GCA diagnosis

[Nap1]

So July started 40 mg for the month. Then 30 then 20. Sed rate went up and I went back to 40 for 2 weeks and it went down to 11 then reduced to 30 and after 10 days it's up to 25 and the crp is 11 up from 5. How long should I be on 40 mg of prednisone. Diagnosed with Gca. Thanks for any help.

[piglette]

Perhaps reduce more slowly. It is normally suggested you should reduce by ten per cent max at any one time. Are you having symptoms when you reduce or is it just your blood markers that are increasing?

[Nap1 in reply to piglette]

It is just my blood markers. I also had a cold. My fear is the markers will continue to go up and I want to catch it at 25 and the crop at 11 before it gets bad.

[piglette in reply to Nap1]

My blood markers shot up when I had a cold. My GP panicked!

[j-e-a-n]

I saw my Rheumi on the 27th October when I was still on 60 mgs pred. He said to try to reduce to 50 for 3 weeks and the 40 for 3 weeks when I would see him again. I don't know how any of my markers are, only know that I am actually down to 45 mgs after a week and at the end of the week, if I still have no pain developing, I will try for 40 and follow what my body tells me. I am definately feeling less exhausted at the moment and less woolly headed now I am down. I know when I get down to 40 mgs I will have to slow down the reduction, and I will ask for 1 mg tablets from the Rheumy. He seems pretty much able to listen to me and take notice.

[PMRpro Ambassador]

Until the CRP/sed rate are stable and reasonably normal range.

Then try to persuade your doctor to allow you to reduce to 20mg in much smaller steps, preferably 2.5mg at a time but even 5mg would be better, to find more accurately where the pred dose is no longer enough to manage the inflammation, going 10mg at a time means you are missing that. You are risking getting into a yoyo situation with your dose - the most common cause of flares in both GCA and PMR is reducing the dose of pred too far or too fast. In time it often becomes more difficult to reduce again so is something to be avoided. As piglette says, top US experts recommended years ago that reductions should not be more than 10% of the current dose - at 40 that is 4.

A study done in London a year or two ago showed there is still evidence of inflammation in vasculitides including GCA even after 6 months on high dose pred (over 20mg). Generally patients in the UK are started at 60mg - so they are above 30 mg for at least 3 months and even then not all the inflammation is cleared out. If the autoimmune cause of the vasculitis is still active then you will need an adequate dose of pred to manage the inflammation it causes - it isn't curing the autoimmune part. Starting at 40mg is relatively low so probably needs longer than a month before reducing so far and so fast. It's all very well trying to get the patient to a lower pred dose - but if that results in the symptoms returning you defeat the aim.

[DorsetLady PMRGCAuk volunteer]

Hi,

Think, like others, that your drops are too big. The Pred has not got control of the inflammation sufficiently for you to cope.

When I was dropping from 60mg I went in 5mg drops until I reached 25mg, and then only if my bloods and symptoms were OK.

Each time, I stayed on dose for a month, so long as everything was OK.

After 25mg, I then dropped by 2.5mg a time until 12.5 mg and then by 1mg until I got to 6mg. After that I reduced (and still am reducing) by 0.5mg a time.

Once I got to 6mg I started my own slow reduction plan (5 weeks) rather than overnight. Now I have blood tests about every 3 or 4 months, and do my own thing, only seeing GP if I have a problem. His advice is take more notice of your symptoms as the bloods can be affected by other things as well as GCA.

I did have a couple of raised blood figures when I was around the 17.5 mg mark (twice) so went back up to 25mg each time, but didn't have any symptoms. And now, with my better knowledge of things, I think it was my previous GP panicking slightly (mind you she misdiagnosed me for 18 months which left me without the sight in one eye, so I can understand why she upped the Pred both times).

Sorry long answer - stay on each dose about a month, but your symptoms are the key, rather than time, and as time goes by you will know when to reduce and when not to. Just remember, much as we would like to be off Pred - it takes as long as it takes! And because you have GCA, and obviously started on a higher dose it will take longer than somebody with PMR, which can be a bit disheartening when you read of others on this forum who were diagnosed after you, but are now off Pred!

[Nap1 in reply to DorsetLady]

Thank you for your much appreciated lengthy response Dorsett lady. You have been there and can appreciate all this. I had pmr for 3 years only a year ago. I wish I tolerated the pred better. My muscles are shot balance is off and I am in a state of vegetation. I have sugar issues and pressure issues. So I see I must be my own physician and just bear with the side effects and lay low for a while.

[DorsetLady PMRGCAuk volunteer]

Hi again,

Agree some of the side effects are pretty horrendous, but unfortunately Pred is the only thing that controls the inflammation so I'm afraid we're all stuck with it. I did get some side effects at the high doses, and some caused by long term use, but think I probably got off fairly lightly compared to some. I always find it ironic that, the drug that saved my good eye also gave me raised glaucoma levels and cataracts- win some, lose some!

As you manage to reduce you will feel better, promise. The "vegetation" state will lessen, as will the pressures and hopefully the sugar issues. You do need to rest as much as you can, but do try a little gentle exercise if you can, it will stop the muscles getting any weaker, and try and keep positive - not always easy I know.

Life does get better!

[Nap1 in reply to DorsetLady]

Yesterday was a nightmare. Dizzy all day. No equilibrium. Muscles refused to move at all. Also took Actonel my once a month pill. (Second time). This am pain bones and muscles. Didn't want to take the pred. Yesterday was so scary but who am I kidding. I am so tired of watching my sugar and my pressure and now we have new side effect ....eyes, bowels and lots of pain throughout my body. So I am a couch potato. Normally I work out 4 times a week. Sorry for the complaints but I am so tired. Thanks for listening.

[DorsetLady PMRGCAuk volunteer in reply to Nap1]

Hi again,

Sorry to hear you're going through the mill at the moment. I suspect yesterday may have been because of your monthly Actonel tablet, some people don't like it at all. I do wonder if you might have something else going on as well as GCA. If you don't improve within a week then suggest you speak to your doctor. Take care.

[Nap1 in reply to DorsetLady]

Thanks for the responseDorsett lady. Slept for a while. I think it was the Actonel. I have been on pred for 3 years prior with pmr and this is what it does to my muscles. And that was only 15 mg. these are symptoms I know. Medicine and I do not get along. Can't take NSAIDs or any type of anti inflammatory. It gets tough at times especially when I have a headache and I can't take anything for it. It's always nice hearing from you.