PMR is changing my life.... each day I wake up wondering when I’m going to feel like myself again. I’ve been struggling since September 1, 2019, which, I have read apparently isn’t that long of a time! Hoping to share insight with others dealing with the same miserable disease😊
PMR : PMR is changing my life.... each day I wake... - PMRGCAuk
PMR
99 Replies
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PMRproAmbassador
You don't want to hear how long I've had PMR - but I promise it does improve providing you have a sensible doctor and are on enough pred!
Absolutely key to living well with PMR is enough pred to manage the inflammation and, as a result, the symptoms. That removes the pain element. Then take control of what you CAN control: diet (which can make a big difference), the right sort of exercise and rest in the right proportions, and look at what you CAN do rather than what you can't do. And it may surprise you that life with PMR isn't the end of the world after all.
in reply to PMRpro
Thank you so much for the inspirational comments! Sincerely! I’ve never had a huge health issue and this one just leveled me. I just finished my mile walk but learned I can’t swing my arms like I usually do. I pay for it in the morning! I know how bad methylprednisone is to our bodies. Have you tapere I know how bad my soprano sound is to our bodies. Are you tapering your dosage?
Have been tapering almost since I started - and that is the idea. You find the lowest dose that works for you - if you start at 15mg say, you might get to 5 or 6mg or you might stick at 10mg but it can give you your life back which is what matters.
You will find that almost all of us had never been ill before, certainly not chronically so. In a year you will look back and see how far you have come - and in the meantime. slow down a bit and learn to smell the roses.
in reply to PMRpro
I am learning, rather slowly I must admit. Thank you. I think my doctor cutting me 4 mg three times a week was a rather large reduction in compared to how you are describing the tapering. Do you think I should just hang in there and my body will adjust? I see him in two weeks. And at that point I’m sure he will have me tape or more I’m assuming it’ll be 1 mg not another four.
No taper step should be more than 10% of the current dose - it doesn't have to be the same dose every day and some people take the 10% of the week's total dose and then reduce that amount over the week. But you can't cut by 4mg on multiple days and not suffer.
This approach works:
Hunter134 in reply to
Ive had a flair in Feb.2019.Ive learned to taper slowly.Started on 15 mg and am now on 8mg.I told my reumy i am tapering when my body tells me.I have learned the pmr rules me not the other way around.In time you'll feel better.
Your replies are so comforting. Still struggling on 10mgs from 15 really want to get lower but have medium pain in usual places. Doctor give me lyrica now for aches and pains so hoping that's going to help. Another poison for my body but if it helps I'll do it for a bit.
Lyrica is unlikely to help PMR pain - different mechanism. Dropping from 15 to 10mg is 33% - you didn't do that in one did you? It might work for short term use and tapering of pred, up to 6 weeks perhaps, but it won;t work in PMR for long - you will miss what you are looking for: the lowest dose that manages the inflammation as THAT is what relieves the pain.
alvertta in reply to
Try swimming. Good for your lymph system.
in reply to alvertta
So funny you said that. I’m waiting for my membership at the YMCA. I actually don’t think I can use my arms to swim right now but at least I can get in the water and move my body. My shoulder joints have a good range of motion I just can’t do anything repetitive. Thanks for the thoughts. We are on the same page.
alvertta in reply to
I do water aerobics. Then gently swim around after. Feels lovely.
Just walking in water is good too - but don't overdo that either as everything you do in water takes 7x the effort it does on land!
Leilagirl in reply to
Just reading your swimming reply. I had the same concern upon diagnosis.. you don’t need to freestyle swim per se.. just get in warm water and gently move.. breathe.. stretch gently as to not hurt yourself. Do this 3-6months.. you will be amazed what happens if you are managed properly with prednisone.. good luck!
PMRCanada in reply to
I do deep water exercises at a pace that is good for me, where I’m at, at the time. It has helped me tremendously in the last two years.
I often talk about using what energy i have to the maximum benefit and to do things that matter rather than cleaning, shopping etc. I have a 7 year old grandson and i decided that i would use my time and energy to build memories with him. It doesnt mean i have to be physically taking him places but i make clay and model with him or cook and bake and other crafty things. All the chores can wait and if people dont like it, hard luck. I dont let pmr rule my life but accept what i can and cant do and fit enjoyable things in when ever i can.
You just need to do what pmrpro says about ensuring you have the pain under control as much as is possible and then decide what YOU want to do. YBB
in reply to Yellowbluebell
Thank you! As you read in my post, I have been such an active person and this has just stopped me from painting the bedroom, trimming the bushes, digging the holes in my backyard for trees, etc. etc. Don’t laugh, yes those are all the things I love and now I just physically can’t do it. My biggest issue is my whole body doesn’t feel right. Did you experience that too or are you experiencing that too? I feel spacey and just out of it. My pain is under control but yet I just don’t feel right.
scats in reply to
No one is laughing trust me. I ache to do every one of those jobs, however mundane they may seem.
Constance13 in reply to
Be thankful your pain is under control. Many of us, even on high pred doses, would love their pain to be at least 'manageable'.
One of the most difficult lessons to learn with this pesky illness is "acceptance" - it will take what it takes before you can do the things you used to do. Be patient - there is light at the end of the tunnel.
Good luck! 🍀🍀
in reply to Constance13
Thank you👍😁
I dont think any of us are patient or accepting in the beginning. Some of never get there or insist on doing silly things like jumping on space hoppers!! Like you say pain control is the main thing and for some its never "totally" under control.xx YBB
DON'T try that again!!! 😂😂😂😂 And be honest - you didn't "jump" on, you crawled up the fence to get on it.
I sat on it but had to crawl up the fence to get off!!
Sorry got it round the wrong way!😂
Either way it was stupid but i enjoyed it and grandson thought it was hilarious!!🤪
He'll never forget it! When he's your age he will tell his child about it.
Thats always been my point when i say i spend my energy doing things that matter like making memories with him. I want him to have the memories i have of my gran. Household chores can wait.xx
So agree. I ran alongside my grandson of 4 learning how to pedal his bike to school - light hand on his back to help him balance, and thought ‘bonkers’ - but so worth the next day bit of extra fatigue and stiffness.
Its another memory for him. Even if our actions are a bit bonkers we know its for a good reason. I can live with a little bit of aching next day knowing he enjoyed himself.xx
😂
powerwalk in reply to
Spacy is probably the Pred. I was very much like that when I went on it. It does ease when you tape down. You are not alone!!
Housework can wait. Yes.
You are so right I'm trying to do the same!
Its not always easy to stop doing everything we normally do but i cant think of a better reason to give up most housework than making memories or just doing stuff for ourselves.xx
I may have a new cleaner 
Hope she is broadminded about dust ...
As long as you dont have to deal with it!!
Life with PMR is certainly not the end of the world. Like all of us you too will manage to get your head around this “ uninvited guest” and decide we’ll, yes, it could have been a lot worse....goals and expectations must change...but YOU are still the same person. Success on the journey. Much love from all of us. 😊
I remember pmrpro telling me the same thing about it getting better and I was skeptical, but it really does once you get the right amount of pred and a good tapering plan. All my problems with pmr were caused by Dr's reducing pred too fast so I was continually flaring the first 6 months. Once I increased pred and then slowly tapered life was much better. You just need to accept that for a while you will feel different but it's a chance to adapt to a new normal for a while.
in reply to
Thank you for the reply! What was your tapering program? Currently, I am on 12 mg every other day and 8 mg on the alternate day. I don’t feel as well as I did on the higher dose but I’m also not totally disabled from it. I Just don’t feel like myself....I didn’t realize what an effect methylprednisone would have on my total body.
in reply to
I don't have experience with methylpred just prednisolone. I am at 7mg at the moment but have a break from tapering. We tend to use the same dose of pred everyday as the body does not usually like such a big alternate approach. In the "pinned posts", you will see a number of tapering plans we call dead slow nearly stop (dsns). Lots of people have benefitted from variations on the theme of introducing the new lower dose slowly. I did a slow taper.... So if you were going from 12 to 11mg you could take 11mg on day 1, then take 12mg for 6 days. Take 11mg 1 day and 12mg 5days, the 1 and 4days....until you spend a week or so at new 11mg dose and see if it fits okay. As I say there are different dsns abs in the pinned posts.
in reply to
Thank you so much for the information. I know it’s trial and error. Even without the pain, do you feel your body is weak and just not right? It’s hard to explain but if that’s how you feel you’ll understand. I am just very curious to see if it’s the disease or the prednisone. When I was on a higher dose prednisone I felt like I Could run a marathon! Once I started tapering, that next week it was like a truck hit me but yet I’m still on the same tapering dose.
in reply to
Oh yes... But the number of tnose days do reduce. Fatigue is just a pain and uncontrolled inflammation will just impact on you more. I would be terrible on that kind of alternative day difference.... I am sure most would! I even had to slow taper 0.5mg using pill cutter. 1mg drop was too much sometimes. You do need to pace yourself and like Ybb says only do the thongs you enjoy... Save the energy for those and if you need a rest in the pm. have one.
No, no, no!!!! No wonder you feel rubbish.
Get a pill cutter for a start, Medrol tablets are a pest. Most of us work on 1mg steps using prednisone or prednisolone. I've been on methyl pred and I have to say I hated it from day one - either sort of pred was fine. But I can't remember if it was possible to quarter them ...
When TAPERING (as opposed to REDUCING which is something different) no step down should be more than 10% of the current dose. Which means at present you should be trying to do 12mg to as near 11 as you can manage. Alternatively, if that is still too much for comfort, you can use a slowed tapering approach like the one written about here:
healthunlocked.com/pmrgcauk...
Which makes it less painful if the drop is bigger. But 4mg difference is far too much to ask your body to adjust to from one day to the next.
in reply to PMRpro
I’m wondering if I should contact my doctor and inquire. I’m just not feeling well.
in reply to PMRpro
Thank you so much for that insight. I will be speaking to my doctor on Monday. I thought this is what tapering felt like. Just miserable without pain.
No, however you felt on your starting dose is your guide - providing it was enough and you were left on it long enough. You should NEVER feel worse at the end of a taper than at the start.
I suggest you write a new post with details of your symptoms, your starting dose and how you have dropped the dose since September, how much you changed the dose and how long you stayed at each new dose. Then we can see and comment. You shouldn't have been struggling from the outset - something about your management is wrong.
jenerino in reply to
After 4 years I am finally down to 2.5mgs and have yo-yoed up and down over the last year. My doc says half a mg 0.5 every 6 weeks IF I feel OK. So far it's working. Fingers crossed, but what I really mean to say is that s-l-o-w-l-y does it! And it is so much better to do it really slowly, than sudden drop and back to square one.
Yellowbluebell in reply to
I remember the same conversation 16 months ago! I put the fact i have got so far without a major flare down to listening to pmrpro, dorsetlady and Blearyeyed right from the beginning, except of course for my eating habits!!!
in reply to Yellowbluebell
It makes such a difference. I didn't find the forum for first 4 to 6 months or so and struggled.
in reply to
Well, I feel fortunate to have discovered all of you! Knowledge is power. I’m tempted just put myself up another 2 mg on that alternate day and see if it makes a difference. At least that’s less than the full 12 a day on this alternate days.Thank you for your input.
PMR2011 in reply to
Many on here discovered alternate days doesn’t work well with PMR. Tapering by no more than 10% of current dose every 4 weeks or so is much easier on the body and less likely to miss tapering too far. How much experience does your doc have with PMR?
PMR/GCA a Survival Guide by Kate Gilbert is a good place to start understanding the illness. As others have said, slow and steady wins the race and need to pace activity too!
in reply to PMR2011
My doctor said he had a lot of PMR patients. I think he’s trying to find my minimum dose to keep me pain-free. But, when I see him next week I’ll have a lot more questions to ask him. Also, thank you for the Name of a good book. I’m buying it right now.
Whitner in reply to
It is a great book full of some really practical information!
Comments like that have been heard from several medics - when the truth emerged "quite a lot" meant 2 or 3. And since we are all different, having a lot to compare with isn't really very valid until you have dozens - like here.
Yellowbluebell in reply to
I was lucky that while waiting for bloods to come back i found the forum and by the time gp had decided i definitely had pmr i was already reading stuff, especially from the guys above. Blearyeyed usually tells me off on pm if i say i am about to reduce and she doesnt think its the right time!!
Thank you so much for the inspirational comments! Sincerely! I’ve never had a huge health issue and this one just leveled me. I just finished my mile walk but learned I can’t swing my arms like I usually do. I pay for it in the morning! I know how bad methylprednisone is to our bodies. Are you tapering your dosage?
Thank you for the reply! What was your tapering program? Currently, I am on 12 mg every other day and 8 mg on the alternate day. I don’t feel as well as I did on the higher dose but I’m also not totally disabled from it. I Just don’t feel like myself....I didn’t realize what an effect methylprednisone would have on my total body.
Yellowbluebell in reply to
Thats a very odd tapering program. The drop between 12mg and 8mg must be really messing your body around. I started on 15mg pred oct 18 and am.now at 9mg. I only reduce by 0.5mg each time now i am under 10mg. My whole journey has been fortunately fairly plain sailing but i have stopped tapering at stressful points in my life like my youngest getting married etc. Who suggested this type of taper? YBB
I was about to say the same thing, that may be why you feel bad still.
It stilll sounds a very odd way of tapering. My body wouldnt cope with that constant variation of dose.
Mine can't deal with 1/2mg reduction at the moment. This sounds like a case of another rheumy who needs to try it for themselves!
Definitely.xx
in reply to Yellowbluebell
Could you please tell me is it days or weeks once you to start tapering to know if it’s working. In other words, if you taper a milligram on Monday if it’s not working , when do you start to feel pain or realize that the taper is not working and you have to go back to your original dose? Days...weeks??
Yellowbluebell in reply to
I have never had side effects after tapering but it usually takes a few days to be sure. Other will be able to give you more advice on when and what is usual. The only time i have had issues is when i mistakenly took two 1mg tablets thinking they were 5mg tablets. I felt like i was dying but after a couple of days at 15mg i dropped back downto my 10mg but i did stay on that for an extra 4 weeks just to make sure.
in reply to
Usually you may get steroid withdrawal during first 3 days of a drop. My right shoulder used to hurt like mad. I used otc painkillers to just take the edge off the withdrawal. If however the pain and fatigue comes back after 7 to 10days...or thereafter, it usually means its too low. I took 2 or 3 attempts to drop sometimes. The slower tapers mentioned above usually help negate the withdrawal as you don't do a drop overnight, it takes a few weeks to adopt the new lower dose. If you get pain back thereafter it may mean your body is not ready.
Yellowbluebell in reply to
I split my tabs into quarters to give me a slower taper at the beginning and will do it again if need be now i am under 10mg. If it takes longer it takes longer. So be it. Not into pain so have no wish to inflict it on myself just to rush off pred.x
in reply to Yellowbluebell
My rheumatologist
Thank you! As you read in my post, I have been such an active person and this has just stopped me from painting the bedroom, trimming the bushes, digging the holes in my backyard for trees, etc. etc. Don’t laugh, yes those are all the things I love and now I just physically can’t do it. My biggest issue is my whole body doesn’t feel right. Did you experience that too or are you experiencing that too? I feel spacey and just out of it. My pain is under control but yet I just don’t feel right.
in reply to
No it'll be a while before you can do things like that without planning. I did 10mins of a task and then rested. Then 10mins etc. If I overdid it my arms shook so much I couldn't hold a drink. Then one day it just stopped.
Thank you so much for the information. I know it’s trial and error. Even without the pain, do you feel your body is weak and just not right? It’s hard to explain but if that’s how you feel you’ll understand. I am just very curious to see if it’s the disease or the prednisone. When I was on a higher dose prednisone I felt like I Could run a marathon! Once I started tapering, that next week it was like a truck hit me but yet I’m still on the same tapering dose.
I am learning, rather slowly I must admit. Thank you. I think my doctor cutting me 4 mg three times a week was a rather large reduction in compared to how you are describing the tapering. Do you think I should just hang in there and my body will adjust? I see him in two weeks. And at that point I’m sure he will have me tape or more I’m assuming it’ll be 1 mg not another four.
scats in reply to
Your body won't adapt. The inflammation will build up and you will have to increace the pred again to cope with the pain. Please be careful, print out one of the tapering plans here and show it to your doctor. This needs to be done very carefully.
in reply to scats
I just downloaded it and I’m going to print it and take it to him. Thank you so much for the advice. I’m not a happy camper😊
scats in reply to
Remember too that we are all different and we all travel this journey at our own speed. It can be quite sobering to come here and read other people's stories, few of us travel a straight path. You will need the dose YOU need to suppress the inflamation. Good luck.
Even 0.5mg is too much for you at the moment but it will come eventuallyxx
in reply to Yellowbluebell
OK I think I have to agree with you after learning all of the information I’ve just learned. Maybe I should just go back on my three a day and feel wonderful again! I’ll get into see the rheumatologist on Monday. Thank you
I’m wondering if I should contact my doctor and inquire. I’m just not feeling well.
Yellowbluebell in reply to
I would seriously question your taper with whoever you can see first. 12 to 8 is a big drop.YBB
in reply to Yellowbluebell
My last visit with the doctor three weeks ago I just wanted to add that he looked at me and said six months. Again, there is a slight language barrier, but I assumed he meant that I would be on the MethylPREDNISolone for six months. Even that sounds Unrealistic from everything I’m learning from everyone.
Language barrier? Have I missed something on the way down the page?
in reply to PMRpro
Yes, he is from India.....
They are usually pretty good - but one of my hobby horses is that their English MUST be good enough to communicate with patients... I live in Italy and don't speak Italian particularly well since this is a German-speaking region. But I have had more cultural and linguistic problems in the UK than here I think.
My rheumatologist
So funny you said that. I’m waiting for my membership at the YMCA. I actually don’t think I can use my arms to swim right now but at least I can get in the water and move my body. My shoulder joints have a good range of motion I just can’t do anything repetitive. The pain returns the next morning if I overuse them.Thanks for the thoughts. We are on the same page.
Well, I feel fortunate to have discovered all of you! Knowledge is power. I’m tempted just put myself up another 2 mg on that alternate day and see if it makes a difference. At least that’s less than the full 12 a day on this alternate days.Thank you for your input.
I have to say - I would ...
Could you please fill in your profile details as this gives our members more information to base their replies and advice on. Thanks. YBB
in reply to Yellowbluebell
Absolutely, thank you...
healthunlocked.com/pmrgcauk... - this is a previous response I wrote - I'm still up and down, but still doing things I love when I can. Off to watch a rugby match today wearing two of everything and armed with a cushion - tomorrow will be a rest day! Best wishes
I was diagnosed Oct 18 - on 5.5 mg now - some aches now but life goes on - pace yourself and find some less active hobbies - life is different but still good - it takes as long as it takes - good luck
I'm just the same started pred on 5 September. This group really helps. People round you are sympathetic but don't understand how you feel.
I’m new to this: only diagnosed last week: as others have said it’s a big adjustment when you’ve previously been blessed with good health. Really appreciate all your help. X
I agree with you I was diagnosed in June it is pretty miserable I cut down on steroids because of imminent hip surgery but I have had to increase again . These last few weeks I have found chair yoga very helpful for pain & relaxation - I was always very fit loved exercise & walking - big life change but things will get better - I am 63 X
I empathise with you.in 2017 I woke up one morning a completely different person.The onset of P.M.R was so abrupt,so shocking I had thoughts that alien abduction is real! After all the diagnosis journey etc I was settled on an appropriate dose of prednisolone.Yes it controlled the pain and oedema but I just felt" wrong",heavy like I was wearing an old deep sea diving suit with hefty lead boots.Joined this forum,got advice and support.things really have improved a lot since then but some days this hefty feeling returns and restricts me.It just takes time to adjust to chronic illness especially with such a sudden onset and change from fit and healthy to something completely different.you just have to eventually accept and adapt and you are in charge ,you learn to adjust your dose,adjust your activities and rest etc.there is no other way,no cure or quick fix I'm afraid !So good luck and best wishes,you are not alone and I sympathise with our plight!
I wonder if your “1 mile walk”....is too much? It would be for me. After a year I can barely walk a couple blocks. My fatigue and muscles get to me. I do not have pain anymore but still must limit activity. I learned, from this site, that pacing is so important!
One thing worked for me
Take half prednisone in the morning and the other half at night
I have been reborn honestly, no more painful mornings
I was diagnosed with GCA in August of 2019, lost some eyesight and it turned my world upside down, boom!
This forum has helped me put each day, each misery and each triumph into perspective ...with compassion.
I was searching for the positive because I knew I would feel better and be able to cope better and by absorbing the experiences of others and their support....it has absolutely put me on a much healthier path, mentally and physically.
Stay with this group !! My heart goes out to you and I wish you the best!
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