Hello again only been diagnosed couple weeks with PSV since found out it is MPA with anca mpo ?

[lynnek2202]

Taking prednisolone now reduced to 25mg and methotrexate! I still get pins n needles in hands and constant spasms of my fingers where they contort and can't move position does anyone else gets these spasms is there anything that helps ? Many thanks

Lynne 👍😘

[Hidden]

Hi Lynne,

Did you not get Cyclophosamide or Rituximab initially to induce remission?

Did you get the spasms before starting the prednisolone?

[lynnek2202 in reply to Hidden]

Hi

Thanks for reply I have had the spasms before taking prednisolone and no have been put on methotrexate and prednisolone only ! Lots of diff painkillers if needed.?

Lynne

[Hidden in reply to lynnek2202]

Lynne, it's very unusual not to be given either Cyclophosamide or Rituximab to induce remission when you have MPA. It sounds like the MPA isn't under control yet. The fear is that your symptoms will get worse as you reduce the prednisolone.

[lynnek2202 in reply to Hidden]

I'm kind of at the mercy of rheumatologist as it was his plan after consulting with an MDT which consisted of consultants in seven other fields? When read on this site I realise there are such verging opinions with medics yet people who have this illness are much more in the know. I went back to my gp the other day since my diagnosis and he said he had no idea what MPA was and brushed it off !! He said he had a patient earlier in the day who has vasculitis so although not common he has treated it! I mentioned I was about to loose my job ( which will mean my home too) as I have been off and will be on nil pay in December and he said at least you have a diagnosis now !!! So now I'm wishing had a different gp .

Kind regards

Lynne

[Hidden in reply to lynnek2202]

You don't need to be at the mercy of anyone apart from an appropriately experienced Consultant.

MPA is an ANCA associated Vasculitis and there are guidelines produced by the British Society of Rheumatology for the management of ANCA associated Vasculitis. They state quite clearly that is to be treated as a potentially organ and life threatening disease and should be treated with drugs like Cyclophosamide or Rituximab to induce remission. They also should be treated by Dr's who have experience in diagnosing and treating Vasculitis.

The most important question to ask your Consultant is how much experience they have in diagnosing and treating Vasculitis. I would also be inclined to ask them if you are being treated in line with the BSR guidelines. Unfortunately we need to be our own best advocates, Vasculitis needs to be beaten back initially with a big stick. Studies have shown that Methotrexate etc doesn't induce remission and patients relapse as the prednisolone is lowered.

I would be inclined to change my GP! You are welcome to e mail or phone the VUK helpline to discuss things, my e mail is [e-mail] and the phone no. is 0300 365 0075

[lynnek2202 in reply to Hidden]

Thankyou so much for your reply it's all so overwhelming.It's been a nightmare and I will call the helpline for a. Chat as is daunting having to challenge the doctors

Keep regards

Lynne

[amms43 in reply to lynnek2202]

Hello Lynn. You are right it is daunting challenging the doctors but in the end it is necessary. So many GPs seem to have no curiosity or wish to learn. I was very ill with MPA until I became so frustrated and angry I searched on my own until I achieved a diagnosis. My good fortune is that I live near Cambridge and Dr David Jayne.

It really is imperative that you stand up for yourself and receive proper treatment. I am a new person since I started Rituximab.

Keyes will help you I am sure. You are right, this is a disease where the patients often know more than the doctors ... even consultants who are not specialised.

Good luck

AMMS

[lynnek2202 in reply to amms43]

Thankyou so much AMMS

! At present I live in Kent but as I two months I will have no job through this illness I dill be selling my 🏡 anc moving to Norfolk so maybe I'll get better luck with GP and consultant

Thanks again

Lynne

[amms43 in reply to lynnek2202]

Lynn, from Norfolk you could probably ask for referral to Dr. Jayne at Addenbrookes in Cambridge. It isn't so very far slightly depending on which end of Norfolk you are. There is a new dual carriageway all the way from Norwich and excellent trains to Cambridge from Norwich or Kings Lynn.

AMMS

[lynnek2202 in reply to amms43]

Yes so hopefully once I move that will be positive also

[tiachibird]

I also have MPA and th same problems with hands and pins and needles. I am now down to 7.5mg preds and the problems seem to have eased off somewhat.

[tisme2]

I too have MPA. It took almost 2 years to get my diagnosis! Even though I was under a rhumyand they were looking for arthritis and taking bloods every month it was in the end picked up by accident by my GP who did a random blood test and noticed that my creatinine level was far too high. I then with his advice paid to see a nephrologist who did a biopsy on my kidneys which are now damaged, and then diagnosed Wegener's P ANCA. I was only prescribed mychophenolate with 20mg pred. After taking these for a year this month I am now off the pred. this last month so just the mycho. now and not feeling too bad at all actually. Just hoping it continues?

The biggest problem with vasculitis is getting the positive diagnosis, (except for the condition of course) With such a serious illness how in gods name is there so little information out there with GPs and Rheumatologists!! Its madness.

All the best to you Lynnek2202 be persistent with everyone you see and treat them like they know nothing.

[lynnek2202 in reply to tisme2]

Thankyou it's good to know I can ask questions here and find support 👍