PMRGCAuk
7,233 members11,772 posts

PMR or withdrawal pains?

I have posted before about my reduction attempts, where I have hit a flare when trying 7mg, having had PMR since 2014. My recent reduction, now coming up to 6th week, has been using the slow plan posted on here (Dorset Lady, thank you). The first three weeks were fine, minor twinges, no more, but then during the fourth week pains hit me in my thighs, buttocks and backs of knees, but I just don't know how to tell if they were/are withdrawal or PMR pains coming back. Rather than move onto the next week of the reduction plan, I repeated week four of the plan. However, now I am unsure whether to carry on like this (five days on 7.5 mg, two on 8 mg) or to play safe and go back to all 8 mg which I know my body was happy at, no pains as now (even though my rheumy is expecting me to be down to 5 or 6 mg by next appt around May!) These pains start at around 5 am and don't ease until mid-day when the steroids kick in, taken with my breakfast porridge, so I am leaning towards the pains being PMR lurking, rather than withdrawal pains, but I just don't know! I would be so grateful for any of you lovely clever, experienced PMRers for your pearls of wisdom, please. Should I carry on with each week 8/7.5mg mix as in the "plan" or revert back to all 8mg where I was fine before? This seems to be "my level". With apologies for repeating my history yet again, I am my 95 year old husband's f/t carer, (Alzheimer's and stomach cancer) and so stress doesn't make reducing any easier, but there are a lot of you with far bigger things to deal with so not asking for sympathy, just some friendly, helpful advice, please! Thank you! Lin-lou.

41 Replies
oldestnewest

You might want to try taking all or part of your dose before you go to bed a tight to ease those morning aches.

If it was me, I would sit for another week at the last comfortable level, and then try reducing by 0.5mg from there using DSNS.

As for your doctor, they aren't helping you out at home, and they aren't suffering your PMR.

Take control and go slow. It's not fast if you have a flare and have to go way back up the ladder and start the taper all over again.

Stay strong.

4 likes
Reply

Thank you for your input and comments. Just having a response helps so much. Yes, been up the taper ladder about three times now!

2 likes
Reply

Hi,

Would think you’re just on the cusp of your optimum level of Pred. So personally for the sake of a few weeks I would go back to 8mg and get stable again.

Your Rheumy may not be happy, but he’s not living your life is he? And, as we all know 0.5mg can make a big difference at times.

The difference between 8, 7 or 6mg is very little side effect wise, but can make a lot of difference to your health. If he’s worried about that then show him this -

See attached practicalpainmanagement.com...

Plus you are at the level where your adrenal glands need to kick back in so slowly, slowly is the best option .

healthunlocked.com/pmrgcauk...

3 likes
Reply

Another big thank you to you, DorsetLady. Like PMRPro, I don't know what we would do without your help and advice! PMR takes us down a very long, lonely road at times, and meeting with you two in particular amongst others, makes that journey that bit easier to travel. I haven't read your link yet, but will save it to read later, thank you so much. I may have given the wrong impression of my Rheumy by writing that he hoped I would be down to 5 or 6 mg. It was a passing statement as I was leaving so it could have been meant as a bit of optimistic encouragement! He did once say that 8 or 9 mg is not a huge amount to be concerned over, but he would be if I was on 30+ as some patients are. I'll soon find out what his feelings are when I get my next appointment! Yes, I'm back to 8 mg tomorrow as also advised by PMRPro. I could hug you two ladies! It is so comforting having you to turn to on here. Thank you so much again.

4 likes
Reply

Just read your links, thank you!! So good to read "real" information. It really does help and explains so much in the way our bodies work, or don't! I have saved both articles to read over again when I have a quieter moment to myself, so many thanks.

1 like
Reply

Steroid withdrawal happens soon, first, second day - and the slow reduction plans are aimed at reducing that effect anyway.

This is your body telling you that you are trying to force it to accept a dose that is too low for the amount of inflammation your body is producing. Go back to 8mg before you need far more.

Your rheumy is in cloud cuckoo land. Is your GP more realistic? He must know your situation - and you are going to need enough pred to manage your symptoms to cope with your life requirements.

And how old are YOU?

1 like
Reply

Thank you so much PMRpro. I knew I could rely on you and you have reinforced my decision (after I posted) that to go back to 8 mg daily would be the only way to go. I just needed your expert advice as dealing with this on my own, as others do, can be extremely worrying. My GP is a new one to the practice and since being referred to the Rheumatologist early in 2015 my PMR has hardly ever been mentioned at surgery. I must say, my Rheumy has an excellent reputation and I think he does have a vague idea of my home situation but, as often happens, the appointment seems so rushed. My age? I turned the big 80 in August so not a spring chicken, only in my mind! Thank you again, so much!

2 likes
Reply

“ I think he does have a vague idea of my home situation ”

I’ve been a carer for mother in law and father in law, both with dementia, luckily at separate times. What I realised was that others really do NOT know how impactful being a carer is. I was a nurse and I appreciated carers, I thought I knew how difficult it was, but I didn’t until I put on those big carer boots! Thinking for, planning, supervising another person is a full time job plus some....disturbed nights, the physical stuff, and the lack of ‘me time’ assault you physically, mentally and emotionally. Professionals can make life difficult too, only half listening, prescribing the wrong things, arriving at the wrong times, making more work for the carer when I’m sure the intention is to support and relieve. Plus you have the huge strain of roles changing as a loved one changes personality, and with dementia they’re not always sweetness and light, they can be quite horrid at times, and we just have to count to ten.... again!

So for your consultant to have a vague idea simply isn’t enough. He needs to be made aware that actually you have two full time jobs, one for 12 hours in the day, one for 12 hours at night. It’s often said on here that those who still work need higher levels of pred. Plus my dear, you are 80! (I was in my 40’s and 50’s when I was caring, plus I didn’t have PMR)

So please take a few minutes to bullet point all the stuff you have to accomplish in a week, and give it to your consultant when you explain why you’re still on 8mg instead of his predicted 5/6mg. If you can’t function, just who is going to care for hubby? He really has to see the bigger picture.

7 likes
Reply

What a lovely reply, thank you Soraya, so very understanding! Your description gives such an accurate picture of how things can be! Living with these sort of events every day tends to become "the norm" and true feelings get bottled up and hidden behind the face that others see. When I go for my Rheumatologist appointments I always take notes of my PMR progress or otherwise and next time I will take your good advice and make sure he is more aware of the situation I am in and the big impact it has on my stress levels, tiredness, etc. Many thanks again for replying and for your kind support.

1 like
Reply

You’re spot on Lin-lou, we do bottle it all up, we put on the “I can cope” facade, as that’s what we think other people expect of us... to cope. But sometimes it gets bl🙄🙄dy tough. I’ve often said that if all carers nationally went on strike, we’d bring the government down overnight! And probably bring the country to a grinding halt. We are cheap labour doing one of the toughest jobs ever invented.

You might find that a carer’s support group helps, much like the PMR groups, it’s good to be with other people who ‘get it’. Where you don’t have to bottle it up, and can tell it how it is and people won’t judge you. There are also groups or day centres for the ‘patient’ which could give you much needed respite. I also attended one group for carers and cared-for, which was easier logistically, but doesn’t give you the ‘time off’. Ask at your GP surgery or phone local social services for contacts to these groups.

And use this forum to vent as well. This is a safe zone. Include your stress as a carer which is valid, as you come as a whole person with your circumstances, and your PMR and carer role are indivisible...which is what your rheumie needs to grasp.

4 likes
Reply

Thanks for more understanding. To explain a little, I have been my husbnd's carer for several years now so have slowly found that there is help/support out there, when you ask!! Trouble is, my husband doesn't want to go out (loves his home!) and won't even consider a support group, and yet he has never wanted me to go out on my own! However, with help from the Alzheimer's Asscn. three years ago who persuaded my husband that "all carers must have a break", I was granted a sitter service which enables me to go out for three hours one morning a week and this is my life-line. I usually see a couple of friends, separate weeks, and the laughter we share is the best tonic ever. We've recently also discovered the bliss of massage so now added to shopping and coffee breaks, I have another kind of wonderful "me time" with my friends, maybe once a month if possible. I do have other health issues of my own but even they can be forgotten on a massage table! So, life is not all doom and gloom and I only have to read posts on here to remind me that my "problems" are minor compared to what so many others have or are struggling with. Once again, many thanks for your time in replying and for your suggestions, too.

2 likes
Reply

Oh yes, I well remember those “I’m not going out” feet stamping tantrums! Very frustrating.

Very pleased to hear you’re in contact with the Alz Ass. That 3 hours must be bliss. Enjoy!

I wish I lived round the corner from you to lend a hand. Currently I’m ‘keeping an eye’ on two elderly neighbours and my own Dad (of course). I think it must be in my genes, I’ve lost a lot with PMR, but this bit of me won’t die.

Reply

It can be a little like living with a child again sometimes, which is really very sad. That's kind of you to want to be of help to me if you could, although I don't know how you'd fit it in with all that you do. Sometimes it almost seems that certain people are on this earth to care for others, in a multitude of situations, not just as in yours and mine. Also, once in that role, it becomes a part of you, I think, as natural as eating and breathing in some ways. Just occasionally you want and need to run free...

2 likes
Reply

Surely you are a saint taking care of 2 people with dementia. My mother will be 95 in May (G-d willing) and she is rapidly declining mentally and she is aware of it. Yesterday, she said she thinks her boyfriend is tired of being with her since she’s not quite right! He’s 90! I was so sad. She has live in help and when my sister and I relieve the women, we are emotionally drained and in need of care!

2 likes
Reply

A saint? Naaah! LOL definitely not.

My Dad describes me as ‘the practical one’ :) My brother got the brains. I got the common sense ;)

Bless your Mum and her ‘toyboy’. How lovely that she has a man friend :)

2 likes
Reply

Boy toy may walk because his wife had dementia for years and my mom fears he is becoming aware of her decline and doesn’t want to deal! Told her nothing lasts forever and to toughen up. She was grateful for the advice!

1 like
Reply

:(

Reply

There is little I can add to Soraya's brilliant post - just tell him this is what you need and would he please accept that. No-one knows what carers have to deal with - even the professional variety who can go out of the door and switch off.

And frankly, with the best will in the world, the pred, especially at this level, can't do you much harm for the next 10 years or so. I do get annoyed at doctors trying to rush patients in their late 80s and early 90s off pred because of the long term risks!

4 likes
Reply

More thanks! All this support is doing me the world of good! Had to smile at "can't do you much harm for the next 10 years or so" as these are my thoughts exactly. I'm 80 for goodness sake! I want to be on a "reasonable" dose of steroids, pain-free, with normal energy levels and feeling good in myself for whatever number of years i may have left!

7 likes
Reply

Hurrah!

Lin-lou tell your consultant exactly what you wrote there ^^^

I defy him/her to come up with a suitable counter argument ;)

1 like
Reply

I am prepared, Soraya! 🙂 I have gained so much from these posts and comments from you lovely people. Thank you so much!

1 like
Reply

So glad you’re gaining perspective from all the responses! Yes, we feel pressure to be model patients but putting our ourselves first must become our primary objective!

1 like
Reply

Yes, Sandy, everyone has been really helpful and encouraging. Another thought along your lines of model patients, my generation always believed that doctors were gods and were all-knowledgeable and we patients never needed or wanted to question anything. It's hard to muster up confidence now at my age to voice any thoughts or opinions. I'm sure my Rheumy will be kind enough to listen, though, once I get started. Probably won't stop when I do!!

Reply

Meant to also thank you for the explanation re steroid withdrawal and how it happens soon into a reduction. That had really been puzzling me, how to tell the difference between that and PMR pains. That's sorted that one out for me, now to get myself back on an even keel.

1 like
Reply

Cloud cuckoo land is a good one! Thanks for the laugh at 4:28 am waiting for 5 am Pred dose!

Reply

Hello Lin-Lou with all your responsibilities I would stick at the 8 mgs where you feel fine. Your challenges are every bit as big and important as anybody else’s on here. You need to take great care of yourself and follow your sound instincts about reducing. Resting at a good dose has great benefits. Blow the doctor’s expectations. This is your life and your body.

Reply

Thank you Sheffieldjane. Agree with your advice about sticking with 8mg. Now taken that for two mornings but will have to see if the pains subside at that. If not, will think about upping to 9 mg but don't want to, (none of us want to increase!) I'm presuming a week at 8mg will be long enough for getting back to my previous no-pain level.

Reply

Sometimes just 3 or 4 days at (say) 5mg above where the flare happened is enough to clear things out and then you can drop back to your chosen new dose.

1 like
Reply

Thank you, PMRPro. You must have been reading my mind! I had upped to 9 mg today but was wondering if I should go to 10mg as that has been the dose that 'zapped' previous flares. It is so disheartening to go up instead of down, or even to stay at a lower level reached, but it has been said on here many times, patience is the key...

1 like
Reply

You have to look at it the other way round - you overshot the finish line. It isn't failure, it is a readjustment...

1 like
Reply

More good advice, thanks! Made me feel better! Also, at least I seem to have found my "comfort zone dose" which btw is nearer 9 mg not the 8 I had been on about. Discovered this after reading all my history notes and it revealed that at 8 mg on a couple of occasions I was ok for about three weeks but then something triggered and a flare happened. At 9 mg, however, I have been pain-free, no stiffness, very mobile (can even crouch down to the washing machine!) and felt able to tackle most things with more energy and enthusiasm. Think I will write a "summary"of doses and their effects on my well-being next time I have an appointment with my rheumatologist!

1 like
Reply

Quite a few people keep a diary with details of dose and symptoms. Can come in very handy in situations like this. Maybe even alternating 9 and 8 may be enough - and it gives a mental boost.

1 like
Reply

Many thanks, PMRpro and apologies for taking up some of your weekend when I'm sure you have better things to do! No need to reply to this one! Time for yourself, hopefully.

Reply

Like the others I'm a patient. And like them you will find me here most days unless I'm travelling. I'm on holiday - but you can't sit and do nothing - and reading is reading!

1 like
Reply

Wonderful replies here, Lin-lou, it's heartwarming to get responses from those who know - just to add my own experience looking after four 90yr+ old relatives for several years, two with dementia, which I am sure is the reason I have PMR today. Loneliness, anxiety, sheer hard work and the constant emotional toll of watching your loved ones slowly disappear into their illness - these are the unseen effects. You're doing marvels looking after your husband, another unsung carer - as has been suggested make sure it's in your patient notes.

One other suggestion: if you are on enteric coated pred you might try splitting the dose, say 5mg/3mg, or 6mg/2mg morning/evening if you go back to 8mg daily, which might take care of the 5a.m. pain. I've found it to be successful, but we're all different! Hats off to you, you're not alone :-)

2 likes
Reply

Many thanks, Slowdown. Sorry to hear about the caring role you've had, which sounded like a real tough time and well done you for all your care. I have often thought, as you did, that the stress that comes with this could very well have been a big contributor to the onset of PMR. Who knows, but I really feel that it isn't going to go away while circumstances stay as they are. I'm not moaning here, as thankfully I have an up-beat, positive, contented frame of mind most of the time, but I am just "sympathising" with you here!

Regarding the split dose suggestion, thanks again. However, I have decided to stay on 8 mg taken as I always have with my breakfast porridge (I had a stomach bleed early on and feel the porridge helps!) I'm just hoping that it will be enough to dampen things down to "normal" in a few days. I don't think the pains were quite so bad this morning after two days on 8 mg, and fingers crossed it's not just wishful thinking...

2 likes
Reply

Another Saint shares experience! Taking care of 4 relatives period is beyond my comprehension! It’s hard for me to visit 4 ”normal” relatives, let alone take care of them!

1 like
Reply

Far from a saint Sandy! My extensive 'cussing' vocabulary helped a lot (and expanded!) I hope you are doing well, all the best.

2 likes
Reply

You are far too humble! Thanks for asking. I’m doing well...officially sold my business, working on my charity, dating a lot and feel used to twists and turns of PMR despite the challenges.

1 like
Reply

Dear Lin Lou,

Last year I went down to 7mgs. OMG I never felt such pains in my life. It was pretty immediate. Altho I let it go two days. I felt like I had heavy weights attached to my hips and thighs pulling me down. I could not move my arms and I could barely walk. On the third day I made it to the doctor with a lot of help from my husband. I think he kind of panicked when he saw how bad I was. He put me up to the 20mgs that I had started my reduction at. And I spend all this time getting back down to the 7 that I am at now.

I feel fine now at 7 and really feel that I could reduce a lot more ( of course the mind is willing and the flesh is weak) But my point is this. I would suggest to you to definitely go to the mgs that you were comfortable with before you get to the point that you have to go higher than that - and your journey will become so much longer. I have always read that you should nip pain in the bud so that it does not get so bad that you need stronger methods to control it. I think your doctor was probably just encouraging you rather than directing you. I just told my son I was doing well on 7 mgs and he said "Great Mom, soon you will be down to 6 then 5 and then off them." Not as easily done as said - but meant to give me an encouraging boost.

1 like
Reply

Oh my goodness, Alfryd, what a horrible experience you had (similar to my original onset) and so disheartening after reducing all that way. It is a big temptation when you get to a point of feeling well, no pains, and more energetic, etc., to think you can easily drop down, mo problems! Once or twice I've even thought the PMR had "gone" as I felt so good, but no such luck. I'm so glad you have got down to 7 mg again. Take it easy!! Yes, I think the same as you, that the Rheumy was most likely just giving me an encouraging nudge, especially as I'd had a couple of flares previously.

Good luck when you go for your next reduction!

Reply

You may also like...