I've been reluctant to mention it... because obviously I didn't want to jinx it, but I have actually felt "not so bad," for the past 4-5 days. (Shhhh, I don't want "She that shan't be named" to hear this!)
I had been tapering down by 5mg every 10 days; and I was continually left feeling like "crap." If it wasn't the side effects from the Pred, it was the horrible withdrawal symptoms, from reducing the Pred. It seemed I no sooner started getting used to the lower dosage, it was time to reduce again. Ugh!
However, I was told that when I got to 50mg, to hold there for 30 days. So I've been holding at 50mg; and I've been holding now for 15 days. And I gotta say, "I don't feel half bad."
I seem to have more stamina and my energy levels are higher. There have been long-ish periods during the day, where I feel "normal and "like myself."
On Wednesday, I walked into town and decided to treat myself to a Chai Latte. I sat outside the cafe, right on the High Street, people watching and enjoying a beautiful, sunny, Spring day. It literally bought tears to my eyes as I sat there and it hit me that, I FELT NORMAL. I was just a normal, regular person sitting in the sun, enjoying a Chai Latte and it felt soooooo good! Such a simple pleasure!
It's not been every day, and it's not been all day, but it's something right?
I am learning to be thankful for each of those precious moments.
I've been on 15mg for a few weeks coming down from 40mg I am to stay on 15 until my appointment on the 14th April, and it's the best I felt since this all started not pain free but like you I managed to go into the village and felt some of my old self what a good feeling that was, but I am learning to pace myself and go careful with each day as I'm beginning to understand what this disease does to one, I don't want to move off the 15mg as prospect of more pain or whatever I dread, I read the forum every day as it's helped me tremendously, great help from all of you thanks
Wonderful to hear! From crap to not half bad or half good all the way to normal is pretty amazing! It is indeed something and quite precious. Enjoy every second of those feelings and you have another pleasure filled day today!
Great news Melissa - well done and thanks for sharing! :-).
So, with a bit of patience and doing as many of the 'right' things as possible, we CAN get a break from the worst bits of PMR. I agree, when the symptoms subside (for whatever reason), the difference is Night and Day - and it reminds us what nasty illnesses PMR and GCA are.
Thanks for an inspiring Post - look forward to more
'Uncle' MB
(PMR Dx 2015, started on 30mgpd Pred, helter-skelter tapering journey, hovering around 4mgpd and waiting for the next break..)
This is a wonderful transformation. So happy for you. Life is full of contrasts. These precious days are so appreciated because we know the other sort. Your treatment plan is suiting you, allowing proper relief from symptoms. When I am in that lovely state, everybody’s face looks beautiful. You are going to steer your little boat to shore, I just know it. 🌼
Oh, what a difference a day makes. Or as in our community, what a difference a few mg of Pred makes. Sounds like a lovely moment. More coming your way.
Those moments " when back to self" are so different to the mental hammering so many of us go through with GGA /PMR. Melissa these are happening for you now. This morning after a shite month of cough,sinus etc. I had an amble down the local Worcester canal to Alvechurch. BOOM!!! Water,wildlife, just enough passing conversation & SUNSHINE. As Louis sang! "It's a Wonderful World". Well at least sometimes!!!!!!!!!!
Mamici when you were tapering down 5 mg every 10 days and it was so difficult to discern prednisone symptoms from withdrawal symptoms or even from a flare showing up, how did you get thru that without panicking about your vision and going back up on the prednisone? Were you able to call and get feedback and reassurance from your doctor? How did you make it work?
Since diagnosis 3 months ago I’ve been stuck at 40 mg, with brief tries to reduce to 30, 35, but then having symptoms and going back up to 40, and now a tooth abcess that needs a root canal next week. Rheumy still wants me to go to 30 now but I’m scared to. I get blurry vision and wobbly print sometimes. I Will see the rheumy next week also and I think he won’t be pleased with me.
Meditation helps, but the fear of vision loss is pretty terrifying to me
The Rheumatologist, GP and all the people on this forum, believed the majority of my issues were/are steroid side effects (because I was/am on mega doses) and steroid withdrawal (due to the fact that I was tapering every 10 days). I felt like CRAP all the time, but the headache, temple tenderness, and neck/skull pain never came back.... so I did't worry about GCA so much. I thought I was having PMR symptoms, but that confused me because I was on 80, 75, 70, etc... and could not figure out why I'd be having PMR pains on such high doses! In the end, why didn't I panic? I did, but it didn't help, so I had no choice, but to roll with it. I laid around and felt sorry for myself on the "bad"days and on the "just yucky" days I did what I could... I the end have no control overranything, so rolling with it is only option. I get wicked blurry vision all the time! Like there is Vaseline on my eyeballs! Ask the experts on this site the best taper plan for you.... and try to stick with it. You may have a few days of yucky, but if it's steroid withdrawal it goes away in 3-5 days. If it's a flare it last longer I believe. Best of luck, I hope you conquered this! Xxx
As you’ve had so many problems trying to reduce from 45mg, then I would say that it was not the correct level to start you on - you probably need slightly more. A higher dose would have got a better grip of your built up inflammation whereas 45mg was only just managing, and reducing quickly down to 40mg hasn’t helped much either.
With the root canal due, I think it crazy to even think about reducing, you need to get that out of the way first. Your Rheumy may be cross, but it’s your body not his, and what he wants is unreasonable.
If you are having difficulty in reducing you might like to try either smaller tapers I.e 2.5mg a time or a slower plan as attached
The blurry vision and wobbly print are due to the Pred, not sight loss, so stop worrying about that. As I’ve said many times, once you are on Pred the possibility of sight loss is very low - the dangerous time is pre diagnosis, pre Pred!
Thank you Dorset Lady for the reminder of once you are on pred the chance of sight loss is quite low. I’m a worrier! I actually was started on 40, not 45. I went up to 45 at one point when I tried to taper from 40 to 35 and had problems. Then back to 40 where I am now.
Yes I agree about getting the root canal out of the way first. The gum is still somewhat infected. I’m planning on printing out some taper plans like the one you linked to and bringing to my appt. and discussing with him how to move forward from here.
Yes, I knew 45mg was in there somewhere. And you’ve just confirmed what I said 40mg was not enough for you, or at least you weren’t left on that dose long enough. I know doctors don’t want us to be on too high a dose (and neither do we) but too low is no goid either!
Provided you start high enough, for long enough, you shouldn’t have problems reducing at your level, unless you are very sensitive to dose changes - which maybe you are. But personally I think your Rheumy is rushing you, and it’s not working.
Hope the root canal and next Rheumy appt. go well.
S pleased to hear your news. Makes be realise that I will not always be in pain and exhausted. Only diagnosed on 14/02/18 so still struggling at the moment.
Horizon, you certainly will start to feel better. Us PMR old timers know that patience is the key to getting the right dosage of pred to suit your needs. You will get there.
I’m so pleased for you. It’s a wonderful feeling when you suddenly feel ‘normal.’ My visitors have gone. It was such hard work despite their input. Feel tired and achy but at least I’ve only myself and husband to cope with. Hope you continue to improve and reduce and the sun keeps shining, it does help.
Ohhhh, I'm so happy it's over for you and you can rest now! Did you at least enjoy the time with them? I have another two weeks at 60 mg and then go 45, I gave NEVER been below 45mg! Last time I got there, I "crashed and burned!" Fingers crossed that I can get there, stay there for a bit and move down!
Hmm....did I enjoy their visit? If I’m honest, no. I’ve always enjoyed entertaining and in the past two visitors for three nights would have been fine. I now realise while I’m battling this disease and have a wobbly husband who needs watching and helping, roll on the new knee, I can’t have people staying. The relief when they left, the blissful silence in the house. I managed but it was hard work. I only had one meltdown when I found I’d forgotten to turn the dishwasher on. I think they were a little shocked at my language! We’ve a few things in the diary this week, hospital appointment for knee and unfortunately a funeral to attend but I can rest when I want, collapse on the sofa and best of all I don’t have to make conversation. I’ll keep my fingers crossed for you and remember when I’m concerned at not being able to reduce that at least I’m below 10.
Ohhh poor you! However I understand 100%. I take the cowards way out and just decline the company to begin with! Re your meltdown, I thought that was just me breaking a b _ _ch! Happy to know others find it hard to cope sometimes! Hang in there. Get some rest!
Delegate! Start as you mean to go on. Honestly if you don’t tell them what needs doing you’ve got a problem. One thing I learnt from this last few days was breakfast. Mornings are dreadful, I find moving difficult, it happens but slowly. Say to them you find the mornings difficult so please get your own breakfast. Look after yourself! If you don’t you’ll finish up feeling dreadful. I presume it’s family staying, not that it should make any difference, if you feel like having a lie down, do it, I did and it helped. I had an appointment this morning with the chiropodist, she gave me a lecture on delegation. She understands as her father in law has PMR and she had a health problem a few years ago that meant she couldn’t be the domestic goddess we females think we should be. I found it very helpful. Not sure whether my family will be of the same opinion .....tough will be my answer to any complaints. I do hope you enjoy your five days but remember you have to look after yourself or you’re no good to anyone. Take care! This forum is a lifeline.
Thanks for your wise words. The mornings are hard and I am like a snail so yes they will have to help themselves. Yes it is family coming for Ed Sherran concert
When we have visitors I lay out the bedding on the spare bed and ask them to put the covers on the duvet - if I had a really good day I will have managed the bottom sheet and maybe the pillowcases. If I didn't - I didn't.
Melissa, so delighted for you. Sounds like you are getting there and I know what you mean about the sheer delight of those moments when you feel 'Normal'. We take good health for granted until it is taken from us. You chai latte people watching moment sounds like bliss. Go girl.
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