Re: Flare

[MARION7]

Please can I ask, can you have a flare (head & neck pain, feel dreadful) with a low CRP & ESR?

Thank you

Marion7

[DorsetLady PMRGCAuk volunteer]

Hi Marion,

Yes quite possible, often the blood markers lag behind the symptoms. When were they tested last?

Are you sure it's not anything else? Flu? Overdone things?

[MARION7 in reply to DorsetLady]

Hello D,L

Thank you for replying...

Hope you are keeping well during this cold snap

As you will see in my reply to PMRpro, I have an infection.

I do tend to think I can still do the things I used to. We have had two bereavements since Sept in the family, elderly aunt and mum tend to rely on me. I'm also chair for a local Pre-School charity.

I will try to say no more often.

Hope to meet up with you and Dorset group in Dec all being well.

Kind regards

Marion7

[DorsetLady PMRGCAuk volunteer in reply to MARION7]

Hi again,

No wonder you're feeling like you are with all that's going on.

Hopefully with a new surgery things may improve on the day to day running of things. Probably good idea to see Rheumy before you proceed with sinus investigation.

Do hope you soon feel a bit better, and yes would be nice to catch up before Christmas,

Take care, DL

[MARION7 in reply to DorsetLady]

Thank you...

Hope to see you soon.

Take care.

Love

Marion

x

[trish29 in reply to MARION7]

Hi Marion7.. I hope you are soon feeling better.. You're symptoms seem to be like what I have been going through for the last few weeks ,particularly with the head and kneck pain ,I've also had upper arms and shoulders giving me about 3 times my normal pain .l have seen 3 different GPs trying to get help with my pain but to no Avail, they've actually tried to cut me down on my painkillers . I did get a Dexa Scan through it and hopefully get those results in 2 weeks when I see my kind Rheumatologist but in the meantime time until my appointment with him I am to an fro to my Bowen Therapist for gentle massage or Therapy and to my Osteopath who has given me strapping rather than Dry Needle Acupuncture which gives some relief . We are all so inclined to do to much. The original GP I saw was kind and Confirmed that I had a Virus and this has been going on quite a few weeks so be kind to yourself and rest when you can ..Best wishes trish29

[MARION7 in reply to trish29]

Thank you trish29

Really kind of you to reply.

The head and neck pain is awful on top of the other things going on eh?

Hope you feel well soon.

Kind regards

Marion

[trish29 in reply to MARION7]

Hello Marion7, I hope you are feeling better today.. I didn't get a good night at all but have managed to do a few jobs this morning. I am going to listen to my body and go for a rest now.I hope you have a pain free weekend and your head settles down .trish

[MARION7 in reply to trish29]

Take it easy trish, hope you feel better soon. PMRpro &DL always say listen to your body, we should take notice...

I still have a headache. Think I feel a tad better though. The hospital called to say they will see me next Tuesday for a GCA check.

Kind regards

Marion

[trish29 in reply to MARION7]

Hi Marion ,I'm pleased you feel a bit better ,yes we must listen to PMRpro and Dovelady and all the other people that give us such good advice .Hope all goes well Next Tuesday at the Hospital ..i will be watching your posts with interest..enjoy the weekend but it's looking fairly wet where I live ..trish

[Peggy76]

Hi Marion ....so sorry you are in pain it's totally debilitating I know how you feel & yes no amount of painkillers help it.oh I do wish you well. Do you think the cold weather contributes? Just searching for anything to help . Keep warm & well as possible .

Warmest regards

Peggy x

[MARION7 in reply to Peggy76]

Hello Dear Peggy,

Thank you for thinking of me.

I still have such a bad headache, save me typing, you will see my reply to PMRpro.

You look after yourself too. I will be thinking of you and wishing you well soon.

Kind regards

Marion

[Peggy76 in reply to MARION7]

Dear Marion. ..so sorry 😐 your head is so bad hope it eases soon ,I've been in chronic pain all day I feel I'm losing the will ,I can't exercise because my heartbeat is to slow they are fitting a pacemaker & only 17%of my kidneys are working ,so have to be careful what meds I take until they decide on dialiaslis ,but it's the osteoporosis in my joints that are the most wearing , so sorry for the rant but it's so nice tie have someone to talk to. Look after yourself keep warm. & as well as you can .

Love Maureen 😘 xx

[MARION7 in reply to Peggy76]

Dear Maureen,

Just seen your post, It's me, all over the place I am.

How are you today? You can rant all you like to me, as I said before, you are just saying how you feel. I realise myself that having a little chat with someone who cares, even from a distance, helps so much .

I hope you are getting the medical attention and support that you need.

Be kind to yourself and keep your chin up.

I will check in soon

Love

Marion

x

[PMRpro Ambassador]

Yes - although for many people the ESR/CRP track their symptoms and are a reliable indicator for them something is up, in others they can lag way behind or even never rise again while they are taking pred. It is a confusing thing for a lot of doctors who aren't aware of this fact.

But it COULD be you have a virus or your head and neck pain are muscular in origin. Have you got GCA or PMR?

[MARION7 in reply to PMRpro]

Hi PMRpro,

I have GCA & PMR. GCA diagnosed in the first instance 18 months ago.

In a nut shell, I reduced from 60 pred arriving at 8:5 three weeks ago on the dead slow method. Then a dreadful headache started and would not/will not, let up. Hurts to lay my head on my pillow, don't want to eat, no energy, affecting my every day life so much.

(GP surgery is in crisis, reception ask you what the problem is, they then decide if you need to see a GP... Felt so isolated and afraid actually)

Called surgery again, I wondered if I had a sinus infection as I do suffer from these or could this be a flare. Eventually saw a locum GP who insisted I go back to 60 pred just in case I sue him for neglect. (What!) Gave me antibiotics as well. I called the rheumy helpline at our hospital to run this advised dose past them, a Dr said not to go back to 60 as my ESR/CRP levels are low, pred causes headaches and cannot be having a flare.

A few months ago I had a scan on my sinus's, went for the result's yesterday afternoon, hence the delay in replying, I have a severe infection in my sinus, the consultant would like to operate and investigate on 25 Nov. Like you, she says low inflammation readings can be deceptive, would like the rheumy dept to check me before the op as I could also be having a bit of a relapse.

I am in the process of registering with another surgery by the way.

Big, thank you so much for being so good and replying to me, wish I had posted a "Help" before this as I have been stressed, I tend to keep things to myself like many here.

Big nutshell eh?

Kind regards

Marion7

[Peggy76 in reply to MARION7]

Dear Marion how are you getting on with your new doctors surgery , it's all so protracted & wearing .i wish you well real soon. .....love Maureen x😘

[MARION7 in reply to Peggy76]

Dear Maureen,

I've not seen anyone at the new surgery as yet. And, yes, it's so wearing , worrying and stressful, it adds to our horrid symptoms.

Thank you

Hope you are feeling at least a little bit better today.

Take good care.

Love

Marion

xxx

[PMRpro Ambassador in reply to MARION7]

Hum. Big nut - not just big nutshell!!!!

I think saying going back to 60mg was a bit OTT but a rise to a bit more to see if it helped the headache would have perhaps been an idea. I don't actually know how the consultant thinks you can just have a bit check for GCA - if only it were that easy! At what dose would she be happy to operate? The sinuses could be the cause - but so could GCA.

But whoever you spoke to on the rheumy helpline is in cloud cuckoo land - WHY can't you be having a flare? Being on a dose of under 10mg will NOT stop GCA flaring if it wants to. If you didn't get a headache at a higher dose and only got it after reducing from 9 to 8.5 - I doubt it is a pred headache and the first thought must be having reduced too far - as that is the most common cause for a flare.

As for receptionists doing triage - dear heavens...

[MARION7]

I know, 60...

I wondered if I had reduced to far and my body was rebelling. I did go up to 15 now down to 10. Don't know what else to do.

I'm now waiting to hear from the rheumy dept as I need to get the go ahead for my sinus op. ENT consultant would like me to be checked in case I'm having a flare as well as having a a sinus problem.

Rheumy secretary is now on her high horse because "I" was asked to call her to make an appt.

Yes, the receptionists... Bad management.

Thank you PRMpro