Making Good Choices can Pay Off.

[Kendrew]

I've just received my latest battery of routine blood test results...all 18 of them!!.... and was very happy to see that every single result was within normal parameters and with 'no further action required' for any of them. This felt like a huge achievement, particularly as I'd recently stopped taking some of my meds (Calci-D, and reduced my propanolol by half, with rheumatologist's agreement)

I've worked hard at trying to prevent and minimise the side effects of my various meds...particularly prednisolone and have done much research over the past 2½yrs to facilitate this.

So, what do I do?

I eat as healthily as possible, trying to balance being sympathetic to both a low saturated fat diet (I'm on statins for high cholesterol) and a low carb diet (to prevent weight gain and other steroid-induced conditions such as diabetes and high blood pressure)

I never eat processed foods, take-aways or ready meals because they are often high in salt and sugar, but I do allow myself the occasional treat of a piece of cake or some dark 85% chocolate every so often. We all need to indulge ourselves (sensibly) once in a while!

So far, I've managed to avoid omeprazole/lansaprozole, etc. I have gastro-resistant tablets, always take my meds after food and try to eat some foods that promote healthy gut bacteria (natural live yogurt, etc) No digestive issues yet!!

I go for a walk every day and regularly engage in gentle yoga for osteoporosis. Both of these activities help to develop some muscle tone, improve balance and increase joint mobility...all of which in turn are important for maintaining strength, endurance and mobility. They also help to maintain a healthy heart and healthy lungs.

I take some supplements appropriate for my own specific needs....Vit.D3 and Vit.K2. (I stopped taking Calcium as I didn't like some of the possible adverse effects that I'd read about.) I tweaked my diet to include more Calcium-rich foods and my Calcium and Vit.D levels are now actually higher than when I was taking the Calci-D! Interestingly, my cholesterol levels were also improved, despite my diet including more dairy! They were pretty good anyway because of the statins but I was definitely surprised to see they hadn't declined.

I drink lots of water to help prevent UTI's and maintain healthy kidneys and bladder and no longer drink alcohol....well maybe a celebratory drink for birthday or Christmas! 😄

I listen to my body (sounds twee I know) because it's so important to be able to recognise the warning signals when something is going wrong, and to act on them quickly! So for instance, not only do I rest when I begin to feel tired but I rest when I'm not feeling tired! I try and avoid stressful situations by 'planning' whenever I can so I've already eradicated any potential problems. This isn't always possible of course but anything that minimises stress and anxiety levels has to be a good thing. Some of you will know that as part of this, I recently retired from the job I love, but the benefits of this decision are already evident!

Sleep has been a big problem so I've explored lots of different options till I found my own combination of techniques and aides to help improve this. Good quality sleep is restorative... our body repairs and heals during sleep mode so it's important to try and find ways to achieve a good night's sleep. This will be different for each individual person and no one thing will work for all.

Please don't think I'm relating all of this as an example of what everyone should do. I'm most definitely not. It's just to show that it is possible to 'manage' the condition and to minimise it's impact. I know I've been lucky in that so far, I've not had any other major health conditions running alongside my PMR and this has definitely contributed to how successful my interventions have been. I do believe that everyone though can feel hopeful that there will be certain things...however small....that can be done to improve their general health & well-being and ease some of the problems and issues encountered by this troublesome disease.

I'm fully aware that my next set of blood test results may tell a different story, but until then, I'll continue to fight the good fight and try to stay as healthy as possible.

[SheffieldJane]

Taking control like this also keeps low mood at bay. I was also cheered by my full spectrum blood test results at A&E, all normal. I didn’t really deserve the normal blood sugar, I eat less but haven’t made the concerted effort. It must simply be less Pred in my system. Too busy sleeping to go out every day - not good enough. Well done Kendrew, approaching self care and the management of the disease like a job really. 👏👏👏👏

[Kendrew in reply to SheffieldJane]

Well done to you too.

[123-go in reply to SheffieldJane]

Congratulations on your 'normal' blood test results. I'm crossing my fingers for my results tomorrow when I have my first face- to -face for a year with rheumy. Also hoping that the inflammation in my aortic arteries has reduced after 11 months on leflunomide.As far as sleeping is concerned-it's one of the best medicines! Go for it! 😀

[Kendrew in reply to 123-go]

Good luck for tomorrow.

[123-go in reply to Kendrew]

Thank you.🙂

[Tinasleepyhead]

Such good news, so good to read, I always find your posts so very uplifting 👍🏻😀

[123-go]

Lovely, inspirational post, Kendrick. Being in control brings massive benefits as you've proved and positivity is a great thing, as is learning as much about the condition as possible.For those struggling it has to be one step at a time which includes dealing with setbacks as and when. I've often said that self-advocating is important and we can do that more confidently when we do our own research and when we learn from this community.

You have passed the test with flying colours! 👏👏👏❤️

PS. So pleased to hear that your early retirement is working well for you.

[Kendrew in reply to 123-go]

It's taken 2½yrs to get to this point but lots of positives as a result. Still down days and challenging days but I can get through those knowing they're not constant.

[123-go in reply to Kendrew]

Excellent attitude, Kendrew!

[HeronNS]

🥇 Great! Thanks for sharing.

[Rache]

Thanks Kendrew. A good reminder that we should take control of those things that can make a difference. Just wondering if it’s ok not to take calcium supplements when on biphosphonates such as AA? I had been told you had to.

[PMRpro Ambassador in reply to Rache]

It's probably OK if you make sure that you have plenty of dietary calcium, more than the RDA and get the GP to keep a check on your calcium levels. When on bisphosphonates the calcium is drawn into the bones - and that can leave the blood level lowered which isn't very good for heart and muscles in general. Hence the reason for needing the extra calcium.

[Rache in reply to PMRpro]

Thanks for clarifying

[Kendrew in reply to Rache]

My Calcium level is good and will be checked regularly but if anything changes then I'll obviously rethink things.

I've also tweaked my diet accordingly.

[lalar]

Thanks for this great uplifting post. Been feeling very negative lately. Had to leave my school job...gained 20 1bs in 5 months . Getting no where with my Rheumy.. keeps on wanting to add more meds which I don't want to take. Now not fully convinced it is PMR - did RA factor - was negative. CCPA Antibody test came back positive at 17 but the Rheumy said he was getting a lot of false positive tests lately?? Will follow your advise, trying to cut back on the premade foods , eating more vegetables. Trying to add more water. One day at a time. Enjoy your day.

[Kendrew in reply to lalar]

My rheumatologist wanted to start me on omeprazole from day one, and then amitriptyline for sleep and pain and then pregabalin. I refused all as there was no evidence to suggest I needed them and 2½yrs on, none of them have been necessary so far! We can't necessarily control how long we live with and experience PMR but we can manage some of the smaller related aspects of it.

[2013mayo]

Hi, Well done, I’m really missing my daily walks at the moment, can’t wait to get back to some sort of normality, I’m so fed up with not being able to put weight through my leg.

Take care.

Xx

[Betty_H in reply to 2013mayo]

I had my foot rebuilt in 2015. Broke my heel bone off. Achilles tendon had to be retrieved from my calf and plates and screws put in my foot. Had to be off of it for 3 months. It was very depressing, but I did it and now it works pretty well. All in all, it was worth the time off it. Keep on taking care of yourself. You'll get better.

[2013mayo in reply to Betty_H]

Hi Betty, Thank you so much for your kind words of encouragement.

So glad you are back to normal, I’m very impatient but know I have to follow the rules 🙁

Take care.

Xx

[Nextoneplease]

Thank you for such a positive and helpful post, Kendrew. You’ve done so well 👏👏👏x

I’ve been trying to manage things for a long time, eat well, take supplements, get exercise when possible etc but lately have been feeling a bit down about it all. Your post has given me the boost I needed to keep at it and count my blessings. Thank you again x

[Kendrew in reply to Nextoneplease]

Well done you. That's the spirit.......and thankyou for your kind comments. I think some of the secret to success is perhaps making all these little interventions part of your daily routine. I always try to go for my walk after my breakfast and yoga is after lunch and a rest. Supplements are taken after my dinner and I have water with me at all times.

I also try to have something nice to look forward to each week, like a catchup with a friend.

I try to timetable more physical activities that require more stamina, for the morning as this is when I have most energy, so housework, shopping, my walk etc would not usually be undertaken in an afternoon. These are just strategies I find work well for me but others will have very different strategies I'm sure.

It's normal to feel down periodically... what's important is being able to recognise that it won't last and things will eventually improve again.

[Nextoneplease]

Gosh, Kendrew, you’re so well organised!! That said, I’m pretty good myself on the meds and supplements (10 different ones at various times of day, 19 tablets in all 😳). And I plan lots of gentle activity, it’s just that lately I haven’t been achieving as much as I’d like…..onwards and upwards though, and don’t let the meds dominate the day😊Thank you again and well done x

[Kendrew in reply to Nextoneplease]

Well done to you too. ❤️

[cycli]

Just read this Kendrew. A really good post and I am going to incorporate your short description re exercise if you are ok with this and what you do as it is concise and very much to the point. We all help eachother along this uncertain path.

[Kendrew in reply to cycli]

Ok with me. 👍

[calicojoy41]

A GREAT REPORT, KEEP UP THE GOOD WORK!! I AM TRYING TO DO THE SAME😍

[Kendrew in reply to calicojoy41]

Well done. Onwards and upwards!

[Koalajane]

Because I have type 2 diabetes (in remission for 4 years) I eat low carb high fat. I also walk at least 13000 steps a day and have at least 3 15 minute walks, one before breakfast, one before my evening meal and one after my evening meal. I don’t have lunch because I have discovered that my pred spikes my sugars at this time. I do my best to stay positive. I am going for my diabetic review on Wednesday afternoon, which involves full blood count, hba1c and ESR results. I have my fingers crossed that all my results will be as good as yours

[Kendrew in reply to Koalajane]

Good luck for your review on Wed and well done with all your hard work. Fingers crossed.....you certainly deserve to have a good outcome.

[Koalajane in reply to Kendrew]

My blood results were “awesome” (words my diabetic nurse used) hna1c down to 37, cholesterol 41, liver and kidney function good. My only worrying one was my ESR which is usually 12 and was 29! Not too surprised as have been hurting for a while. I don’t normally like to increase my steroid dose because of my diabetes but I will add an extra 5mg for 5 days.

[Kendrew in reply to Koalajane]

Fantastic news Jane. Well done. Proof we can achieve so much with knowledge and support. ❤️

[PMRpro Ambassador in reply to Koalajane]

But don't go back to the current dose - as it appears to be slightly too low and not quite controlling the inflammation

[Koalajane in reply to PMRpro]

Thanks for that. The interesting thing is that the doctor had gone through my blood results and by the side of my ESR has put okay for age. My diabetic nurse looked at it and asked if I was aching because it is not usually that high!

[PMRpro Ambassador in reply to Koalajane]

Sensible woman - and out of date doctor! They now realise that ESR doesn't necessarily rise with age - it rises because there is probably some unidentified inflammation somewhere. What is important is YOUR personal low achieved with pred and then the trend. If it is rising - there is a problem.

[York54]

A very uplifting post Kendrew, well done👏👏👏I was feeling very much this way until shingles hit me last week😱 Now trying to find some positivity from a very low place.

[Kendrew in reply to York54]

I think that life in general, with or without PMR, will always have its highs and lows. It flows in a pattern of 'peaks' and 'troughs'..... for a while, everything is settled and good and then eventually something challenging will come along that we have to deal with. This won't necessarily always be health related but whatever it is and however difficult that challenge is, it won't last forever and then another calmer and more settled period will emerge again. Simply put.....just the natural flow of life. Unfortunately, it seems you're experiencing one of the more challenging times at present and although I've not suffered with shingles myself, I know enough people who have, to be aware of how unpleasant, painful and miserable it can be. I'm so sorry you're going through this unpleasant period after enjoying such a positive period before.

As I suggested though, this too will eventually pass, and as you begin to improve you'll get back on track.

Try to accept that for the moment you need to rest and recover so you can then be in a good place to pick up and embrace everything you were previously doing. You'll get there, but I do understand your frustration. ❤️

[York54 in reply to Kendrew]

❤️❤️❤️❤️

[Jackoh]

Well done Kendrew! I’m sure that post would have inspired many. Just to try to take control in little things, perhaps even one at a time helps us to feel more positive and less at the mercy of this condition, I feel. 💐

[Kendrew in reply to Jackoh]

Absolutely.

[MiloCollie]

Yes kendrew your posts are inspiring. Thanks for reminding me that I am important ❤️

[RoomsonFire]

Hello Kendrew , your post spoke to me .. We have a similar History- Thanks 🙏 I’m 61 , female retired Mental Health Nurse , after I retired I did Child minding for 2 Years , but Back strain became too disabling - In March this year I began suffering with PMR - Currently taking 10 mg of Prednisolone and Paracetamol for Pain breakthrough- I had a Part time cleaning job before lockdown and before this debilitating all over Body pain - 😢 I wonder are you thinking Work in the future might be / might not - be a possibility ? Do you have any ideas what type of work we could do with this maybe chronic lack of strength , tiredness and reduced mobility ? Have you looked into any Disability payment eligibility ?

[PMRpro Ambassador in reply to RoomsonFire]

Does the paracetamol have any effect? It is very unusual for it to do anything in PMR as its antiinflammatory action isn't good enough. Even NSAIDs don't work for most patients and when ordinary painkillers help itcan be a sign this may not be PMR or not just PMR.

[RoomsonFire in reply to PMRpro]

You are right 👍 Paracetamol, Ibuprofen , no over the Counter Meds were helpful prior to starting on Prednisolone 15 mg in July this year Paracetamol only lifts my Stress Headaches , which come on when I feel frustrated, hungry , hot and exhausted - Thanks for flagging your query 👏👏

[Kendrew in reply to RoomsonFire]

Hi RoomsonFire.I'm afraid at the moment I'm not considering work at all. During my 2½yrs of sick leave, I've had 2 attempts to get back to work (I work in a nursery class in primary school) and unfortunately neither were successful. The moment I stopped focusing on my own health and well-being I became unwell again and wasn't able to balance work load & stress with staying functional & well.

I've just been granted full medical retirement and making the decision to go for retirement through ill health was not an easy one. In fact it was one of the most difficult and upsetting decisions I've ever had to make, particularly as I loved my job so much.

My own circumstances mean that I really have to have the time to rest, (when I need to rest!)pace myself and organise my life so I can 'manage' PMR effectively and not put myself in situations that overstretch my capabilities beyond what's achievable. So...no work or there are consequences!

It's important to say that some people are able to work but it obviously depends on their profession and what's required both physically and mentally.

I am currently receiving Employment & Support Allowance and will also receive my work pension once HR have sorted out the paperwork. (I'm 63 so would be retiring in 2½yrs)

Hope that's answered some of your questions?

[RoomsonFire in reply to Kendrew]

Thank you Kendrew , Yes .. I fully appreciate your decision was difficult- but necessary , maybe I will qualify for ESA if my Consultant supports the GP diagnosis, I’ll look into any benefits if my Six months unwell continue , Take care , Best wishes 🙏🌷🌷

[Kendrew in reply to RoomsonFire]

As soon as statutory sick pay ends you can claim ESA. It's not means tested and your entitled to it for a maximum of 12mths.

Good luck.

[RoomsonFire]

Hello Kendrew , 🌷🌷 Hope your day has been nice 🌞 Saw my Rhuemy Consultant today in Oxford , he has increased my Prednisolone up to 12.5 from 10 mg as in response to Blood results - So hopefully I’ll feel a bit better soon .. I don’t think I’ll be able to claim any support moneys from anywhere , as I’m in receipt of my Nursing pension , since I was 55 - I recall when I applied for Statutory Sick pay it was a miserly £17 a week 😂 - One helpful has been a concessional Bus pass though 👏👏 so even short distance like 10 minutes walk - I can hop on the Bus - so that saves my energy, time and Dosh 🎉 Best wishes dear 🌷🌷

[Kendrew in reply to RoomsonFire]

Pleased to read your update and it seems things have improved a little. Hope the dose increase does the trick. Fingers crossed 🤞

[yogabonnie]

I love this whole post!!!you are thee best! I also PM ‘d you last week but think computer not posting responses so trying on phone.

[Kendrew in reply to yogabonnie]

Hi yogabonnie. Really good to hear from you. I'm afraid I haven't received a PM from you. Just checked again in case I missed it. I'll PM you. See if that works!