Started w Sinus issues in left ear

[bethm1129]

Hi, I'm new to the community and so happy I found you all. My issues started with what I thought was a sinus infection that built up in my left ear. The odd popping noise and the full feeling was treated with antibiotics which did little but the issue faded away so I thought maybe it was a sinus issue after all. Weeks later I woke up with all the horrible symptoms of PMR on Nov 21, of 2021 and its been a challenge since then. I noticed the symptoms of GCA ( which I still thought was a sinus issue) had returned a few weeks later. I am lucky enough to experience the aches and pains in the specific neck shoulders and hips to have slightly reduced, but the back of head tightness, burning jaw pain, headaches, and left ear fullness have increased. I go for an appt w surgeon tomorrow for set up of temporal biopsy that my Rheum wanted done. I've been on prednisone for 3 weeks now and all my blood tests were close to negative ( numbers well under levels to be concerned with) the only thing is the head issues mentioned above are increasing. Would you guys agree this sounds like true GCA, even with conflicting lab results? There is a sad lack of info 'out there' so the more info I can get from true experiences the better.

Any help is so very greatly appreciated.

[PMRpro Ambassador]

Hi and welcome.

I would say it sounded very GCA-ish and never mind a TAB, what you need is probably more pred! Symptoms always trump lab values.

"all my blood tests were close to negative (numbers well under levels to be concerned with) "

I'd say someone needs to do some reading: there is no link between the level of the blood markers and the severity of PMR or GCA - up to about a fifth of patients have markers that remain within normal range, although they may be raised for them. Normal range isn;t the range of readings found in an individual patient, it is the range that includes 95% of a very large population of apparently healthy people. Snazzy on this forum has said in the past, her markers were still normal in the ED as her vision was shutting down.

There is loads of info in the FAQs - the link is just below your post. And what dose are you at at present? That long a wait for a biopsy while already on pred will greatly reduce the likelihood of a positive result.

[bethm1129 in reply to PMRpro]

Hi PMR Pro, My GCA was 7 and then 11 two weeks later. That was the 'well under' levels I referred to due to knowing a physician would make the same remarks. I understand the levels really don't indicate accurately and thoroughly when symptoms are so such as they are. I'm presently on 20 mg pred a day. The jaw pain is intermittent and mostly feeling like my salivary glands are spasming continuously. Just so many weird things and docs dont seem to really know much about it.

[PMRpro Ambassador in reply to bethm1129]

They don't appear to, no - you need more than 20mg for those symptoms, whatever the lab values say.

[bethm1129 in reply to PMRpro]

Oddly, I've also noticed the tissue around my left ear drum remains extremely red although there is nothing concerning showing behind my eardrum. The umbo shows a bright blood spot which suggests pressure behind it or possibly something forcing blood to that area? There has been no injury. I worked with an ENT in the office for a few years but never experienced working with this situation. This concerns me as well.

[PMRpro Ambassador in reply to bethm1129]

Poor blood flow to parts of the ear can also happen with GCA. - you need a doctor to examine your ears.

pubmed.ncbi.nlm.nih.gov/314...

might help any doctor you see.

[SnazzyD in reply to PMRpro]

20mg is possibly too low a dose for only 3 weeks in. I was on 60mg for a few days and then 40mg for 6 weeks before reducing started and I needed every one of those weeks. Perhaps they are trying to give you a bit of cover without potentially causing a false negative on the biopsy. The longer and the higher the dose the more likely your biopsy will show negative. However, guidelines I’ve read say treatment should not be delayed in order to get tests done because of the risk to eyesight. As PMRPro says, my ESR was 16 which, while within normal range, was high for me since my normal is 3-4. My biopsy was negative also, possibly not helped by being on 60/40mg for three weeks. The diagnosis was made from the history and the rapid relief I got from 60mg Pred. If you have active GCA I wouldn’t expect 20mg to do the trick after only 3 weeks.

[bethm1129 in reply to SnazzyD]

Hmm, wow ok thank you! Good to know. The joint pain in the typical 3 areas went away immediately but the head region issues I've explained are ramping up slowly. I wish I had access to see if I'd never had a GCA prior to any of this. I don't recall that I did, but I'd like to know what my normal is. Thank you again.

[PMRpro Ambassador in reply to bethm1129]

If the symptoms are INCREASING on your current dose - do make that very clear to the doctor. If you aren't on enough, it won't stop the inflammation progressing. 20mg is enough for pMR - it isn't enough for safety in GCA>

[bethm1129 in reply to PMRpro]

Ok I certainly will. Thank you for this most valuable information. I am so thankful I stumbled on to this forum. I am printing the article to take with me as well.

[bethm1129 in reply to bethm1129]

Just realized my error. Meant to state that I didn't recall that I'd had a Sed rate test prior so I don't know what my normal is.

[PMRpro Ambassador in reply to bethm1129]

Most people haven't!

[DorsetLady PMRGCAuk volunteer in reply to bethm1129]

No it’s not a test done until you have an issue, so most don’t know “their” normal….

[SnazzyD in reply to bethm1129]

It can be tricky to diagnose at the best of times as others have explained. Most doctors I came across weren’t bothered about the ESR being 16 as it was within the normal range but I knew I’d never been that high even with wound infections in the past. Also, If you get a negative biopsy it doesn’t mean you don’t have it but a positive is pretty definite.

[bethm1129 in reply to SnazzyD]

ok, thank you

[Dolcelatte in reply to bethm1129]

When I was diagnosed with PMR by my GP in January 2020 I was put on 15 mg Prednisolone.My ESR was 105 and my PCR 93.

I was lucky enough to see the consultant Rheumatologist when my GP sent me to the Emergency care unit as my pain had not subsided.

The dose was increased to 40mg as I complained of scalp and jaw pain besides shoulder and girdle pain. GCA was diagnosed. No biopsy was necessary as I was already on corticosteroids.

The higher dose did the trick and apart from a minor flare a few months later, I had a major flare a year later when I tapered to 3mg.

Again, very high inflammation markers and my head and jaw pain was excruciating. Back in hospital and dose increased to 40 mg. Rheumatologist very worried about my eyesight, which luckily was not damaged. I made the mistake to suffer for about 3 weeks without asking for help. Please be mindful if your pain gets worse and ask for help quickly. The increased dose worked straightaway.

[SnazzyD]

What dose are you on?

[bethm1129 in reply to SnazzyD]

20mg Pred

[DorsetLady PMRGCAuk volunteer]

It does sound GCA ish….but the biopsy may not prove to be conclusive..it isn’t always.

As for the inflammation, between 7-20% of patients do not have raised markers -which is why symptoms should always been the main consideration in diagnosis.

[bethm1129 in reply to DorsetLady]

DorsetLady, Thank you for the info. I felt the same way but wanted to bounce my symptoms off you guys to see if there was an agreement. Still learning and trying to help myself as much as I can.

[DorsetLady PMRGCAuk volunteer in reply to bethm1129]

Have a look at this post it gives the various symptoms etc that GCA patients have reported -

healthunlocked.com/pmrgcauk...

..and maybe look at my story - bit extreme -

healthunlocked.com/pmrgcauk...

[Broseley]

Hi Bethm1129 I was put on 15mg pred initially but the head, ear and jaw issues didn't completely resolve - they were better. My GP sent me to the Urgent Assessment Centre at the local hospital. Blood tests there showed my ESR and CRP had increased, not gone down as expected. I notice yours had also increased. I hope they retest you again. I was put on 60mg pred for one dose then 40mg for a month before starting a taper. All my "head" symptoms disappeared. I hope you get sorted quickly!

[bethm1129 in reply to Broseley]

Hi Broseley, my tests that showed the increase in the ESR were within two weeks of each other, so I am interested as well if it continues to go up since my symptoms seem to be getting more prevalent. I will ask my Rheumy if she will consider another set of tests as well.

[Ripley52]

Hi Beth,

I was particularly interested in your post because you described exactly something going on with me in the last month or so. I have had PMR for years, however, and have been on lowish dose of pred (currently 6 mg) for several years. I had the ear issue with crackling and discomfort and fullness and it felt like it became a sinus infection. Have never had an earache in my life so it was strange. I then had issues with chewing, which is often considered one of the primary signals for GCA. Pain behind eyes that comes and goes. My rheumy didn't think I it was GCA based on checking temples, labs, and my description of symptoms. He diagnosed me with fibromyalgia a few months ago and feels that this current problem is likely TMJ (which is frequently found with fibro). I had been told years ago by a dentist that I had mild TMJ. I've seen an ENT and had a head scan which I find out the results from next week, and am scheduled to see a Doc who is a specialist with TMJ. I am NOT suggesting that you have something other than GCA. It may turn out that GCA is what's going on with me as well. I would, however, suggest investigating possibility of TMJ and/or fibromyalgia which could (emphasis on "could") cause many/most of the symptoms you described. Are you having severe headaches? Are you having trouble with chewing which causes jaw, cheek pain and fatigue? Lots of questions that you may have already been asked by your docs.

[bethm1129 in reply to Ripley52]

Hi Ripley52, I agree our symptoms do sound very similar although I've never had TMJD before and there are no issues with my jaw when the face and scalp pain are not active. My entire jaw seems displaced lower on the hinge when this occurs. My back teeth don't meet during the occurrence and I can't chew food. I can only touch it lightly with my back teeth. The jaw issues will fade when the back of the head and behind my ears pain fades as well. My eye sight is less blurry as well. Im going to pursue all avenues for this thing. I'm really scared of the possible cardiac conditions, sight and hearing loss and stroke that can occur. It's all rather bewildering.

[Sharitone]

back of head tightness - sounds familiar!