Quandary?? : I've been constantly on 3mg this year... - PMRGCAuk

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Quandary??

diana1998 profile image

I've been constantly on 3mg this year apart from 3 weeks when I made it to 2.5mg after 6.5 years. Couldn't sustain it though as I had nil energy. I had a synacthen test last autumn when I was on 3.5mg which they said was good. My problem is I feel really stiff. I can get out of a chair as I have physio exercises to strengthen legs muscles every 4 weeks but find the stairs hard especially at night when I'm tired and I walk stiffly I feel. I don't have pain, esr and cpr are low so could be much worse. If I take paraceptamol the stiffness eases, but don't want to live on that. I feel very tired and sleep for an hour at 4pm. Friend from Scotland flew down for 5 nights during the heatwave and with all the trips out, cooking and seeing friends I'm only just recovering. Should I increase pred for a few days? or ride it out feeling good for nothing and hope for the best?

54 Replies
PMRpro profile image
PMRproAmbassador

The synacthen test only tells you your adrenal glands as CAPABLE of producing cortisol when kicked hard - not that they are doing so reliably day to day - there are several factors involved that can be out of kilter.

Most likely you are just hovering at the borderline of controlling the PMR and the adrenal function. Only a continuing too low dose of pred will improve the adrenal function and it may take a while. If the stiffness etc remain stable your current dose is probably OK - but if that gets worse you are possibly heading for a flare of the PMR.

diana1998 profile image
diana1998 in reply to PMRpro

Thanks very much for fast valued advice. Will see what happens. Have only had one flare at the beginning of my journey. Hit me in the spine and I couldn't move. My rheumie's fault dropping me 1mg every 3 days when I was an ignorant newbie and didn't know any better! ☹️

PMRpro profile image
PMRproAmbassador in reply to diana1998

I'd best keep quiet or I'll be banned for bad language!!!!

borednow profile image
borednow in reply to PMRpro

Me too!!

tangocharlie profile image
tangocharlie in reply to PMRpro

ditto!

HeronNS profile image
HeronNS in reply to diana1998

😱 That must have been awful. I went through a stage of feeling stiff the way you describe and I have to say nice long bedtime soaks in a warm tub with Epsom salts and maybe a bit of essential oil, like lavender, really helped me. I'd then retain the warmth by going straight to bed and would feel much better the next morning. Maybe not the best technique in the middle of summer heat, but something to keep in mind if you're still feeling the stiffness when wather gets cool again.

Also, have you ever tried tai chi?

diana1998 profile image
diana1998 in reply to HeronNS

Could never get in and out of a bath!! I think I couldn't balance for tai chi. I have a monthly physio session to strengthen the leg /hip muscles which I enjoy and do every day. Started off very carefully as the physio's Granny had pmr at 86 so she understands. Granny pulled down from 5mg to zero far too fast and now feeling rough again and she was seeing Dr to go back on pred. Poor lady. Recommended the DSNS and no more than half mg. Some Dr 's are so *******ignorant.

PMRpro profile image
PMRproAmbassador in reply to diana1998

Especially for an 86 year old!

diana1998 profile image
diana1998 in reply to PMRpro

Poor lady was doing well on 5mg and still playing golf. But all ruined now for her for now. No joke. 😡

PMRpro profile image
PMRproAmbassador in reply to diana1998

At that age the likelihood of adrenal function getting back to good is low - many older patients are adrenally insufficient anyway. It's like them medicating high BP until the BP is low enough for a middle aged patient - often reduces the blood flow to the brain and the feet and legs because the BP isn;t high enough to force blood through hardened arteries. So they become unsteady and tend to fall ...

diana1998 profile image
diana1998 in reply to PMRpro

Oh dear. My GCA cousin has just hit zero and ok so far. But pmr seems harder. She's a mere 76.

PMRpro profile image
PMRproAmbassador in reply to diana1998

i think PMR is harder too

Nextoneplease profile image
Nextoneplease in reply to PMRpro

That’s really interesting Pro, thank you. I’ve often wondered about this issue. Sometimes I don’t think we (or the docs) pay enough attention to the body’s coping mechanisms….

PS Replying to your post about blood pressure!

PMRpro profile image
PMRproAmbassador in reply to Nextoneplease

The vascular surgeon my husband worked with in Scotland used to wax lyrical about that - he favoured keeping BP reasonably high but now they want us practically hypotensive! In the UK it is seen as good if your BP is low - here they take it seriously and like to be sure you aren't going to keel over!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Late hubby was once told “your BP can never be too low!” I just shook my head in bewilderment…

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Exactly - they do seem to want to get to silly levels! It is reckoned a LOT of falls are due to too low BP in the elderly.

humlies profile image
humlies in reply to PMRpro

This is really interesting - I learn more every time I go on this site. Thank you PMRpro yet again!

HeronNS profile image
HeronNS in reply to diana1998

Bath - fair enough. But try another way to get really warm, (when the weather is not hot and humid). However, tai chi is another question. I did learn it when I was relatively healthy a few years ago. However I had to stop for over a year because of injured knees. When I took it up again in January this year I could hardly manage. But I found a handful of good videos to watch and follow along to, including one with old people, and did my best. Then after some weeks, or maybe months, I found I could actually balance better than I'd ever been able to, just because I went through the sequence three times, once a day (takes about 20 minutes) and kept at it. I know it's doing me good, but it did take persistence. Even the attempt, if not the eventual accomplishment, is good. But if you haven't done it before it's good to take a class if you can, and be taught how to perform the moves without injury. But even so there are so many instructional videos that one can actually safely learn each move on one's own if need be.

Here are the older people:

youtu.be/3Vk9eTtZgyg

diana1998 profile image
diana1998 in reply to HeronNS

That looks lovely and very relaxing. I could do that apart from the one legged movement. Will look up some videos. Thank you so much. Glad it's really helping you now.

HeronNS profile image
HeronNS in reply to diana1998

I think I can find a set of basic instructional videos and will private message you the links when I locate them. Just like pred tapering - slow and steady. When I was recovering from my knee injuries and had lost so much muscle strength, and also dealing with a bit of hip bursitis, I basically just lifted my foot off the floor but didn't manage to raise the leg very much at all. It was quite astonishing to me how quickly, in retrospect, I improved. Quickly being a relative term. I suppose it took several months and at first I didn't even notice I was getting better at it!

diana1998 profile image
diana1998 in reply to HeronNS

Thanks so much Heron. Glad it's helped you so much.

Haha! Probably nothing in comparison to my language at the time. OH thought I was dying and called ambulance. They said call your GP, we don't know anything about pmr! So I took 2mg of pred immediately and flare slowly subsided. Terrifying.

PMRpro profile image
PMRproAmbassador in reply to diana1998

I did call an ambo when my low back seized up one Monday morning. I managed to get to the dining table to be able to open the main door and let them in. ended up in the ED for the second time - first time I was admitted.

How could a rheumy be so stupid?!?!?! Poor you! How frightening..

cycli profile image
cycli in reply to Bedwell

seems par for the course to me.

Bedwell profile image
Bedwell in reply to cycli

My rheumy has signed me off and made an appointment for June 2023!!!!! And I’m still struggling to reduce from 15 mgs a year ago. ! At the moment alternate days 9.5 and 9.0. Fatigue!!! Tell me about it. !! Age darling… people say. ! AmOnly 84 for goodness sake!

Onwards!!!!!!

cycli profile image
cycli in reply to Bedwell

disgraceful but seems common. So many opinionated and arrogant rheumies.

Bedwell profile image
Bedwell in reply to Bedwell

A relation has just asked me what is the worst that could happen if I just stopped the pred altogether ??? I said I thought A and E!! But people who haven’t ever had steroids just don’t understand!!

PMRpro profile image
PMRproAmbassador in reply to Bedwell

The WORST from stopping pred suddenly? Depending on the dose - life-threatening. If adrenal function is not recovered and you stop the pred that is replacing it, then it puts you at risk of an adrenal crisis. Unrecignised and untreated in a timely manner, that can kill.

Amkoffee profile image
Amkoffee in reply to PMRpro

Yes it can. I had my first crisis ever when I started running a fever with covid. But I had what I needed to treat it and all went well.

PMRpro profile image
PMRproAmbassador in reply to Amkoffee

And you recognised it - someone alone, becoming confused and sleepy might not, collapse and not be found until they were very sick. Or worse.

Amkoffee profile image
Amkoffee in reply to PMRpro

This is true. Because I had the diagnosis of adrenal insufficiency I was instructed on how to treat a crisis.

diana1998 profile image
diana1998 in reply to Bedwell

I keep telling OH a serious adrenal crisis! He still doesn't get it as never has to even take a paracetamol..lucky so & so!! 🤪

Bedwell profile image
Bedwell in reply to diana1998

My darling man died nearly 20 years ago. I did have 40 years with him and I have his 2 darling daughters… BUT….!!!

Maisie1958 profile image
Maisie1958 in reply to Bedwell

❤️ x

Bedwell profile image
Bedwell in reply to Maisie1958

Thanks for that!

I think you are doing well managing this tricky end part. Everybody thinks it is going to be easy but what with the recovery of the adrenal function and the remnants of PMR, it is so tricky to figure out what is going on. The good news is that 3 mgs is a relatively harmless dose, so you can take your time. I agree with all PMRPro says er always!

Thank you.... Yes, hooray for this knowledgeable forum and it's experts.

Mine is still not the end part!! Some way to go from9.. still don’t understand how I reduced from 15 to 0 in 6 months in 2017!! The difference being… I had 2 hip replacements during that time!!!!!

PMRpro profile image
PMRproAmbassador in reply to Bedwell

Every stage of PMR can differ - especially between 2 episodes

diana1998 profile image
diana1998 in reply to Bedwell

Oh Wow!!

Hello Diana,

Our stories are very similar though I have only had PMR for 5 years. The stiffness has always been a part of my journey. It may be that you have an underlying condition (PMR usually overlays other things). Apparently I have inflammatory arthritis with PMR on top. It's all very confusing as I thought PMR was a type of inflammatory arthritis? Anyway I take 10 mgs Amitryptiline every night ( the rheumatologist who prescribed this said it woould help with sleep and also pain) plus 15 mgs of Meloxicam which is suppoed to help with the stiffness. I am on 3.5 pred and trying to drop to 3. Hope this helps?

PMRpro profile image
PMRproAmbassador in reply to Louisa1840

PMR is an inflammatory VASCULITIS, blood vessels, not joints (arthritis).

Louisa1840 profile image
Louisa1840 in reply to PMRpro

Thank you Pro that explains that. There seem to be so many conditions out there under Umbrella terms like "arthritis".

PMRpro profile image
PMRproAmbassador in reply to Louisa1840

More than 100! And people don't realise the difference between OA and RA!

summahealth.org/flourish/en....

diana1998 profile image
diana1998 in reply to Louisa1840

Thanks. I sleep really well luckily. Amitryptoline which I tried in the beginning never helped me. My stiffness is ok once I get going. Just annoying.

hi diana1998. I am struggling with an ever stiffening back at present and it is probably muscular pulling the spine and causing pain. Hot shower helps. The problem is probably related to PMR which reduces the oxygen to the muscle causing it to contract and apply force to spine putting pressure on the nerves. Our lessening activity levels don't help and it is a downward spiral as the less we do encourages the muscles to close down further. I think the main culprit is the longissimus.

Stiff back is awful. Maybe a good massage might ease it.

I think if paracetamol eases the stiffness then it may not be just PMR. We have stiffness in our muscles and joints for all sorts of reasons. I would rather take paracetamol than increase the Pred, it’s a much safer drug, as long as you don’t take more than is advised. I am only 18 months into my PMR journey and find it so hard to know what is PMR, what is adrenal insufficiency, what is just getting old, what is doing too much and I come to the decision each time that it’s probably all of those things!

You are so right about this. I've had PMR for 5 years and I will never know how much of my fatigue and other aches and pains are just getting older or, as you say, doing too much.....

PMRpro profile image
PMRproAmbassador in reply to Predsharer

Given the choice of 1-2mg more pred or paracetamol on a regular basis - pred for me every time,

That’s interesting. I understand the use of paracetamol better than I do pred. I’ve used paracetamol throughout my lifetime sparingly, but with good effect. Not now though it just doesn’t touch anything PMR related. I have had awful side effects from Pred and only now in low doses do I manage to sleep for anything like the amount I used to. I have no side effects from paracetamol and can stop it and start taking it whenever I feel like it, which I can’t do with Pred as I am dependent on it. So I would always advise people to take paracetamol in the short term if it works for them, rather than up the Pred, but we are all different and have had different experiences.

PMRpro profile image
PMRproAmbassador in reply to Predsharer

But it will almost NEVER do anything for PMR pain, it doesn't have the antiinflammatory effect.

Predsharer profile image
Predsharer in reply to PMRpro

My reply was only in respect of diana1998’s post, that indicated she had experienced some relief from her stiffness, by taking paracetamol.

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