Now I’m confused again. The PMR I’m dealing with and my nearly entire focus on it has me forgetting that there may be another cause for my ear aches and sore throat. I’ve had chronic sinusitis for the last 5 years or so. The ENT doctors here are less than helpful if you don’t respond to antibiotics and are not a good candidate for sinus surgery. The symptoms are very similar to GCA and they come and go in the winter and spring of the year. I think the severity of the symptoms might be increased by seasonal allergies I some times experience. I won’t rule out GCA but the increase in prednisone dose has had little effect on the symptoms I’m having now. One big question is my eyesight. I have an appointment Monday with my eye surgeon and I’m wondering what I should ask him about pertaining to eye symptoms of GCA? Is the 25mg dose I increased to enough to address symptoms of GCA ? Does GCA follow PMR that quickly after PMR is diagnosed ? It would seem that I have a lot of Windmills to slay in this fight too.
Chronic sinusitis or GCA : Now I’m confused again... - PMRGCAuk
Chronic sinusitis or GCA
hi,
Think you are getting yourself confused….I doubt very much you have had GCA for 5 years [as mentioned in previous post], it rarely comes and goes seasonally as you mention.. that sounds much more like sinus and allergies. If it were GCA then, from my experience and many others, it would probably have got progressively worse rather than peaks and troughs. Although as you say it cannot be ruled out completely.
As for eye appointment, then an examination needs to be carried out to see if lack of blood flow is affecting the optic nerve, and no 25mg it not enough for GCA . Usual starting dose is 40mg provide no eye issues, if there are, then 60mg is usually the preferred dose.
GCA and PMR very often come as a package- but you probably would have had significant symptoms of both initially.
As you have said you are an ex military man, then [as the widow of a Warrant Officer Class 2 (WO2) equivalent to US Warrant Officer 2 (CW2] suggest you put that head back on and get your medical symptoms straight in your mind.
Then you can go through each symptom and decide if likely to be PMR, GCA or something else …in a focused way - you have the training [it never leaves you] so deploy it logically. 😊
Thank you for the push in the right direction! If you were married to one of us old Salts, you’ve probably seen that “ tunnel vision “ that can sometimes take our eyes off the ball. Hard to be a newbie in this new life I’m going to start. With yours and the others on this site I’ll make it through this.
You’re right on that … mine had coronary issues in later life.
And we’ll get you through it - haven’t failed yet! Not in our language… 😳
What a no-nonsense, common sense reply from DorsetLady!
Very often thoughts and concerns go round and round in our heads until our brains are scrambled and we can’t see the wood from the trees. When that happens to me I write things down in order to have a more substantial grasp on whatever is troubling me, cross out what seems irrelevant or trivial and concentrate on the more tangible. We often advise that when you are preparing for your appointment, write down your list of questions and at the appointment tick off each one asked and make a quick note of the reply. Ask questions like, “How do you suggest I proceed from here?”: “What would you do in my situation?” Don’t be fobbed off. All the best for your appointment on Monday.
Thank you I’m working on a list tomorrow. If I can rule out a sinus infection , the path might be a little easier to follow.
Have you had swabs done? Is it a dry or wet sinusitis? I was plagued with a dry sinusitis after Covid for about 6 months last year? What I found helped hugely for that was 2-3 daily saline nasal spray.
Thank you, I do use a Netti Pot often when my sinuses feel wet and inflamed. It does help the sinuses but not so much the ear ache and swollen gland. Should have had the tonsils taken out years ago, too late now with the blood thinners and all.
People do have surgery on blood thinners all the time.They’re just discontinued for the surgery and resumed afterwards.
Thank you for your reply. I have had several surgeries since my open heart aortic valve replacement. R and L rotator cuffs with anchors. Complete R knee replacement, fusion of cervical spine vertebra C-3 C-4, gallbladder removed, and two angiograms. Each time I followed a Lovenox bridging protocol for holding warfarin until my INR was under 1.5 for the surgeries. The problem is that getting back to my target range of 2.5 has been getting harder and harder. I’m warfarin resistant as I take 12.5mg a day to achieve 2.5 INR and it was taking 6-8 days to get back in range. Stroke risks after a week out of range can be increased substantially. Sinus surgery is said to be the worst for bleeding and they recommended no blood thinners for two weeks after the surgery so I decided not pursue it.
I didn’t realize you needed sinus surgery. I thought it was the tonsils. I sometimes think the sinus issues are from medication. other times it can be from allergens in the air. Every breath we take the sinuses. They are there to warm the air before it gets to the lungs.
I am now taking Eliquis because I have a history of atrial fibrillation. Even though my ablation was successful, they leave us on blood thinners in the event that afib sneakily returns. They now have an antidote for Eliquis in the event that surgery is needed; this is a new development.
That’s good they finally have an antidote for Eliquis. There are a lot of people on it, and afib seems to be more prevalent as people age.
It has been available since 2018 and works for all the -axabans. I think Pradaxa was the first in 2015 - the reason I chose it, plus it must be taken 2x daily as the half life is much shorter so it is out of the system faster.
We mechanical heart valve patients were so hoping the axabans could be prescribed for our mechanical valves. It would be so much easier not testing every two weeks and adjustments of the warfarin to stay in INR.
Here it was monthly - and the UK is even less frequent. My husband bought his own device and test strips - not cheap but very convenient.
I have purchased a Coaguchek XS meter and do test at home. As you say, it’s a little expensive as the test strips have gone up, but the piece of mind is priceless.
It was annoying here - we couldn't get the same device the hospital supplied to the GPs so the lab would supply the strips. In the UK they refused to buy a device for the nurses who went to the housebound patients - no, they had to take a proper blood sample, deliver it to the lab and wait to get the result so it took all day to see a few patients, Nuts.
I’ve been self testing or the last 10 yrs. Our Medicare System here approved the self testing in 2010. They supplied the meter and 12 test strips per year. I buy an additional 48 strips for two week test and surgical procedures that require INR adjustments and closer monitoring. I did buy a spare meter to check the provided meter and clinic meter just to be on the safe side. I paid 1045.00 for a Roche CoaguChek XS meter on Ebay. I think Roche Diagnostics is located in Germany. Maybe the meter / test strips are cheaper there?
Did this come out in the EU first? I don’t remember ever seeing it here until recently - here is US.
Do you mean the antidotes? FDA approved in May 2018:
pmc.ncbi.nlm.nih.gov/articl....
Yes I believe that is the one. I think they even had a trial that was stopped because of adverse events when using them for mechanical valves. May some day.
Thanks! I’m really out of the loop and behind the times with new things.
These folks here would be more informative on that than me. I think someone for the UK replied that they had heard it before.🤔
Hello Snazzy D …..I am interested in your comments on dry Sinusitis. I have googled the NHS website but could not find any info from what I’d consider *trusted* websites. Thanks .
It wasn’t diagnosed formally as “dry sinusitis”. It is useful to know if anything is draining, what colour it is and whether it just discomfort without liquid being involved. For me I was describing a dry but sore and raw feeling upper nasal passages and sinus tenderness that was not associated with any extra mucus or exudate. If anything there were only bits of dried blood. A saline spray gave good symptomatic relief. It started with a Covid infection but carried on. We had a dusty summer which at the time may have not helped especially as it is clay soil around here. There was no bad smell or any other symptoms so I tried saline spray first before seeking help.
I think it is time to stop overthinking everything as if you have to diagnose it.
Whether 25mg is enough depends on the GCA doesn't it? When I was concerned about some double vision, the local rheumy here in Italy said most rheumies consider that that would be enough to control the daily inflammation for most patients, The high starting doses are safety first - to get the local inflammation reduced as quickly as possible to reduce the risk of loss of vision. Hence higher doses are used for patients with red flag symptoms like jaw pain or visual symptoms since both suggest there is already some compromise of blood flow. But that is starting from a much lower baseline - you are already controlling some of the inflammation whatever level it is at.
There is no rule about when GCA and PMR develop in relation to one another - you can appear to have both from the start, one or other from the start or even have one at the start and the other manifest later in no given order. And if they looked more closely, a high proportion of PMR patients would be identified as having LVV or GCA with PMR as the only symptoms.
There is a different very rare vasculitis that could possibly cause your sinus symptoms but that is something to discuss with the rheumatologist when you finally see them so get your ducks in row before seeing them and list all the symptoms you have had. The seasonality does make sinusitis more likely - or of course it could be both, which happens but overlapping of two vasculitides, one rare and one very rare, is of course exceptionally rare!!! Management of this vasculitis is also pred initially.
Thank you, as always great information. Still 8 weeks out from the Rheumatologist appointment so I’ll have a lot of time to compile an accurate list of symptoms and questions to ask.
I can identify so much with the uncertainty about what disease is causing what symptom. It’s a minefield. I had awful earache and was sent for an ultrasound. It was negative but of course there are false negatives. Finally I persuaded my GP to refer me to an ENT specialist. Apparently unexplained ear pain puts you on the two week appointment list. Even the GP was surprised. A sinus CT showed something called empty nose syndrome. After two months of antibiotic and nasal washes 2/3times a day yucky drainage, sinus pain and earache is gone. ENT also referred me to Maxillo facial for a special X-ray which showed a very inflamed muscle in my jaw. I had to “rest” it, soft foods etc . The MF doc did say that could be inflammation related to PMR. So who knows. Sometimes we have to ask ourselves “ what would someone without PMR do.”
Thank you, I’m beginning to feel that way already.
Unfortunately, having PMR doesn't excuse you from the ordinary everyday disorders that come with aging!!!
Not impressed a GP doesn't know the items triggering the 2-week referral! No wonder my daughter ends up diagnosing some horrid nasties in the ED having been ignored by GPs, always supposing the patient could get to see them anyway !!!
‘Vitamin D3 may play a role in treating chronic sinusitis by reducing inflammation and regulating immune cells’.
Are you taking sufficient D3? Worth a look? There is a related post today re. D3
Thank you, I do take 100 mcg daily along with milk thistle, berberine, B-6 , B-12, zinc , and vitamin C. I thinking of adding calcium now too.
Beware of too many supplements - I have just posted about B6 which seems to appear in many supplements as well as in a lot of foods in the USA - if you eat a balanced diet including meat you are likely to get enough anyway and adding it in supplements on top can actually cause neuropathy.
Have you seen this answer given in a related post?
healthunlocked.com/pmrgcauk...
Maybe have your D3 blood levels tested as detailed in above answer?
Apart from Ca maybe look at adding K2 and Omega 3?
Going to look up milk thistle and berberine now - never heard of that 🤔
Again - beware supplements.
Milk thistle can inhibit the breakdown of pred and make adverse effects worse - I suppose you could also say it might work as a steroid sparer but that doesn't follow.
Berberine is an immunostimulant - depending on what it does it may actually make the PMR worse, After all, you are taking the pred to suppress the immune system's misbehaviour.
Thank you for that information. There is never any mention of counter action with other drugs in their descriptions.
Of course there isn't - they wouldn't sell as many. ALWAYS check - some can be quite risky together with prescribed medications and even with one another. There is a general recommendation not to use substances claimed to be immunostimulants alongside steroids.
I my case my sinuses start putting out extra mucus if I breathe cooking smoke, excessive air avoid cookouts because the smoke always up blowing in my face and then the next day I have issues. Sometimes the phlegm is so thick, I feel like I’m choking. It’s clear mucus but thick. I am on oxygen 24 seven so I’m getting dry air all the time despite water bottle on the concentrator. If it gets super stuck I take guaifenesin with plenty of water and that loosen stuff reliably. ENT exam found no cause…
I was misdiagnosed for years with PMR. I now know that I have vasculitis and it's caused kidney damage and problem with my sinuses. Just a thought. Ask the doctor for an Anca blood test.
Hank you, another good test for ruling out or confirming autoimmune disease.
No - it is a test for specific forms of autoimmune vasculitis - if ANCA is positive, the likelihood is it isn't GCA, or not only GCA as it doesn;t trigger ANCA.
Also a good idea to ask for your complement levels to be checked (C3 & C4 especially) and for your rheumatologist to run the anti-C1q antibody test.
I too have vasculitis, but a rare form that didn't show positive ANCA or ANA, or ESR & CRP elevation. I was misdiagnosed for at least 18 years and one of the initial and many cardinal symptoms was dry sinusitis and ear pain, which was unresponsive to antibiotics and didn't show on a CT of my sinuses.
Good luck 🍀
Thank you I was afraid the sinus issues and cervical spine issues would through a monkey wrench into this situation.
After years of of chronic sinus infections a ENT doctor/surgeon told me 10+ years ago that I had a deviated septum. Healthcare professionals had been prescribing Netti pots, sinus rinses and nasal sprays that had been clogging/blocking the deviated section and led to chronic infections thus antibiotics. Drainage the ENT doc told me was key and in minutes he performed a very painful and nasty procedure to clean it out so proper drainage could occur. Steam, humidifiers, sinus essential oils and blowing my nose has kept my sinuses drained and healthy. It’s worth getting a close look at why the sinuses are inflamed! If I hadn’t insisted on getting to the bottom of this I would still be accused of not using Netti pots, rinses and sprays correctly! Hoping you get the proper treatment for yours!
Thank you, definitely worth talking about at my next ENT appointment.
Hi, I have a long history of sinus infections. I’ve had polyps removed twice back in the 80’s. Even afterwards I would get at least one sinus infection a year. In 2016 I had a brain mri because of some sudden hearing loss. All looked normal. But at the bottom two doctors missed the last line. A blocked sphenoid sinus. Not until the next year with another infection and a sinus ct did they catch it. Mine had no pain which I’m told was unusual. Since the surgery I rarely get a sinus infection. I’ve been on prednisone since 2011.
One more thing to consider… I’ve had chronic sinus infections my whole life. I finally had an integrative MD tell me that the fungal component of sinus infections are often missed. She treated me with a round of antifungal and boom! I’ve never known a healthy sinus! It has been amazing to feel free of all the inflammation and congestion. Just another thing to consider.
Thank you I’ll discuss that with my ENT.
Another life long sinus sufferer here so stand by for a longish post please!
To try to resolve repeated sinus infections I had Functional Endoscopic Sinus Surgery (aka FESS) 5 time between 2002 and 2013, this was to increase the size of the drain holes. There was a lot of blood! The bone that regrew each time was progressivey more dense so that approach was abandonned. Having used a couple of other methods previously, for the past 12 years I have been using a NeilMed SinusRinse kit three times a day and this has become an essential component of my wellbeing. (I mix my own saline using 50/50 Kosher salt and Bicorbonate of soda)
In 2016 I was referred to the only Professor of Rhinology in UK, Valerie Lund. She ordered a whole raft of blood tests. The upshot was that I was told to contact an Immunologist as my Immunologulin G levels were too low, meaning that I did not have the requisite antibodies available to effectively combat chest and sinus infections. For the past 7 years I have been under the Dept of Immunology at the Royal Free Hospital in London. I inject myself weekly with 60ml of IgG and this has cut my rate of infections drastically, from 8 a year to just 1.
Obviouly that has made a huge difference to my life but it's not exactly a common condition so probably is not relevant to many others here.
This yeat I am back on the ENT round! Audiology referred me as they were concerend that I had "glue ear", pressure behing the ear drum preventing the tympanic membrane from vibrating properly and exacerbating my hearing loss. I turned up to ENT with a single page summary of my history and added that I have been regularly producing blood from my nose when doing the rinses. I think this rang a possible alarm bell because 2 days later I had a CT scan of my sinuses. The NHS can move fast when there is any hint a possibility of cancer!
The glue ear was hardly mentioned, however I have purchased a new Nielmed device called a Eustachi which does actully help to equalise the internal and external pressures in the ear.
The scan showed nothing sinister but did indicate extensive Polyps in the sinuses. At the follow up appointment earlt lasy month the Consultant's first thought was surgery. At the age of 81, and with Bronchiectasis, I was not keen on new surgery. The alternative is "medical management" to shrink the Polyps. Guess what - this is a short course of our frenemey Prednisolone! Followed by a course of steroid drops and then spray.
For the past 9 days I have been taking 40mg of Pred per day, with the associated insomnia with which we are familiar, plus "hyperactivity" during the day. The ENT man gave me a short sharp tapering schedule, (which I was tempted to ignore) so I have taken 25mg today and will be back to my normal 5mg/day at the end of this week. I am hoping it won't have set back my response to Pred for PMR. I have settled on sticking at 5mg for the next 3 months or so.
No different for you than for someone without PMR except your baseline is higher. Under 2 weeks the suppression of adrenal function should be minimal and if you were on 5mg before, it is questionable whether there was much to suppress anyway,
That's why I was sceptical about needing his taper. Google reveals that other NHS trusts use 25mg a day for 10 days with no taper.
I've had chronic sinus problems since I was a teenager. I've been using a homeopathic sinus congestion remedy for many, many years when I start to feel congested. I can feel my sinuses open up within a few minutes. I haven't had an infection since.
I tried that route for a while, it did help. But eventually my sinuses got so tender that the burning sensation was lasting longer and longer so I stopped the rinses with the special salts. I still use the netti pot packets and saline during the acute and infectious phases.
Sorry you've had so much discomfort. I'm referring to ingesting the small white homeopathic tablets. They contain Antimonium tart, Kali bich, Mercurous bin and Spongia tosta. I also found the essential oils and salt washes to be too strong. But I do still use a salt inhaler sometimes and a salt lamp. Best wishes.
And let’s hope 2025 will have have more answers for all of us.
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