HELP

[Noosat]

I need some advice. I have tapered to 4mg of prednisone for almost 3 weeks. In a day or two I am going to the gulf coast for a week. My problem is that for the last few days my legs have been very heavy and achy and as I want to do some walking on the beach should I go up on medication? If so, how much. I thik I have also had a touch of "something" go around.

[DorsetLady PMRGCAuk volunteer]

Are you sure it’s PMR?

If it’s just something doing the rounds you might find an ordinary painkiller helps - so worth a try for a couple of days to see if that makes any difference.

If that doesn’t help, then it may well be PMR so an extra mg or two should address it, but don’t automatically assume it’s PMR and up the Pred “just in case”.

Try and find out first if you actually need to increase - if you don’t need to then don’t - it just extends the time on Pred. Try other options first, but take a few extra with you in case required.

[Noosat in reply to DorsetLady]

Thanks for reply. In the past I have not automatically thought of it as a flare of any kind. I've just kind of waited it out. I'm concerned this time as there will be others on my trip who I don't want to worry about me, especially my daughter.

[DorsetLady PMRGCAuk volunteer in reply to Noosat]

Well you can only do what you can do! And you should let them know upfront- if you need time out.

We can be our own worst enemy when we try to live up to what others think we can do.

Does your daughter understand your illness? Or are you doing what most parents do - sheltering their children from their own situation?

[HeronNS]

At 4 mg I went through a phase where I couldn't move my legs as fast as I wanted. It was like walking through water. My legs felt very heavy. Eventually, probably after a few months (sorry) this effect disappeared, I didn't even notice when it went. But I'm afraid all you can do is just let your companions know that you'll be a bit slower than you used to be. Also, schedule in rest time.

Oddly enough, now at 1 mg,, I'm having same problem, but it seems more sporadic. I'm blaming adrenals.

[Blearyeyed]

If you have already tried the Paracetamol and rest options in the last few days and increase before you go , so that the symptoms have started to improve before you travel is my advice on this occasion. You have probably done more activities that you don't usually do over the last few days , and you may have also added to your Stress with concerns playing in the back of your mind about how you will cope and this will have added to your symptoms.

Nobody wants to go on holiday and feel awful or constantly be checking themselves so listen to the first signs if your body.

Take your increase until a couple of days after you return if it is under a couple of weeks you can drop back down to your previous dose in a few days , it's not a slow taper.

It is worth telling the people on the holiday about your illness and how it can affect your activity before you go. If your daughter doesn't already know these facts she needs to .

It doesn't need to make her worry , if you tell her in a positive way that just spells out the facts and everybody , including You and your daughter , can have a better holiday if everybody knows what's going on.

There's nothing worse for the suffering than struggling on just to keep others happy.

And the healthy get frustrated if they ask you to do things when you can't , and then feel very guilty when they realise they are pushing you too hard . They would also be more happy to adapt activities , or leave you happily sitting on a bench with a coffee watching , if they know that's more enjoyable for you to. Honesty is the best policy .

So , just email or phone anyone on your trip and tell them , because of my PMR I may not be able to take part in all the activities or need more rests while we are away . I might also need the odd bit of help with carrying bags and coffee breaks or getting going in the morning might take a bit more time. If I have to sit down you can all just carry on while I catch my breath with a coffee , but if I say I need to stop , have a nap , or go to bed early it's nit because I want to stop the fun but so that I can enjoy our holiday as much as I can . So please understand how I must adapt and don't try to push me to carry on. If you see that I'm tired or struggling but I won't let up please tell me to have a rest too . Then we can all have a great time without worrying , at the levels we can all enjoy. Thank you for your understanding .

Being prepared and knowing they need to adapt a little early is better for our friends and family on trips and days out than finding out later , or feeling the guilt if they see you in pain from pushing it too far to join in with them.

Have a lovely time xx

[Noosat]

Thanks !

[remission]

I think you'd be wise to see your doctor and get a prescription for tamaset (pain killer) and use that with the prednisone for the one week you're away; I did the same thing for my last trip a couple of weeks ago, thus didn't have to up the prednisone and only needed one of the painkillers per day, though my doctor said I could take up to three

[PMRpro Ambassador in reply to remission]

What is tamaset? Do you mean tramacet?

Most people with PMR don't find any relief with opiods - if you do, is it really the PMR we discuss here? Just wondering.