I recently responded to "Toolmart" who complained of stiffness at 2 mgs of pred. I said "We could be twins!" as the symptoms he described were almost identical to mine.
Well, my brother in North Wales has just phoned and disclosed that he is in fact "Toolmart".
I had absolutely no idea! He is coming to visit me here in Tasmania next month and is naturally both excited and apprehensive about how his PMR will stand up to that horrendous journey. We both agreed that he would be well advised to up the pred in anticipation of the journey. It is stressful, especially travelling alone and we all know what stress does to PMR....
It would be interesting to know if any studies have been done on family members with PMR and whether they follow similar trajectories in the course of their disease?
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Louisa1840
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He might like read this - Toolmart and my first trip to NZ was whilst I still had GCA and in 7mg… so he’ll be fine. Just returned form my recent trip.and even without GCA I still get Special Assistance - it’s a must on long haul…
I’ve just travelled from the UK to New Zealand and followed your advice DorsetLady and it worked a treat! Thank you!
Adding a one off half extra dose (4mg) half way through the journey made all the difference. I have not suffered any pain or fatigue one bit and in fact I’ve had hardly any jet lag. We landed Sunday evening (just gone) in Sydney for 4 nights before moving onto NZ. I even climbed the Sydney Harbour Bridge on Wednesday evening and today swam in a 60m salt water pool in Auckland. All this so far and you’d never know I have PMR (currently on 8mg) 😊 I’m making sure get plenty of rest too.
are you taking enough Pred? Seriously I am living my life like there’s nothing wrong, I’m on 8mg and feel great, no pain, swelling or fatigue. You shouldn’t be feeling like that if your dose is right? X
I have tried upping my dose by a fair amount and I can't✌️ say it made any difference to the stiffness. I am now on cannabinoids (oil and vaping the dried flowers). No difference to stiffness but I sleep like a log so I'm taking that! ✌️
That is quite extraordinary; what an incredible experience.
As a matter of course during my eight years on prednisolone for PMR, I always took an extra 2mg whenever I was flying- just for the day ( or maybe two days). There is a lot of stress round the whole airport experience and flying. I reverted to my previous dose once the flight was over.
Far more important that more pred is booking airport assistance - don't do anything you can find someone else to do for you!! They worry about tight connections, gate changes, where to go for a rebooking when it goes proper pear-shaped and there is always somewhere to sit with a priority card!
I don't know about siblings but four of five first cousins in one family and I (only child) share a range of autoimmune conditions. The exception in that family who doesn't have an autoimmune condition is adopted!
Special assistance should be bookable at the airport... with PMR I always used this for transatlantic travel, don't know for sure about transfer elp at onwards connections but travel agent or airline should confirm. Re. Pred, I was travelling the other way round the globe but i was advised to take extra, half of normal, dose in the evening of flight day, to put it on till morning dose time... which was actually 5 hours later than normal.
With airport assistance, you are met at the plane on landing and taken to the next place you need to be, whether that is immigration and then baggage collection or taken through the process for transferring to your connecting flight. You need to confirm it at check-in but it is best to request it at the time of booking, in the same way you would request dietary needs for meals on board. I also find it a good idea to tell the flight crew - the pilot then confirms with the destination airport though usually the crew do already know - but mistakes happen!
Do you know, I think if I did that plus perhaps booked Business Class, I could manage to survive the journey and do a return visit to my two brothers who remain in U.K!
BC [provided you can afford it] is a must when travelling with an illness.
Just returned from my third trip to NZ [needed to save up] - first one with GCA, second/third with OA. There is no way I could do cattle class… in fact in Singapore on the way out, the Special Assistance didn’t work as it should [most unusual] - and I really struggled getting on to connecting flight. I told the cabin crew on that flight and they were very apologetic- and submitted a report.
Did a couple of domestic flights whilst out there and didn’t bother with SA, but in hindsight I probably should have… it really does make a difference.
Totally agree! We went business class to (and will return BC) NZ and it’s a world of difference with the ability to sleep. I am lucky and thankful to have the funds.
My cousins are off to Japan - they are very well off but C told me that they saved a LOT by not flying the Japan leg out of Heathrow. By booking BC from a European airport (Rome I think) they saved a small fortune! It introduces another change but with airport assistance that shouldn't be a problem.
Interesting! When I started to experience the symptoms of PMR in Nov 23, my sister who lives on the other side of the country, started to experience the same symptoms as me. We were diagnosed about the same time. We are both on the same treatment. My sister is 8 years younger than me.
My brother , or Toolmart as he shall be known for evermore is 6 years younger then me and was diagnosed with PMR six months before me. We live on opposite sides of the world so we can't claim any environmental influence.
Ahh, but it may well stem back to when you were children and did live in same environment - that plus genetics is always quoted as a possible cause for PMR.
I have a similar story. Three years ago I discovered a half sister (DNA testing). I had no idea she existed but when we first met she revealed she had suffered from PMR. I too had PMR. We both had recovered in a very short time (about one year) following steroid treatment suggesting it was a particularly mild but similar form we had.
hehe! That’s hilarious except of course I’m sorry hat your brother has PMR! Wonderful though you get to compare notes in person! May he have an uneventful journey and enjoy beautiful Tassie and your company. X
My Dad had PMR. I have PMR. He never managed to get off Pred. After 7 years I'm still trying!. My Dad died of a heart attack , my brother had one too. My theory is; although not passed on through genes, we have have enough genetic similarity to share a predisposition to the same illnesses/auto-immune weakness. My exe's mother died of bowel cancer, he suffered for years with Crohn's. I realise this is a tiny sample and not statistically relevant but it makes you think. Chose your relatives carefully !!
Fancy that....finding out that toolbox was your brother. I bet you got a surprise. My father had polymyalgia rheumatica. He got it in his 70s and was never successful coming off the prednisolone. The Doctor finally said that he should stay on 5mgs prednisolone permanently. He died when he was 90 years of age, of Congestive Heart Failure. He lived far longer than both of his parents. I have a brother who has PMR. Occasionally, he has managed to come off the prednisolone, but the PMR has returned. I have PMR and also GCA (my father didn't have GCA and my brother doesn't have GCA). I have tried several times to come off the prednisolone, but without success. I vaguely remember my father telling me about his father (my Grandad, who had died before I was born) and how this Grandad found it difficult to get out of bed because he was so stiff. I've often wondered if he had PMR too. I don't know.
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