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.
Written by
LemonZest11
To view profiles and participate in discussions please or .
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
I bet there were. Relax and unwind now, if you can.
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.
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
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.
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.
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.
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.
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.
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.
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 :))
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.
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?
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.
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?
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.
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.
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.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
many of them, hope you are feeling better
Asking for ESR & CRP numbers
GCA symptoms normal CRP
CRP 2, still in pain. 
Different CRP readings
CRP/ESR and calcium levels
