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Coping with Giant Cell Arteritis

Posted , 13 users are following.

sandy08116
sandy08116

I was diagnosed GCA in October last year. CRP level was 76. Immediately put on high dosage prednisone and within weeks, CRP down to 4, currently on 7. Every test possible was conducted, cardiac, vascular, optic. Biopsy of minor temporal artery confirmed diagnosis which was first mis-diagnosed as TIA by locum at ([rivate) med centre. (Thank goodness I kicked and screamed or else I would have been happily chomping on statins and slowly going blind!) Fortunately, no eye damage and disorder localised to temporal area. Over time, headaches, auras, jaw claudication went. The paper-thin skin remains. Just one little bump - even a handshake - produces ruptured blood vessels, but more of a talking point than a worry. So do the dry, gritty eyes. Artificial tears clears that problem. Even tastebuds returning to normal which is the best news for a devout foodie and food photographer!

Now remains tapering off prednisone and other medications: Omeprazole to reduce acid in the stomach, low dosage aspirin as a blood thinner and Fosamax (once weekly) to maintain bone density. I was told to eat lots of fibre, eat fruit, drink milk. Any side-effect issues were not a problem and could be dealt with, said the doctors. The tonne of weight I've put on? The moon face? Just for the duration. Don't let it bother you. Blame everything on Prednisone. Of course all this was a challenge to tolerance: I hadn't seen a doctor in 20 or more years (thought they were there to kill you), never had any drugs other than the occasional paracetemol, fit and healthy, (I will be 75 in a couple of months' and play competitive petanque three times a week) and suddenly I was drowning in them! But I knew it was par for the course. Grin and bear it, it will all go away in time.

Both my GP and hospital rheumatologist are thrilled with my progress; they respect my desire to be kept informed and understand what is happening; case notes are shared between the three of us, they say attitude helps enormously.

And I have a mountain of respect for them - and our universal health system!

Cheers from Auckland, New Zealand. 

1 like, 179 replies

179 Replies

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  • sandy08116
    sandy08116

    Posted

    What the . . .! 

    It was Ian at petanque on Thursday who said 'you're hair has gone frizzy'. Yeah, thanks Ian, tell me about it! It goes up - like 'omigod, the mother-in-law has come to stay' hair reaction. Completely unmanageable after a lifetime of straight, cut-to-the-wood short hair! On Facebook, one of my friends said 'Prednisone made Mum's hair really curly at first. I was the only one brave enough to say it made her look like a bison'. 

    I said if Einstein could live with it, so can I. 

    Ian renamed me Sandy Austein. 

    Had anyone this aberration? 

    I blame it on Prednisone.

    • EileenH
      EileenH sandy08116

      Posted

      Lots of people have developed curls while on pred. I did while on Medrol but it has improved since stopping that and being on prednisone. The nape hair is still a bit frizzy - I put it down to that getting damp with sweating. It's been a tad warm here this year and more humid than usual which has always not been good for me. I had curly hair when I was younger but the bounce my wonderful hairdresser took advantage of when cutting disappeared with PMR. No option to go to him now - I have to take what I can get.

    • sandy08116
      sandy08116 EileenH

      Posted

      Many years ago my friends bullied me into having my hair permed. Bad move!! At the time, my family (husband and our two children) was in Fiji and I flew over to meet them at the airport. Walked right past them. They didn't recognise me, even when I stood in front of them! Another time I fancied going blonde - came out of the bathroom and the dogs barked at me. 

  • sandy08116
    sandy08116

    Posted

    Spilt timings. Prednisone, Omeprazole and coated aspirin in the morning, magnesium and vitamins in the evenings. And once a week - Fosamax. 
    • sandy08116
      sandy08116

      Posted

      Aaarrgh! No editing!! Split split split!!
  • sandy08116
    sandy08116

    Posted

    The first day of the month means a reduction of prednisone. From today, it is 6 x 1mg daily. And nasty cold is just about over. Another reason to rejoice - it's the first day of spring, although it is typical Auckland 'sunshine' - raining cats and dogs! 

    Not to worry. Got some really good films to watch, Just watched a Cannes winner, Iranian film 'The Salesman" and the excellent Ken Loach movie 'I, Daniel Blake'  - a gritty look at the social benefits system in Britain and the utter frustration of dealing with it. The abuse by 'tin pot Hitlers' who made the whole process of applying for social benefits and job seeking a nightmare used to be the culture here - in New Zealand - as well. Thankfully, after an outpouring of public outrage, it has been rooted out and is now far more friendly, caring and not into denying people their rights, just to reduce the number of people on benefits. 

    And for lunch? Sirloin steak (cooked in air fryer/oven) and salad. 

    • Michdonn
      Michdonn sandy08116

      Posted

      sandy08116, and day that is a Pretty Reduction Day, is almost a Holiday. Enjoy and congratulations! 🙂 Smiling for you!

    • EileenH
      EileenH sandy08116

      Posted

      We have snow forecast for the first day of autumn! To be fair, only down to 2600m but that affects roads not that far from here! And this weekend is horrible - just as we want to get the camper ready to move down to the valley for 7 weeks to to save commuting daily. But they are promising back to normal service on Monday...
    • Rimmy
      Rimmy EileenH

      Posted

      Hi Eileen

      Well first day of Spring here in the SW of Western Australia - and WE are having heavy hailstorms and rain and it is very (unseasonably) cold. The nearby Stirling Ranges are - we are told having 'snow flurries' as well !! Our small orchard is struggling to confirm that it IS Spring and most of the trees look very reluctant to start bursting any blossom. Anyway I hope you can soon get some decent enough conditions for your commuting - but with weather as crazy as it seems to be everywhere who knows !!

      All the best

      Rimmy

    • Michdonn
      Michdonn EileenH

      Posted

      Still way too warm here, it will be in the high 70s today. We have to wait till the end of November.
    • EileenH
      EileenH Michdonn

      Posted

      It'll be back to low 70s by Monday where we're going - infinitely preferable to the upper 80s it has been! Then those temps usually last until mid October - but the evenings can be chill once the sun disappears.

    • Michdonn
      Michdonn EileenH

      Posted

      EileenH, I thought you were getting cold weather. We do not start autumn till 22 of September, I was surprised that the start autumn is different. Yes, evenings are cool here also. In fact the difference between being in sunshine and the shade is very different, we are pretty far south.
    • EileenH
      EileenH Michdonn

      Posted

      Meteorological autumn starts September 1st. The autumn equinox is 22nd September. 

      Cold is relative - when the temp falls 10C from one day to the next it feels cold! The snow is up the mountains - but the valleys are still warm during the day and the evenings will be OK next week at low elevations.

    • sandy08116
      sandy08116 Rimmy

      Posted

      Hope there is no hail damage to the blossom. One of the side-effects of an early spring.

       

    • sandy08116
      sandy08116

      Posted

      My prune plum tree thought spring had come in May! (8 May) A few flowers appeared. I know we had a very mild winter but this was ridiculous! Fortunately, the rest of the buds thought it was a stupid idea. 
    • EileenH
      EileenH sandy08116

      Posted

      Our hail damage was to the almost-ready-to-harvest fruit - apples and grapes. Some farmers lost their entire crop this year after frost damage to the blossom and the thunderstorms now.
    • Rimmy
      Rimmy sandy08116

      Posted

      Thanks Sandy - I noticed the very tiniest of pink buds today following yesterday's storms - so HOPING they've 'missed' the worst of the hail. BUT as most would know this isn't great either as despite organic anti-fungicides we will likely get some disease .... fingers-crossed. After all neither we humans or trees and plants can avoid ALL disease (LOL)

      Best

      Rimmy

    • Michdonn
      Michdonn EileenH

      Posted

      Hi EileenH, back in the 70s I started designing and buildings passive solar houses. Back in the 20th century on the solar calendar, it was the 21 of the month. I guess we grew up using the solar calendar, never used the meteorological. Now here in the 21 century, it is the 22 probably change mid century. It breaks my heart to see how far back the US has fallen in developing solar energy! It is a shame!
    • sandy08116
      sandy08116 Michdonn

      Posted

      I thought solar energy initiatives in the States was flourishing, Michdonn. The news that coal mining was starting up again is disappointing - and the concept of 'clean coal' is sheer delusion and environmentally dangerous! We closed coal mines over time for more sustainable energy sources (we have lots of water!); the solar industry is small but growing. 

    • sandy08116
      sandy08116

      Posted

      Like to see more wind farms but it comes with public reaction: NOT IN MY BACK GARDEN!

      Sigh.

       

    • EileenH
      EileenH sandy08116

      Posted

      Strange isn't it - I think they are absolutely beautiful! I fell in love with them when I first saw them in the Netherlands. I have a PMR friend who does literally have one in her back garden!

    • Michdonn
      Michdonn sandy08116

      Posted

      No, sandy08116 back in the 70s we had a leg up on the rest of the world, Carter installed solar panels on the White House, Reagan removed them and we have been falling behind since. China leads the world now with Germany following. My little community has a solar farm, but this is a community of scientist so this town is not reality, we live in our own special bubble. Smiling 🙂

    • Michdonn
      Michdonn sandy08116

      Posted

      There are number of wind farm in Texas, but could be ten times more, hardly any in New Mexico and Colorado where there could be many. We are talking about land that is only used for grazing, poor land lack water. There has been off shore installations, but few. Maybe some day. 🙂 Smiling

    • Rimmy
      Rimmy EileenH

      Posted

      Totally agree Eileen

       in Albany (SouthWestAust) we have the most beautiful wind farm which stretches along a magnificent coastline of wild flowering native plants - quite breathtaking - and supplies a large % of power for the around 30,000 local inhabitants. It is a main 'tourist' attraction and deserves all the accolades it gets - as practical 'magic' !!

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