CRP of 82!

[Griggser]

Picked up some sort of virus after two weeks in Lanzarote and have had an horrendous week, still recovering. Saw the doc on Monday and had bloods taken. He rang to say CRP of 82 and wasn't sure what was the best thing to do. ESR results weren't back so we agreed he would ring me on Friday to see how I was and discuss the full results. I am getting better, as the joint pain is now finally relaxing, and even managed to go to lunch with friends yesterday. It was a bit of a struggle and I had to go to bed for a couple of hours when we got back. Totally fed up with this now and just want some energy back. Still on the weird regime of pred @ 16mg one day and 10mg the next alternating daily along with 400mg of hydroxyculroquine.

[SheffieldJane]

Sorry to hear of your woes Griggser. Glad you were able to see friends. Personally I would not be well on your reduction regime. I would be inclined to stick at 16 mgs til well then reduce by 1 mg each month until I reached 10 mgs, alternating the higher dose eg. 16mgs with 15mgs fo 1 month and then stick with 15 mgs for 1 month, then 14mgs and 15mgs and so on. I reached 10 fairly painlessly like that. Now teetering at 10 considering the dead slow method when the holiday season is over. Happy Christmas and a great 2017.

[PMRpro Ambassador]

If you had a chest infection that will send a CRP rocketing - why a chest infection is so bad I have no idea!

The usual expert advice is not to increase pred in response to a single raised ESR/CRP or if there are no symptoms but repeat the test to see if there is a trend. If you had a chest infection - they probably wouldn't even have bothered with the ESR/CRP as they are meaningless in the presence of another reason for them being raised.

[Doralouise77 in reply to PMRpro]

My CRP went to 200 with an infection I had a few months ago....as it was going up my rheumy believed it wasn't GCA related and blood work confirmed it...he is a big believer in treating symptoms...for the infection when on Pred we must monitor our symptoms with vigilance especially for sweats/chills.....best of luck

Cheers ...

[DorsetLady PMRGCAuk volunteer]

Agree with Sheffield Jane, both in strange Pred routine at moment (not sure that would be good for anyone) and in the way forward. Stay at 16mg until the holidays are over, and then try reducing a more sensible way.

[Griggser]

Not a chest infection but some sort of viral infection, hot cold sweats, headaches, fatigue, generally feeling crap and all the PMR pains to go with it. I do feel that high CRP is due to this and will suggest repeat bloods on Friday. Staying on the weird regime of pred until I see rheumy on 12th Jan. At least I can tell him how bad it's been! Feeling a bit better every day now so hopefully be ok over the festive period😄. It's the wife I feel for!

[PMRpro Ambassador in reply to Griggser]

Is the bizarre reduction as instructed by your rheumy? Did he give you a good reason for it? Or for using hydroxychloroquine? Being as there is NO evidence at all that it is the slightest use in PMR...

[Griggser]

PPRpro, yes bizarre regime was requested by rheumy. Let's not forget I have been trying to reduce for nearly 3 years with various steroid sparing drugs, none of which worked! I think the high dose one day with low dose the next was to establish if I was getting any benefit from steroids??? The logic being if one day I felt better than the other. Not sure if that's the case but I seem to recall something like that being said. The hydroychloroquine was the latest steroid sparing drug he wanted me to try. I think I can safely safe it has not made a jot of difference. I feel that I probably need to go up to around 20mg a day, reading other posts and taking into account I'm 6' 3"!and 17 stone!! Anyway the 12th of Jan is not to far away and I'll have a good discussion with him as regards to what options I have. I'm certainly not getting the relief I need from the steroid dose I'm on now! What really bugs me is initially 15mg a Day completely took away all my symptoms but even that dose now does not!

[PMRpro Ambassador in reply to Griggser]

I think that sounds about right - though I'm sure that your rheumy will then try to tell you that size and dose are not related in PMR. Except he is wrong: an Italian study showed that a starting dose of 12.5mg induced remission of symptoms in up to a month in 75% of patients studied. The best results were found in small women and the longest time/not a good result was found for large men. Duh...

I've said all along and seen it a lot - once you get into a yoyo pattern with the pred dose you start a downward spiral. If you make a patient reduce quickly and induce a flare so they have to increase the dose again the next time round it is more difficult to get the symptoms under control. Every time you make the same mistake you make it worse. Doing the same thing and expecting a different result is one definition of madness.

I was speaking to the rheumy in Leeds who is using the Dead Slow approach in a study the other day and asked about the results thus far. The feedback has been very positive and the patients (mainly women it has to be said) are saying it is the best reduction scheme they have tried. What I have seen on the forums is that the people who use it from the start seem to reduce steadily with very few problems until they get to a sticking point - the lowest dose that manages the symptoms. Others who have failed a few times have got to lower doses than ever before.

But what I don't get is this desperation to tell patients that after 2 years there is something wrong when they haven't been able to get off pred. The German rheumatology textbook says an average of 5 years - which, since many do get off pred sooner, means there are a lot who take longer than that. I've had PMR far longer - I'm truly blessed with my doctors here who agree with the mantra "you need what you need". There is no point telling you that pred will shorten your life (or whatever other bilge they want to say) if that longer life is going to be nothing but pain.

But I'll tell you one thing - my favoured option would be a sensible rheumy! I wouldn't be giving yours another chance!

[piglette]

You poor thing. My CRP and ESR shot up after I had a respiratory problem a while back and then it slowly reduced again. In fact I did not have any extra PMR problems in spite of the high inflammation markers. My GP wanted me to increase but I ignored her. As the others suggest I would stay on 16mg and slowly reduce, if you are having PMR problems alternating with 10mg. It sounds as if your doctor is just experimenting with you.

[11caroline29]

Hi Griggser. Sorry to hear you still struggling with steroid reduction. Viral infections are tough alongside PMR and Fibro. I have had 5 this year - dry cough sore chest extremely sore throat high temperature and more aches and pains than normal. However I do think your steroid routine will not be helping either. My new GP would like to see me too re my high ESR. Still struggling from 10 to 9mg over the last 5 weeks. I don't feel I have had much success reducing over the last year either but I guess it isn't a race and the side effects are certainly much less than I was at 15 to 40mg. Patience! Hope you start to feel a wee bit better and have a less painful Christmas.

[PMRpro Ambassador in reply to 11caroline29]

Um - maybe 10mg is where you need to be for now...

It is winter and xmas - equals stress. LVV and stress don't mix!

[Nap1]

Why are you alternating between 10 and 16 very big difference

[Griggser]

Hi Nap1, I have been struggling for nearly 3 years to reduce the steroids from original starting dose of 15mg a day. Have had 5 different steroid sparing drugs to take alongside to help with the reduction but none worked or made me ill. Every time I get to about 12mg I flare badly. I think the rheumy wanted to see if I had better days than others so hence the alternating doses. I have been up to a lot higher doses to get it back under control. Due to see him again on the 12th January so we will see what he say to do next as not good at the mo and the hydroxyculroquine I'm currently on does not seem to be helping. Hope that answers your question.