Recently diagnosed... what is normal?!: Having... - PMRGCAuk

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Recently diagnosed... what is normal?!

Mkhj
Mkhj

Having struggled through Nov and half of December with pain and fatigue, finally gave in and admitted that my symptoms were not simply due to being out of condition ( which I probably am) ... but to something a little more serious. Blood tests confirmed raised levels and as I suspected, from my limited research, pointed to PMR. Reluctantly started steroids.. but could not continue as I was. I am a full time primary school teacher (infants) so took 1 week off before Christmas while I started my new regime. That coupled with 2 weeks holiday meant no work for 3 weeks. Returned today with boundless energy (steroids) but have come home exhausted. Just wondering what people’s experiences are. Does life continue unabated or do we need to make adjustments? I know this will be variable for everyone but just wondering what to expect. I started on the standard 15 and have dropped to 12.5. Just can’t wait to be off these tablets and naively thought this would be a pretty standard descent in a matter of months. I have read enough here to realise that is unlikely.

Thank you everyone for your advice. Have found out so much from your experiences.

25 Replies
oldestnewest

The one blessing I've found in being ill is that I wasn't struck until I was already retired. I don't know how I would have managed to continue commuting to my relatively stress-free office job. I think anybody with PMR who carries out the extremely demanding job of teaching young children is a hero. I used to be exhausted from just helping out on Tuesday afternoons at my children's primary school, and I know from seeing my daughter-in-law how much time is taken in preparation over and above the school day.

I can't really advise but it isn't going to be easy. At the same time, if you love your work the psychological boost of carrying on might well outweigh the drawbacks. There was an interesting post a few days ago describing how the writer continued to work full time but had learned to modify and reduce her domestic commitments. I've looked but can't find it - maybe somebody else will remember and give the link.

One thing that probably we all will agree on is that it is extremely important not to be in too much of a hurry to reduce pred. This is the only treatment available and, for all its downsides, it makes a huge difference to what is possible.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Welcome,

Ahh, the 64 million dollar question - what is normal? Well, not life as it was before! Certainly adjustments need to be made.

Have a read through the attached and it might help you get through this without too much angst!

healthunlocked.com/pmrgcauk...

Hi Mkhj

I am also relatively new to the PMR club, diagnosed in October 2018 and started on 30mg now on 13mg

There are others more wiser than I that will come along but just wanted to say I have made no lifestyle changes other than diet and increasing my exercise. I work full time in a Senior very stressful role that requires frequent interstate travel (I am in Australia) I am targeting being off pred in 12 months but it is only a target and in reality the duration will be dictated by my body’s response to pred, it appears everyone is significantly different and several on this forum had existing underlying conditions which I believe impacts their recovery time. A former user “rechen” posted yesterday that it took 11 months to get off pred so 12 months is achievable although it appears quite rare.

Good luck with with your recovery and stay optimistic but be realistic.

JQ

PMRpro
PMRproAmbassador
in reply to JohnnyQ50

"the duration will be dictated by my body’s response to pred"

No it won't, the pred is doing nothing but mop up the inflammation the underlying autoimmune disorder is causing. You will get off pred if and when the a/i disorder burns out and goes into remission. That takes anything from 2 year upwards with a median duration of just under 6 years. Pred just helps you have a reasonably normal life in the meantime. No more, no less...

JohnnyQ50
JohnnyQ50
in reply to PMRpro

Hi PMRpro

Quite right in that pred is only mopping up the inflammation , I was referring more to side effect set backs, seems everyone reacts differently. I have been lucky so far🤞

I am so sorry you have been diagnosed with PMR, particularly as you are still working. I don’t know if you have been told but it is very rare to get over PMR in less than 2 years and the average time is said to be 5.9 years. I have discovered it is not worth fighting PMR it will just always have its own way. PMR is life changing so you need to take things more easily. The pred is a wonder drug but the PMR puts up a good fight too. My rheumie gave me the impression with steroids I could just carry on as I did before - WRONG. You do need a certain amount of practise to be aware of what you should now be careful of doing. My rheumie did the worst thing by misleading me as I thought there was something wrong with me and I tried to carry on exactly as before instead of slowing down. I did look at my diet and gave up gluten and simple carbs as I was told they could cause moon face. It did work but it may just have been luck. Look after yourself and give yourself the occasional pamper, you deserve it.

PMRpro
PMRproAmbassador

The pred just manages the inflammation - the disease process is still chugging away in the background. The fatigue and sore muscles it will still cause if you overdo it must be managed with lifestyle changes, pacing and simply doing things a bit differently. You have a new normal to get used to.

healthunlocked.com/pmrgcauk......

Those who work have it hard - I worked for 5 years with untreated PMR but it was hard and I only managed because I was a freelance translator working from home - I chose my hours as long as I completed things to a deadline, I didn't have to commute and if I was tired I could just have a rest. I couldn't have gone out to work - especially full time.

Hi Mkhj, welcome to the club no one wants to join. You will find this forum extremely supportive and also a mine of information. I am a retired Headteacher of a Junior School (August 2015) and was diagnosed PMR in June 2017, though suspect I had it for a few years prior to this. It may well have been the underlying reason why I decided to retire early aged 57 who knows! I loved my job and had completed 37 wonderful years in teaching.

By time of diagnosis I couldn't walk, dress / shower myself etc. Scarey and I was delighted I had a diagnosis and could be 'cured'.

On taking my first dose of pred I had the 'miracle' effect and naively thought I had had a lucky escape, since I was back to near normal. I couldn't relate to the majority of posts and assumed others had it worse and I had been spared. By this time ( bored with my short retirement) I had landed myself a part time job providing advisory support to schools, working for a Music Hub in partnership with the Royal Opera House. Fortunately I was in charge of my own diary! I say this because it is the deathly fatigue associated with the disease / steroids that got (gets) to me! On some days for no apparent reason I can hardly put one foot in front of the other, not because of pain but fatigue.

It will undoubtedly be a struggle for you especially with the energy levels you need working with younger children, plus planning / prep, assessments, report writing etc. No one knows the unrelenting demands of teaching unless they have done it!

Assuming full time means permanent you will have certain rights re pay and conditions. This is at least a financial safety net that many with this disease do not have. Also your employer has a duty of care to make any necessary adjustments advice for which can be obtained through your working with occupational health department. You can request anappoitnment. They are there to support you being able to work with adaptations if necessary.

You may find you sail through this without need for adjustment but I suspect you are likely to hit a few brick wall periods due to the nature of the beast. My advice is to keep managers informed and educated about the nature of the beast you are dealing with and how it is impacting on your performance. Stress is a trigger so a stress risk assessment is advised.

Here's hoping none of this is necessary.

Best wishes for a 'straight forward' (if it exists) journey.

totally agree re the deathly fatigue. It is my biggest horror. You can mostly get the pain under control but the fatigue is a killer.

Mai45
Mai45
in reply to Marilyn1959

Marilyn, lovely to see you are back - hope you are feeling better.

Marilyn1959
Marilyn1959
in reply to Mai45

Thanks. Still struggling both emotionally and physically. Managed a kind of shower and hair wash with aid of OH, since care package for personal care didn't materialise. Have stitches out tomorrow and sons partner is cutting my hair on Thursday. All small but significant steps. Slowly gaining a bit of confidence in balance, though haven't ventured out of house yet. Tire easily though. Hopefully psysio will begin soon. Roll on March when I hope to have some independence back. Thanks for caring. X

Mai45
Mai45
in reply to Marilyn1959

Hang on in there, hopefully the spring will eventually arrive with more daylight and some significant steps forward for you x

Thank you all so much for taking the time to reply. Really value all your experience.

Welcome. Glad you found your way to this forum. The collective knowledge on here is amazing, and we will “get you” probably better than most, given our common ground.

I made adjustments along the way as necessary over the past year. I made lifestyle changes adopting a low carb, sugar and salt diet. Balancing activity and rest is key, as is listening to your body. If you can accept your diagnosis and think in terms of years instead of months regarding healing, it will be easier in the long run.

One other area that changed and required adjustments was my relationship with my husband, and one of my closest friends. My chronic illness and being in a role of someone who needs to be cared for at times, was new for all of us. We’ve worked things out, but not without continued communication.

I can’t imagine what it will be like for you working full time, especially in such a demanding profession. I would have a back up plan just in case. Ask anything.....we are here for you.

I feel for you I really do! I like you struggled through December feeling dreadful and then diagnosed with PMR and put in 15mg with major pain relief within in a couple of days! I then naively assumed life back to normality, sadly absolutely not!

I now accept totally have to take each day as it comes, not overload either physically or mentally. How I feel for you having to work as well. Please make sure you reduce everything else such as housework and put yourself above everything else, hope you have supportive people around you to help. I'd never heard of this ailment and quite a shock to realise how long term it can be. Good luck and take care.

I have been diagnosed nearly three years - but I definitely had it longer. I have worked through this (As a PA in a busy firm) - I'll be honest - its not the pain that has nearly killed me - once I was put on the dreaded Pred - its the fatigue - just totally speaking on a personal experience. The lower levels of the Pred really show up the fatigue too. You may be able to manage if you have shorter days in your job? This affects us all different - just to be aware as you are going along. Its the day to day stuff - the travel, etc, that is hard on the system. You may not be affected with this fatigue - but just take care in case you need to change things up in the future as you lower your Pred. Best wishes.

Several people have highlighted the variability of the illness; it definitely affects people differently. Aspects relevant in recovery include existing conditions that may independently be contributing to the level of inflammation and the amount of rest you can get. I think rest is essential.

Don't set your hopes on getting off steroids too quickly because it doesn't happen for many. I felt the same as you and looked forward to the 6 month deadline, then it became a challenge to the 12 month, now aiming for 18 but it not a challenge anymore , just hope! Everyone has different symptoms but pair with someone if that makes sense - GPs seem to me to just clutch at straws, some on here are the best experts as you will find out. Hope you feel better soon

As a Newby on here I would just caution against the desire to reduce pred too quickly. I did, from 20 to 12.5 in three weeks, but have had to increase because it was too steep a drop. The good advice on this forum is 'slow and steady'. Good luck and very best wishes.

Hi there

I was diagnosed two years ago, at the age of 53. I was getting so stiff I felt like a 90 year old and found walking up stairs a real challenge. I thought it was yet another pre-menopausal symptom at first. The prednisolone made me feel great in a couple of days. I too work full time, but you need to pace yourself. I meditate and do yoga most days, for stress, as I think stress has a big role in causing such illnesses to start. I try to walk every day, aiming for 10,000 steps, since it's a case of 'use it or lose it', but this is not always possible.

One big problem is that GPs tell patients they will be 'off the drug' in a year or two and as others have pointed out in their replies to you, this is so only for a very few people. You may well be one of the lucky ones, but it is best to pace yourself and not reduce too quickly - many of us have done this and it is like a game of 'snakes and ladders'- you climb merrily up the ladder by reducing your dose but, when a flare comes and you fell terrible again, the fall down the snake can take you back to square one again!

I am now on 5.5 mg following the 'dead slow near stop' method whereby you reduce by 0.5 mg a month. It is so tempting to think I could do it faster, especially when I fell ok, but I am trying to resist this for fear I'll be back up at 10.

Above all, be kind to yourself. I wish you the best of luck.

Woops! 'feel ok' not 'fell ok'!

Mkhj, Pollypuds and everyone else just diagnosed: I ‘m no expert but others who are have already replied with their usual good sense and expertise. But after over 2 and half years there are a one or two things I have learned for definite:

1: Don’t be in a rush to get off Pred, believe it or not, it is on your side. Yes, we all want to reduce to zero but do it by steady tapering and listening to your body, not some rigid pre-arranged schedule which may well come back and bite you

2: The fatigue will land when it chooses, so never be ashamed to say “Sorry, But I need to sit / lie down” and then do so, whether convenient for others or not. Because you look fine, sometimes other people won’t understand that you aren’t just lazy. You aren’t!

3: This board, and the experts on here, will make your life so much more bearable, partly because GPs only have limited discussion time, but mainly because the experience and advice on here is invaluable. (We can also cheer each other up, which is worth gold dust)

So you’ve found the right place, keep reading - and as Pam47 just wrote, be kind to yourself

P.S. Did anyone else’s screen turn Mkhj into MahJong? No? Just me then!

Hi Mkhj, and welcome! I was diagnosed only in late September/early October, and put on 15mg, now on 10mg but having to go really steady and not sure if I can drop again for a while. Like you I also teach, mainly junior children, was full time but now three days a week which has proved a god-send as even on three days I have had to take some time off. It has been hard to accept this illness and its limitations, for someone who has always loved walking I find I can hardly do this now, and only manage something dead gentle, not like I used to, which is depressing. Some days I'm OK but others I can get quite down. While working is hard, it does help to keep the mind active and off the illness, and trying to get out and about to chat with others is important for me. Although some days it's a real effort! There's lots of advice on this forum, and it's brilliant, so do keep with it and let us know how you get on.

I agree Lonsdale lass that working part time offers a positive focus and also provides a sense of purpose, as well as a sense of self worth and achievement. This has allowed me to focus on the positive rather than negative, so I have considered myself very fortunate. I can't imagine coping with PMR and working full time though.

Me neither. Too much stress!!

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