GPA: I was diagnosed with GPA on Saturday and... - Vasculitis UK

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GPA

Longwilloe profile image
23 Replies

I was diagnosed with GPA on Saturday and today I had my first 1g methylpredisolone x 3 any advice would be most welcome. The rhuematologist thought to treat it with steroids and if needed they can go tougher

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Longwilloe profile image
Longwilloe
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23 Replies

Hi Longwilloe,

Welcome to the group but sorry you have to be here. You don't say what organs are affected but your post concerns me as GPA is never just treated with steroids. All the clinical guidelines state that it is a potentially organ and life threatening rare disease that needs timely, agressive treatment from an experienced clinician. The usual induction regime is either Cyclophosamide ( Chemotherapy ) or Rituximab ( a biologic drug ) in conjunction with steroids.

You are welcome to phone or e mail the VUK helpline to discuss things. Out of interest where are you being treated?

in reply to

The helpline details

vasculitis.org.uk/helpline

Longwilloe profile image
Longwilloe in reply to

Hi back again you have been such a help in the past I was wondering if you could tell me how soon can a second opinion doctor be arranged if all the documentation is available to the consultant.

in reply toLongwilloe

Hi, it depends on your symptoms and the clinical urgency. Most of the Consultants who really understand Vasculitis will see you quite quickly if a second opinion is needed to get treated properly.

Longwilloe profile image
Longwilloe in reply to

Yes, I'm hoping for the 2nd opinion doctor with consistent experience with my condition and to have a look at my notes to explain what is going on. I couldn't find anything to substantiate steroid treatment alone working. To think I was worried about getting back to work how do you protect yourself when I work in a hospital. I'll ponder on that.

Thanks so much

in reply toLongwilloe

I worked in ITU as a nurse whilst on Prednisolone and MMF with severely septic patients and didn't come to any harm.

I don't know what was discussed when you phoned the helpline and what Consultant has been recommended for a second opinion. If your GP is on board and you have organ or life threatening symptoms then certainly your GP can phone their secretary to request an urgent appt.

There is no evidence to back treating GPA with just steroids, all the guidelines ( UK and European ) recommend Cyclophosamide or Rituximab to induce remission in conjunction with prednisolone. Any other treatment strategy is doomed to failure and will put you at significant risk. I hope you manage to get this resolved quickly.

Longwilloe profile image
Longwilloe in reply to

My GP was sending the referral by fax to Addenbrookes but do not know which consultant. The nurse had said that when they receive the referral the consultant will decide if the 2nd opinion warrants speedy action or presumably queued. I was a bit out of my wits today. I went to asda with my son and granddaughter and was walking around very very slowly due to chest pain. My 88 year old father could walk faster. Not sleeping well but have lost 9lbs in 10 days on prednisolone. I don't understand it I am eating smaller healthier balanced meals.

in reply toLongwilloe

If your GP sent the referral to the Vasculitisclinic at Addenbrookes they are usually very good at seeing patients quickly.

Uncontrolled disease and Inflamation can cause ongoing weight loss. Have you mentioned the chest pain to anyone and had a cardiac cause ruled out?

Longwilloe profile image
Longwilloe in reply to

My GP, I told him today that the pain had increased mire over the last few days.

in reply toLongwilloe

Have you had an ECG?

if you are having chest pain you really need to see someone. Vasculitis increases the risk of heart disease as well as Pulmonary embolisms.

Please get it checked properly.

Longwilloe profile image
Longwilloe in reply to

I've had ECHO I had back first part of 21st January and came back normal on the letter from the rheumatologist to my GP. If the difficulty continues today I will take myself into Kettering General Hospital A&E. Just waiting on the outcome of the referral my GP sent to Addenbrookes by fax yesterday, I'll call today and see if they received the fax.

Longwilloe profile image
Longwilloe in reply to

Kettering general hospital

in reply toLongwilloe

as Vasculitis is rare it's doubtful that your Hospital has the experience to treat you properly.

I don't want to be alarmist but I can't stress enough that steroids on their own is not an evidence based treatment for GPA. Have you had a look on the VUK website where there is a wealth of information about Vasculitis in general and GPA?

in reply to

A " lay mans " overview of the European guidelines to treat GPA

vasculitis.org.uk/about-vas...

Longwilloe profile image
Longwilloe in reply to

Yes and thank you for your valuable advice I have contacted Susan Mills with as many details as I can to gain a fuller insight on the condition.

Omil04 profile image
Omil04

Hi longwillow , I also have GPA , was diagnosed last summer. At this moment in time I am under going chemotherapy to get me into remission. It can be scary due to the information on this condition. I got all info that I could, plus sites like this is a sauce of help and information, good luck regards Lorraine.

Longwilloe profile image
Longwilloe in reply toOmil04

Hi Lorraine when I go to the hospital today for my 2nd dose of methylpredisolone I'll ask one of the doctors if they are using chemotherapy to treat the GPA/Wegener's

Thanks for the support

Di

Longwilloe profile image
Longwilloe in reply toOmil04

Hi Lorraine thank you so much for the support with the help of this site and vasculitis. How are you doing just now. I'm working my way through the information provided and yes scary but when managed providing hope of us.

Regards Diane

in reply toLongwilloe

Did you talk to your Consultant today about the treatment plan of just using prednisolone?

Longwilloe profile image
Longwilloe in reply to

Thanks so much for your help I've messaged you

Longwilloe profile image
Longwilloe in reply to

Pm you a bit longwinded.

Thanks

Di

Omil04 profile image
Omil04 in reply toLongwilloe

Hi Diane , ya getting there . Did not have chemo last week , was a mix up regarding ordering the drugs, so have it tomorrow. I have really notice the reduction of my steroids in regards to breathing ect. Cannot complain too much still in the land of the living, and when I get into remission, boy am I going to live it up, ha . Hope that all ok with you ?

Regards Lorraine

Natalia_91 profile image
Natalia_91

Hi longwillow, I was diagnosed with GPA/ Wegener's in 2013. I was treated with chemotherapy and high doses of steroids. the Ritoxan and Methotrexate is what I think put me in remission along with prednisone. Then I weaned off the prednisone... until I became pregnant. but recently had a flare up so I will start chemo again next month and am taking prednisone now. Chemo and prednisone works well to get you to remission. I think. Good luck !!

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