As some of you may have read in my previous posts, I have PMR and GCA and am currently on 35mg Pred. Back in February - before this illness was diagnosed - I was invited to stay with friends for a holiday in Florida during October/November this year. This was to be my very first visit to America so I was so excited but, with my diagnosis, I really felt that I wouldn't be able to go. Anyway, I just wanted to let you all know that, following the excellent advice given by the very knowledgeable members on this forum, I was actually able to go and had a great holiday. I obviously made sure that my doctor was happy for me to travel and also that my travel insurance company were prepared to cover this trip. I took on board all the advice about pacing myself, when and how to cope with the time changes whilst taking my Pred and also making sure I arranged assistance at each airport. For anybody thinking of doing a similar trip, I would say, don't be worried about doing it. I travelled on my own but, with all the necessary preparations made, I had no problems and had a truly wonderful time. I have now been home three days and have even coped very well with the jet lag - all I need now is some of the lovely Florida sunshine ☀️
I hope that this has helped anyone considering travelling - just make sure you do all your homework first and take advice from this forum!!
Jan
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Janann25
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Thank you. Of course, any future adventures will be dependent oo the dreaded PMR/GCA but, given the opportunity - and enough funds! - I intend to do as many as I can while I can. 😉
Was very pleased to hear that you had a great time. Thanks to all I learned here I have taken my PMR/GCA to Australia, America, Iceland and Ireland during the last two years with no problems but as Jan says you must do your homework first and take extra meds just in case. Sunshine is definitely lacking here! 😎
Hi jan glad to hear you coped well on your travels.I too am doing a big trip in 3 weeks time. Oz for 3 months then a cruise home. So 5 months in total. My ins co will not cover me for my Pmr and Gca or anything that relates from it??? In oz I'll be ok because if the recipricoal agreement but apprehensive on the cruise its a chance I have to take. My gp thinks its ok. I was diagnosed in Aug and on 60mg now on 20mg and hope to taper a bit more before we travel but your blog has given me hope to go and enjoy this adventure. Hope you continue to improve.
Do so hope all goes well for you as well. I don't think my own insurance would have covered me for such a long time - my holiday was only three weeks. I don't know whether this is of any help to you but, when my late husband was having problems with travel insurance (he had multiple health issues) I contacted The British Insurance Brokers Association and we were able to get cover for the trip. It wasn't cheap but, having already experienced the cost of medical care whilst on cruise ships, it was worth it!!
Good for you!! You deserve this and more. We should have a resort for PMR members where we are pampered and treated like royalty..I'm in WI a that sounds real good..Florida sun
Yes, I was definitely well looked after - and I had a big advantage in that my friend is a doctor at the man Orlando hospital and she had taken the time to research this illness before my visit. And I think she was a real expert by the time she'd spent three weeks with me!!
Well done! It gives you such a feeling achievement doesn’t it? I’m off in 2 weeks, this time without GCA, but I shall still be getting Assistance at the airports.
Yes, I really feel good about it. Just didn't like the coming back to an empty house 😒 Anyway, I shall continue pacing myself and listening to my body with the tapering - regardless of what the rheumatologist wants!!! Hopefully I'll then be able to consider another holiday next year.
So glad holiday was successful nothing like a bit of sun to make you feel better. Yes the empty house syndrome is difficult I stand in the hall and look around me before dragging case upstairs, but like everything the moment passes and just dwell on the lovely Florida holiday. Perkey x
Oh so pleased that this worked beautifully for you . The planning and self care just enables a normal or in your case more special than normal life experience! I am happy for and encouraged by you.
Thank you so much for your reply - I was so nervous before I left and almost "chickened out" but so pleased I didn't. As soon as my health - and the budget - settles down, I'll definitely be off again. 👍
Thank you for the sharing your successful trip. I've felt comfortable enough to plan a trip south over the winter college break my son has. Last year we did it making arrangements on my cellphone as we went. Looking back PMR was upon me but my diagnosis with GCA & PMR waited until late February.
Now this summer with the taper the Rheum wanted, symptoms returned, sed rate increased, & I had to go back up. So, when it was "under control" my taper was 1 mg every 10 days. Today I decrease to 20 mg /day. I see him this week & he talked about 0.5 decrease at a time every 10 days. I am going to tell him that when we go south this year for my son's winter break, I'm not decreasing at all.
So pleased you thought it was helpful - we all of us need to be encouraged to attempt something new, especially with this sometimes debilitating illness.
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