please go and be checked out...good luck

[Hidden in reply to charleydee]

Poor you. I have as many of the symptoms as you can imagine, the eyes are worrying me a bit tho. I will mention it among all the other stuff I will be mentioning haha. Thanks for your reply.

[Rachelle_Labelle]

Hi Johnnyboy66,

I am an MPA (microscopic polyangiitis) survivor. When they finally diagnosed me, they gave me an I.V. cocktail of chemicals including cyclophosphamide. After three days I was surprised that I could stand and, supported by two doctors(because my leg muscles had atrophied and my immune system had damaged many small blood vessels and nerves), I could walk without feeling excruciating pain. Then they changed the drug therapy to Azathiaprine and Prednisone, along with Tylenol, iron supplements, nerve taming medication and others. I did have a mild tremor in my hands, and after two years on the medication I had to see an ophthalmologist to ensure there was no crystallization behind the eyes or near the retina as a side effect of prednisone. Azathiaprine can also cause vision problems but in both cases the side effects can be easily removed by an opthalmologist. I would see one as soon as possible for comfort sake. Why suffer if we don't have to?

[Hidden in reply to Rachelle_Labelle]

Thanks for your reply rachelle. Hope you are well. These symptoms are a nightmare. So much can happen at the same time. I’m reducing my pred gruadully and have 3 infusions of cyclophosphamide left to have. Currently my worst symptoms are my fatigue, eyes and tremors / shaking.

[Hidden in reply to Rachelle_Labelle]

Bless you. Sounds like you have been through it all. This illness is a nightmare. Especially in the early stages of diagnosis. Good luck

[monica45]

I see the eye Dr every 6 months automatically and he will see me at other times as well I had. Glaumoca surgery and was encouraged to buy the expensive lenses which apparently worth while I thought prednisone was wonderful no pain. And disappointed when I had to come off it after a short time as there was no way the Dr would leave me on it and I went to Methotrexate but now on injections I give myself once a week.I may shock some when I say I buy my own cannabis oil which is legal here in Canada now and 50% of the seniors buy it for pain and it helps the pain in my teeth and knees!, as I have no other pain killers.My Drs are so good I got sent for a mammogram last Monday and was called to go again on Thursday I have four spots not called cysts ! on my right breast and can’t feel a thing.Been there two years since the last one and caused by stress!Lots of that recently. Just keeping and eye on it. No action.I take anti histamine for the itchy skin which helps

[ZiggyDiego]

Eye problems were one of my first symptoms of my GPA. My GP sent me straight to eye clinic. Since then I've been going regularly, from weekly to every six months. I have found my optician is a very useful person to see regularly too. From the disease I have nerve damage which causes constant pain, scleritis and at one time, uveitis. From prednisolone I have cataracts and glaucoma. And I have dry eye too, guess that's part of the deal. The only person who can tell me for sure what's happening at any one time is the ophthalmologist in the eye clinic. If you're at all worried ask your GP or consultant to refer you for an urgent appointment.

[Hidden in reply to ZiggyDiego]

You’ve suffered havnt you. My god. Is there any extremity this disease won’t go to ? My eyes keep weeping and it’s sore to wipe them with my hand. Violent tremors and shaking. Don’t know if that’s pred or cyclo ?

Good luck mate. 👍🏼