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Advice about travel and GCA

Posted , 9 users are following.

Kittylitter
Kittylitter

Hello lovely forum people. Firstly, I would like to thank everyone posting here for their generosity and time in responding to those of us that are starting on our PMR journey. I am 7 weeks into my diagnosis and taking pred, and have found this forum (and Kate Gilbert's book) invaluable. My question relates to GCA- can it develop at anytime? I am worried that it can suddenly 'hit' and cause irreversible damage, especially if I am away from home on holiday. I have just had to postpone a long haul trip on the advice of my GP and rheumatologist because I have pushed myself too much and am now exhausted. I seem to have received PMR as a 50th birthday present and am having some difficulties changing my busy work and social schedule to accommodate the physical changes. 

I started on 15mg of pred and , like so many before me, it seems, the pain and stiffness relief was almost immediate. Fabulous. However, although I paid lip service to making changes in my lifestyle (I gave up my gym membership), I now appreciate that what I really did was go back to normal. No time off work, two 4 hour plus journeys to (boozy!) 50th birthday parties and a camping and walking holiday, in the space of 1 month, and I hit the deck. My GP was concerned that I was displaying GCA symptoms and increased my pred to 40mg.  I saw a rheumatologist within 36 hours, which is amazing. Fortunately, my ESR is normal and the headaches and jaw tenderness are fading. I did not have any visual impairment. I'm now on 20mg of pred and looking to start reducing to 15mg in a couple of weeks. I'm using the lost holiday time to rest. 

I feel that I have learnt a big lesson and am very grateful that I have so much support. But I realise that I am now feeling anxious about GCA. I'm not usually am anxious person and have been very fortunate to have enjoyed good health throughout my life. I think that it's the unpredictability that worries me. So, does the likelihood of developing GCA decrease as time goes on? Or should I just be alert to symptoms and hopefuly settle into this as I am with PMR? 

Its great  to be able to get all this off my chest, family and friends have been brilliant but it's a big adjustment for them. Particularly as I don't look ill, in fact, just as Kate wrote in her book, lots of people, have been telling me how well I look! 

 

 

0 likes, 13 replies

13 Replies

  • iellen32
    iellen32 Kittylitter

    Posted

    Oh dear Kitty I relate to all your concerns regarding the unknown, what may happen suddenly.

    There are three years i was diagnosed of GCA and I was told by my rheumy that blindness could occur at any given time. As you my first thought was the concern of such a nightmare could occur the moment I was on the road going somewhere!!

    But my answer to him was that was firm on my thoughts , I was thinking positive and that obras able to see myself with the eyes of my mind based on the word : "The way you believe it will be done into you"

    I see myself as perfect and repeat several times during the day - I am been recreated, I am perfect, I whole, I am in peace, i do not fear anything!!

    Be attemptive towards your symptoms and go to see your eye doctor if some change is noticed .

    In same time keep firm, positive and always with your hope intact and alive.

    Wish all keeps well with you.

    🌺

    • Kittylitter
      Kittylitter iellen32

      Posted

      Thank you for your kind words and blessings. I am very grateful for all the kindness and support I receive. My GP has been wonderful and happy to see me as the expert in this. I am becoming an expert in my own condition thanks to all the information I find on the forum. 

      Thanks again for taking time to respond Kx

  • ptolemy
    ptolemy Kittylitter

    Posted

    The fact you now know about GCA is the important thing and that with a high steroid dose you can stop blindness. My optometrist explained the symptoms to me and said go to a&e if I got the symptoms. It is the people who do not know about GCA who are most at risk. I think all of us with PMR naturally worry about getting GCA too, the good thing is that we are aware though.
    • Kittylitter
      Kittylitter ptolemy

      Posted

      Thank you, you are right, knowing about GCA is the important thing and I now know what to do should I have any kind of symptoms. I also know that if I am planning a big trip that will be busy, I need to pace myself and be prepared to go slow. Thanks for the reassurance and for taking time to reply. 
  • Susanne_M_UK
    Susanne_M_UK Kittylitter

    Posted

    Hi, sorry to hear you have developed PMR.

    I had PMR for about 4 years and thought it was almost at an end when I developed GCA about 18 months ago.BUT please be aware that this is very unusual and you should not think this is the norm, far from it.

    Some of us carry a spare pack of pred, just in case of a bad flare. You also know that you need to get to A & E if you experience visual disturbance/severe temple pain.

    Please try not to worry too much about GCA at the moment and concentrate on getting rest. Stress is not good with these conditions! Easier said than done, I know. So many unanswered questions and worries at the start of this journey.

    Keep talking to us here, you will get lots of support and good advice from people who have been there.

    • Kittylitter
      Kittylitter Susanne_M_UK

      Posted

      Hello Susanne

      sorry to hear that you developed GCA when you were so near the end of PMR. I hope you are managing your condition well.  Thanks for your support and it does help to know that everyone feels worried at the beginning of this journey. I do know what to do if symptoms reoccur and am armed with extra steroids just in case! 

  • snapperblue
    snapperblue Kittylitter

    Posted

    Shortly after being diagnosed with PMR, I had some symptoms that suggested GCA.  I went on short-term high pred, had a biopsy, visited my ey doctor- no confirmation of GCA, but (as always) no way to rule it out.

    I was going on a trip to the other side of the US. So I reviewed with my doctor the appropriate response to various symptoms. So for each symptom (like  partial or total loss of vision, sore temples, atypical (for me) headache, jaw pain on chewing, etc) he told me what I should do (go to the ER, call his office, increase oral pred dose until I could have it checked, etc.) 

    I also wrote out my recent history, brought test results, etc.  If I had it to do again, I'd ask the doctor for a note explaining the possibility of GCA , possible need for an IMMEDIATE steroid injection and the consequences of delaying this.  I would not want to watch time pass (as the risk of blindness increased) while a doctor who did not know the disorder fumbled around trying to figure it out or denied anything was wrong.  

    I am an admitted chicken about GCA.  I decided that I'd rather be laughed at for overreacting to nothing than sit around blind for the rest of my life because I did not speak up!  

    Of course you have been anxious!  There is a place for anxiety in life and facing GCA is one of those times!!  But  if you know the possibilities and have a plan, you'll have it under control.

    Most of us end up doing as you suggest, being "alert to the symptoms" and otherwise carrying on as usual.  

     

    • Kittylitter
      Kittylitter snapperblue

      Posted

      Hello, thank you for the advice, I think that that is an excellent idea, to feel that I have some control will help to eliminate the anxiety. I'm sure that this will all feel 'normal' agiain soon. My trip was from the UK to the USA and I now need to work out the implications for medical insurance. Knowing that whatever happens I know how to manage it, really helps. Best wishes to you. 
    • iellen32
      iellen32 snapperblue

      Posted

      Hi Snapperblue,

      You gave me a comfortablr feeling - of how we learned through this Forum a reasonable behavior as we face the symptoms of our tricky health condition whatever PMR, GCA or both together.

      The importance of being alert to our symptoms, in same time avoiding stress, fears or entertaining wrong thoughts regarding the outcome.

      Yes, we got it right - we got the point to be wise ' 'carrying on as usual ' as you say .

      This is so great !

      🌺

  • FlipDover_Aust
    FlipDover_Aust Kittylitter

    Posted

    Happy birthday Kitty! What a great birthday present you have received!. I got mine for my 51st birthday lol

    I will tell you that adjusting to life at a MUCH slower pace is one of the hardest things I've had to do. I was doing triathlons, working full time, renovating, burying my mother (after she died lol), being a mum, then a new Nana... then BAM!

    Sounds like you may have been lucky with the GCA - picked it up early and thwarted it's evil plan..... just stick to the pred, watch your symptoms and see how it goes, there's not much else you can do. Time will lessen your stress.

     

    • Kittylitter
      Kittylitter FlipDover_Aust

      Posted

      Thank you. Blimey, life was busy for you. I know what you mean about the slowing down. I think that taking the initial dose of steroids give me a false sense of security, we live and learn. So I am learning to slow down and listen to my body and learning to be informed and prepared rather than anxious and worried. Good luck with your busy life and thanks for your time. 

       

    • marthatidbit
      marthatidbit FlipDover_Aust

      Posted

      2 months into this PMR/GCA diagnosis, and I am STRUGGLING with slowing down.  It is so helpful to hear that others have had the same experience.  No triathalons here, but busy, active full time job (normally walk about 7 miles throughout my work day), 6 adult children, 4 grandchildren, crafter.... and kayaking season is upon us, and I'm afraid I won't be able to paddle.... 

      ​I missed work for the 1st time yesterday.  I NEVER take a sick day.  I think I picked up a tummy bug that exacerbated everything.  My teeth, hands, knees and elbows were even hurthing. I work in Early Childhood Education, and normaly am immune to everything.  Thinking the pred has lowered my immune system.

      ​Anyway, it got my attention about how much energy, strength, etc.I actually have, and that I have to be serious about slowing down.  Ouch. Must learn how many spoons I have and what uses them up!

      ​Thank you for sharing!

       

    • FlipDover_Aust
      FlipDover_Aust Kittylitter

      Posted

      The biggest adjustment was coming to terms with the idea that I was sick and not going to get better by taking a pill and resting for a week or two.

      That said, 17 months in and 4 months on MTX and I'm feel almost normal again - other than zero fitness and 20kg heavier!

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