Advice please!

[allykat]

When I was diagnosed with GCA in 2015 my ESR and CRP were 43 and 44. Some of you will know that I tapered to zero a year ago but then experienced the symptoms of PMR and increased to 10 mg of prednisolone. Over time I have slowly reduced and am now on 2 mg. My lovely doctor retired at the end of July and since then I have carried on without medical counsel. My past markers were: June ESR 11, CRP less than 5. August ESR 13, CRP 5. This week ESR 16, CRP 9. There seems to be a bit of a pattern here. I have been on 2 mg for 6 weeks. According to my tapering plan, I normally only stay at the next target level for 4 weeks before starting the next reduction but as I was in Canada, I stayed at 2 mg longer so as not to disrupt things. At the end of this week I am due to start the slow reduction to 1 mg. I would describe my symptoms more as discomfort rather than pain. It is especially annoying across my shoulders and around my torso. Upon waking it is at its worst but eases during the day. I have made an appointment with a "new" doctor but this is not for another 3 weeks. I plan to get my bloods done again before seeing him.

My question is do I start reducing to 1 mg in the meantime and put up with the "discomfort" or stay on 2 mg?

Thanks Kathryn

[DorsetLady PMRGCAuk volunteer]

Hi Kathryn

Definitely do not taper any more.

Your rising blood levels indicate that you have gone below the level you actually need and the inflammation is building up again.

If anything I would be inclined to go up a mg or 2 for a few days and see if the discomfort lessens.

At low levels of Pred you are getting no side effects, but it’s surprising how much difference 1mg or even 0.5mg in some cases makes to controlling symptoms. No point in suffering when you have the remedy in your hands.

Tiny, tiny steps are required now! Don’t spoil it by allowing things to get out of control.

[allykat in reply to DorsetLady]

Hi Sue and many thanks for your advice. I am going to try 3 mg for a few days and see if the discomfort goes away. In my heart of hearts, I had a feeling 2 mg just wasn't working. My shoulders were sore the entire time I was away and not just in the early morning. It's just so discouraging to be "so near and yet so far".

[DorsetLady PMRGCAuk volunteer in reply to allykat]

Hi again,

Yes it is discouraging, but as you’ve come so far the last thing you want to do is spoil things now for the sake of an extra mg or so and a few more months.

I would also taper by only 0.5mg a time as well. I did that from 6mg down, and in fact it took me a couple of attempts to get from from 0.5mg to zero over 4 or 5 months.

You will get there!

[PMRpro Ambassador in reply to allykat]

Remember you were never reducing relentlessly to zero - you have been looking for THE LOWEST DOSE THAT MANAGES THE SYMPTOMS AS WELL AS THE STARTING DOSE DID. That isn't the same thing at all - and you have been very lucky to get to well under 5mg before it wobbled. Five mg is the aim of most good doctors but many of us don;t even manage that. Rejoice it is a low dose and enjoy the relief from symptoms.

[GinnyMa]

Hi Allykat,

Like you I was diagnosed with GCA (but not PMR) in 2015, started at 60mg of prednisone, and had tapered to zero in August of 2017, when I had what I thought must be a flare. Then my rheumatologist put me back to 10mg and gave instructions to reduce by 1 mg per month until I hit 5mg. Then he advised that I reduce by 1/2 mg every two months, till zero. Interesting that he slowed down my taper now, unlike previously when he encouraged faster taper. Maybe he reads this blog where go-slow is advised?

[allykat in reply to GinnyMa]

What level are you at now and is it working so far?

[GinnyMa in reply to allykat]

Right now I am on 2.5mg....feeling good.....it has taken over 14 months to go from 10 to 2.5....it took exactly 2 years to go from original dose of 60mg to zero! But as doctor said , at these very low doses there are very little in the way of side effects.

[allykat in reply to GinnyMa]

If I find 3 mg a better option I think I will go even more slowly and rest at each 1/2 mg level for a good wee while before carrying on with the taper. It's so hard not to be impatient. Before GCA and then PMR, I was not on any medication.

[PMRpro Ambassador]

NO, NO, NO!!!! Even 2mg doesn't seem to be quite enough - maybe try 3mg once a week and see what that does to your markers?

This is such a low dose it really isn't a problem. There will be doctors who will try to tell you it is doing nothing - they are lying! Even 1mgcan be the difference between being fine and not - even 1/2mg can.

[allykat in reply to PMRpro]

I think that is why I miss my doctor so much. My visits with him were a discussion and he was very informed yet always made sure I was comfortable with his suggestions. As I said to Sue, I am going to try 3 mg for a while and see it my discomfort goes away. I remember when I first experienced PMR symptoms and I wondered if I should just tough it out. My doctor said a very firm NO as having had GCA, I was running the risk of it returning. He was a gem!