Diagnosed with GCA

[notnice]

Hi I was diagnosed with GCA last month and am a course of steroids for several months. I must say it is helpful to see other people have this complaint as well and to read how they are coping and what medication they have.

[SusanneM]

Hi. I was diagnosed with GCA at the end of 2014, following 5 years with PMR.

It's a great and friendly forum, so do join in and ask questions, - there are bound to be many on this journey!

[flyingdoc in reply to SusanneM]

It is unfortunately a slow process and steroids may have to be taken for several years, sometimes lowered slightly by substituting in Methotextrate. The problem is that steroids reduce one's natural immune system, and it is vital that this is strengthened by taking something like Beta Glucan in a moderate dosage such as 800 mg daily. It is inexpensive , very effective and displays no adverse side-effects. However, it must be the 1.3, 1.6 version and not Oat Beta Glucan!

[olive2709 in reply to flyingdoc]

Will I find this in Holland &Barrett

[flyingdoc in reply to olive2709]

Probably not yet. Cytoplan UK sell it or you can go on my website, and we will supply it at a very low rate to HealthUnlocked subscribers in a 400 mg capsule.

www,betaglucan-worldwide.org and I can be reached personally on : [e-mail]

[olive2709]

Welcome to the club it's a long journey so glad you have found this forum how much prednesalone are you on. Read as much as you can as most GP s don't have a clue

[notnice in reply to olive2709]

Hi, I started on 40mg of prednesalone for 2 weeks reducing by 5mg until 20mg then by 2.5mg, but for some unknown reason when I got to 25mg it was for only one week so after taking the next dose (20mg) the symptoms came back for over a week and I am now starting on 25mg for 2 weeks.

How long have you had GCA? How much prednesalone are you taking?

[olive2709 in reply to notnice]

Developed GCA September last year so 7/8month's I do not have PMR I started on 40mg down to 20mg New year taking 14mg at moment . I have a copy of Kate Gilbert's book it has become family bible if you look on Amazon they have it .

Some days are good some bad walk 40minutes most days today I good feel I could take on world but know not to push to far yesterday suffered nausea all day .

[notnice in reply to olive2709]

Yes I am up and down like a yo yo it is early days for me I am still getting used to the steroids. I will invest in Kate Gilbert's book it sounds good thank you for that. I hope your journey through this is not too bad.

Sue

[flyingdoc in reply to notnice]

Yes, you are absolutely right. Reduce the dosage too quickly, and the symptoms return very quickly indeed. I often think that the patient is the best judge of how much Pred they should be taking, and not the G.P or Rheumatologist. After all, they are not the one who is suffering and notices the changes.

[flyingdoc in reply to olive2709]

It is unfortunately a long journey and largely applicable to women. You are right - most G.P.'s don't have a clue, nor do they realise how important it is to boost one's immune system when starting on steroids. The latter reduce it considerably.