PMR Increasing pain, ear pain.

[Living001]

Hi, I’m new here. I was diagnosed last August with Pmr, started on 15 mg Pred , which worked straight away! I was decreasing the Pred as per doc instructions down to 9 mg by mid Feb, but had all the pain return. My new doctor has then put me up to 20mg which I’m slowly reducing . My question is , my pain is now worse , in my shoulders, upper arms, even my toes, weakness, profuse sweating, headaches and fatigue , including ear pain ( popping ) and occasional temple pain. Should I be increasing the Pred? My bloods are normal at my last test, so my doctor says I should be fine. Doc has now given me antibiotics in case my ear problem is an inner ear infection.I can feel my blood pulsating through my head . Currently on 17 mg Pred. Appreciate any advice .

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[DorsetLady PMRGCAuk volunteer]

Hi,

You need to get the ear problem sorted - it can be a symptom of GCA.

Of course it could may “just” be an ear issue, but you have a lot of other things going on as well which implies it may not be.

Your bloods may have been normal, but that doesn’t mean “you’re fine” - they have a tendency to lag behind symptoms for most people - so that’s why we always say “symptoms are the key”

Did you get relief at 20mg? If so, when did it return?

Suggest you ring NHS helpline and get a second opinion - giving all your symptoms - do you have sufficient medication if recommendation is to up your dose?

Have you tried paracetamol to see if the other symptoms are not PMR/GCA related?

[Living001 in reply to DorsetLady]

Hi Dorset Lady, thank you for your reply. The pain was relieved at 20mg, but as soon as I reduced to around 18, the symptoms returned . Every time I get my bloods done they coming up as normal now, so my doctor won’t investigate any further saying it can’t be the PMR. Other pain medication doesn’t help much. I do have extra Pred in case I need it . My Rheumy has said the same thing. Frustrating . This is my 2nd doctor , the first wasn’t helpful at all. Not had any experience with PMR .

[DorsetLady PMRGCAuk volunteer in reply to Living001]

Well I’m sorry, but he’s wrong - some people never have raised markers - getting on for about 15-20%.

If ordinary painkillers don’t help, then I’d plump for PMR/GCA.

I know it’s hassle but you need to follow it up.

[Living001 in reply to DorsetLady]

Thanks Dorset Lady, I’ll have to convince my doctor about the markers. In the meantime I’ll increase my Pred . Appreciate the support !

[PMRpro Ambassador in reply to Living001]

Even if the markers were raised originally, in some people they don't rise as much if at all while they are still on pred. Or they can take months to get to noticeable levels. Do you know what the numbers are and how low they got on 20mg?

[Living001 in reply to PMRpro]

Hi PMRpro, They have been under 10 for the last 4 months. Even when I’ve been in pain. Frustrating the doctor thinks I’m fine because the levels look normal.

[PMRpro Ambassador in reply to Living001]

Have you been pain-free?

[Living001 in reply to PMRpro]

I was pain free after the initial start on Pred after being diagnosed. Went well for awhile, but stress with work, sons wedding , then I was straight back in pain again. I’ve increased the Pred now to 19, hoping it will help.

[PMRpro Ambassador in reply to Living001]

If it is GCA developing - and honestly, it really could be - you will need more than that for safety.

[Living001 in reply to PMRpro]

Not sure what to do. Should I see the doctor and force the subject ? Prob not a good idea to take lots of Pred without doctor overseeing it .

[PMRpro Ambassador in reply to Living001]

I think you must - there is something going on that needs investigated.

[Living001 in reply to PMRpro]

Thank you .. it’s wonderful having someone to talk to with sound advice . I’ll call the doctor tomorrow .

[PMRpro Ambassador in reply to Living001]

Was going to ask why not until then - but I suppose it is a bit late in Oz!!!!

[Living001 in reply to PMRpro]

Haha.. yes , it’s nearly 9pm at night .

[PMRpro Ambassador]

All that adds up to suggest to me you need to see a rheumatologist as an emergency - if 15mg worked for PMR symptoms but now you are not getting relief from a higher dose and are exhibiting GCA symptoms that is significant.

Please call 111 and ask for advice from a doctor. If you develop ANY visual symptoms at all, you need to go to the ED immediately. DL has already said the rest I would say.

[Living001 in reply to PMRpro]

Hi PMR Pro, thank you. Looks like I need to see the specialist .

[jinasc]

Take action now - once your sight goes either partially or wholly - it is gone.

Better to be wrong, than chance losing your sight. No brainer as far as I am concerned.

Both DL and PMRpro are correct.

[Living001 in reply to jinasc]

Hi jinasc, So true , better to be wrong that’s loose my sight . Thank you for your wisdom .