GCA came out of the blue!

[DevonMichael]

After a working life of 44 years with little time off work from illness. I continued the three years of early retirement in the same vein, avoiding going to the doctor. (I did not discover I had over 60 free prescription until the age of 64!)

On the 19 June I had googled a range of symptons which could be shingles if I took account of a rash or Giant Cell Arteritis if I majored on tenderness to my head. The next day I saw a GP and said I had experienced the following:

-tenderness to my head persists 3-4 weeks

-pain in jaw eating (lived on porridge and soup for weeks) now ok

-earlier headaches, left

-eye swollen over eyelid now ok

-left ear feels odd when nose blown

-past week some numbness on left hand & forarm and one instance on chin

-rash developed on left of chest

The GP thought it was GCA and immediately put me on 40mg of Prednislone sending me for four blood tests one of which was ESR. That evening a doctor rang to tell me that the ESR test result was 124 (saying over 10 was high!) The next day I was with the Rheumatologist who confirmed GCA organising further blood tests, chest x-ray and bone scan to follow.

A few days earlier I had never heard of GCA, now out of the blue my life has changed!

[Celtic PMRGCAuk volunteer]

Welcome DevonMichael although I'm sorry to hear of your diagnosis. I'm very impressed with your GP's speed of diagnosis and rheumy referral though. Hopefully by now the treatment has got good control over the inflammation and you are feeling much better than pre-diagnosis, with your blood tests improving. Ask away if you have any questions - there is always someone around to help from their own experience.

[DevonMichael in reply to Celtic]

Thank you Celtic. You are spot on! Never felt better then after the 40 mg Prednisolone (now down to 20mg). Brought huge levels of energy to my life. The more I have learnt about GCA the more I appreciated the GP (sadly temporary at my surgery) she got an always be grateful thank you card and bottle of wine! As I counted my blessings! Thanks for the future offer of experienced advice.

[dinhal in reply to Celtic]

Everyone is so interesting and different. I do have pmr and some symptoms of gca but my gp says you have bad eye symptoms with it and lose vision.

I have had screeching temple headaches, his pa said I have a large artery in my temple. I am confused. I live in a small town with one ra doc. it takes forever to get in.

She misdiagnosed me once before.

Yesterday I went to two stores and got really hit last night and this morning with bad leg and thigh pain, neck pain, etc. guess I wont do that for awhile. couldnt walk.

cant type good either..

[PMRpro Ambassador in reply to dinhal]

Visual symptoms are the worst case scenario and you can have GCA (or large vessel vasculitis) without ever having visual symptoms. I don't want to scare you - but there are some patients who have NO symptoms of any sort until they suddenly lose their sight. It isn't common, but it happens and is called occult GCA.

EyeWiki says: "The most common ocular manifestation in GCA is acute unilateral vision loss, which has been reported in 7-60% of patients with GCA."

And when I was in school - that meant that there are a LOT of patients who DON'T have eye symptoms early on.

Is there any way you can see someone else? Or educate your GP.

[dinhal in reply to PMRpro]

Thank you for that information. I'm going to look into that more.

[SheffieldJane]

Oh DevonMichael you must be in shock! The good news is that you've landed in a close, knowledgeable , supportive network. No matter how bizarre or basic your questions are someone will have the wisdom or advice you need. Welcome! So glad you GCA was caught. Diagnosis is the first problem many people encounter and then some! Welcome.

[DevonMichael in reply to SheffieldJane]

Hi SheffieldJane thanks for your welcome and offer of future sage advice, much appreciated. The shock was also quickly followed by the realisation how fragile health and therefore life can be! I am therefore counting my blessings on the speedy diagnosis and hopefully keeping my sight intact. I probably now value my retirement time even more as precious particularly with a two year old grandson to love and enjoy.

[dinhal in reply to DevonMichael]

about two years ago I had bizarre eye symptoms and wonder if anyone may have experienced these. I dont know if it had anything to do with the beginning of all this.

I started seeing large (HUUge) colored blobs on the ceiling when I looked up, the floor had big red blob...I thought it was blood...really scared me.

looking at someone their face was covered in green.

I also had patterns in my eyes of different colors. I still have one pattern that makes it hard to see through it if I am in a dim area.

My opthimoligist had no clue and my dr sent me to a larger city to a opthomaligy neurologist and he knew nothing. I had an eeg...the brain is fine. spelling not so much...

[sookiesue]

I am afraid that is how it is. I had never heard of GCA when I was diagnosed. Better to find out than either have a stroke or go blind! Good Luck.

[DevonMichael in reply to sookiesue]

Hi Sookiesue I am now trying to learn everything available on this new subject and I agree that early diagnosis and treatment are the critical issues and I have been very fortunate in having someone watching over me. Thanks for you welcome and good luck to you too!

[dinhal in reply to sookiesue]

Thank you

[raymck]

A good few of us have been through what you are experiencing and are now coping with the aftermath, thanks to this forum! Good luck and keep us posted.

[DevonMichael in reply to raymck]

Hi Ramck Thanks for your comments I intend to make the most of people's experience and this most excellent forum. And I am happy to share my experience for those starting out behind me to follow too! Good luck with your recovery.

[Celtic PMRGCAuk volunteer]

DevonMichael

Further to my earlier reply, if your name provides a clue as to your whereabouts, you might be interested to know that there are PMR/GCA support groups operating in the Devon area - there might just be meet-ups taking place near you. Clicking on the following link will take you to a list providing further details:

pmrgca.co.uk/groups/

Also as someone only recently diagnosed with GCA, you might find it helpful to read the book by Kate Gilbert, 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. It is available both on Amazon and direct from the Charity, PMRGCAuk, pmrgcauk.com, with all royalties being donated to the Charity.

[DevonMichael in reply to Celtic]

Hi Celtic

Thanks for your follow up email and helpful suggestions.

I did not appreciate the possible confusion with reusing my username that I also use for chess online. Devon is where my heart lies after being born and brought up in Torquay but I went to London at 17 and work has taken me around the country never to return except for the odd holiday!

I live in Staffordshire now so I have put an email request in for more information on next county Shropshire Support group.

I have just taken delivery of Kate's book! (Also ordered and await the Prof Dasgupta book) I am consuming all PMRGCA knowledge in these early learning days.

[DevonMichael in reply to Celtic]

PS just clicked your link (should have done that first before replying below) Thanks I see I can contact Shropshire direct through an e page pro forma which I shall now do!

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

As others have said lots of us have been there, completely unaware of GCA and its implications prior to diagnosis. Fortunately you have a GP who's on the ball - that certainly makes life easier, and probably saved your sight.

Life will certainly be different for a while, and you will probably feel bewildered, frustrated, angry and maybe lonely at times, but there is always somebody on here who will listen to you, and help where we can.

Learn as much as you can about GCA from PMRGCAuk web page, and other sites. If you are interested and nearby, I think there are support groups in both Plymouth and Taunton (see PMRGCAuk site). Guessing, like me, your name indicates location! If not, then check site for groups!

[DevonMichael in reply to DorsetLady]

Hi DorsetLady

Thanks for your welcome and post and I count my blessings on the GP response and the initial difference treatment has made for my life. I have a lot to be grateful for and will value my time before me much more!

Devon is where my heart is (born in Torquay and also lived in Exeter) now retired in Stoke-on-Trent so I am seeking information on Shropshire support as nearest location. PS I worked in Dorset and we lived for ten years in Poole and our children went to Parkstone & Poole Grammar Schools . Our dearest new grandchild now lives in Bournemouth so we still travel to Dorset.

As you suggest I am devouring as much knowledge as possible from the website and after reading the latest newsletter I have also ordered the two books on PMRGCA.

Thanks for the offer of listening and help.

[PMRpro Ambassador in reply to DevonMichael]

Did you know there is also a northwest charity:

pmrgcasupport.co.uk/

Their meetings appear to be in Leigh - I don't know where the Shropshire group meets though I imagine it is marginally closer distance-wise.

[DevonMichael in reply to PMRpro]

Wow that is food for thought. Thanks! The Shropshire venue is a village south of Shrewsbury and is 45 miles but country roads. Leigh is 48 miles but M6 and M62 all the way so maybe a better option. I will check dates of next meeting etc. Thanks again.

[PMRpro Ambassador in reply to DevonMichael]

That's what I was thinking - although the M6/M62 isn't always what I'd call desirable motoring...

Where is the Salop meeting then?

[DevonMichael in reply to PMRpro]

Yes M6 is fine when it is fine. Manchester north can get busy...

The Shropshire sounds very rural Leebotwood Village Hall, Leebotwood SY6 6NB with 1.50 tea and biscuits to pay for village hall and on A49 near Pound Inn according to google map

[PMRpro Ambassador in reply to DevonMichael]

Just up from Church Stretton - no idea what their roads are like these days. Very PRETTY there but...

[DevonMichael in reply to PMRpro]

Yes may not be so attractive in the winter and with early dark nights! Still I will keep my options open on all avenues as I absorb knowledge!

[Celtic PMRGCAuk volunteer in reply to DevonMichael]

By coincidence I checked with the organiser of the Leigh group for another enquirer yesterday. Their next meeting is on 13th September, starting at 1pm. Contact Ann on [e-mail]

[DevonMichael in reply to Celtic]

Thanks for that looks a good time for travel up.

[PMRpro Ambassador]

Welcome! For most people both PMR and GCA come out of the blue. And you have to learn a whole new "normal" - but you will get there.

[DevonMichael in reply to PMRpro]

Thanks for your welcome and reassurance. The daily intakes of medications, trips to organise freak drug supplies along with more medical visits are a new world to me but I am grateful that I have hopefully avoided sight loss issues. I see you say you have had this condition for ten years, is it still with you now? My Prednisolone medication plan is scheduled from 21 June 40mg down to end December 10mg. Will there be another continuation plan to follow on?! Initially I thought it would end then but think that was now flawed thinking?

[PMRpro Ambassador in reply to DevonMichael]

I've had PMR for 12 years. Three of us sitting together at a support group meeting the other day had had PMR/GCA (either or both) for 15, 13 and 12 years respectively. The symptoms return if we go too low on our dose. I had a flare in January - same dose as for the previous 18 months, return of symptoms.

I can't find it again but I read in a textbook some years ago that US experts are of the opinion that 25% of patients are off pred in 2 years or so but are at a higher risk of relapse later. Half get off pred in up to 4-6 years and the other quarter take longer, sometimes remaining on pred for life. Some of those will probably be because of poor adrenal function (one of the triumvirate I mentioned fulfils that criterion).

You must always remember that PMR/GCA do not work to timetables. Your doctor may have laid out a reduction schedule - but PMR/GCA may not comply. You will need what you need to manage the symptoms - because that is all the pred is doing, it isn't curing anything, it is managing your symptoms to allow a decent quality of life. It is never any more than that until the autoimmune part goes into remission. Whatever your doctor thinks or wants.

[DevonMichael in reply to PMRpro]

Thanks for your most helpful reply. Clearly I need to be prepared to face all eventualities and make the best of what is available to me with the hand that I am dealt.

[PMRpro Ambassador in reply to DevonMichael]

Spot on!!!! Just be aware. You can't do more. You will learn what your body wants/needs and how/what it responds to.

[DorsetLady PMRGCAuk volunteer in reply to DevonMichael]

Hi again,

As PMRpro says, and I will re-iterate, your doctor may have a plan for reductions. But as most of us find it is only a plan, and unfortunately the GCA doesn't necessarily follow it!

Having said that, most men seem to find reductions easier than ladies for some reason, and personally I think the high doses given initially in GCA cases does seem to get a grip of the I nflammation better than the lower doses given for PMR. No proof positive, and others may disagree, but personally having been on 80mg at outset (long story, if interested see my profile) I think (hope) that now some 4 and half years later it's has gone into remission, burnt out or whatever it does. Will find out the truth in a couple of weeks when down to zero.

You're probably overloaded with info just now, so won't waffle on, only will say, you need to pace yourself, learn to listen to your own body and don't be rushed into reducing by over-optimistic doctors. Live in the slow lane for a while, and leave the rushing about to others.

Take care

[DevonMichael in reply to DorsetLady]

Thanks for sharing your experience and thoughts. Much appreciated.

[Nanalinboy]

I'm on the same journey as you Michael , kept three jobs on the go, hit 60 and hit the ropes, under active thyroid, gca, pmr , fibromyalgia. What can we do? Sit and moan or try and carry on. Personally I do both, haha. 💞

[DevonMichael]

I am reading Kate Gilbert's book and also found some really useful video clips on Youtube for GCA, the more I learn the more thankful I am! The early diagnosis for me and therefore hopefully no sight loss is a blessing. So I try to be positive and count my good fortune but it is easy to moan about anything and nothing, it is a British trait!

[mega]

Devon Michael. I've followed very much the same path as you over my lifetime - I have had a couple of 'biggies' but got the treatment and got on with life.

I'd booked a trip to Chicago to visit family and had been feeling a bit out of sorts for a few days but not enough to stop me going, but while there, developed neck, head and shoulder ache on waking, plus very tender scalp and ear lobes. My eyes were permanently 'bloodshot' and my hearing got v bad. I found it relieved some of the symptoms if I sat-up to sleep, with the help of five pillows.

I did go to the surgery when I got back, feeling like death and with jet-lag! No-one there had a clue what was wrong with me, although my own GP said my blood was - seeking a descriptive word - deranged. I was sent to Oncology and told that it could be one of about four cancers or Lupus. Various tests, including a bone marrow and I was finally told it 'could be' GCA, which I'd never heard of. Put on steroids straightaway and the improvement was almost instantaneous. That all took three months but I gather there are people who have had to wait longer for a diagnosis.

The good affects didn't last long and then I began fainting, or very nearly, for a period. After three years 'they' did allow me a Rheumy appointment, but I'm not going there this evening!

Of course, I've reduced the steroids over 6.5 years but cannot get below 5mgs per day. Not alone there, either.

It sounds as though your medical team has got to grips with the nasty invader very quickly though and I very much hope you're back to normal soon.

With best wishes.