GCA symptoms

[90planetree]

Following on from yesterday I am wondering if anyone who has had GCA or is knowledgeable about it can identify with any of the following symptoms that I was having before being upped to 20mg prednisolone by rheumatology registrar? Pain at base of skull, seemed like coming from muscles as very tender! Pain going through ears from one side to the other? Some throbbing/pulsating when reading, still have now despite higher level of steroids, but do have pulsatile tinnitus? Any comments please would be appreciated.

[DorsetLady PMRGCAuk volunteer]

Have to say it doesn’t sound like my GCA did......but that’s not to rule it out.

[SnazzyD]

I had tender muscles at the base of my skull before diagnosis with GCA. However, I have also had trouble with my neck muscles, namely the sternokleidomastoid muscles. Tension there can cause GCA-like symptoms. You’ll see the list in the link below and it includes ear pain. The pulsing may be due to the increase in Pred; I certainly found the higher doses gave me a permanent pulsing sound. However, tinnitus can be a sign of GCA too and I had that but different to pulsing, more of other types of noise. It is interesting that you feel it gets worse when you are reading. Is that when you are bending your neck down? Perhaps that position could be put the SKM muscles into tension and it may affect the blood flow a bit. However, it may be inflammation in the neck vessels and bending the neck might compress them a bit. Perhaps do the neck exercises to keep them working well. I had a few what I thought were relapses but a session on Bowen therapy fixed it in an hour so I knew it was the usual. It’s not always a simple diagnosis for sure. Keep an eye on it as if it is GCA 20mg might not but be enough. healthline.com/health/stern...

[90planetree in reply to SnazzyD]

Thanks for your replies & the link SnazzyD. That sounds interesting re SKM muscles & Bowen therapy, there is a lady fairly close to me in Sutton Coldfield Birmingham if she is practicing at present! Yes I suppose when reading I am bending my neck down, it seems the pulsating starts when lifting my head back! I will do some of the exercises from the link. By the way I was diagnosed with the pulsatile tinnitus many years ago so not a new thing! Can’t say I am having any eye problems though except my usual dryness & allergy symptoms. Thanks again for all the input, very useful!

[SnazzyD in reply to 90planetree]

My tinnitus started about 18 months prior to diagnosis and was intermittent. I had small and declared insignificant hearing loss. It got worse just prior to diagnosis and now I have permanent and worse loss on my right side with a two tone tinnitus. GCA can affect the blood vessels in the back of the neck and pain in the base of my skull and down was my main symptom up to diagnosis for some weeks. It was notably unaffected by massage and I couldn’t lie with pressure on the back of my head. I changed my pillow about 5 times. My SKM problems arrived as my muscles became weaker with Pred so posture was key. This is why I always kept on top of the SKM in order not to interpret it in the wrong direction. Once I even got burning in my scalp with it.

GCA doesn’t always affect the eyes to start with so clear eye exam doesn’t necessarily mean no GCA. As SJ has, it can also affect the larger vessels below the head. It’s a bit of a game sorting it all out!

[90planetree in reply to SnazzyD]

Thanks SnazzyD. Very helpful! Fortunately I haven’t had any hearing loss as you have & have had this pulsatile tinnitus for many years & it is intermittent. It is a game sorting it out as you say but I am hoping I will be ok until i see the registrar in 5 days time unless I get any other symptoms. When I spoke to my optician about symptoms he said because I didn’t have any eye problems I should speak to dr or rheumatology!

[SheffieldJane in reply to SnazzyD]

My worst head pain was always where my skull bulges out above my neck. I always put it down to Cervical spondylosis, but I wonder, it seems to be affected by the ebb and flow of my Vasculitis.

[SheffieldJane]

My diagnosis is GCA/LVV. I have experienced all that you describe. Before diagnosis, I had a run of extreme ear infection where my ears would swell and close. Nobody in the medical profession has made any connection. I think it was the forerunner. I have definitely experienced pulsatile tinnitus. I associated it with Steroid treatment.

[Hidden in reply to SheffieldJane]

Morning Jane, I read you've had ear probs too. I've suffered Eustachian Tube Dysfunctional for over thirty years...mostly my left ear. I put this down to my sinus issues or allergies. I was constantly seeing my ENT consultant with a perforated left eardrum. He would microsuction the muck out and then another course of steroids or antibiotics. Since my diagnosis of PMR/GCA and on high intake of steroids my ears have been brilliant, even the tinnitus which I've also suffered for thirty years is a much lower sound now. I joined the Patient forum many years ago and lots suffer the same problem with their ears. So now it makes me wonder if the blocked ears were all about inflammation. For many years too I had the tender and achy occipital bones (bottom of my head) again since taking steroids that's settled down too. I dread once off the steroids my ears play up again, but hopefully not. My last blood test a few weeks ago my ESR was 2.4 and CRP was 2. Hope it remains that way as I slowly reduce. Another blood test next month, prior to seeing rheumy sometime in June (waiting for appt). Next week my tapering regime will be 8mg and 7.5mg. Fingers crossed !!

Anne

[SheffieldJane in reply to Hidden]

Morning Anne. The most effective treatment I had was seeing an old school consultant every month for an ear wash-out. He kept me clear of infection for 2 years. He then retired. His successor didn’t think that this was an effective use of his time. So it was back to infection, Otitis something ear drops and periodic antibiotics. Haven’t had an ear infection since being prescribed Pred 5 years ago. I am very troubled by excessive phlegm since Tocilizumab injections 10 months and counting.

[Hidden in reply to SheffieldJane]

Rotten for you Jane. It was the Otitis that eventually caused the meningitis back in 1994. Again, missed by surgery and hospital. Hence the loss of sight in my left eye. People that suffer from ear infections must be careful of it turning to meningitis. Mine was called pneumococcal meningitis.

[SheffieldJane in reply to Hidden]

I worry that my chronic nasal infection will travel to my brain. I feel as if I’ve been punched in the face and it’s been about 5 months -ironically, triggered by an over zealous home test, COVID swab. Doctors prescribe ineffective ointments.Poor you! That is a dreadful thing to go through.

[Hidden in reply to SheffieldJane]

Don't worry Jane, it is rare, but one still has to be mindful. I have chronic left side nasal problems and probably need surgery. I get blocked up on left side as soon as I lie down to sleep. I've used everything out there, from nasal washes, steroid nasal sprays, you name it. The only thing that works for me is Otrivine. One squirt and I can sleep again. But, this shouldn't be used over long periods. Well, I've been using it most nights for years and years....no rebound effect so far. Again it's probably down to inflammation. I've had sinus surgery twice over the years. I have a brilliant ENT consultant, such a nice man.

[SheffieldJane in reply to Hidden]

I will see if I can get Otrivine prescribed. Thanks!

[Hidden in reply to SheffieldJane]

Hi Jane, you won't get it on script. £3.79 in Asda, Boots or Superdrug. X

[SheffieldJane in reply to Hidden]

Got it x as much, no worries! X

[Hidden in reply to SheffieldJane]

Are you saying you've bought it Jane ? I always buy the purple box one...prefer how it sprays X

[SheffieldJane in reply to Hidden]

Thank you! Especially with Hay Fever season, it is worth a try.

[Hidden in reply to SheffieldJane]

If you suffer hay fever, like I do too, you need a daily antihistamine. I've taken a Citirizine 10mg daily for years (I think I have what's known as all year round rhinitis) All the Otrivine will do is unblock your nose. I can't be without it.

[SheffieldJane in reply to Hidden]

It is strange, the trigger was my COVID swab that made my nose bleed and it has been infected ever since - several months. I connect that with the immunosuppressive effects of Tocilizumab

[Hidden in reply to SheffieldJane]

They were over zealous when they did your test. Not nice going from throat to nose is it ? I don't know anything about the drug (injection) you have to use, Tocilizumab...do you have RA too ?

[SheffieldJane in reply to Hidden]

It was a home test, so all my own fault. Tocilizumab is given to people with GCA who have had a difficult time with coming off Pred in the past. Your Rheumatologist needs to make a case for you to a panel. In the UK you are allowed 12 months of it. It is an RA drug.

[Hidden in reply to SheffieldJane]

I'm hoping I won't need it Jane. All seems to be going well with me at present. On the 12 May I'll be doing so many days on old dose, which is 8mg and the rest on 7mg....I think this will be for a month before doing 7 and 6...but as I've said instead of dropping to 7 I think I'll take it even slower and go for 7.5 mg

[SheffieldJane in reply to SheffieldJane]

Best of luck Anne. Remember ordinary painkillers can ease withdrawal pains. I may have wrongly assumed a flare in the past as I believe that they can go on for a few days.

[PMRpro Ambassador in reply to Hidden]

Have you not seen the multitude of posts about tocilizumab/Actemra on the forum? It is the only biologic drug to be approved for use in GCA to get patients to a low dose of pred and even off it for half of patients. The use is restricted to long term/problematic patients in the UK, it is used more widely in the US.

[Hidden in reply to PMRpro]

Yes, I've seen posts but didn't know what it was used for. I'm hoping I won't need it as my GCA seems to have subsided.

[DevonMichael]

My own GCA symptoms were jaw pain on chewing (I thought it was dental and took to soup!) My scalp was tender , noticeable when trying to scrub hair in shower and when my head hit the pillow at night it drew a grimace. Also had headaches. On diagnosis and 40 mg all these issues immediately disappeared! if you have GCA then 20mg not enough, whilst 40mg worked for me I understand many start on 60mg. Good luck!

[90planetree in reply to DevonMichael]

Thanks DevonMichael. I have not had any jaw pain on chewing nor any problems with head hitting pillow! Did you have any tests to diagnose GCA?

[DevonMichael in reply to 90planetree]

Yes I had blood tests including ESR (erythrocyte sedimentation rate) and the doctor rang me in the evening with result of 124 (meant nothing to me) when I asked for clarification he said above 10 is high! He was concerned but reassured when I said my GP had arranged an urgent appointment with rheumatologist for the next day. The rheumatologist rang my home and spoke to my wife to ensure I was on my way to the hospital appointment. I was amazed at the care generated.

[PMRpro Ambassador in reply to DevonMichael]

Above 10 might be high if you are 15 ... 20 is the usual figure for older men! But I won't dispute that 124 is high! A lot of doctors think there is a relationship between the level and the severity of illness but that isn't necessarily so.

[90planetree in reply to PMRpro]

Does CRP of over 200 in acute phase mean anything to you PMR with your vast knowledge?

[PMRpro Ambassador in reply to 90planetree]

A CRP that high would be indicative of a lot of inflammation - or other cell damage. CRP can be as high as 400+ after hip surgery for example.

healthline.com/health/c-rea...

[90planetree in reply to PMRpro]

Thanks PMRpro for the info & link, just hoping 20mg brings the inflammatory markers down, although they had come down somewhat after the acute phase!

[90planetree in reply to DevonMichael]

Thanks. Very good care you had in beginning, hope it’s continued! My ESR was raised at start of this but CRP was over 200! They were concerned & I had CT scan & ultrasound which showed wear & tear but nothing sinister!

[Hidden in reply to DevonMichael]

On my diagnosis for PMR I was running at 515. Then GCA arrived so back up from 15mg to 40mg. Currently ESR 2.4 and CRP 2......so really happy with those numbers,

[nannyjc]

Hi. These were not my symptoms but my doctor immediately put me on 85mg prednisone for 2 weeks to effect immediate relief of the symptoms, particularly the fear of going blind. Then he tapered me down at regular intervals to see if all still ok. An effective method but I never got below 4mgs. Do not allow this to happen to you. Prolonged use of steroids damages your bones and all my problems now are caused by having fragile bones. And I am permanently on 5mg prednisone because my body would react badly if totally removed. My PMR and GCA started 15 years ago. Good luck with your treatment.

[90planetree in reply to nannyjc]

Sorry to hear you’ve been on steroids for so long! Hope you are comfortable on 5mg. I suppose you will be on this dose for life. Has the PMR never gone into remission?

[nannyjc]

Since I’ve been resigned to taking 5mg for life I haven’t had symptoms and haven’t worried about it. My severe earache always used to return at 4mg, which is why I’m on 5mg now.

[90planetree in reply to nannyjc]

There doesn’t seem to be much point in not staying where you are now at 5mg.

[Hiland]

Hi, I had pain at base of skull and pain behind both ears - as well as scalp sensitivity, head pain etc. prior to diagnosis but the neck and ear pain resolved following commencing 60mg pred.

[90planetree in reply to Hiland]

Thanks Hiland...Pain at base of skull has now improved a lot, & neck & ear pain improved.I am still getting a few headaches but am seeing the registrar tomorrow at the hospital

when I will explain everything that has been happening since he upped my pred to 20mg.

Do you have any dizziness when standing up? I have been getting some since being on 20mg as I did the first time around.

[Hiland in reply to 90planetree]

Hello 90planetree, yes I used to get quite severe dizziness when I was on higher dose but not now that I am down to 17.5. Glad to hear your symptoms have improved.

[Liby57]

bbc.co.uk/programmes/articl...

[90planetree]

Hi Libby...thanks for sending me the link from "Trust Me I'm a Doctor". You were diagnosed just before I was (July 2020) looking at your profile. Hope you are managing to taper okay.I saw rheumy yesterday & he wants me to tape initially, as I did the first time, as I managed to get to 10mg reasonably well so I have started this morning. We will then take it from there.

[Liby57 in reply to 90planetree]

I’m down to 2mg now and ideally would love to be off Pred altogether but appreciate the advice on this forum and not rushing. Wishing you Good luck with your tapering, just take it slowly.

[SheffieldJane]

I had the severe base of the skull pain too and continue to be alert for any eye symptoms although they didn’t feature in my symptom picture for GCA/LVV. My Rheumatologist says I am low risk - age etc.