GPA

[Longwilloe]

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

[Hidden]

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?

[Hidden in reply to Hidden]

The helpline details

vasculitis.org.uk/helpline

[Longwilloe in reply to Hidden]

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.

[Hidden in reply to Longwilloe]

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 in reply to Hidden]

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

[Hidden in reply to Longwilloe]

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 in reply to Hidden]

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.

[Hidden in reply to Longwilloe]

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 in reply to Hidden]

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

[Hidden in reply to Longwilloe]

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 in reply to Hidden]

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 in reply to Hidden]

Kettering general hospital

[Hidden in reply to Longwilloe]

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?

[Hidden in reply to Hidden]

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

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

[Longwilloe in reply to Hidden]

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]

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 in reply to Omil04]

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 in reply to Omil04]

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

[Hidden in reply to Longwilloe]

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

[Longwilloe in reply to Hidden]

Thanks so much for your help I've messaged you

[Longwilloe in reply to Hidden]

Pm you a bit longwinded.

Thanks

Di

[Omil04 in reply to Longwilloe]

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]

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 !!