Accidental reduction?

[Nextoneplease]

Hi all😊

I’ve had a very busy and stressful few months so have stayed on 12.5mg prednisolone daily for a couple of months. Tried to reduce to 12 a few weeks ago but had such significant discomfort that I put off the effort until after Christmas.

However….had new little granddaughter and family to stay this weekend, rushed around a lot, but in a positive way, and for the first time ever, this morning I forgot to take my pred! Only realised at around 5pm when I came to take some other meds. I hadn’t noticed anything….After brief debate with myself I took 11mg and got on with the day. All seems well so far (apart from feeling flu-ey and achey).

So the question is: tomorrow should I revert to 12.5, or is this likely to be my opportunity to reduce to 11, albeit not deliberately?

Any ideas welcomed ( I know no one can be certain…..)

Many thanks, Nextoneplease x

[SheffieldJane]

Don’t underestimate the effect of happy hormones that flow from a new baby in the family! You maybe ready to drop down but perhaps half a mg. The flu feelings and the aches are telling you that. Congratulations! I am waiting until after Christmas and all that comes with it, including my two adorable little morale boosters, until I taper again. I know me. Patience wins this game.

[Nextoneplease in reply to SheffieldJane]

Thanks SJ 😊

That’s kind of what I’m thinking really!! I’m so tempted to try to drop to 11mg but truly it was the most amazing weekend, and not typical of life in general at all. And I want to be okay for when they hopefully return at Christmas (with in-laws in tow). So yes, I guess I should be patient - it was only about two weeks ago that a 0.5 drop was next to impossible…..

Hope you have a wonderful Christmas 🤶 🤶xx

[123-go in reply to Nextoneplease]

Congratulations on the new bundle of joy! 🥂You are riding on that wave of happiness just now and I agree with SJ that you should take care and that the fluey feeling should be a warning. Christmas is only three weeks away and you're going to be busy with preparations for extra guests and more going on when they are all with you. Personally, I wouldn't take the risk of reducing right now.

[SheffieldJane in reply to Nextoneplease]

Wishing you a joyful Christmas - keep it serene - my advice to myself. 🎄

[DorsetLady PMRGCAuk volunteer]

12.5mg……and stay there until after the festivities….. and try not to forget again! 😉

[Charlie1boy]

Difficult to say really, but I suspect DorsetLady’s advice is probably the most sensible.Having said that, two of my reductions came about because I forgot to take pred. But they were both at significantly lower doses. Personally, I don’t think it’s that good an idea to reduce before, and during Christmas; too much stress!!!

Good luck whatever you decide to do.

Best wishes

Paddy

[Nextoneplease]

Thanks for all your advice 😊 I’ve taken 12.5 but now feeling pretty disappointed with myself…..Don’t know how I’m ever going to reduce at this rate as my life is always pretty busy. Have to book cataract op for after Christmas (hospital is chasing me!) plus will still be on nanny (granny) duty etc….

It’s such a stress in itself, having this need to reduce hanging over you all the time, isn’t it? And that’s without looking for zero, just the lowest effective dose…..😣x

[Grammy80 in reply to Nextoneplease]

Don't be disappointed in yourself~! We aren't in a race, we are trying to live the best quality of life we can....and it is a fact we need some medications. Right now I am on 20 mg and am feeling such improvement, I don't want another big reduction. I'd happily try to go down to 17.5 and then stay there for a month. I can already feel the effects of overdoing but I'm just going to have to find the right balance of DO and then REST. I see the rheumy tomorrow and I hope he thinks my idea is better than I suspect his might be.

I also wanted to share that one day I looked out and it was snowing, without a thought, I grabbed my roller and went out walking in the drive...I just get excited at first snow. Afterward, I realized (at that point) I hadn't gone walking anywhere....happy and excited vibes can really take over our bodies....for me that is why positivity is so important...those negative ones can take you down. Slow and Safe....the finish line is just feeling good even if 'it is with a little help from our friend pred'. 🎶🎵🎶 💖

[Nextoneplease in reply to Grammy80]

Thank you Grammy - love your story about first snow! ❄️☃️xx

Yes, I know QOL is so important, it’s why I’m still on 12.5mg, but I just can’t see how I’m ever going to reduce, without at least risking some pain and/or exhaustion etc. And I’m never going to want that. How do people pick their time to reduce?? 🤷‍♀️

Think I must be on a slight downer today - sorry xx

[PMRpro Ambassador in reply to Nextoneplease]

I think learning acceptance of where we are is needed - because we have to do our part too, It ISN'T just a case of take a pill and you'll feel better. You have also to adjust your lifestyle as well. because if you don't, you increase the risks from other aspects of the management too.

[Nextoneplease in reply to PMRpro]

Sorry, PMRpro, I’m not sure I quite understand 🤔 Do you think I’m doing too much? And if so, what am I risking? And how does one know when to reduce, if not following rheumatologist’s plan? (Which I’m not).

“ learning acceptance of where we are is needed“ - I’m usually quite good at acceptance- but I really don’t know where I am, which means I don’t know what to accept

Feeling really confused today 😳

[PMRpro Ambassador in reply to Nextoneplease]

You need to acccept that you have a systemic illness, one that affects most of your body. PMR isn't particularly SERIOUS, but GCA is. You wouldn't expect to do all you tell us you do if you had proper flu would you? Or would you? Having an autoimmune disorder is much the same as having flu, except instead of the virus attacking your body and making you ill, it is your own immune system attacking your body in error. It causes inflammation and that inflammation can cause damage to tissues and blood vessels.

The risk you are taking is that you need a higher dose of pred, and the higher doses of pred over long periods do often have repercussions. The idea is to achieve a balance of lifestyle adjustments and a dose of pred that allow a reasonable quality of life until the underlying cause of the inflammation burns out and goes into remission - and then you will get off pred. But the longer you are on higher pred doses, the harder that may become.

How do you know how to reduce? You take the basis from the rheumy but adjust it to fit you and YOUR PMR because everyone is different. You reduce in small steps - we talk about it here enough, until you find the lowest dose that works for you - but if you persist in trying to continue as you did before you developed PMR you will struggle to reduce and may even make yourself ill by trying to do too much.

[Nextoneplease in reply to PMRpro]

Thank you pro 😊

I guess I’m just so used to battling on through (starting with severe myasthenia gravis at age 29) that it’s the only way I know how to be. But maybe this PMR/GCA is, surprisingly, going to be the thing that stops me in my tracks…..I hope not though, I won’t know who I am any more x

[PMRpro Ambassador in reply to Nextoneplease]

You won't be the first! It doesn't change who you are - you have to adjust to it though!

[Nextoneplease in reply to PMRpro]

That’s the thing - I do feel it changes who I am. I’ve always been a doer and a worker, and I can’t see that being possible much longer….

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

You can still be a doer and a worker - but just choose your moments! Don’t have to be on it 100% of the time.

[Nextoneplease in reply to DorsetLady]

Throwing toys out of my pram now! I want to be on it 100% 😞But don’t we all? So I think I should stop feeling sorry for myself…. 🤦‍♀️xx

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

You can’t be on it 100% of the time - no-one can without something having to give! In your case - it seems to be health….. so give yourself some space - and some down time.

You might find you quite like it! You may not, but it’s always worth a try 😊

[Nextoneplease in reply to DorsetLady]

I’ll try - but downtime is not something I’ve ever looked forward to x

[PMRpro Ambassador in reply to Nextoneplease]

That isn't WHO you are, it is what you do with who you are. And there are many different ways of doing things. We absolutely get what you WANT - but wanting to do something and being able to do it well or even at all is a different matter. Resenting it and fighting it are the quickest way to suffering a very unhappy journey and since you have no idea how ong it will go on, you may become very miserable. Downtime doesn't mean you don't do things, it means you do DIFFERENT things. And maybe it will bring you closer to the people you think being physical about what you do with them is what counts.

[Nextoneplease in reply to PMRpro]

Thank you Pro and sorry for the delay in replying. I do do different things already -eg haven’t been able to drive for years for medical reasons, used to walk and now take taxis; love baking and have given up the lovely tactile feeling of mixing, now use electric mixer or borrow hubby’s arms! Have employed a cleaner and a gardener, etc, etc. Can no longer get to voluntary work (bus service hopeless and too far for a taxi) so now do befriending calls on the phone. So I am trying to be myself but in an amended way. I’m afraid it all just got too much yesterday….Am currently planning Christmas and allocating a small number of jobs per day, eg laying table for 25th on 23rd…..🧑‍🎄

Thanks again, onwards and upwards (hopefully) xx

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

It doesn’t need to stop you in your tracks, but you do need to learn to live with it and “manage “‘ it…not just plough on through life ignoring it…or trying to ignore it. Will make your life much easier if you do 🌸

[Nextoneplease in reply to DorsetLady]

Thank you for this DL. I’ve been managing illness all my life and today I don’t want any more of it. Maybe last weekend I got a glimpse of what life could be like if I were well…..

[HeronNS in reply to Nextoneplease]

Others have to be the judge, but I feel I'm a better person since PMR. Certainly it's taught me a lot.

[Grammy80]

I like that reply, Pro....it condenses the basic guidelines for finding what is good for our bodies but how to maximize feeling good. I've felt so good the last few days I know I overdid..but know what to do now. Yesterday I got up at 7:30, was back asleep by 11 and slept until 4:30 pm. Today is a new day. (I'm printing this out..thx xo)💖

[cycli]

Nextoneplease, believe me when I say that I totally get your wanting to be at 100% but you CAN'T. If you knew me you wouldn't believe what I used to achieve. I have been humbled by this disease and chastised recently by overdoing it and reducing to meet my rheumies schedule. I'm back on 35mg and still just about coping with controlling a flare of GCA. I have to do certain things around the farm which can't be put off but my workload and exercise are curtailed. My coping strategy is to plan what I want to do and tick off steps along the way on each project and activity. I am progressing and everything is gradually getting there if somewhat slower than my fit self would achieve. As each step is reached I can feel a sense of achievement towards the long term goal so it is positive. It's not ideal but it is all I can manage for now. Some days more and some less. It does matter and I would like to do more but when I try it the symptoms come back at the end of the day and plague me till the early hours. I'd love to be at 12.5mg but that's a dream for me. It's snowing again here so the weather is going to affect things as if we needed anything else. Be happy. Enjoy your family. Take a well earned break and ACCEPT it. Try some downtime maybe catching up on a book you want to read or reread or planning what you need to do but in bite sized chunks and then schedule these around easier things. You'll still be at 100% but 100% of what is achievable given your current physical status.

[Temoral in reply to cycli]

Definitely agree with setting goals...even if they are much smaller in this new normal...on a list that you can tick off and feel the achievement...like the old life but adjusted....acceptance was the biggest hurdle for me...I tried to pretend it wasn't happening...but that didn't work! We are warriors..whatever we achieve each day. Warm thoughts everyone...we are not alone! 🥰

[Nextoneplease in reply to Temoral]

Thanks Temoral for your support. Lists are the order of the day - guess it’s just a particularly busy time of year….🤷‍♀️x

[cycli in reply to Temoral]

This disease is a doozy and I am having to rethink most things on a daily basis at the moment. Sometimes it is hard to push forwards but standing still isn't a satisfactory option. Even small forward steps are better than none.

[Nextoneplease in reply to cycli]

Thank you so much cycli 😊 Please believe me that I am in awe of your positive attitude and of all that you do xI do plan as best I can and I do tick off tasks on my list every day. Whatever happened to spontaneity?!?

I will remember you suggestion: “100% of what’s achievable” 😊 That’s a great way to put it / thanks again x