Visit to the Rhuemy

[Sunnyd7]

After 10 months on 7.5 mg of prednisone, the rheumy wants me to decrease down to 6 mg and take that for 3 months. I see him again in March 2018. He feels I am doing good enough to handle the reduction. He did take blood to measure my inflammation markers, I will post those when I get the results.

I told him about this wonderful forum and how all of you have been such a great support and so very helpful! I explained that the starting doses for pred on this forum were so much higher than even the 15 mg he wanted me to start with. I asked him why, he said everyone is different and each doctors approach to PMR could be different.

Today is my first day of 6 mg, (down from 7.5 mg) I admit to being a bit apprehensive dropping 1.5 mg right away. I will see how I feel tomorrow, if I get any pain back I will be going back up to at least 7 mg and then reducing by .5 mg until I get to 6mg. Does that sound sensible?

I really appreciate and enjoy reading this forum. The support and all the funny stories and positive outlooks are

great. Thank you so much!

[DorsetLady PMRGCAuk volunteer]

Hi sunnyd7,

1.5mg is a slightly larger taper than is usually recommended once you are in single figures, but you might find it okay. Your Rheumy obviously has his own way of tapering.

The only thing I would say is you may well get steroid withdrawal symptoms for a few days, so don’t mistake them for actual PMR pain and increase unnecessarily. Withdrawal symptoms come on virtually straight away whereas a glare may take a week or even two to materialise.

Did you discuss getting to 6mg using smaller steps than he suggested?

You just have to see how it goes.

Good luck

[Slowdown in reply to DorsetLady]

I can muster a glare almost instantly and far too frequently ;-

(See above: DL's Oz-heat induced apposite typo!)

[Hidden in reply to Slowdown]

Still wearing shades myself with the balaclava. Even worse when I go out!!

[DorsetLady PMRGCAuk volunteer in reply to Slowdown]

😧🤔

[DorsetLady PMRGCAuk volunteer in reply to DorsetLady]

Oops. Meant flare! But I can also muster a good glare - even now my kids react!

[Sunnyd7 in reply to DorsetLady]

Well it's day 2 on the 6 mg. No pain but the fatigue hit like a freight train today. Have had some lightheadedness today and the fatigue but that is all. Suppose I will see what happens on day 3 & 4. I can always increase correct?

Thank you for your input I appreciate it.

[PMRpro Ambassador]

Personally I'd preferred to have seen him advising much smaller steps - it isn't a race even now - so yes, your alternative plan is a good one.

Your blood markers are normal at present because you are taking enough pred to be enough to clear out all the inflammation every day - and that is the way you want to stay. I wish I knew why doctors think it is a good idea to make people drop so much at one go. Top experts have said for years that tapering should be in steps of not more than 10% of the current dose. 1.5 is 20% of 7.5mg.

The very high doses you hear about are mostly for GCA patients - but the most recent thinking is actually to start with more than 15mg if 15mg doesn't work straight away. I had relief in less than 6 hours - lots of people don't. The 2015 Recommendations for management of PMR say "the lowest effective dose in the range 12.5-25mg, exceptionally 30mg".15mg is the bottom of the range - if it works, great.

[Sunnyd7 in reply to PMRpro]

Well it's day 2 on the 6 mg. No pain but the fatigue hit like a freight train today. Have had some lightheadedness today and the fatigue but that is all. Suppose I will see what happens on day 3 & 4. I can always increase correct?

Thank you for your input I appreciate it.

[piglette]

As the others say that is a large jump at quite a low dose. You are also just getting to the point where the adrenal glands will be waking up. If your rheumy was happy you staying on 7.5mg for ten months he should be happy for you to take three months to get to 6.0mg and just reduce .5mg a month rather than the whole lot in one go. It is also worth using the super slow system.

[SheffieldJane]

Give it a few days but I think you may have to utilise your very sensible contingency plan. Good luck! This is the difficult home stretch in my opinion. I would not want to risk a flare. Everybody is different and if you have faith in him and he’s there for you, that really helps.

[Sunnyd7 in reply to SheffieldJane]

Well it's day 2 on the 6 mg. No pain but the fatigue hit like a freight train today. Have had some lightheadedness today and the fatigue but that is all. Suppose I will see what happens on day 3 & 4. I can always increase correct? A flare is the last thing I want. I have been very fortunate that the 7.5 mg helped with the pain right away and I don't want a repeat performance of the pain in any way.

Thank you for your input I appreciate it.

[SnazzyD]

Hello,

For what it’s worth, since 35mg I’ve gone for 0.5mg drops more frequently instead of larger less frequent drops. I’ve just got GCA and the withdrawal that kicks in, in a few days feels like aches, pains (not stiffness) and fatigue and then it passes in a few days. With the smaller drops I have felt a bit rubbish but with larger ones, it has stopped me in my tracks. I do no more than 1mg per 2 weeks and take an extra week if I’m under the weather, have a lot on or just don’t feel in balance. With enteric coated pills it gets tricky if the number isn’t made up easily with 5, 2.5 and 1mg as 0.5mg isn’t available. I have tried cutting an ordinary 1mg Pred in half but haven’t decided yet if a bigger drop is better than mixing coated and non coated.

As for different docs, it seems to me to be the wrong way round as in it needs to be a better and common standard that is adjusted to the patient. Instead it seems to be variable approach into which the patient is often forced.

[Sunnyd7 in reply to SnazzyD]

I had terrible fatigue today and some light headedness ( day 2 at 6 mgs). I am hoping as you state that the fatigue will pass in a few days. I am still trying not to do to much physical activity and not to get stressed out. Thank you for your input I appreciate it.

[Sunnyd7]

I do like this Rheumy and I find him quite knowledgeable and he really listens to me. Though as we all know he is not in our body, so he can make suggestions of how to reduce, but only our bodies will tell us if we are moving to fast.