Update on my PMR journey.

[Daisymaud]

Hi everyone.

I’m still struggling with various side effects of prednisolone, but still largely pain free from PMR at the moment. Down from 30mg to 20mg now. My blood sugar is up to 48 and my kidney function is down to 54 (CKD Stage 3) my ~bp is up and so are my ankles! I can’t climb the stairs without getting out of breath. I’ve had a back molar tooth out last week, which kept getting infected, ( and in my opinion started this whole PMR journey) so now I have to start Alendronic acid, which I am not looking forward to, as I remember my mum taking it and having a really bad day every Monday 😔

I regularly feel weepy and tired but still grateful not to be in all the pain.

On the plus side I’ve bought and wrapped (online) all the Christmas presents and almost finished the cards! I just need some energy and motivation now to put up the tree and decorate!

Blessings to all

Daisymaud

[SnazzyD]

Hello there. I’m sorry it’s been such a struggle. You’ve been on moderate doses of Pred and yes it can make one feel pretty emotionally all over the place. I’m surprised you were started so high for PMR? Did a smaller dose like 20mg not do the trick? If you have dental issues and even without, I would really ask for a DEXA scan before taking them. It is not the case the it is inevitable that you will suffer concerning bone loss on Pred. I refused AA until I had had one and even with some osteopaenia I was still able to take supplements only as per their assessment tool (FRAX tool). It may turn out you do need it, but at least you’ll know it’s for a good reason and not just in case.

Have you changed your diet at all? By that I mean reduced carbohydrate and salt?

[123-go]

I'm sorry to hear that you're struggling, Daisymaud.What date did you start taking Prednisolone? It may be that you have reduced too quickly.

The tooth problem can't have helped but at least that's out of the way now.

Have you had a dexa scan to assess your bones? If not, please ask for one before you agree to Alendronic acid. Sometimes it not necessary and there are things you can do to improve your bone health.

One thing jumps out at me! It appears that at times you feel a little a little better you undertake jobs that might be better left off the list or at least spread over time. In your previous post you mentioned planting winter pansies and now you've wrapped up all your Christmas presents and written cards. Those things would have wiped me out on 20mg Pred! Feeling a little better isn't a cue for bending and turning your body which could well add to/cause your rib pain. You've been told off!

Do you really, honestly need to put up a Christmas tree and decorate it this year? That would raise my blood pressure! Can you make do with a few strings of fairy lights on surfaces?

I'm unable to comment on kidney function but others will although I will ask if you've had advice regarding diet.

Feeling tired and weepy is par for the course. That will lessen with time but don't forget that the inflammation in your body is rolling on and contributing to symptoms. You really have to be gentle with yourself and take lots of rest.💐

[Daisymaud in reply to 123-go]

Thanks for your reply. I have asked for a DEXA scan but I was just asked lots of questions about my family history (mum had severe osteoporosis) own history of bone breaks (One minor and one very bad leg and ankle break and dislocation) some lifestyle stuff and then the result that I should take the AA whether or not I have the scan. I started the Prednisolone at the beginning of October on 25mg which worked for three days then the pain came back so increased to 30mg then reduced back to 25 and now 20.The very worse thing today has been breathlessness, not only going up stairs but actually on a short walk on the flat with our little dog. I’m ok sitting down doing nothing!!! Not how I like to live at all. Another challenging day!

[123-go in reply to Daisymaud]

I should think most people here will identify with life not being the same as pre-PMR: it's horrible but things will get better.Were you pain free on 25mg?

[PMRpro Ambassador]

Why do you HAVE to start AA?

There are reasons other than "disease" as such that can affect the eGFR which they use to define the stages of kidney disease. When it was introduced to see if it could be used as a screening test for deteriorating renal function the kidney specialists were very displeased that it was to be quoted willy nilly without expert input.

As far as I can see, you haven't mentioned how old you are. A reduced eGFR develops in almost everyone with age - and while a reading under 60 is defined as stage 3 CKD, a reading under 60 can be perfectly normal for an over 70 year old. To actually be diagnosed with CKD requires far more accurate testing than the eGFR which is based on some assumptions which may not be correct - and requires abnormal levels of other things at the same time.

You can almost certainly improve your Hba1c level - the one you refer to as sugar. It relects the average BS level in your blood over the last 3 months and by cutting your dietary carbohydrate it is possible to get it down relatively easily - pred makes the liver release random spikes of glucose from body stores in liver and muscle. You can't influence that but you can reduce the effect by cutting carbs, especially processed carbs and added sugar and fruit. There are lots of posts about it and success stories on the forum.

[Daisymaud in reply to PMRpro]

Thanks for your reply. I’m 72, and normally have a very busy lifestyle. I was diagnosed with CKD about 5or 6 years ago and have kept it very stable. I am very careful with my salt intake and carbs but my downfall is fruit which I love. My recent Hba1c has risen from 42 to 48 since I started the Pred.I’ve had increased breathlessness today which has really worried me. (not only going upstairs but walking the dog on the flat pavement . ) Take care.

[SheffieldJane]

Sorry that it is hard right now. I am with you on those Pred side effects. Ensure that you really need AA with a bone density scan - it is the only good result I get. Well done re-Christmas. Enviable! This is the stage I spend too much trying to even everybody up, then it’s embarrassingly too much on the day - I never learn. 🎄

[Daisymaud in reply to SheffieldJane]

Thanks for your reply. Yes I’ve been trying to even everyone up too! Except for our 5 year old grandson where the sky’s the limit!! We also have birthdays and anniversaries to buy for in December. The latest news from the lovely COVID virus has worried me, as now it seems I have a reduced immune system with the PMR and the steroids? Is that right?😷

[SheffieldJane in reply to Daisymaud]

That’s why we get an extra vaccine. I have had my 3, have you?

[Nextoneplease in reply to SheffieldJane]

The JCVI guidance accepted by the government today, recommends that we also have a fourth jab! This would be our actual booster (as you know, the third jab was a ‘third primary’). I haven’t found any indication yet for how long there should be between jabs, other than the general guidance for boosters, which can now be given three months after a primary dose…

Ouch! My head hurts 😉x

[SheffieldJane in reply to Nextoneplease]

Yes the last time I spoke to a doctor it was 6 months until the 4 th booster jab but there is talk of narrowing the gap. My family from Australia have just booked a hotel to quarantine in until they’ve had a test. Surely you can’t just choose a hotel?

[Nextoneplease in reply to SheffieldJane]

I may be wrong but I thought the government had contracts with certain hotels for this purpose. They’re then presumably not run like normal hotels, ie all meals are room service, no maid service etc ??

[SheffieldJane in reply to Nextoneplease]

That’s what I thought. They have to stay somewhere for 2 days and be tested. Australia is not a red country.They are possibly trying to protect us and the other grandparents. We are all vulnerable. My son is tested every day for his job ( mental health crisis house). He lives at home.

[Nextoneplease in reply to SheffieldJane]

Yes, that makes sense now. They could theoretically come to you and isolate in the spare room (!) but that wouldn’t work at all would it? They know that as soon as they see their nearest and dearest they’ll want to really be together, so yes, I’d say they’re protecting you and the other grandparents. They sound lovely, very thoughtful of them 😊

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

This from government site - although is in FAQs-

“Who can get a 3rd dose of a COVID-19 vaccine

A 3rd dose of a COVID-19 vaccine is being offered to people aged 12 and over who had a weakened immune system when they had their first 2 doses.

This includes people who had or have:

a blood cancer (such as leukaemia or lymphoma)

a weakened immune system due to a treatment (such as steroid medicine, biological therapy, chemotherapy or radiotherapy)

an organ or bone marrow transplant

a condition that means you have a very high risk of getting infections

a condition or treatment your specialist advises makes you eligible for a 3rd dose

When to get your 3rd dose of a COVID-19 vaccine

You'll usually be offered a 3rd dose at least 8 weeks after you had your 2nd dose.

Your doctor may suggest a different time depending on if you have any ongoing or planned treatment that affects your immune system.

If you think you're eligible for a 3rd dose but have not been contacted, speak to your doctor”.

As you say booster should be available 3 months after last primary vaccine

[Nextoneplease in reply to DorsetLady]

Thanks DL 😊 Booster after Christmas/late January it is then, for those who were eligible for a third dose this autumn x

[DorsetLady PMRGCAuk volunteer in reply to Nextoneplease]

Fingers crossed.

[Daisymaud in reply to SheffieldJane]

I was given the “booster” When I asked at the surgery they didn’t seem to be interested in the third vaccine. When I asked the nurse at the vaccine centre she completely ignored me!

[SheffieldJane in reply to Daisymaud]

Clearly she didn’t get the memo. Was the booster your third jab? If so, it is a rose by any other name.

[Daisymaud in reply to SheffieldJane]

Yes it was my booster. Ps I live in Doncaster ! Hope you’ve been ok in the snow. It missed us as usual!

[SheffieldJane in reply to Daisymaud]

I still get the childlike excitement when I see snow. ☃️

[SheffieldJane in reply to Daisymaud]

I have 3 adorable grandsons and one beautiful granddaughter. I know what you mean about the sky’s the limit though.

[Nextoneplease in reply to SheffieldJane]

Two grandsons and a granddaughter here - I spoil them and I love it!

[Sharitone]

Sorry you're struggling, but I'm wondering why your mum had such a bad time the day she took AA? I took it for 15months, and although it was a faff (the 'standing-up medicine') it never made me feel ill.

[PMRpro Ambassador in reply to Sharitone]

Quite a lot of people find it quite unpleasant to take

[Nextoneplease in reply to Sharitone]

It made me feel ill Sharitone- kind of migraine-y - that’s one of the reasons I ended up on denosumab injections (which also have their disadvantages)….

In fact when I was taking AA I remember telling my GP that I was effectively only functional 6 days out of 7 each week 😳

[Sharitone in reply to Nextoneplease]

Oh no! It's enough to make you run screaming from all medication, Glad you didn't say what's wrong with denosumab!😉

[Nextoneplease in reply to Sharitone]

The denosumab is great for me Sharitone - an injection every six months and I’m done! What I didn’t realise, is that when you stop (and you have to, sometime), you have to take alendronic acid for some months to prevent rebound fractures…..! Well, that’s as I understand it anyway……I’m putting it to the back of my mind for the moment 😳x

[DorsetLady PMRGCAuk volunteer]

I took AA for 4 years - no issues- and you don’t need to stand up - although hubby used to call “my standy uppy” tablets! Just don’t lie down for 30 minutes and drink plenty of water when taking it! But do check if it’s necessary.