GCA

[tomh]

I am male, 69y young, and diagnosed with GCA in Aug 2011. Pre-diagnosis I only had a dull non- debilitating head ache, and slightly itchy scalp. After 3 visits to 3 GP's, and one visit to A&E ( after having 2 quick blinding flashes in the right eye), was told to get my eye sight re-checked, and take pain killers. It was only after 10 weeks that I had 2 small swellings adjacent to the right ear that my GP referred to me to Bristol Eye Hospital. I was immediately given 60mg pred/day, and a biopsy 3 days latter confirmed GCA. On high dose, the only affects I had were not requiring more than 4 hours sleep a night, and no aches and pains, ( important for golfers). All positive side affects. I have had 4 relapses, first at 1mg (damn), then 4 mg followed by 7mg and the last 2 months ago on 10mg. My reductions from 20mg/d were 15mg for a month, 10mg for a month, and then reduce by 1mgpd/pm. I have lived in Brazil since April this year, and my condition is treated by a 45 yo vascular specialist, who has only ever seen one case of GCA. I have come to the conclusion that previously, the pred reduction was too rapid. I get my blood markers checked monthly ( esr and crp), although this specialist says the esr is the important marker, since it shows inflammation, and crp shows infection?? I am now on 20mg pred/day, and every month will reduce by 2mg/day 'til I reach 10mg, and then reduce by 10%pd/pm. In effect, when it comes down to 1/2mg doses, I will take for eg., 8 one day, and 9 then next, etc, etc,. A negative side affect is my skin, especially the back of my hands, and forearms, and occasionally the face. Purple blotches, and skin that is easily damaged. I am constantly wearing plasters. lol.

If anyone has any further thoughts on pred reduction, and/or blotches on skin, would appreciate their comments. GL to all sufferers.

Tom

[PMRpro Ambassador]

Hi and welcome - your surgeon may be interested in this paper about diagnosis and management of PMR and GCA: rcpe.ac.uk/sites/default/fi... which was written by the Bristol UK experts to assist GPs who struggle with both.

I worked out a slow way of reducing which I used from 15mg down as I was so sensitive to reductions - it was based on the way a Swedish gentleman used to get below 5mg because getting the 10% is difficult as you go down the doses as you mentioned. It has been used by quite a fe wpeople on this and another forum, with success. There is a similar scheme from another GCA patient which has been widely used in the north of England, including by a consultant for his patients.

You will find my version here:

healthunlocked.com/pmrgcauk...

Are you sure about the way round for the ESR and CRP? ESR is usually felt to be the less reliable, being affected not only by infections but also by how the sample is taken, age and other factors. CRP is predominantly inflammation. Irrespective of that, they are only guides and symptoms and how the patient feels are paramount. Even if they were elevated at first they sometimes fall and remain low even though there is still inflammation present so relying on the blood tests is not 100% a good idea.

Your vascular surgeon may be interested in this:

researchgate.net/publicatio...

Many patients with skin problems find emollient creams help - such as Diprobase or Doublebase in the UK. Using minimal soap products (you can use these emollients to shower as well) also helps skin problems. Mine was never too bad but I never use soap (if it foams, it is bad for skin!) but has improved dramatically as the pred dose has decreased to low single figures.

[maria40]

On your question about skin problems, though I've been taking prednisolone for 14 years , never getting lower than 4mg and currently am on 20mg daily having reduced from 30mg but this is the first time I've had skin problems, particularly purplish blotches and striations on my face. I haven't used soap on my face for years and though fortunately these blemishes can be concealed with make up (in my case at least!) I would love to get rid of them