What would you have done?: I had, what I thought... - PMRGCAuk


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What would you have done?

Primarose profile image

I had, what I thought was nasty flu bug a month ago. I also had severe hip pain.

Saw my doctor, he booked an x-ray for hip and said he wanted bloods.

Tuesday I see him for results, hip was perfect, must have been a trapped nerve he said but the bloods were not good. ESR was 25, he told me start on 10mgs of pred straight away. I'm on 05 mgs.

I politely asked if the virus I had had caused the ESR rate to go up. It was possible but he still wanted me on the 10mgs just in case. I wasn't too keen on that as I have not had any problems GCA wise.

Pause... "Well, we could do another blood test to see if the ESR has gone down"! My choice.

I opted for another blood test which was sent off in a red box apparently.

I had to ring for the results, the ESR was 9, doctor said that he thought that the virus I had may have been the reason for the elevated ESR. Ummm!!!

My daughter pointed out that when the first results were elevated they should have contacted me.

Glad I went with *my* choice now. I would have been stuck on 10mgs of pred for nothing.

16 Replies
PMRpro profile image

A single raised ESR/CRP without symptoms should not result in a kneejerk raising of pred dose, it should be checked the following week and a trend established...

Primarose profile image
Primarose in reply to PMRpro

I had my suspicions that the virus I had may have caused it, I was right eh!;-)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

What a clever doctor (touch of sarcasm there) - telling you something we all know. Other things can cause inflammation markers to rise - not always PMR or GCA. Mine was stress over late hubby!

Plus yes your daughter is correct - they should have contacted you if bloods were abnormal - but unfortunately more and more is laid at our door, the patient, to chase for results!

Primarose profile image
Primarose in reply to DorsetLady

Thank you DorsetLady. Reading many of the posts in here has made me aware of the reasons for an elevated ESR. The CRP was normal.

I must admit, I plodded home after that appointment feeling very down.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Primarose

I know. More and more people are saying that - it’s not good is it!

Primarose profile image
Primarose in reply to DorsetLady

No it's not. It seems that people who have these diseases know more than the so called experts.

GCA still seems to be a bit of a forgotten entity.

Good for you making a very polite challenge to a quick fix diagnoses and “NEXT” attitude of the Dr. I think now they expect you to be responsible for your results where as we think no news is good news?

Primarose profile image
Primarose in reply to Estellemac

You are quite right, I am always told that they will contact me if there are problems, so I naturally assumed there wasn't.

I'll ask Father Christmas for a crystal ball!;-)

We really do have to manage most of this ourselves, don’t we?

Absolutely agree SheffieldJane, I said when I first joined that this seems to be a DIY disease.

It's the folk who do not have internet access and perhaps not able to do any research who must suffer the most.

Well done you.

I can understand why you felt low when you went home.

I feel like that most of the time when I leave the GPs surgery.

Unless you are very lucky , and I know many are on this forum , you find that unless you have really researched your condition yourself , or asked for advice here , you are often given poor diagnosis or not tested properly and given medications or increased doses that can delay your recovery by the General Surgery.

It's because they really don't seem to do ( or have the time to do) the thorough checks on what is best to do for complex conditions or because they don't think to check for them in the first place.

But there is an upside , your experience should make you want to give yourself a pat on the back ( if we could with our joints).

You have proven by your quick thinking , knowledge and by standing your ground that you are well in control of your condition and your healthcare. You have passed your Coping with Chronic Illness Diploma with flying colours and are a great example to us all.

Hope the bugs don't bite again and take care. Bee x

Primarose profile image
Primarose in reply to Blearyeyed

Awe, thank you Bee. I wouldn't have been able to do it without the help of you lovely folk.

You are a smart 🍪. We all know the difficulty of reducing don't we? Glad your numbers are better.

Primarose profile image
Primarose in reply to bunnymom

Like my phone!;-) If only we could get an *App* to zapped our diseases!

bunnymom profile image
bunnymom in reply to Primarose

Honestly not to sound like a whiner but all I really want for Xmas is to be well again.

Primarose profile image
Primarose in reply to bunnymom

You're certainly not a whiner bunnymom. Did you send your wish up the chimney!;-)

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