Reducing preds very slowly but aching. Suggestions please

[CJDLSR]

Hi All

I haven't posted for a while but read your posts frequently. I've been "coping" by looking up relevant posts on here, as I've needed. What we would all do without this forum??

My problem now is that I've been reducing from 20mg using DL's 5 week tapering plan. I started in November after seeing Prof Hughes in Surrey. He recommended dropping 1mg a month (yes, even from 20mg) and if that went well try 2 weekly - ha-ha - if only!!! I started aching again almost straight away. I gave myself an extra week at the end of the 5, full time on the new dose, before dropping again. The aches are gradually getting worse. They're manageable, but I'm just not sure if I'm doing the right thing. When I reached 16mg I decided to do the next drop over the 7 week tapering plan - I am only in wk 2 of that.

There have been other things going on which have probably affected the PMR.

1) I've been dealing with a very stressful situation for some weeks, which came to head a couple of weeks ago. This has partly resolved the issue, but not totally. The part remaining, I am trying to distance myself from.

2) I have been walking (less than a mile) most days with a neighbour who is wanting to get fitter. We've been doing that for about 2 months except for the last few weeks, when I felt perhaps I shouldn't be doing it???

3) I have had 3 sessions of Bowen, spaced over 24th Feb / 11th March / 1st April. I haven't booked any more - not at all sure it helped.

4) We've had a couple of short breaks (end of March & this last weekend) which ended up involving quite a bit of walking to get around, or view a museum or a garden etc.

I'm very disappointed that, despite taking the tapering so slowly, I still haven't got back to the starting dose of 15mg (in July '24 - increased in Aug to 20). The steroids have already given me steroid induced diabetes and I'm very reluctant to increase them now.

I had a blood test this morning to check my inflamation markers (had to ask for it!!!) and the Dr is ringing me on Thursday to discuss. I'd like to be as well informed as possible and, hopefully, have some options. I thought I would try you lovely, knowledgable and experienced people before going back to Prof Hughes.

Thank you.

[PMRpro Ambassador]

If the symptoms are increasing - stop reducing, being manageable isn't enough, it must be stable. If it is getting worse, then you are on too little pred already.

It isn't just tapering slowly - there is a lot required in the way of lifestyle adaptations and it does sound to me as if you haven't quite got that under control. Being on pred isn't a free pass to go back to normal levels of activity. And it does appear you have perhaps done more than was advisable? Plus stress is always a bad visitor when you have PMR.

For the steroid induced diabetes - have you cut your carbs drastically?

[CJDLSR in reply to PMRpro]

Last question first, yes I have, and brought my BG reading down from 59 to 44 - enough for them to let me halve the Metformin (which was making me feel quite nauseous). Next BG test due in a couple of weeks, and I'm concerned about it as I haven't ALWAYS been good - but I wasn't last time either. How do you know whether it's the diet or the Metformin that's working????

Activity levels!!!!!!!!!!!!!!! We had quite an exchange about that last summer, soon after I'd been diagnosed. You and DL made me feel like a recalcitrant teenager!!! I honestly have reduced my activity levels a lot, but I was pretty sure that you would suggest it's not enough! I do find it hard (well impossible so far, obviously!!) doing virtually nothing. I'm also concerned about muscle wastage and weakening. BUT, because I have been aching so much, I have decided to clear the diary totally over the next couple of weeks (Easter hols - all evening activities stop, not that I've managed many in the last month) and see if that makes a difference. I can hear you saying "next couple of months may be more like it" and that I would find hard. I'd have to pull out of a couple of choirs (they're the evening commitments) as well as playing the organ for church services most weekends (which can be stressful, depending on how well I feel and how well I know the music 🤔🙄

So, should I just stick with the dose I'm on (16)? My GP is being very good (especially since I saw Prof Hughes!) but I know she doesn't like increasing the preds, and she went a bit quiet when I said I was only down to 17 (whenever that was). I had wondered whether to go up to (say) 20 for a few days to see if the aches stopped, then back to about 17 and see if that makes a difference.

Any advice gratefully received.

[DorsetLady PMRGCAuk volunteer in reply to CJDLSR]

You and DL made me feel like a recalcitrant teenager!!!

All for your own good I can assure you..😊and you don’t have to sit and do nothing… you can still walk, but not a mile or two in one go… or if you have to, then choose a course where you can stop and rest 2 or 3 times. Your neighbour may be doing it to get fit.. but have they got PMR?

You could try the flare protocol and then return to just above current dose… but at the risk of making you think you are being told off again - we nag for your benefit… not ours… 😏

healthunlocked.com/pmrgcauk...

[CJDLSR in reply to DorsetLady]

Oh - I do know that. It made me smile at the time, which can't be bad. I thought how much I'd like to meet these kind people who gently nag me for my own good!!

No, my neighbour doesn't have PMR and she's away at the moment, so it's not a daily thing, and something I can drop if I must. I do insist on no significant hills (at the moment) and a good surface - ie a tarmacked lane or smooth path of some sort to avoid any jarring (you see, I have been making some concessions!!)

I have just read the Flare Protocol (again - I have revisited it several times) I don't feel I'm having a Flare (been there, know what it's like!!! It's why I was put up to 20, but then didn't start to come down again for 3 months). I've noted that at the start of the Flare Protocol, it says "either you have reduced too low, or you are too active for the medication to control the illness". So I guess the latter could be me??? The thing was, I'd been on 20mg for 3 months, but symptoms returned as soon as I went from 20mg to 18.5 (I actually did the first two drops at 1.5 rather than 1mg).

Thanks very much for the suggestions. I really do appreciate all the responses I get on here. I hope I didn't sound ungrateful or annoyed - would hate to upset you good folk 😊

[PMRpro Ambassador in reply to CJDLSR]

I'm sorry if that is how you feel - but the reality is that while some people can do a fair bit despite PMR, others just can't and it is nothing we or you can alter. You have to identify what YOUR body is able to deal with - YOU, not your neighbour, or someone on the forum.

One of the things we talk about is DOMS, delayed onset muscle soreness. and that PMR/pred ravaged muscles tend to be more suscptible to. If your muscles do develop it - even once - and then you continue activities as if it weren't there, then your muscles may NEVER heal to develop the training effect that strengthens them or become pain-free because you cause the microtears every time you use them.

[CJDLSR in reply to PMRpro]

Well, that's pretty scary, but thank you. It's what I need to hear. You told me about DOMS before. I would hate for my own choices to put me in a worse position for ever.

Do people really give up everything and lead a REALLY sedentary life until this wretched thing passes (if indeed it ever does) How do folk balance not doing most of the things they enjoy with not sliding into a depressed state? I have never had a problem with my mental health, but things like singing, walking, gardening, helping other people, etc do give me a lift - especially at the moment.

[PMRpro Ambassador in reply to CJDLSR]

At some stages I suspect some people do shut down a lot. There are things I don't do anymore - but have found substitutes. PMR stopped me singing - it affected my breath control and then I couldn't guarantee what note would emerge because the throat muscles were affected. I miss it after a lifetime of singing but no choir would want me now! Helping others doesn't HAVE to be physical in nature. It is better to concentrate on what you can do rather than what you can't manage now.

And you also have to bear in mind - very occcasionally it doesn't go away, I have had it 20+ years ...

[Charlie1boy in reply to CJDLSR]

Well, I continued singing, walking and gardening as well as visiting unwell or lonely friends. The main thing is to do these things in moderation, and if/when you do get aches or get tired, then that’s the time to take a rest.

I didn’t include organ playing on Sundays, because I don’t play the organ, but I’m pretty sure I would have given that a miss. The problem there is that you get committed to it, and it’s probably difficult to get out of, so not good news if you’re feeling rubbish with PMR.

Good luck.

[CJDLSR in reply to Charlie1boy]

Thank you Charlie1boy. I thought I could continue some things but I'm going to have to have a major rethink what those should be! A few friends have suggested that I "do the things I really want to do and that give me pleasure", which I think is very sound advice. Problem is, there's still probably too much that comes into that category. I've realised during this post, that it might be a good idea to actually write down everything I do do, what my week tends to look like, and then look at prioritising the things that I REALLY want to do, but also maybe looking at those things that are the least physical. This is an interesting exercise!!! 🙄

I've always said "at least I can visit my friends and sit and chat with them" but even that can be tiring (depending on the friend, of course 🫢!!)

Ah well - big rethink coming up. Thanks for taking the time to respond. All thoughts and comments are helpful. Thank God we are not alone in this journey.

[Thelmarina in reply to CJDLSR]

And you are 74. We do get more tired naturally, partly because our body ages and we take more time to do what we used to do, let alone healing. A natural process is exacerbated by PMR but not I think the entire cause. For me, arthritis is appearing as I reduce steroids in my eighth year. So gentle walks, exercise alternate days etc. It’s so interesting to allow a vacuum and watch other ideas and activities unfold! X

[CJDLSR in reply to Thelmarina]

Yes, as I've probably guessed, I'm not very good at standing still and appreciating the nature around me. "Allowing a vacuum" is a good phrase - I shall try to practice it!!

Thanks for taking the time to reply. Every response is interesting, useful and much appreciated.

[DorsetLady PMRGCAuk volunteer in reply to CJDLSR]

I've realised during this post, that it might be a good idea to actually write down everything I do do, what my week tends to look like, and then look at prioritising the things that I REALLY want to do, but also maybe looking at those things that are the least physical.

That would be very sensible - on many fronts, not least in that you will be in control of your activities.

Many find saying “no” is the most difficult thing to do with PMR/GCA- but sometimes you have to (and it’s not forever).

[CJDLSR in reply to DorsetLady]

Yes, I do have a problem saying "no", and I find myself dishing out invites, or offers to help, without stopping to think first!!

Lots to learn and concentrate on, but thanks for the advice and encouragement - it's all appreciated, and I do bow to your better knowledge and experience, and I'm very grateful that you are so accessible and so willing to support us all. You must find yourselves saying the same things over and over 🙄 so THANK YOU

[DorsetLady PMRGCAuk volunteer in reply to CJDLSR]

You must find yourselves saying the same things over and over

No problem when it’s to different people… 😊

[CJDLSR in reply to DorsetLady]

That's a kind reply!!! You must be endowed with much patience - maybe learned from dealing with PMR / GCA!!! Perhaps I'll acquire the same skill in time!!

[DorsetLady PMRGCAuk volunteer in reply to CJDLSR]

Not sure about the patience -not my strong point -being an Aries and a Viking Goddess. But as I am widowed and live alone I can swear out loud before I pen the answer..😉..

[CJDLSR in reply to DorsetLady]

😂😂

[PMRpro Ambassador in reply to CJDLSR]

We do - hence the FAQs, a collection of posts and discussions that is already there. But it only really rankles if someone asks the same question several times expecting a different answer - we ARE pretty consistent!!!

Like DL though - occasionally it is as well you can't hear us ...

[CJDLSR in reply to PMRpro]

Quite understand 👍

[Pinkcrocs]

Hello dear CJDLSR!I'm sorry you are struggling with pmr and tapering.

It sounds as if you have yo-yoed and perhaps tapered too much too soon also. Combined with life stresses and trying to live 'normally ' your pmr is still very prominent: (not sure prominent is the correct word).

Why not try a tiny taper once you feel in a better way. A little drop every so often might benefit you.

It is frustrating having to cut back on activities. Especially if they are v important to you. I found playing the piano v hard on my shoulders and arms and didn't do it for quite a while. I also find evenings too tiring to manage socially, so I have adjusted.

Things will improve. But it is slow. I've tried to get back to running and it's too much for me. It's a mini sadness but I can walk. I'm hoping in time I will be able to run again.

Pace yourself and don't race yourself.

Sending a gentle hug x

[CJDLSR in reply to Pinkcrocs]

How kind Pinkcrocs (I have some too!!!) My PMR mostly affects my legs, although I've started to get mildly aching arms and wrists, but so far (thank goodness) playing the piano or organ hasn't been a problem.

TBH I thought I was doing a VERY slow taper, but maybe, given the aches, I should stay at the reduced dosage for a lot longer before moving on. I've always said that I don't care how long it takes, as long as it works! It's the fact that the aches started within days of me starting the first reduction (20 - 18.5) and that was on the 5 week tapering plan + an extra week to "consolidate" but sadly that never happened. I guess I should have stopped and had a rethink then!

Yes, I'm find evening activities rather beyond me at the moment. We're doing a particularly exciting project with our main choir for our next concert (mid-May) and I'd be so sad to have to pull out of that (I'm also secretary of that choir, although I have given my intention to resign at the next AGM which will be in Sept) so lots of big (and difficult) decisions to make.

I do like the "pace yourself but don't race yourself" thanks for that. I have always wanted to develop / spend more time on my crafts, so maybe this is the perfect excuse to make progress there. I'm sure there's a silver lining somewhere.

Thanks again for your very kind reply, and good luck with your continuing journey - I'm sure you will run again - as I will walk the fells again - one day (if I behave!!)

[Pinkcrocs in reply to CJDLSR]

Awww my sincere best wishes to you.What is hard is accepting our new way of life. I'm okay now about running but it's taken a while.

Yesterday was a v special day for me: I rode my bike to lidl and bought carrots for my bunn and cycled home. My first bike outing for 2 3/4 years I think. Today I can't do anything physical despite the weeds calling to me! I woke so many times last night. My body felt inflammed but not in pain and my cgm showed my blood glucose dipping: I don't have diabetes but am tapering and working now so I wanted to see if I am improving with my overall blood glucose. The gardening and bike ride was worth it as I felt almost like the old me. But I won't repeat it.

I did far too much in one day and I was meant to be pottering and taking things easy.

Try not to yo-yo. If I was starting all over again with pmr I would stay at 20mg for 4 weeks. I would then taper by 1mg and be careful not too do too much.

You sound like you have a great plan with crafting. What a creative and enjoyable hobby. Don't do anything hasty with giving up things you enjoy but perhaps request some time off temporarily. Your pmr will improve- it just needs the best taper for you and for you to not do too much.

Lovely chatting to you.

x

[CJDLSR in reply to Pinkcrocs]

Bless you Pinkcrocs. I really appreciate your care. Feeling just a tad low at the moment, but I know it won't last - I'll find the positives!

I haven't dared get on my bike since last summer - afraid of falling off (which isn't unknown!!) now I have osteoporosis as well, and have refused the awful Alendronic Acid as I have gastric issues anyway! We're going to Wales for a couple of weeks at the end of May and I suggested to hubby that we take the bikes but after this (complete) conversation, I might have to think again!!

Thanks so much for your care and advice. It is noted, especially the "be careful not to do too much"! I now realise that I've just not been realistic about what I could do (and get away with) so will have a major rethink and cut a lot more out. Tough, but at the end of the day, I want to be well again!! It's so true that this is different for everyone, and we just have to listen to our bodies and do what is best for us. My chat with my GP on Thursday may be rather interesting!!

Take care dear Pinkcrocs - I shall remember you and this lovely conversation every time I wear mine now!!! 🤗

[Pinkcrocs in reply to CJDLSR]

😘I think if it was me it would need to be a tandem and hub do all the work ☺️

Go on holiday and enjoy yourselves. Make precious memories.

May isn't tomorrow. You can make good progress in those weeks but cycling might be a little ambitious perhaps.

Adjusting to illness and a new way of doing things isn't pleasant and there's every reason to feel a tad low. We all get down and sad at times but it will improve. You will start to feel better. I found from experience not to put pressure on myself.

A close family member asked me last week what were my plans for the holiday. (I'm off 2 weeks and a day). I replied I'm concentrating on my health and tapering. I can't risk tapering badly and having time off work. I have a new job and am so enjoying it.

You have done v well with your diabetes and your enthusiasm for doing things is great. Just pace yourself and take time to rest.

From one pink crocs to a fellow pink crocs- Things will improve with pmr and tapering. You will reduce the pred. Its not a race. If you go back and read folks posts and see how they've struggled but eventually they do improve and taper.

🤗🌸x

[Pinkcrocs in reply to CJDLSR]

I don't take alendronic acid either. I take my pred with yogurt ...always with some nuts and strawberries this morning and probably kiwi tomorrow. Grapes are too sugary but I do like them but don't buy them now. x

[CJDLSR in reply to Pinkcrocs]

My breakfast is usually muesli with fruit (fresh berries or stewed, no sugar) and yogurt. I have my preds after this. Then I avoid carbs until the evening.

I also like grapes but am avoiding buying them!!! I'm a bit confused about fruit. I've always eaten a lot of fruit, and while I know it's full of natural sugars, I've always believed it's a good part of a healthy diet. The diabetes advice I get or read is conflicting so I remain unsure!!

[Pinkcrocs in reply to CJDLSR]

Sounds delicious 😋

[CJDLSR in reply to Pinkcrocs]

So does yours!!! Very similar really.

I've tried just protein for breakfast, but it doesn't seem to work for me. I've never been into cooked breakfast except very occasionally. I just keep coming back to my muesli (gf and as low carb as I can find!)

What a lot of things we have to juggle!!

[PMRpro Ambassador in reply to CJDLSR]

Healthy diet, being diabetic or not diabetic and being on pred are all factors that have varying relationships - BECAUSE of the pred. Yes, fruit is healthy - but it is a source of a lot of sugar in the form of fructose, a carb.

[CJDLSR in reply to PMRpro]

Yes. I have cut back on it, but I do miss it. We usually share an orange after our lunch and I've tried to cut that out, but have slipped back into having it. If I was hungry (before PMR / Diabetes etc) I would always reach for a banana. Now that doesn't seem such a good idea 😒

[PMRpro Ambassador in reply to CJDLSR]

Indeed. But you can find protein and low carb foods for breakfast that don't have to be cooked. You can get inspiration from continental buffet breakfasts for example.

eatingwell.com/article/2915...

womenshealthmag.com/uk/food...

[CJDLSR in reply to PMRpro]

More recipes - goody, goody!! I am always looking for ideas. Thank you.

When I was still at school (a long, long time ago!!) I went on a skiing holiday (with the school) to Norway, and I still remember the fabulous breakfasts of cold meats and cheeses etc. I loved them. It does seem an odd brkfst now, but one just has to adapt as needs dictate!!

Thanks for the links - I shall enjoy browsing.

[PMRpro Ambassador in reply to CJDLSR]

Most countries in northern Europe use cold meats, cheese, eggs, fish and so on for breakfast - with salad items like cucumber and tomato etc. The most amazing breakfast buffet I ever came across was in Singapore - 7 different buffets for various Asian countries, European, USA. And just LOADS of non-carb foods to choose from.

[CJDLSR in reply to PMRpro]

Sounds heaven!!! The European brkfst you describe sounds like my usual lunch!!

[CJDLSR in reply to PMRpro]

Should have N European

[DorsetLady PMRGCAuk volunteer in reply to CJDLSR]

now I have osteoporosis as well, and have refused the awful Alendronic Acid as I have gastric issues anyway!

So what do you take for your osteoporosis? Agree that AA should be avoided if you have gastric issues… but many can take it without a problem

[CJDLSR in reply to DorsetLady]

Calcium with Vit D3, lots of care not to fall (hence the reticence about biking) and it was supposed to be weight-bearing exercise, which for me, at the time, was walking and building that up slowly.

I have the opportunity to go swimming and was going to start next week. Is that a good idea just now or not? I know it's not weight-bearing but thought it might do SOME good??

[DorsetLady PMRGCAuk volunteer in reply to CJDLSR]

Many find swimming good, but if you haven’t done it for some time, then build it up gently.

Re osteoporosis- so long as what you are doing is enough, then fair dos - but just make sure it is.

[CJDLSR in reply to DorsetLady]

What's mmmm???? (sorry if I'm being thick)

[DorsetLady PMRGCAuk volunteer in reply to CJDLSR]

mmm? just ignore -perhaps I was checking you were reading it!

[PMRpro Ambassador in reply to DorsetLady]

mmmm???

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

See reply….

[PMRpro Ambassador in reply to DorsetLady]

I wondered about amount??

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes probably was… 😊

[PMRpro Ambassador in reply to CJDLSR]

If you already are osteoporitic, it is a bit late to rely on calcium and exercise etc alone There are options to avoid gastric problems - and they are far preferable to spinal fractures which can happen all too easily - I developed a compression fracture despite my dexascans being apparently in a good range. tangocharlie developed several ...

[CJDLSR in reply to PMRpro]

I did consider it very carefully at the time, even tried it for a month. I think my GP would prefer me to be taking it. I have read that it takes up to a year to start to be effective (by which time I'd hoped to be well on the way to a smaller dose of steroids!) Well, that obviously isn't happening. I have also read that you shouldn't take it if you have GORD (which I have) so I was really quite frightened at the prospect.

What are the alternatives for me??

[DorsetLady PMRGCAuk volunteer in reply to CJDLSR]

There are plenty- have a look at the ROS site… many on here have annual infusions..

.. and speak to one of the nurses on the helpline-

theros.org.uk/information-a...

But you really should be considering something

[CJDLSR in reply to DorsetLady]

Thank you DL. I will certainly look into this.

[PMRpro Ambassador in reply to CJDLSR]

No - it is effective in stabilising bone within a few months, the infusion I have works in a few weeks to improve that aspect in trabecular bone. There are alternatives if you have GORD as you are right, it is a contraindication to oral bisphosphonates. The zolendronate annual infusion is the bisphosphonate and then there are other options such as denosumab and a couple of newer drugs.

[CJDLSR in reply to PMRpro]

I think my GP said at the time that the alternatives to AA were something you had to stay on forever. She also said I was only mildly osteroporotic and that I wouldn't have reached the threshold for medication if it hadn't been for the steroids. She seemed to think that as I reduced the steroids, the need for bone protection would also decrease. She agreed to book me another bone scan around the end of this year.

So many things to take into account!

I will ask her about Zolendronate - thank you.

I have seen the results of my blood test yesterday, and the ESR is "normal" (less that 5) as is the CRP (less than 2).

I have read before on this forum that these results don't necessarily prove anything. I have had more pain today than I've had in months, so something isn't right.

The Urea and Electolites test says "review by GP" (eGFRcreat (CKD-EPI)/1.73 m*2: 87) as does the Liver Function Test Serum alkaline phosphatase: 23. No doubt she will discuss this tomorrow. I think teh last 2 results are more to do with the diabetes, but they may be linked to the steroids - I haven't done any research on those.

Thanks again for your help 😊

[DorsetLady PMRGCAuk volunteer in reply to CJDLSR]

You don’t have to stay on AA or the alternatives forever…in fact you should have a holiday from them at the 4-5 year mark. Plus like AA they do continue to work for about the same period after you have finished them…

[CJDLSR in reply to DorsetLady]

DL - Thank you for clarifying. I might be in for an interesting conversation tomorrow!!

[DorsetLady PMRGCAuk volunteer in reply to CJDLSR]

Yes.. and do make use of the ROS site.. it really is very good…

I was on AA for 4 years [GCA] …no issues, and I didn’t query - hysterectomy aged 37 and mother with broken hip [although not because of osteoporosis]. My DEXA scan post GCA was absolutely fine… and having had three replacement surgeries since nothing has crumbled.. so guess bones are still are hunky-dory 😊

[CJDLSR in reply to DorsetLady]

Well done you. Sounds something to be proud of!

I did take AA for a month but it was my oesophagus and gut that worried me the most. I have GORD, my omeprozole was doubled when I started the steroids, I still get a bit of heartburn now and again (usually if I've over-eaten actually) and I have difficulty swallowing some textures, so I just didn't like the idea of AA at all. If I could have an annual injection that could solve the problem. Is that a lot more expensive dare I ask???? I do think costs can come into some of the choices we're offered.

[DorsetLady PMRGCAuk volunteer in reply to CJDLSR]

I would have preferred not to have any if it really -but heigh ho that’s life..

AA is probably the cheapest option which is why it’s prescribed initially -but you have good reason not to use it (GORD) -so other options have to be considered.

Forgot to say, if you have severe osteoporosis (you don’t) then you may need to be on treatment for much longer -which probably what your GP was thinking of-but they still need to be reviewed regularly.

Do let us know how you get on.

[PMRpro Ambassador in reply to CJDLSR]

The one you have to stay on forever - or switch to a bisphosphonate to preserve the improvement - is Prolia/Denosumab. Zolendronate infusion you have 3 annual infusions and then a 3 year holiday.

She is telling you half a story - we had a seminar from a top expert which was a bit different!!

[Obscureclouds in reply to CJDLSR]

You mention swimming not being weight bearing. But there are a lot of exercises and stretches that are that are more easily done in the water because of the support it gives. Just walking or gentle running in the water is great for building up strength even if you start off at just 5 or 10 mins. I can thoroughly recommend as it has really allowed me to keep up my level of fitness . Take it easy but it’s important to keep active.

[CJDLSR in reply to Obscureclouds]

Thank you Obscureclouds. I do worry about letting my fitness levels completely go as it will be so hard to build up again after whatever period it's going to be!

I did think about going next week and just see how I get on. Even if I'm only in the water for 10 minutes it'll be a start.

Thank you for your encouragement.

[Obscureclouds in reply to CJDLSR]

Yes when I went back to the pool after 6 weeks in hospital & further month recovering (on Pred for autoimmune illness) I found 10-15mins mix of swimming and exercise soon became 20 to 30 and I was then able to resume my regular Aqua classes up to 4 times a week.. Getting dressed after was more effort than the pool so I suggest you allow for that when you start off. On the issue of bone protection, I decided at my age it was in my best interest to have this at the start as recommended rather than waiting and finding osteo issues had already started. I have had the annual infusion of Zoledronic Acid rather than taking AA but that might not be suitable for you. As I understand it These drugs slow down the cells that normally break down bones when the natural process of regularly replacing specialist bone cells isn’t working as it should. Whereas Calcium supplements and natural calcium enriched food sources replenishes the calcium levels we need to keep our bodies healthy along with Vitamin D. Which is why if you have ZA or AA you still need AdcolD3 or similar. Apologies if you already knew this but I have sometimes seen comments on here where people think you don’t need both. Good luck I hope getting in the water helps you on the way to getting to a level of fitness you can accept as your new norm

[RunnerJoe in reply to Pinkcrocs]

Pinkcrocs, hang in there. I struggled with PMR and GCA for a year before being diagnosed, and I've been receiving treatment for 9 months (prednisone and Actemra). I've been able to walk good distances the whole time and lift weights most of the time, but I've struggled with running. I had trouble before starting treatment with pain and stiffness, and I went through a period tapering prednisone where my muscles were tight and strained easily. I started running again about 3 times a week once I got under 10 mg of prednisone a day. Now I'm down to 5 mg and feeling really good. I've been running up to 45 minutes in a session mixed with some walking breaks. I'm slow, but I can feel my pace slowly improving. So there is light at the end of the tunnel.

[Pinkcrocs in reply to RunnerJoe]

Oh that's fantastic RunnerJoe🤗☺️ Well done! I was never good at it but loved it. I tried probably a year ago doing couch to 5km but it didn't work for me. I think it isn't for everyone.

We are planning on going to parkrun this Saturday and I'm hoping I can walk half of it and if my legs feel OK complete it...but half would be wonderful.

You've been through a lot and it's good to read how you started back to running.

Running is a gift. A privilege. Run while you can and enjoy it🤗

Thank you for your encouragement and happy running x

[Angelsmummy]

Morning C,I have read all the answers to your post and all of them true!I am over 2 yrs into my GCA/ PMR diagnosis( a year undiagnosed before that)It is a hard path we all tread,the longing to get back to our previous way of living,pushing too hard to reach that goal and then suffer for it afterwards.We all( or nearly all) come to accept that life has changed a lot,maybe not permanently but to the extent that we are not as physically capable as before,just a case of doing what our bodies will allow at any given time.I painted a garden wall the other day,a BIG wall,and how pleased I was with myself,but I knew damn well that the next day I would have to have a “ be kind and rest yourself day” the next day.It is just the case of getting into the right mindset I think. It will come for you,just realise that the disease is in control at the moment and youmust respect it or it will punish you.” Slowly,slowly catchy monkey” !xxBest Wishes to you.💐💐😜

[CJDLSR in reply to Angelsmummy]

Hi Angelsmummy

How kind of you to write. I guess I know all this is true - I've probably been in denial all this time. I've been so lucky to have been so strong and healthy for so long, I always knew I'd make a lousy patient as I'd hate having my wings clipped (so to speak).

So I have now to make a BIG reassessment of where I am and what I need to be well again, and it's clear from all the lovely responses I've been getting that I have to accept, adjust and apply (OH! 3 x As - that just came out - have I invented something new???? 😆)

I think the thought that I could permanently damage my muscles and NEVER be able to walk a distance, cycle, garden etc again has somewhat polarised me. That's the last thing I would want.

Thank goodness we have this forum, with not only knowledgeable experienced people, but kind and compassionate folk too, who understand, have been there, are going through it as well, who can offer encouragement and hope.

Thank you so much. I will make some serious changes to my lifestyle, all in a good cause, and embrace a new way (a new normal, as they say) for as long as necessary. Might need a bit of help now and again staying on track though, so you may be hearing from again!!!!

Bless you all.