2nd set of bloods

[Yellowbluebell]

ESR down by 8 points after 3 weeks on Pred. Is this good and a sign that this is pmr or should it have gone down more?

[HeronNS]

How are you feeling? If the pain has gone with a PMR dose (what are you taking?) that's the best sign. My inflammation markers didn't really come down as far as they should (they did decline) for about two years although all that time my symptoms were well controlled.

[piglette]

My ESR has never really come down to a normal level. What was your original reading? As HeronNS asks how are you feeling,? I had a magical effect within 15 hours of starting pred. I was back in the the land of the living.

[Yellowbluebell in reply to piglette]

ESR was 35 and now 27 and my crp was abnormal but can’t remember exactly what but it’s now borderline. The pain from the groin went within 48 hours and some of shoulder pain has gone but wasn’t expecting it all to go as had 7 ops on right shoulder before a complete replacement 2 years ago when consultant damaged a nerve during op and which is still recovering. Some of the tiredness has gone but generally just feel like I have had an argument with a steam roller!!

[piglette in reply to Yellowbluebell]

Your ESR looks pretty good, mine was over 100 when I started, it is around 60 now. I am glad that some things improved.

[Yellowbluebell in reply to piglette]

I have seen some horrendous figures on here and when my results first came back and were relatively low compared I did wonder if i was just been a baby over the pain. At least it’s on it’s way down now

[piglette in reply to Yellowbluebell]

My best was my CRP going up to 415 after a hip op.

[Yellowbluebell in reply to piglette]

My god that’s high!! I do wonder if my shoulder op was the final straw for my body and that’s what brought on pmr.

[piglette in reply to Yellowbluebell]

That is quite possible the PMR was brought on by your shoulder op. Of course we will never know!

[Yellowbluebell in reply to piglette]

My health deteriorated majorly almost as soon as I had the op but I kept blaming feeling ill on the op, and infection I got afterwards, no proper pain relief, no sleep etc etc . Probably was the op but it should be interesting seeing my surgeon next month and see what he has to say about pmr as tbh he has been totally brill but just couldn’t understand why things were taking so long to repair!! He might have his answer now.

[piglette in reply to Yellowbluebell]

My surgeon who did my hip was fantastic too, although his bedside manner was a bit limited.

[DorsetLady PMRGCAuk volunteer]

Hi,

Just shows the Pred is working on the inflammation caused by PMR. On the right road!

[Yellowbluebell in reply to DorsetLady]

That’s good to hear. You kind of just take the diagnosis and go with it but it’s nice to know it is doing what it should be.

[GOOD_GRIEF]

That is, indeed, a good sign. It means the pred is working. Sadly, it doesn't mean PMR is on the run.

Everyone is different. This damned condition can run for years.

It takes discipline in your schedule, in getting sufficient rest, in your diet to keep the weight off, in gentle exercise to maintain range of motion and keep up strength, in combating stress, and in maintaining your general health.

You have to keep the inflammation in check with the pred until PMR stops producing the inflammation. This is not a race to zero pred. It is a delicate dance keeping the inflammation controlled with the lowest possible dose till the PMR burns itself out. No one can tell you how long that will take.

So be happy that the pred is working, and get ready for a pretty long journey. This is a chronic condition, and it needs constant management.

[Yellowbluebell in reply to GOOD_GRIEF]

To be honest I know people moan about the Pred and getting off it as soon as poss but all I see is at this time is it works, it’s getting rid of my pain and if it takes x amount of years then so be it. I will work to minimise the effects of the Pred but I will not be rushing to ditch it.

The biggest prob I will have is my diet because for all of my 55 years I have been

able to eat what I wanted without any weight gain!!

Thanks for your reassuring but still down to Earth reply. It means a lot. Debby

[GOOD_GRIEF in reply to Yellowbluebell]

I know just how you feel. Never worried a bit about what I ate or how much. Many swear that the secret to keep off the pred weight is reducing carbs - some to virtually none. I could never do that. I'd have no energy. And I still work full time and have a physically active commute, so I need energy.

So I skipped all nutrient empty carbs but kept eating potatoes (not fries), whole grain bread and whole grain pasta. If I wanted somethjing sweet, I ate fruit. if I wanted something baked, I baked with fruit.

It worked for me, as I only gained 7 pounds the first year, and lost it without doing anything different but reducing the pred dose in the second year. But that won't work for everyone.

Just being sensible and keeping track of what's going on will tell you what you need to tweak. Or forgo.

Wishing you an easy road...

[PMRpro Ambassador]

There are no rules about how far or how fast the inflammatory markers will fall. But it is falling - so the pred is doing something. Nor by the way is there a direct connection between how bad the pain is and how high the markers are. For one in five patients they aren't raised at all...

[Yellowbluebell in reply to PMRpro]

Thanks for advice. To be honest when I saw some people’s markers mine seemed very insignificant and I thought I was becoming a bit of a baby over the pain. Not something a born and bred Yorkshire woman likes to admit even if she has been down south for 30 years!!

[PMRpro Ambassador in reply to Yellowbluebell]

My ESR hovered at 16-18 for several weeks during which I could barely move and some of the time I was in hospital - so no-one remarked on it! It was mostly in the mid single figures - however bad I was.

[Lonsdalelass]

I think I must be doing really well so far, as my ESR started out at 43 and three weeks later being on pred my last bloods showed it had reduced to 9!!!! I have been feeling a lot better, so this has to be why. I have just started to taper dose from 15 to 13.5 and feeling ok, so I am assuming my ESR and CRP levels will not have gone back up as I am not experiencing pain. If they do go back up will it mean increasing my dose again? And is it normal for levels to fluctuate? I am expecting a bumpy road ahead, after reading all the posts on here, and just very thankful I have had a smooth start.

[Yellowbluebell in reply to Lonsdalelass]

Looks like you might be a bit ahead of me if you are tapering already. When I see my gp next week I don’t expect him to start the taper because there is no way all my symptoms have gone on 15mg. You sound like you have had a great start but don’t forget to take it slowly like they keep saying on the site.

[Lonsdalelass in reply to Yellowbluebell]

Will do. My dr initially suggested going to 12.5mg, (following guidelines) but I wanted to drop by 10% as recommended by all on this forum, so that's what I have done. Like I said, so far so good. Hey, it even throws you into a false sense of security as it makes me think I can be off steroids at this rate in a few weeks, and then I remember what I have got and what I was like four or five weeks ago and realise I am being overly optimistic!!! If only it was that simple......my sisters still think and hope it will all clear up as fast as it came, even though I have explained it all. They haven't read Kate's book!!! And my mother who is 82 also can't understand that I will be on this treatment for at least two years, AT LEAST, she thinks the dr will get me off them in a month or so. Oh dear. Its a good job my OH and daughter know and understand more, as they have seen me at my worst. I hope your symptoms start to improve faster soon. Let me know how and when you get on to your tapering. Good luck!

[PMRpro Ambassador in reply to Lonsdalelass]

When you are on pred they don't always go back up even if you have symptoms. And you can have raised markers for all sorts of reasons so a single raised level without accompanying symptoms should NEVER result in a kneejerk increase in dose. The ESR/CRP should be checked the following week to see if there is an upward trend. If there is the pred could be raised but even then other things should be considered if there are no symptoms. Symptoms are always king.

[Lonsdalelass in reply to PMRpro]

Thank you for that, my levels due to get checked on Thursday next week so I would be in to the start of my second week at 13.5. I will watch my symptoms as you say and only increase if I am struggling in pain. Thanks again, I am so glad I have found this site.