High inflammatory markers

[Bramble2000]

Hi, I just received a letter regarding my appointment with my Rheumatologist last week. He says my inflammatory markers cannot to attributed to PMR alone. CRP 37 and ESR 97 which have both gone up by snout 20 points since they were last done. Is he right? He still says I’m too young for PMR but does refer to the PET/CT scan that showed it. X

[DorsetLady PMRGCAuk volunteer]

He’s correct in that both ESR and CRP can be raised by many things.. there are not specific to PMR and/or GCA - just show there is raised inflammation in your body, but not the cause.

Having read others markers on here, they could well be down to your PMR - so he’s wrong on that count… but from a personal viewpoint see this -

healthunlocked.com/pmrgcauk...

But main point is, what is doing about checking what they are? Anything, or just sticking to same old, same old…

[Bramble2000 in reply to DorsetLady]

He’s wants me to start 5mg Pred and go to 7.5mg of necessary then check blood in a month. He’s also doing bloods and urine for cancer. He’s taken my Ankylosing Spondylitis injections away because he said they aren’t working. I feel they are.

[DorsetLady PMRGCAuk volunteer in reply to Bramble2000]

Thought you couldn’t tolerate Pred….so are you going to give it a try and see how things go?

Not sure he can say your AS injections aren’t working if you feel they are - is that from blood tests again?

Hope Pred helps.. 🌸

[Bramble2000 in reply to DorsetLady]

He say’s the inflammation in the SI

joints isn’t there on MRI taken two years ago so can’t justify it anymore. I feel this is unfair. I suppose I’ll try the 5mg and see how I do. I don’t want to cause myself any other problems because I can’t deal with anymore. I’m under a great deal of strain at the moment as my children’s father - my ex husband is heading back TI prison imminently and I’ve just had enough. X

[DorsetLady PMRGCAuk volunteer in reply to Bramble2000]

Yes you do have enough on your plate…🌸

[Rugger in reply to Bramble2000]

🌻

[PMRpro Ambassador]

If the PMR isn't been treated with the appropriate medication - pred or an IL-6 inhibitor like tocilizumab - then the inflammation can build up over time to a level that can cause pretty high ESR and CRP. Stress can also contribute to raised levels.

[Bramble2000 in reply to PMRpro]

My stress is ongoing, been the same level for years now. Dr doesn’t accept this is mostly PMR related even though he knows it’s untreated. I desperately want to see someone else but I just can’t afford to go private.

[PMRpro Ambassador in reply to Bramble2000]

You can get another opinion on the NHS if you can convince your GP that the patient-consultant relationship has broken down. Which personally I would say it has ...

[Bramble2000 in reply to PMRpro]

Ok, I shall think on that, thanks

[Sophiestree]

if your PET CT showed it did how can he say you don't have PMR? What a strange thing to say.

Do you get on with your doctor? I think as PMRPro says, you need a new referral. I did mine through my GP but it did take a while.

[Bramble2000 in reply to Sophiestree]

Yes, it’s crystal clear on the scan, high inflammation markers and when I did the Pred at 15mg my symptoms of PMR went within 6 hours. I’d say it’s definitive but he’s obsessed with my age.

[Sophiestree in reply to Bramble2000]

No words, just bonkers

[Bramble2000 in reply to Sophiestree]

Tell me about it

[sidra1968 in reply to Bramble2000]

Holy moly, that sure points to PMR. Can you say like I did and Pro said to someone - "whatever it is, I obviously have a very Pred responsive myalgia". Not to mention, isn't an ESR over 30 considered kind of high? Yours is 97? I mean as long as the pred worked so well, who cares what they call it, as long (and I assume) all other things have been ruled out?

My GP also said I was a bit "young" at 54, BUT he at least conceded it does happen. I mentioned this site even and how there were people in their early 50s. You really have to get adamant with some of these docs, I sure have had to.

[Bramble2000 in reply to sidra1968]

The problem for me is I get extreme side effects on Pred so haven’t taken it for two years.

[sidra1968 in reply to Bramble2000]

Oh yes, wow that is quite a pickle to be in.

[Pixix]

5mg was the level that I stopped getting the appalling side effects I suffered for 2. - 3 years. I would say it must be worth trying pred now, surely. And tell him you think the injections are working, & you’d like to continue…perhaps send that old fashioned thing…a letter, if you can’t get an email address.

[Croft9232]

Hi ,

So sorry to hear of your stress ongoing, not helped by your Rheumie. Have you shown him or quoted to him the guidelines on Age relating to onset of PMR? There are plenty of people on here who are your age.

[Bramble2000 in reply to Croft9232]

No, I can’t challenge him. I feel intimidated. It’s much more my fault than his probably because I’ve lost faith and confidence. I’ll talk to my GP I think and see if we can come up with something. Thank you. X

[AtopicGuy]

Nobody knows what triggers the immune system to go wrong and cause PMR. A viral or bacterial infection is the prime suspect. Either way, raised CRP and ESR are a key pointers for PMR, if accompanied by the familiar pattern of bilateral pain and stiffness.

[Bramble2000 in reply to AtopicGuy]

I know, I’ve had PMR for three years now

[AtopicGuy in reply to Bramble2000]

My point is, that might be what your doctor meant by saying your "inflammatory markers cannot to attributed to PMR alone". Your body might be quietly fighting an infection at the moment.

[BridgetBaker]

I know someone with RA whose CRP markers went from 67 to 9 between April and July just from taking a natural supplement that activates antioxidant production. Happy to share details if you’d like more info

[PMR_sufferer1]

Yes ok your a little younger than most for PMR but who knows what the true minimum age actually is. As a female that increases your likelihood it's PMR so I suggest a second opinion. If your in the ZUK the doctor cannot stop that if you ask for it. It's your right under the NHS charter. They will.not be happy but your the one with the pain and anxiety so push as hard as you need to. Good luck !