Hi all.
For the first time in 3 months I was awoken last night by pain in my hands and they were still swollen and sore this morning until about 1 1/2 hours after i took my meds :cry:. Right knee and both shoulders also a bit sore again but tolerable.
How am I supposed to gauge whether this is
(A) because I have reduced the pred by 1mg to 9mgs a day since 8 days ago.....or
(B) Because it is cold and wet here and I always feel worse in those conditions.
I honestly do not know which scenario is causing the increased pain and as my rheumy is very keen to get me down to single figures of pred I am loath to try upping it again :roll:.
I find that I am far more mobile and pain free when I am in the Spanish heat so maybe I should just stick things out until I get back there after Christmas......what do you all think???
Love,
pauline.
Hi Pauline!
A few people over on the other forum have mentioned recently that they find a sort of dip about 7 or 8 days after a reduction (and that at any level) but which then improves again. Did you reduce by the 1mg all at once or did you try 1/2mg at time/alternating old and new dose for a week or two? The 10mg area seems to pose a problem for lots of people so the tinier the step the better it seems to work. And as for weather - I do note a massive difference with damp! Can be as cold as it likes but damp is bad! Luckily it isn't damp here particularly often but we have just had a few waves of damp air producing lots of cloud or even snow (at last!). I'd say give it another week - if it doesn't improve or even gets worse looks like time for a powwow with the rheumy.
I have changed over to methylprednisolone which is 20% more effective so 16mg methylpred is the same as 20mg pred. I started by cutting the tablets to get 8mg=10mg pred when I reduced from 12.5mg pred. It felt a bit wobbly, not really worse but not quite as good, if you know what I mean. At the end of November I decided to try going back to taking the steroid on alternate days so am taking 16mg every other day - and it seems much much better. I am a little bit stiff the morning the dose is due but the alternate day is brilliant - I can definitely walk further and I have more energy (well, until I try to do much!).
Or maybe it is simply time for you to move 8) :wink: We have just gone through the joy that is registering to live here permanently :shock: The amount of money involved all at once (car registration, tax and insurance etc) and the number of signatures required :roll: . We now have tax numbers, VAT numbers, local health insurance ...
Happy Christmas,
love from Eileen
Hi Pauline,
Really sorry to hear you're feeling rough again. I'm not surprised when you say you feel better when you're in Spain, I always do - summer or winter. Its especially good over there at the moment hitting 19/20 degrees during the day. Oh how I wish I was there right now :magic: Eileen's dealt with all the medical side of things and I agree with what she says. Once I got to 10mgs I was advised by the Rheumy to drop .5mg or 1mg over a 7 week period and even then I had a couple of days when I could feel the drop! Have you got plans for a trip early in the new year? I've been waiting on x-ray results on my knee and hip before booking anything, but the way its going (both improving with physio) I think we'll be off to Spain quite soon. The winters there seem to be getting warmer, when I lived there we had lots of frosts - people were always surprised when we told them. Take care and hope you feel better soon.
Love from Lizzie xxx
Hi Lizzie- Ellen and Eileen,
Thanks for your prompt replies as always.
Michael and I are going out to Spain on 29th Dec for ten days, so I want to try sticking as near to 9mgs a day until then in the hope that the heat will sort me out :wink:
I am trying a 9/9/10 regime until then, just in case the 9 every day was too much of a drop, but woke again last night and I have a bit of pain in the shoulders, knees and hips again. It is nothing compared to the pain at the start of my PMR.....but could do without it at the run up to Christmas.
Thankfully, everything is done except for collecting the turkey and getting in the fresh fruit & veg....and I will be enlisting one of my sons to do the carrying, push the trolley etc. The heaviest thing I will carry is the credit card :lol:
I hope you do get out soon Lizzie-Ellen as just seeing a lovely blue sky lifts the spirits, and the heat is an added bonus 8)
A very Happy Christmas & better health fo 2012.
Love,
Pauline.
Dublin
Enjoy Spain and hope it does you good.
But one thing does puzzle me and it is not only you. Why is anybody with PMR and/or GCA trying to do a reduction when Christmas and New Year is in the offing.
We all do to much at this time of the year, whether we have PMR/GCA and feel tired then (think back) so why put ourselves under more stress.
As you may have read, my GCA has gone into remission, but the Rheumy said, don't take the last drop to zero until after the holidays. I am not dropping the 1mg till 2nd January 2012.
Hi Pauline
Hope the sunshine does you good and i have now got to the stage when i think what does a few weeks more on one dose matter as I am now into the 4th year of my PMR !! I was feeling quite pleased that I had managed a reduction to 4mg now on my way to 3.5 then looked back at last Christmas and I was on the same dose then !! I have been up and down since then The early part of this year was dominated by throat infections which seeme to affect my PMR so i couldnt reduce and then in the summer I got to 2mg and had a small flare and was back to 5mg for 3 months !! So time sure flies but Im not sure it was fun !!
We are off to Lanzarote for Christmas and New Year so hoping next year will be a good one so again hope you enjoy the break
Rosemary
Hi Rosemary,
You are so right......I know that in theory, we should all be on as low a dose of pred as possible, but I have been ticking along quite nicely on 10mgs, and would rather have given up the MTX, which I never felt added anything positive to my recovery :roll:
I did suggest to my team at my last review that the MTX was not adding anything beneficial to my treatment, as I never developed finger/hand pain until after starting it, but they are adamant that everything works in combination, so I will stick with it for another while even though I am sorely tempted to skip it and see what happens :wink: .
The problem with a lot of these meds is that it takes a while for them to act initially, and also to see a change if you withdraw them, so we are stuck between a rock and a hard place :cry.
Ah well.....such is life, and I have my Fosavance (yuck) and my Embrel injection to look forward to in the morning.......what Joy :lol: :roll:
If Santa brings me anything resembling another pill he's a dead man !!!!
Love,
Pauline.
Hello Pauline
\"If Santa brings me anything resembling another pill he's a dead man !!!!\"
That made me chuckle - let's hope if he does bring you one, it's a happy pill! :D
Have a very happy and peaceful Christmas and enjoy your New Year in the warmer climes of Spain.
Rosemary
Enjoy Christmas and New Year in Lanzarote and good luck with hitting 3.5 - good to hear you're doing well.
Lots of love and good wishes,
Shirleyxx :holly:
Thank you
Yes hope we will but feel asore throat coming on !! Great Have been keeping my distance from all gery people where possible but it hasnt worked !!
Happy Christmas and a much better New Year to all
Love
Rosemary
Wow, going on the 29th December Pauline :magic: That means you can see in the New Year twice!! We expats used to see in the Spanish New Year and then wait for an hour and see in our own UK New Year. Most of my friends were too sozzled to remember the second one (you have to jam 12 grapes in your mouth leading up to midnight in Spain Pauline, takes some doing). I was teetotal then, so could see my friends (and hubby) steadily going down hill towards midnight UK version :redwine: :redwine: :redwine: I did a lot of driving home those nights being the only sober one left. Have a great time, the weather is glorious just now (friends driving back as I speak, so I have the weather forecast first hand!). I do hope its benificial to your aches and pains.
Take care,
Love from Lizzie-Ellen
Rosemary - have a look at the other post I've just put on the other thread. Are you SURE you haven't just reached your lowest dose at 4-ish?????? Are you just letting that dripping tap into the story?
We should all get together on Skype for a drink at new year, whether mainland Europe or the UK time or both :bubbly: 8) :wink: :lol:
Eileen
Hi Eileen
Yes I really dont know if I will ever get off steroids I did stick on 5 for 3 months before I started reducing again which isnt something I had tried before and at the moment I feel fine and Im not noticing the reductions at all but I have a very open mind about it now and will consider sticking on 5mg forever perhaps My Dr said this was a possibility some time ago but she was quite keen for me to have another go at reductions as my bloods were good last time Originally I found these flares and setbacks hard to cope with as my first bout was plain sailing but now I just accept them Annoyed about my cold now might have to get out the Austrian Rum !
Dont have skype but will raise a glass ( we hope on the beach in Lanzarote watching the fireworks !) to everyone and hoping for a better year for all next year
Rosemary