It has taken some time since arriving here, twelve days ago to sit down and update events. It took nearly 24 hours to get here with delays etc so It was about time to take my steroids early morning with my UK body clock and time to go to bed with Arizona time. Over two nights I did a cold turkey and moved my steroids around to this timeframe, sleeping when I could and cursing with the stiffness and pain. Four days in I started with a streaming cold and hacking cough which has now almost gone.
My doctor gave me a plan for my time here and said I should reduce to 10mg on Jan 24th which I have done and still battling on.
I honestly don't know where I would have been without you all. I felt like a scared newby, cast out into a foreign land with a plan and a bag of pills. I avidly read your posts every day and have learnt so much. When I dropped down to 10mg of Prednisolone I didn't panic when I awoke all stiff and in pain, I know from the info you so kindly shared that it would probably be steroid withdrawal and not inflammation. It is getting better day by day and I feel brighter. I have also taken on board the need to rest and don't feel guilty having a nap in the afternoon or asking for help with household chores.
My husband has moderate dementia and some days knows I am unwell but not what with despite me explaining the condition on numerous occasions, so I just go with the flow. On his good days he tells me he is now my carer and that he will look after me bless him. We muddle along and get by.
I still have to learn how to navigate the site and print stuff etc but will get there.
Thank you all again, wish some of you in cold wet climes could share some of this sun and warmth. Three of my sisters arrive here in five days time to stay for a month so hope my transition to 10mg is well under my belt by then.
Take care everyone and keep the information flowing.
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SheffieldSonia
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Glad to hear you’ve settled. If you get delayed again, it does no harm to take a couple of mgs of Pred to tide you though, travelling is stressful enough even when it goes smoothly. Don’t be frightened to do that - a little over is much better than not enough!
Have a lovely time with your sisters, and let them take the bulk of the work whilst they’re there. I’m sure they won’t mind!
But most of all, enjoy. I’m still in NZ and enjoying their summer - the sunshine does make things seem better.
We spent a couple of weeks in NZ in 2010. Stayed in the Bay of Plenty, a beautiful place with glorious weather. You are so right, the sunshine lifts your soul.
Time for my afternoon siesta and a read of my book, such luxury.
Glad you are safely landed and have a little time to adjust to what I think has been a very rapid drop from 15 mg to 10 mg via 12.5 mg? No wonder you are in pain. I hope for your sake it is "only" steroid withdrawal but if your discomfort doesn't improve over the next week or so, do you have enough tablets to increase your dose and wait a while before attempting to taper again, a bit more gently next time?
You've certaily chosen a beautiful area of the US for a winter stay.
Just let me remind you that the climate there is by far a lot drier than that to which you are accustomed, and both you and your husband must be sure to take in plenty of water on a daily basis. Don't wait until you get thirsty. Be proactive about it, taking an extra glass with every meal and sipping in between. And take personal water bottles with you when you go away from the house so you can sip at will.
You'll both feel a lot better if you stay hydrated.
You muddling through with PMR and your husband with mild dementia just brought tears to my eyes. I’m 76 and my husband is 77. I have PMR and multiple muscular/skeletal issues. He now has a painful neck and chronic sciatica. We take turns doing physical things that neither of us should probably be doing because what else is there to do.
But dementia is a whole other level of disability to deal with. And to have traveled so far with the PMR and having to mind everything....
Good for you to have beaten that cold in such a short time. There is a really bad flu here in the States right now. Most people are coughing for a month.
My hat is off to you. May you have a wonderful vacation.
Have a wonderful wonderful time. Oh for the Warm and the sun!!! A long journey but it sounds like it is worth it. Keep us posted how the taper to 10 is going.!
I'm in the same boat as you.. Only my husband is in denial or unaware of his dramatic cognitive decline, I can't even bring the subject of going to any kind of doctor, he gets very angry.
I've sent him off to the States to visit our daughter and grandkids.. stranegly enough, I miss him and have realized that he does quite a lot of chores that I'm incapable of doing.. but dealing with someone who can't remember from day to day that I have PMR is very challenging.
Have fun in Arizona.. Must be great fun to get together with your siblings like that! Lucky you!
Hello SheffieldSonia from Sheffieldjane and welcome if I haven’t already ( jet lag). I did the opposite to you and actually took my normal 7 mgs of Prednisalone when it was morning in Australia, Korea and the U.K. this meant I had extra during the journeys each way. It has done me no harm at all, enabled me to be of more help with the bags and there has been no ill effect that I am aware of. There was no adjustment to a normal 24 hour dose either. So glad you have found us, this site has held my hand since the very early days and has stopped me slipping into disability thinking. I can’t wait to be well, I can see little signs, like the signs of Spring in February.
My thoughts are with you in Az. Used to spend winters there. Enjoy your sisters. My sister and I always travel together...going to Charleston mid February. She is sort of conscious of my PMR restrictions but I call her hurricane Lynn so you can imagine her personality! Let us know how you do on 10mg. I started 12 yesterday and was on my bed at 3 for the day, asleep by 7. Varied energy levels are a challenge.
As has already been said - if you feel a little bit more pred might help on a particular day it won't do any harm and you won't have to wean down. To reduce while travelling is very courageous!!!!!
I thought long and hard about taking a bit more pred but don't think I have enough meds to cover me for any extra.
Will have to have a full count of what I have to match my days here and see if there is any spare. The weather is wonderful and I spend time every day with the sun full on my right shoulder which is excruciatingly painful at times. Think it is osteoarthritis which came on the back of my PMR.
Don’t know that you can actually blame osteoarthritis on PMR, but it certainly doesn’t help it! I had it way before GCA, but it sort of gets overlooked slightly when PMR or GCA come along, but as you get to lower doses of Pred it reminds you it never actually went anywhere!
Plus of course it does have similarities - inflammation pain, fatigue and memory blowouts!
Certainly does cause fatigue according to the information on the arthritis web sites, and I still suffer a bit from it, not the debilitating type with PMR/GCA, but it’s there. Unless it’s age if course!
Fair point. But like HeronNS I do get some “fatigue” and it seems to have increased as my OA has worsened, but then I am older as well... so who knows!
What I was trying to say is that prior to being bashed with major fatigue on low dose of pred I wasn't aware of feeling fatigue, not with OA diagnosis, nor before diagnosis and treatment of PMR. When you implied fatigue was inevitable with OA I thought possibly I always had been mildly fatigued, like all my life, but not understood I was. So now I wonder what it is to feel normal.
Perhaps it was my relative youth, because I think I'd had some OA for years before diagnosis, just have to look at my toes, or consider the condition of my neck vertebrae to believe that, so I wouldn't be aware of OA affecting me in any new sort of way because it had been part of my experience forever.... Possibly I'm not aware of life without some degree of what others might call fatigue? Like the little girl I read about who'd always had a headache until her food allergy was discovered and then she learned having a headache wasn't a normal part of life?
My OA hit in 40s too. But was complicated by fibromyalgia. However any long term pain can cause mental and physical fatigue but we get used to our new normals really quickly. My love of unattainable lovely deep long sleep is based on not having to think or consciously move. 9 hours of sleep makes me feel like a new person. Sadly it happens about twice a year. Until then it 4 hour cycles.
The website must be fixed, clicked on notification and it took me right here. I don't remember getting pain, per se, just some stiffness in my fingers, and some of the joints became enlarged (this is what led to the diagnosis). Since then x-rays have shown I have fairly serious arthritis in my spine, which explains my stiff neck and intermittent lower back problems, and OA is present in other joints, especially feet as well as hands, but these are not issues which really affect me all the time nor cause the type of pain which makes me reach for a pill bottle or anything. In fact somehow I learned really early on that aspirin (and its relatives) should not be taken on a regular basis for OA as it actually interferes with cartilage regeneration. So I've been medication-free for OA. When I first began to develop PMR symptoms I assumed it was the OA finally getting a grip on me, and went to doctor (a new person my own having retired) hoping she could prescribe something which would help. She prescribed Celebrex which scared me so I never filled the prescription. My highest dose of pred (15 mg) wiped out all my aches and pains. OA has returned somewhat but, you know, I must have been doing something right all these years because I'm now 70 and I don't think the OA has progressed much in the past thirty years. The thing I have to be careful of now is not to confuse OA with PMR, which I used to find easy, but since my flare last year things seem a bit more complicated.
I am so sorry you have fibromyalgia also. Now that really must complicate things for you.
They all being there own special traits to the party! The good thing about my memory is that it likes to remember good days rather than bad. Little things make me happy/smile.. I bought new pencil sharpener today and sharpened all my drawing pencils. Distraction distraction distraction. The best pain management.
I have just begun a class in "hand lettering" which is supposed to teach us how to turn text into art. Not exactly calligraphy, although I could tell from the first class that having some calligraphy training already is going to be useful. So I bought a tin with twelve different pencils for the rest of the sessions as my trusty mid-B's are not going to cut it for this craft.
Are you an artist, and what do you most love to do?
That sounds interesting and just having to focus is useful. Used to.love doing calligraphy as a kid.
I wouldnt deign to call myself an artist😲I am creative I think. I like painting and drawing. I tend to go in and out of hobbies and interests. Jill of all trades. At least I have pointy pencils again so drawing might kick off and that could lead to painting. I am terrible for losing sharper and no.longer have the confidence to sharpen with my very sharp penknife.
One of my new years resolutions was to draw a picture every day. I haven't quite managed it, but doing quite well. And I decided it could be anything, didn't have to be what you'd call a "finished" picture. Just a quick sketch was going to be good enough! So one night it was bedtime and I was eating a banana when I remembered I hadn't drawn my picture for the day, so I sketched my half-eaten banana. Another time I caught quite by accident a very good likeness of one of my cats! Oddly enough even this is helping, I seem to be regaining my confidence.
Sometimes if I fail the New Years thing I start again with Lent. When I was 16 I gave up sugar in my tea and coffee and on my cereal. Within a few days I realized that all my life I'd been tasting the sugar, not the food or drink, and I have never since had sugar with those things! I used to give up computer games for Lent, which after a couple of years broke a kind of addiction as I hardly ever play them now. I used to give up chocolate, same thing. So now I take up things I want to pursue, like playing the piano every day. I suppose if I were truly into the Lenten spirit I'd take up decluttering a few square feet of my humble dwelling every day. Must think about that....
You MAY find that if you go to a pharmacy, show them the pack and explain you have miscalculated they MAY give (sell) you some extra. In the UK you can do that - if you are away from home and have forgotten your tablets or lost them a pharmacist will provide emergency cover because it is dangerous to just stop pred.
I won't go away without enough pred to cover me for at least 2 weeks extra at a higher dose!!!! But I am paranoid and have been known to stop halfway to the motorway to check (again) my pills are in my bag!
Oh yes - nearly forgot: I would doubt OA came on the back of PMR. But shoulder bursitis certainly might.
My GP said it was wear and tear old persons osteoarthritis exacerbated by my PMR. A doctor I sat next to on my flight from Atlanta to Phoenix said it was rotor cuff injury and on no account must I have surgery???
My GP said that steroids didn’t work on that sort of pain and for me to take 15mg of Codeine if the pain was bad. I drive here so can’t risk the Codeine. It came hand in hand with the PMR pain so am left wondering.
You outdo me. I take an extra weeks worth of all pills at max dose and I have stashed at families homes. You only forget once then you do the stop recheck every time thereafter.
One lady on another forum who lives in France set off to the UK and discovered when she got there - no pred! So she took no pred for 5 days because it was "too inconvenient" to go to a doctor. She got absolute hell from us all on the forum when she got back. She was on high enough a dose for it to have gone very pear-shaped...
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I don't remember getting pain, per se, just some stiffness in my fingers, and some of the joints became enlarged (this is what led to the diagnosis). Since then x-rays have shown I have fairly serious arthritis in my spine, which explains my stiff neck and intermittent lower back problems, and OA is present in other joints, especially feet as well as hands, but these are not issues which really affect me all the time nor cause the type of pain which makes me reach for a pill bottle or anything. In fact somehow I learned really early on that aspirin (and its relatives) should not be taken on a regular basis for OA as it actually interferes with cartilage regeneration. So I've been medication-free for OA. When I first began to develop PMR symptoms I assumed it was the OA finally getting a grip on me, and went to doctor (a new person my own having retired) hoping she could prescribe something which would help. She prescribed Celebrex which scared me so I never filled the prescription. My highest dose of pred (15 mg) wiped out all my aches and pains. OA has returned somewhat but, you know, I must have been doing something right all these years because I'm now 70 and I don't think the OA has progressed much in the past thirty years. The thing I have to be careful of now is not to confuse OA with PMR, which I used to find easy, but since my flare last year things seem a bit more complicated. 
Is it a flare or something to do with adrenal insufficiency?
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First consultation with GP after starting with Prednisolone.
