Elevated CRP

[LemonZest11]

Hi Everyone,

I had a huge disappointment yesterday when I went to see my GP for blood test results. I was shocked to learn that my CRP has continued to rise and is now sitting at 97, which is 11 more than when I was first diagnosed in agony just over 12 months ago. My ESR, which had been normal all year after initial elevation at diagnosis, is has also risen. I am feeling some discomfort but only stiffness which passes as the day progresses. I am on my second taper, down to 6.5mg pred. GP wants me to see another rhuemy since I had no time for the first. She feels I need more professional advice and so I have agreed to do that. I am feeling very emotional and a bit fragile, but I know you all understand those feelings. Thanks for listening.

[SheffieldJane]

Other infections, even a cold can send your inflammation rates soaring. Are you feeling ok?

We do understand how you are feeling. I hope you get one of the wonderful Rheumatologists. Let us know what happens.

[LemonZest11 in reply to SheffieldJane]

Thank you Jane, you are always so encouraging. I haven’t really had any illness but I’ve just been on a family beach holiday with 9 grandchildren so there were elements of stress involved, but 97?? Oh well, keep going. xx

[SheffieldJane in reply to LemonZest11]

I bet there were. Relax and unwind now, if you can.

[Hidden]

If you are having some morning stiffness it is indicative of pmr activity. As sj says other things can raise the inflammatory markers, but if you have had no stressors like llness then perhaps you have gone too low in terms of pred. A different rheumy might be better. However as you are only just over a year in I would expect flares if you drop too low. I am on 7mg after 4 years. It doesn't mean you will follow that path, but if you have symptoms that improve as pred works across the day tben perhaps try a short extra 5mg with the Dr's blessing. You can do it for a week and still drop to last dose you felt OK at.

[LemonZest11 in reply to Hidden]

Thank you Scoopitup, sound advice. As I have only been on the 6.5 for less than a week, I thought I’d stay here for a bit longer to see what happens. If I’m still uncomfortable then I’ll have to up the pred again. Just had a call re my bone density, that has deteriorated too. Bloody hell ... all bad news this time round. Anyway, PMR is not fatal and it could be a whole lot worse! I need to give myself a bit of a slap and get on with it! Thanks for replying. Xx

[Hidden in reply to LemonZest11]

It's always something isn't it. It just keeps on giving. You should look at HeronNS's profile and look at her advice re lifestyle changes that can. Be made to protect bones. It would be intresting to know what your t scores are. They often make out that things are much worse than tbey are. Here's some info so you can assess where you are.

bones.nih.gov/health-info/b...

[LemonZest11 in reply to Hidden]

Oh thank you for that information. I will look at HeronNS’s profile and also the article. I think she said my t score was 2.2? Does that make sense? I was in a bit of a denial listening mode ... will look at your recommendations now. Thank you again.

[Hidden in reply to LemonZest11]

Was it minus 2.2 or just 2.2? Either way it's not osteoporosis if that is one of your t scores. But it suggests you need to adopt some of the strategies HeronNS has to change her scores.

They might try and suggest you have osteopenia but really that is meaningless. I think vitd3, calcium and Vitk2 will help you. The first 2 are what Dr's prescribe here in the UK. The Vitk2 helps direct the calcium to the bones so all 3 help.

[LemonZest11 in reply to Hidden]

Yes, it was -2.2, getting close to the dreaded osteoporosis score. My doc told me that my calcium and Vit D levels are OK. I need to get the K2 as part of all that. She wants me to increase resistant exercise but Physio son says to take that easy ... very light weights (1.5kg) with reps that feel comfortable. I have read what you sent me, very informative, and I will sook at HeronNS’s strategies. Sorry to take up so much of your time, but thank you.

[Hidden in reply to LemonZest11]

Time not an issue to an insomniac!

The score is indicative of mvtment towards OP but I believe it can be held back. The problem is pred leeches calcium out of the bones. I did have low vitd3 at dx but I think most people with pmrgca take vitd3 and calcium as our needs are greater than healthy people's.

I agree with your son, light weights are best. Particularly at this stage. But just increasing walking can make a difference.

[LemonZest11 in reply to Hidden]

Oh you poor thing ... do you read? I can recommend a new Australian author, Chris Hammer. He has written a couple of really great novels, Scrublands and Silver. I’m just reading Silver now ... it’s kind of a sequel. I’m going to get that K2 to go with my calcium and d3, thank you for that and all the other advice.

[Hidden in reply to LemonZest11]

I will look them up. Thanks.

[alysonkerry-]

Sorry to hear about your rise inflammatory markers I’m sure like the other comments say it could be down to another simple factor and that it’s quite normal to have flares especially in first year or so of diagnosis. Hopefully you get referred to a good rheum who is understanding and will listen to your personal journey it makes all the difference and each persons case is different and individual to them. Hope agree maybe you will have to increase your steroid dose age just for a tad and ten reduce again of course under their guidance. Unfortunately I have know answers but hope I have given u some reassurance hope you get sorted very soon :))

[LemonZest11]

Thank you Alisonkerry, yes, it's such a mystery and the thought of increasing the pred again is disappointing but it may have to be done. Thanks for your reassuring words of kindness.

[PMRpro Ambassador]

There are a lot of things that can raise the CRP and even more that will send up an ESR level. Did you have a good going over to rule out the other things that can cause PMR symptoms?

[LemonZest11 in reply to PMRpro]

My doc, who is lovely and supportive, just looked so concerned and asked me how I am feeling. She's unsure what to do now so wants the advice of a rhuematologist. She didn't up the pred though, but maybe I will need to. I want to give it a couple more days at this level aand then bight the bullet if I have to.

[LemonZest11 in reply to PMRpro]

Problem is that my bone density has worsened and doc wants me to do weight resistant exercise. I have laid off that a bit but went back to it this morning. I am feeling stiff this evening, not sure if it is from that or the PMR. I’m going to take a Celebrex (I know, not meant to do that but I will eat first) to see if it helps. That should tell me if it’s the PMR shouldn’t it?

[PMRpro Ambassador in reply to LemonZest11]

There are - albeit disputed - medical ways of improving bone density if it is that bad. It is all very well rushing the dose of pred down - but you need what you need or you will be back to where you were with rampant inflammation coursing through your body - and that does damage too. It is all about achieving a balance.

[S4ndy]

I wonder if your results are being raised by something else. Mine are currently being elevated by tooth problems as I am waiting to have 2 removed under general anaesthetic.

When I had chest infection last year, same thing, raised inflammatory markers.

I didn't have any increased PMR symptoms at the time either.

So could be something else.

[LemonZest11 in reply to S4ndy]

Thank you S4ndy, I hope you are right.

[PMRpro Ambassador in reply to S4ndy]

Chest infections will send CRP into triple figures!

[S4ndy in reply to PMRpro]

Indeed! xxx

[Hidden]

Set backs are so difficult to deal with. My best.🤗

[LemonZest11 in reply to Hidden]

Thank you Ipadmom, means a lot.

[Noosat]

After 13 months, I am down to 4.5mg Some of the things that have affected me negatively are a cold and very bad allergy from ashe juniper pollen. I try not to think automatically that bad symptoms are always due to PMR. My long time GP, who I trust implicitly, leaves most decisions to me, as I know best how I feel and we are all different. I do weight bearing exercises using 3lb weights, also do yoga like stretching moves. These seem to help.

[LemonZest11 in reply to Noosat]

Well done Noosat, gives me hope when I otherwise feel down at the moment.

[Noosat in reply to LemonZest11]

many of them, hope you are feeling better