What the f**k is “GCA?”

I always had visions of myself as a timeless, ageless woman, who would grow old effortlessly and gracefully.  You know the type; the woman who glides into old age with neither a care nor a worry.

I envisioned my older, confident self as fairly attractive, healthy, and on the enlightened side; a more mature version of my younger, “truer” self.

Almost unnoticeable to the outside world, I would move smoothly through the decades, seemingly untouched by the ravages of time… and then, I’d die.

Easy peasy. No muss, no fuss. Gone. Done. Over.

That was the plan.

I never considered or even begun to prepare for a long and/or arduous ageing process. And for some reason the thought of dealing with any type of debilitating illness was, well… quite frankly, inconceivable! 

Ahhh, but the gods, they do love to interrupt our silly, fanciful, mortal “plans” don’t they?  With a nod of the head, or blink of an eye, our cleverly, crafted schemes are so very easily thwarted.

In the last month, I have seen my perfect “vision” of growing old gracefully (and healthy)  crushed like a tiny, insignificant, bug!  I think I may have actually heard the unnerving “splat,” as the maceration took place!

In an instant the visions of me, as a “goddesslike” creature, slipping away gracefully into the gentle arms of old age and eventually death, were exterminated.

Instead, it appears that I may very well be, perilously, skidding (head first) into that noxious mixture of fire and brimstone, that so many people find “is” their experience of old age and poor health.

Seriously, “WHAT THE F**K?”  …does nobody have any respect for a finely tuned, well thought out plan?

Monday, November 13th started out like any other day… I worked a 7:00 to  3:00 shift (on the Bristol Ward) at the Royal Sussex County Hospital. It was busy and somewhat stressful, but really just a normal day.

I realised, as I took my seat on the bus, that I had a raging headache.

“Hmmm? stress,” I thought.

As the Number 7 bus plugged along Western Road, I became more and more aware of this excruciating pain in my head and an overwhelming feeling of exhaustion.

No matter, the day was done, I was on my way home and relief was in sight… or so I thought.

No sooner had I arrived home, I hit the couch and passed out.  I awoke, about and hour and a half later; in a dark, quiet room, disoriented and still in pain.

I will spare you the boring, twisted details of the events that followed, because really it was just more of the same  (wake up, headache, lay down, fall asleep, wake up, headache, lay down, fall asleep, repeat), but just to be clear, the exhaustion and excruciating daily headaches have now returned each day for exactly 29 days!

There have been 4 trips to the GP;  who has sent me, not once, but twice to A&E, where I sat for more than a total of 15 hours. The first time I was told it was a migraine and given Paracetamol.  The second time, a week later, they took a bit more interest!

The exact diagnoses is still not 100% definitive, but “they”  (the powers that be) are leaning towards a diagnoses of something called Giant Cell Artiritis. (Not to be confused with arthritis, which is a disorder that affects joints.)  

“What the hell is GCA,” I hear you say?

My thoughts exactly.

Giant cell arteritis is defined as an auto-immune condition in which medium and large arteries, usually in the head and neck, become inflamed. (Remember when “inflammation” became a thing?)  It’s sometimes called “temporal arteritis,”  because the arteries around the temples are usually affected, creating the feeling that someone’s put your “head in a vice grip.”

{Ohhhh, what was that?   Oh, just my dreams of growing old gracefully, flying out the freakin window!}

Basically, inflammation of these blood vessels causes the main symptom, headache.  Swelling also causes narrowing of the blood vessels, which, in turn, results in diminished blood flow into the brain, eyes, ears, etc.  Sounds good so far! Count me in!

The ONLY treatment seems to be long term, “high dose” steroids; and unfortunately, if you decide not to treat, you risk almost certain blindness and a possible stroke.

Sooooo, not a lot of choices really.

This disease is not curable, but is treatable; it usually lasts between 2-5 years and the steroids are administered throughout; although they continually try to taper you down, to lower and lower dosages, until you’re eventually off.  That’s the goal anyway.

Do you know anything about steroids?  Not the kind the body builders use to get  pumped and buff,  but the legal and more common, corticosteroids?   I didn’t either, so let’s take a look at some of the more common side effects, shall we….

What was that about growing old gracefully, you ask?  Ahhhh, yes, “gliding into old age with neither a care nor a worry.”

It would seem, that is not going to be my path.

I have been on 60 mg of Prednisolone a day, for 9 days.  No bearded lady gig offers yet!

The headache has (for the most part) subsided).  The exhaustion and lethargy have not.  I am able to do a few chores around the house, take a shower, eat lunch and that’s pretty much me for the day.

The couch and I seem to have melded together in an indistinguishable mass of purple leather, arms, legs, pillows and blankets.

I will see a Rheumatologist (“Oh my God do I actually have a Rheumatologist now?”) on Tuesday and hopefully she will help me piece together the shards of shit that life seems to be hurling at me.

Sooo, I  shall leave you here, hanging on the edge of your seat…  or, more probably, “NOT.”   Perhaps you too are as bored and disinterested in all of this as I am.

For now… you need to know one thing.  Please know that if I have not returned a phone call, a Facebook Message, or an email;  if I’ve cancelled a planned dinner, lunch or coffee date…  if I have been rude or dismissive of you in any way… please know that it’s not you, it’s me.  I’m not purposely trying to be an jerk,  it’s just that there are circumstances far beyond my control and I must devote all my time and attention ME. 

Watch this space.



  1. Melissa, I’m so aware of this disease, that has been my diagnoses for my eye inflammation! They did discover my autoimmune gene is defective and I may have to be on the steroids the rest of my live to keep the inflammation at bay. Been on them for almost 7 months now, see new docs after the first of the year. I guess I’m lucky to have the disease affecting mostly my left eye, your all head pain must be terrible! Stay restful and calm, I know the steroids have horrible side effects but they are helping me function, sending love and hugs, Lois

    Liked by 1 person

  2. Hi Melissa, so sorry to hear about your new challenge in life. I have been doing a lot of research lately on the Keto diet, which is an anti inflammatory diet. Graeme, who is diabetic is off his insulin for the first time in years. Maybe it is worth a try? Hope you can sort it soon. ❤️❤️


  3. Melissa, the last time I had jury duty it was a malpractice case. A woman was suing her primary care doctor who she said had not diagnosed her temporal arteritis. I won’t bore you with any of the 7 or 8 days of medical testimony (not that I could remember it) but the woman went blind in one eye. Please do what you need to do to take care of yourself. P.S. The doctor was innocent.

    Liked by 1 person

  4. Oh my gosh…I just found this. You are amazing..a talent for writing and how you can hang on to the humor…you probably have already discovered how much company you have out here..i am very grateful to have found your blog and I send you so many heartfelt wishes for…good stuff. I am in the U.S. Writing this at 5:00 am cause i never can sleep. Ive been on the pred for 2 months. Started at 60 now at 50..scared but trying to focus on the moment.

    Liked by 1 person

    1. Hi Ann, Thank you… thank you so much! Happy you liked the blog, and thanks for your support! I live in the UK (but I’m American) it is 9:14 here.. and I’ve ben up since 6:00! I have been on Pred for 4 months now and never got to a dosage any lower than 45mg (and that was for like 4 days!). The highest I have been on was 80mg and that was SCARY!!! I wish you luck on your journey… It is amazingly difficult but at least we all know we are not alone! Keep in touch! Melissa


  5. Wow, this really resonated with me. I was the same as you in the way I thought of aging . I’ve had some sort of chronic fatigue problem for years but nothing that would show up in any tests. Then when I hit 70 the tiredness got worse and worse. Eventually just about a year ago a blood test showed raised ESR levels and the doctor diagnosed PMR. At tbe time it sounded simple – take Prednisolone, reduce the dose gradually and after 2 years it would be gone. I started on 15 and did feel a lot better for a while and started doing more but have struggled to come down. Got down to 11 eventually but ESR went back up so I’m now on 13. My daughter lives in the US and I’d think nothing of flying over there by myself to see her. Now I can’t envision doing it. I’m going on Tuesday with my husband and have booked wheelchair assistance but still dreading it. My parents at the same age were still going on camping holidays to France and walking in the hills. I just assumed I’d be the same. It’s so difficult not to get overpessimistic and start to think maybe I’ll find in the future that I can only visit my daughter if I can afford First class. I realky need to keep off the negative thinking

    Liked by 1 person

    1. Sorry I started a response but think it got deleted…. yes, the exhaustion and fatigue are horrible. Not to mention the side effects and withdrawal symptoms. I have never been lower than 45mg, but I “crashed and burned” at 45 and had to be increased to 89 to get the same relief I had gotten at 60mg! I am now at 50 and reduce down to 45 in 12 days. We’ll see what happens… I too have a daughter and grandsons I. The USA and wouldn’t think of traveling there alone! …and I’m only 63. It is hard not to get over pessimistic…. there are good days and there are bad days. I try to accept the. As they come? Best of luck to you. Xxxx. Ps thank you for reading my rants! I so appreciate it.


  6. I am so delighted to find these comments arriving. I have never even looked at a blog before finding this one and I dont know if I am missing some of the authors writing. I only have the initial one from Dec of last year. I wonder if someone canclue me in. I have joined closed groups on Facebook..about GCA, Prednisone, Occipital Neuralgia. They are invaluable because at least here in the US im finding it very hard to get information/treatment. The groups are all people who are in the same boat…people share openly, have support, and also pass on valuable information.

    Liked by 1 person

    1. Dear Anna, thank you so much! I’m so happy my rants resonate with you! My rants go back several year (although I was diagnosed with GCA/PMR in 11/17) if you read down to the end of a page, you should see a message that says’ ” Older Posts.” If you click that, you can go back in time…. Have you tried https://healthunlocked.com


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