Reducing prednisolone

[Ceathrua498]

I was diagnosed with GCA in April 2015. Was treated with different drugs i.e methotrexatete, cyclophosamide , and now colchine, and still not better

I have been referred to another Dr who thinks I have pericarditis but not GCA

Waiting to see him again in November for blood test results and scans . I'm currently on 15/14 mg of steroids but don't seem to be able to go past this . Symptoms always reappear

Would like to know if anyone else has not been able to get a proper diagnosis

[PMRpro Ambassador]

While methotrexate, cyclophosphamide and colchinine are used for some forms of vasculitis they are never used on their own for GCA - the mainstay treatment to date is high dose corticosteroids and in the last year tocilizumab has been added but it is not yet widely used because of the price.

Some people take a long time to get below about 15mg - if only because some people do not absorb by any means all of the pred they take. The bioavailability (as it is called) varies between 50% and 90% - and if you are a 50% person you will apparently need a higher dose to manage the symptoms. Sometimes doctors make it all worse by insisting on forcing reductions in the dose, sometimes by adding other medications which may, but mostly may not, help the patient to manage on a lower dose. In the more than 8 years I have been involved with the forums I would say the average time to get off pred for both PMR and GCA patients is about 4 to 5 years - far more than the 2 years that is propounded by many doctors.

[bposiv in reply to PMRpro]

thanks pmr pro for the information you put in a reply to someone elses question it was very usefull to know about the reason people have difficulty getting below 15mg i would like to know why gps and rheumatologists dont understand this they seemto try to push us where we cant go thanks again very helpfull info

[PMRpro Ambassador in reply to bposiv]

The amount of pred we absorb is usually quoted as 70% - the average. Just as the average age of diagnosis of PMR is 72 - that doesn't mean there aren't a lot of people above and below that. But a lot of people really do seem to struggle with how an average figure is found!!!!!

[jinasc]

Follow this link: pmr-gca-northeast.org.uk/as...

It will take you to: BSR and BHPR Guidelines for the Diagnosis and Treatment of

giant cell arteritis

This link will take you to PMR: pmr-gca-northeast.org.uk/as...

You can also download them and they are the current ones in use.

[Ceathrua498]

Thank you for your helpful comments