ESR levels

It's subjective, Crystal Cave. Everyone has their own inflammation 'norm' i.e. what would be normal for you may well be in the high range for Jane Doe. Then there are those like me who never has/had elevated inflammation markers anyway.

In the same case as yourself, I would be off to the doctors like a shot, but only after I had raised the steroid dose until I was comfortable. That sounds like a large drop to me, but not knowing what dose you are on at the moment makes it difficult to judge. The inflammation markers also seem too high, but again it's difficult to judge without a little more information.

If you are on too low a dose of steroids it all becomes a bit meaningless - little point in taking them unless you are going to take enough of a dose to give you relief. Too low and you are getting all the downsides without any of the upsides! and it sounds to me as if you are having a major flare up caused by a too low dose.

Let us have some more information, we'll help all we can.

Hi, thanks for the reply. I was on 15mg per day until a week and a half ago, under my rheum advise dropped to 12.5 per day. I will be off to the gp's on Monday as I haven't felt well at all since the reduction. Having said that I put it back up to 15mg last Thursday, couldn't stand it any longer. I haven't noticed any difference in the way I feel so far, I'm hoping each day will get better, you know how it is.

The general and latest advice is that you drop only 10% of the dose at any one time and 10% of 15 is 1.5? (maths was never my forte). I believe that it will take several days more before you feel any better at 15mg but it should happen. The quicker way to do it would be to go up to 17.5 mg, so if you are not feeling any better when you see your doctor, suggest it.

For more credible and genuine info look at the websites on the 'Pinned' sticky above. It will take you to a lot of information including the National Guidelines and another forum which is more relaxed but has a load of info to be read.

Apologies - I seem to have had hiccups when posting previously. It's so cold here that it's more probably my fingers shivering!

Catie

Thanks Catie, that is really helpful. I will go to those web sites.

Sue

Hi Sue

Catie has given you lots of good information, but just to add to that I was wondering how long you were on 15mgs before reducing and were your blood tests repeated before that reduction?

A CRP of 75 is very high (normal is 0-5) and at that level you would have been better not to have reduced at all. In fact, some people find that they need a starting dose of 20mgs to get the inflammation under control.

Be particularly alert to any problems with your vision, head pain or jaw pain on chewing. There is a linked condition called Giant Cell (or Temporal) Arteritis which can put our sight at risk.

With that raised level of CRP and the symptoms you describe, if it was me, I would be hot-footing it back to the rheumatologist.

Do keep in touch and let us know how you get on.

Hello Mrs. O, I have been on 15mg for about three months, but my rheumatologist lowered me to 10mg two months ago, I soon had to up it again as the symptoms were really bad again, so this time he reduced it by 2.5. Still too much in my opinion, so I've gone back to 15mg. I also have diabetes so have to watch that with the steroids. This last week I have felt so poorly but just put it down to dropping down. I have had pains in the jaw area which I mentioned to the rheumatologist he checked me for tenderness around the head etc and told me to look out for the symptoms of GCA and go straight to my GP.

Thank you for your advice and I will keep in touch. I'm off to see my GP tomorrow, so I'll let you know

Sue

Hi again Sue

That was a good length of time to be on 15mg so it's a shame that you were then advised to do such a large reduction when somewhere inbetween would probably have been the dose that would have kept control of the inflammation.

It can often get a bit problematical when we start yo-yoing the dose as you have now had to do, but now that you've gone back to 15mg, hopefully a smaller reduction next time (following prior blood test results and with an improvement in your symptoms) you will be more successful.

We have had people posting in the past who have been in a similar situation to you and second time around just tried reducing by 1mg at a time with success. That way it is easier to see at which point the inflammation isn't being controlled, so easier to attack with just a slight increase back to the previous dose at which you felt comfortable.

It is quite usual to experience what seems like an increase in PMR pain for a few days following each reduction, but it can simply be steroid withdrawal pain which should clear in a few days to a week. If it lasts longer then it points to increasing PMR inflammation.

It is always a good idea when planning a reduction not to go racing around for a week or so but to give yourself plenty of TLC whilst the body is adapting to the reduced dose.

Good luck at your appointment tomorrow and I do hope you will quickly feel better back at 15mg.

crp very high ,good news that you are going to see gp ,the drs ask you if you feel unwell because the inflamatory markers also go up if you have an infection eg chest /urinary .be very aware of gca as mentioned i other post but also reduce at smaller doses i can only go down 1/2mg a month otherewise i hit a wall but we are all different , suggest until crp settles you have blood tests regularly let us know how you get on carolk

Thank you all for the messages above. I went to gp's, turns out I have a chest infection. Ironically today is the first day in the last week that I have felt a little better. I'm staying on my 15mg's now until I see my rheumatologist in 13th. Having some bloods done tomorrow so see how my levels are. Thanks again for the support it is invaluable when you are having a bit of a crisis.

Sue

Hi Sue

Well mixed news - "feeling better but diagnosed with a chest infection", so no wonder you had been feeling poorly just recently. Don't be too disappointed if the blood tests tomorrow turn out to be a little raised still as that could just be due to the infection. Get well soon.

well at least you know why crp was so high hope your chest infection clears up quickly ,good idea to stay on 15mg for a while this will also help your chest carolk

Glad you now know what the problem is - any additional infection can make your inflammation markers go berserk!

Do keep in touch and let us know how you get on.

Catie

Missed this!

The answer to your original question is that an ESR shouldn't be above about 35 -40, 40 is the point at which they should be looking for something not right. It can range from 1 up to 35 and what is normal is, as the others said, variable. Nefret and I have only ever had readings of about 5 or lower, even when the PMR is really bad and so, if that was your normal sort of range 46 would be very high. On the other hand, if it were normally about 25, it would be particularly alarming. My CRP has always also been low - no help for my PMR monitoring.

As the others have suggested, you might be able to get away with much smaller reductions so that would be worth trying. However, on what grounds has your GP suggested a chest infection? That is certainly enough to raise the markers and bring on a flare of your PMR so if you improve on antibiotics fair enough. If antibiotics don't bring about an improvement though it might be worth the GP/rheumy considering other causes, including GCA showing up atypically. It can cause chest and upper respiratory tract symptoms and only a relatively small number of patients with GCA go to their doctors with the so-called "standard" symptoms of jaw pain or even headache, something like 10 to 15%!

Hope you feel loads better very soon!

Eileen

Hello

I was looking for info about esr and crp and came across this one

I got sick with the flu over 2 weeks ago. I thought I was getting better and I had fever like symtoms and feeling tired and headache. I went to my Dr and he sent yesterday a blood test.

He call me today to tell me my esr was.89 and my crp 127

He was prescribing 2 kind of antibiotics

Cypro one and the other start with m and very hard and nasty

I took those 2 last night and I haven't slept at all with pain on my stomach etc

I am worry about this elevated things because I also have a lot of pain on my back and inside my pelvic area

Please help me to understand this