There's comfort in sharing our experiences.

Hello Brenda

It's so good to welcome you to this forum but not so good to hear of yet another sufferer of this painful, complex and frustrating illness.

Like you, I also suffer from both PMR and GCA (PMR for 4+ years and GCA 3+ years) and I commenced on 40mgs Prednisolone so I do so know exactly what you have been going through. Also like you I managed to get down to 3mgs on 2 occasions over the years only to have flare-ups followed by the consequent dosage increases and another eternity trying to get back down again. I have now managed to get back down to 2mgs but have to say I was more comfortable on 4 and then 3; however, I am toughing this one out at the moment and thought I was in for a full blown flare up last week when for 2 days I had the pain back in most of the usual places with terrible stiffness. I'm glad to say that today I feel almost back to normal (that's PMR normal!!!).

I have now put this latest flare up down to going off my usual anti-inflammatory diet over the Easter few days and eating way too much chocolate. I have since read that the adrenal glands (which are somewhat suppressed when you take long-term steroids) are further stressed by food additives, sugar, alcohol, caffeine, and that chemical additives, sugar, refined carbs and hydrogenated oil are to be avoided as much as possible. The article stated that we have to have adequate protein, plenty of fresh vegetables and drink lots of water. I'm therefore convinced following my latest experience that the adrenal glands can't cope with these excesses (just as they can't cope with stress) whilst already being suppressed by the steroids.

I know exactly what you mean about friends finding it hard to understand our illness.......Heaven knows we have enough trouble understanding it ourselves.

However, it sounds as though you are following a really sensible routine and listening to your body and not fighting it on the bad days - it seems to be the one illness that just won't let you fight it....it just bites back. Do hope the urticaria isn't driving you mad - another side effect of the steroids!

Yes, I do wish you luck attempting a holiday in France shortly and you may have read that several people on the forum do manage their regular holidays to Europe. I think it's just a case of being aware of not pushing it too much and have some restful days thrown in.

Like you, we are all so grateful that this site exists and from which we have drawn such incredible comfort and reassurance within our PMR family!

Better luck on reducing this time and do keep in touch.

MrsO

Hello there and glad you have found this site

I have had PMR twice but luckily (so Far ) not GCA I wish the first time around (2002) I had had this site to help me but I was very lucky then that I was off steroids and well again in 2 years with no blips I think that was down to my DR believing in me although I had low blood results

This time around I have had more of a roller coaster down to 4mg after 14mths then up to 15mg after 15mths !!!! This has been quite a shock for me after getting through the first bout easily once I had the steroids Mentally it was hard especially in all the cold snowy conditions we had and took me a while to come to terms with this I am so glad spring is here at last

I have found great comfort on this site and so much information Different opinions on steroids reduction and lots of information about adrenal glands ( didnt even know where they were 12mths ago or what they did !

Re your holiday is it worth having a chat with your DR about a temp increase to cover the travelling ?? The other thing it will unfortunately be possibly hard to avoid in France is all that lovely bread !! I have been saying I was going to tackle my weight increase for a few months now but not getting anywhere YET !!

Best wishes to you and hope you continue to improve Mrs G

Welcome, Brenda, Some people on this site manage travel easily but I was dreading our first trip to see my daughter in Ireland last year, the journey does finish up taking about 12 hours. Yes, I'm with Mrs G. certainly don't think of reducing your steroids at that point and maybe possibly increasing. Also try not to be stuck in one position for too long, get up and move around whether on a plane or train. Get one of those blowup neck cushions if your neck is a problem. Try and have an easy day the day before you travel and the day after. I did find it a bit more than I wanted the first time we went, but the second time, 6 months later it was a lot easier. BUT it was worth it for the mental boost - I certainly wouldn't have been helped by thinking I was never going to travel again! Oh, another thing I personally didn't find those pull along cases much help - pulling behind didn't help my shoulders, but pushing in front was better. Experiment.

All the best for your break anyway! Green granny

Hi Brenda,

Welcome to this seat of learning! I have had so much good advice, comfort and encouragement since finding this site. I travel a lot as I have a home in Spain and we go several times a year. I've learnt to get all the packing and preparations done two days before I travel and have a really quiet, relaxed day leading up to my journey. I try very hard not to do silly times if I'm flying (although the difference in cost does sometimes make me think twice!) and I never reduce the Prednisolone the week before, even if I'm scheduled to do so. I don't find the actual travel any problem at all but I am usually pretty tired the next day, so once again, where possible I take it easy. I find the change of scenery, routine and thought of lots of lovely meals out boosts me no-end! I'm sure you'll have a wonderful time - just make sure you take the correct medication! I arrived in Spain with a whole bunch of non-enteric Prednisolone (prescribed early on when I boldly announced that 'I never have problems with my stomach' but promptly found that I did!) so had to go and see my lovely Spanish chemist who gave me Omeprazole. Have a wonderful time, travel is so good for the soul. I'm sure you'll be fine. Bon Vogage 8) .

Kind regards

Lizzie Ellen

Hi all!

Green Granny - did you know that a link has been established between pulling cases/shopping trolleys and things and shoulder problems? Always push!!! Not that it's that easy - go for a case with bigger wheels!

Brenda - when travelling bear in mind: never stand if you can sit, never sit if you can lie! And don't be all noble and say \"I can manage a bit more!\" or rush to do something. How are you intending to travel? Whilst I know it's easy for me to say as I've been driving all over Europe for the last 28 years - I find travelling with the car MUCH less challenging than flying when the PMR is in the equation. I can stop when I want to and get fresh air and move around a bit. If I wake up feeling like death it's a lot easier to adjust the plan for the day and there is far less walking and heaving cases about. And you always have somewhere to sit if there is a delay (not like Heathrow!). Aim for a relaxed holiday - no engraved in stone plans for museums, art galleries or the like! Leave space to be able to go with the flow - as the PMR demands. But from your post you already know that.

We have a towing caravan and I find that great - if I don't want to get dressed for dinner (or at all!), I don't! Eat out or picnic, bottle of wine in the frig. And even my husband can grill a piece of steak under supervision! And French supermarkets have superb prepared foods.

Good luck planning and tell us all how you get on!

EileenH

I do so agree with EileenH’s sentiments re-travelling by car and the advantages of a towing caravan. Have had PMR since last July and didn’t dare risk booking our annual trip in January to New Zealand and Australia to see relatives as I was still rather new to handling the condition and wasn’t at all sure about crossing so many time zones over a short period. Still meaning to research what effect, if any, a difference of 13h time zone difference in NZ would make – how would my sickly adrenal glands adjust to mornings being half a day out of sync and how would I manage the timing of my pred :? :?:

Anyway, after feeling deprived and depressed about missing out on the wonderful summer sun in NZ/AU, we have just got our motor home out for the season and after a 450 mile/10hour (with stops) journey – managed by my wonderful husband driving for 3 hours, me for 2 hours and then him for the remaining 3 hours or so, with me strapped on a rear passenger seat as horizontal as the belt would allow for several hours, we arrived here in the Cairngorm mountains in the highlands of Scotland for a week’s welcome holiday. :D :D

A motor home (or caravan) is an ideal way of travelling for us PMR sufferers as you can stop and start, lie down etc as often as needed, and although tired, at the end of a long day, not too much pay back the next day. Also, as Eileen H says, you can decide from day to day, minute to minute what to do, whether to stay in or go out, eat in or out, etc – very convenient!

In fact, today, we have been to the top stage of the Cairngorm mountain on the funicular railway and had a wonderful day watching the skiers and walking a considerable distance in the snow fields (not exactly the Tyrol EileenH) but on a brilliant blue and sunny day like today (unusual for the often stormy Cairngorm plateau) you could imagine you were in the Alps. Tired tonight, but will rest well tomorrow and hopefully do it all again on Thursday!

So pleased I listened to my body and resisted the temptation to do the scheduled drop from 9mg – 8mg last month. Was getting down nicely in 1mg per 2 month stages but 9mg seems to be a sticking point for me. Blood tests up a little after 2 months on 9mg, and pain in neck/shoulders/forearms quite bad, but now after 3 weeks sticking on 9mg, think things are improving a little.

So very grateful for the camaraderie of this site and kind regards to you all.

Janet (Jayeeh)

Janet - your motor home holiday and your description of it sounds very enticing - have a wonderful remainder of holiday......but please don't bring any snow back here :ski: !!!

MrsO

Im in agreement with making a holiday as stress free as possible !!

It is the airport queueing which makes it so tiring I now try to get flights at reasonable hours We are off to Spain at the end of the month and have an early flight so we are staying in an Airport Hotel overnight

On our recent trip to Prague we had a really good deal on short term parking for 4 days so only had to walk into the terminal at Stansted and good time of day flights luckily no delays and I coped with it really well Also no laid in stone plans ( we have been there before ) and I walked an awful lot more than I thought I would and no ill effects

Car and caravan is great ( we have had trouble booking sites this year!! )but I dont think I would want to entertain too much difference in time zones as taking my steroids at breakfast time is what I am used to and I certainly wouldnt want to rock the boat at present

You sound as though you understand your body Brenda and France is wonderful isnt it My Husband and I were remminicing about past trips yesterday as his brother is off in his motorhome soon and we were helping with planning We always used to just move across the map an inch or 2 to head south and so we always saw something different No real planning but always something interesting to see

The thing I used to worry about leaving at home at one time was my contact lenses now my steroids take precedence over everything !!