GCA early signs , not sure: Hi all Have PMR... - PMRGCAuk

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GCA early signs , not sure

Leilagirl profile image
11 Replies

Hi all

Have PMR 6 months now on prednisone 6 mg.. still have some pain on 6 mg but it’s manageable. On plaquenil as well. Lately I’m having a pain 2/10 on pain scale on left jaw next to ear. No headeache! It’s not bad but it’s there. Is this how it starts or no. I certainly don’t want to be an alarmist.. but it is new, thank you

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Leilagirl profile image
Leilagirl
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11 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Notice you only started on 10mg for your PMR, that’s very low. Has your pain ever been completely under control? Plus you posted about TMJ previously - are you sure this new pain isn’t connected to that?

As you know PMR and GCA pains are usually bilateral, and I doubt it’s GCA but best to get it checked with your doctor and also get your blood markers checked.

Leilagirl profile image
Leilagirl in reply to DorsetLady

Yes you are right on. I am watching it. It’s not all the time either. Nothing to worry about right now .. thank you

Leilagirl profile image
Leilagirl in reply to Leilagirl

Also.. I have arm pain more than I should if well controlled with prednisone. I’m just so concerned about taking more try not to at all costs I know it’s a sticky situation and I’m playing with fire possibly.. It may come back to bite me later what do you think?

PMRpro profile image
PMRproAmbassador in reply to Leilagirl

To be at 6mg after 6 months suggests you have been a bit enthusiastic with reducing. There is no point taking too little to manage the inflammation properly - the left overs will mount up and eventually you will be back where you started not only in terms of pain and disability but also in terms of dose. Below 8mg is a similar amount to what your body produces in the form of cortisol anyway,

Yes, I think you ARE playing with fire.

Leilagirl profile image
Leilagirl in reply to PMRpro

You think going back up to 7 would be better now. I think it would do wonders . Thanks for your advice!

PMRpro profile image
PMRproAmbassador in reply to Leilagirl

I do - you can't force down to a lower dose - you have to accept the dose that the PMR needs at the moment. It doesn't mean you won't get lower - just not yet. 7mg is almost always a difficult point for various reasons.

Leilagirl profile image
Leilagirl in reply to PMRpro

This is so hard for an admittedly inpatient girl.. I have much to be patient about. Thank you!

Hmmm? They say I had PMR 2+ years before the GCA reared it ugly head. I had noticed pain in my jaw, sinuses issues, pain under my ear lobes, into my neck... I saw an ENT for about a year, who prescribed various drops and sinus cleaners, etc.. nothing helped. I just learned to live with what I thought were sinus issues. But the day the GCA showed up was undeniable... I was fine when I left for work and then about 2:00 was hit with the most God awful headache... like nothing I had ever experienced before. Over the next two weeks it overtook my life, until finally I was diagnosed and given Pred. Maybe mention your symptoms to your GP or Rheumy? Just to be on safe side.

Grants148 profile image
Grants148

I worry that l could develope GCA,because l have a constant pulse like noise in my right ear,which is connected to my actual pulse.lt is really stressful when the noise is louder than usual as it sometimes becomes irregular,missing beats and the rate sometimes becoming very rapid. My G P said that it is likely the PMR is nipping blood vessels in my neck. I also had a swelling appear the size of a large egg just below my ear a few weeks ago,l went to the out of hours GP at the local hospital and he said that there was inflammation around that area.Last week my heart rate was all over the place one night,plus missed beats,and l was having a PMG flare at the time.l have increased my steroid dose from 3 to 5 mgs.,and have noticed that for about three hours after the dose l have a slightly blurred vision and the tinnitus is much louder. I am not sure what to do ,go down to 4 mg,or just take it easy for an hour or two after the Pred dose.Thank goodness l have not had a bad headache,but my heart rate was so rapid early this morning l nearly phoned for a paramedic.l believe that the Pred.,can cause a rapid heart rate and would like to know if l should worry about this,or is it just the side effect.l am frustrated that nothing seems to be done about the problem in my neck ,l just wish l did not have to constantly listen to my heart !

Jamie345 profile image
Jamie345 in reply to Grants148

I had the swelling exact same was scanned and told nothing there to worry about,it has gone down now, I have tinamou as well and yes to sometimes loud and a bit scary heart beat not checked out yes! I'm on 8m predisinone tapering down.

Grants148 profile image
Grants148

Hi Jamie,Thankyou for your reply, l think the Pred and PMR/GCA,can cause palpitations which can be alarming.,l wish you a smooth journey tapering down the prednisolone,thank goodness there is this forum where we can receive good advice from others with these same conditions.lt helps to know that l am not alone regarding the tinnitus,it really scares me when it keeps missing beats but hopefully it usually settles down eventually,Best wishes Jamie from Patricia xx.

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