Two-fold help please

Hi wise ones!

I need some advice please. I was diagnosed with PMR back in March and had successfully reduced from 20-10mg, at 2.5 intervals with several weeks in between. I then tried 9mg but experienced severe pain in my upper arms so, for the last few weeks, have gone back up to 10mg. I am in as much pain as ever. Should I 'blitz' it with 15mg for a few days then drop again? Any suggestions.

Second question...I am due to fly to Cyprus on holiday in 2 weeks. The flights were booked before I was diagnosed and, having just checked, they are both very early in the morning, after a drive. I will be at my absolute worst at the time I have to get up and worry about showering and dressing. Should I set the alarm to take my meds literally in the middle of the night? I need to get up at about 4 anyway.

Thanks everyone.

13 Replies

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  • I don't compromise - I take what I need, especially if I'm going on holiday. 15mg and next time reduce 1mg at a time - flares can take a while to appear so you really don't know what was the wrong step.

    I also don't compromise on holidays: if the flight is silly o'clock I splash out on a hotel close to the airport the night before. I also wouldn't worry about a shower - you won't smell. I get up and go - good excuse to play in the "Duty Free" rip-off-shop.

    A question though - have you had a new batch of pred? I was fine on a given dose until I got new tablets which were loose, not in blister packs. The 5mg ones simply didn't work, the 2.5mg ones were OK but of course didn't last long. The chemist claimed no-one else had had a problem. I think it was a different manufacturer with a different filler in the tablet that didn't suit me.

  • Thank you for the advice. I will up my dose...and reduce more slowly next time. No probs that I've actually noticed with the tablets.

  • Just additional to the tapering, yes, 1 mg between 15 and 10 is a good idea, in fact this is what my doctor told me to do. Therefore it was very easy to catch that I needed to go back to 10 when I experienced return of symptoms at 9. If you weren't going on holiday I'd have no hesitation in suggesting you go back to 12.5 as I assume this where you last felt fine? It's your call if you think you need the full 15. You may not. I've been away a few times since starting pred, not over more than 1 hour time difference, and have been fine. Even continued my tapering the first time! And making your arrival at the airport as painless as possible is an excellent suggestion. When flying out of Heathrow to go home across the Atlantic for several trips now (pre-pred) I've foregone that last night with the relatives and spent it in a hotel near Paddington so it's a quick hop onto the Heathrow Express.

    I hope you have a lovely time. 🌞🌞🌞

  • Thank you. I travel back and forth to France often but by ferry. I have also managed a reduction whilst there but this whole trip is something different altogether. Wish I wasn't going TBH. It's only 5 full days . Must be positive and not whinge! I do have a friend who lives near Stansted though so may see if I can stay there the night before. Thanks again.

  • We're off to Malta about the same time - so I'm hoping it stays warm and sunny. You can always get out of the wind ;-)

  • Others had advised so I won’t add, other than get yourself Assistance at the airport. No cost, just contact airline beforehand - look at their website or Stanstead’s - now will be fine - and then report to Special Assistance desk once you get to airport. It takes all the hassle out of queueing/security/customs etc and you feel much more relaxed.

    Enjoy!

  • Thank you Dorset Lady. My legs are generally ok (better than my arms anyway!) but who knows what I may be like if I do have to get up mega-early so I will heed your usual sound advice.

  • It's the combination of everything, walking, standing, trying to hurry - and it was the time I might have to stand waiting at immigration that swung it for me to ask for assistance. As Traceyanne says - it's a big plus at security and immigration!

  • Hi I flew to Cyprus in the summer with the silly o'clock flight. We live very close to the airport so meant we got up at 4.15am and I was the last to get up 😀. Book assistance at the airport. They will get you through passport control extra a lot quicker, especially on the way home it was great. Forget showering it won't matter for one day. My rheumy told me to adjust my steroids as I felt I needed to as it was my body and I knew how it felt.

    Have a lovely holiday and a good rest.

  • Thank you everyone for your sound advice.

  • I would say to increase your meds, it won't hurt you at all. I was diagnosed over two years ago and had really hoped to be in remission by now! I am down to 5 mg now and don't seem to ever be able to get lower. My rheumatologist told me that at my age, 60, he would be perfectly fine with me being on 5 mg the rest of my life. You will probably find you will go up and down several times with your dosage. As far as getting up early to take your meds, I find that no matter what I do I still have to have that 'thawing out' time (as I call it). I just know that I can't hurry to get up and go. You may have to stay up and not go back to sleep if you want to get moving. Good luck and have fun!

  • Think you may have reduced too quickly. I've had pmr for 18 months and now on 5mg about to drop to 4. Could try paracetamol for the pain but do not take anti inflamatories as they do not mix. Best of luck and have good holiday - the sun will do you good.

  • Delighted to read your post, you are at exactly the same place as I am, thought it was just a stiff neck but has gradually developed into pain and stiffness across my shoulders and down my arms. I have increased from 81/2mgs to 10mgs and am feeling a bit better although not as good as I have been. I think I reduced too quickly from 10!!! A lesson learned, the aunties are always right. Enjoy your holiday.

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