Completely bewildered.

[Greensleeves]

Hello my friends, I’ve had PMR for just over 12 years now , currently taking 7.5mg Pred . Have started a very slow taper again, even though I don’t feel prepared mentally , with all the ongoing stress .

I had a TIA early September , I’m still awaiting for a brain MRI scan and failed the tilt table tests twice. Although I pass it at home . My HR doesn’t increase on standing in a hospital setting and my blood pressure is high lying down, but all normal at home and with a new blood pressure monitor.

I’ve been discharged from the TIA clinic, put back under the care of the GP .

I couldn’t tolerate the Clopidegrol blood platelets thinner or the Statins . My mouth swelled and blistered.

I’m taking baby Aspirin and Plant Sterols , have also increased my daily walking .

I have Gastritis so take both Pred and Aspirin with food , taking Pred after midnight ( gastro resistant) , Aspirin around 10.30 with Porridge. Also Famatodine for the Gastritis.

My cholesterol wasn’t particularly high 5.4. but they prefer it to be lower , non HDL cholesterol 3.8.

I was surprised, didn’t pick it up initially, but on my discharge letter my HbA1c was 41.

So very close to the pre diabetes levels ,

My diet has been very low carb , no starchy veg , or sugar for years.

The only thing I’ve changed is gluten free Porridge in the morning to take with the Aspirin , also Porridge being good for reducing cholesterol, along with a fruit smoothie later in the day when i take my supplements , garlic ginger etc , I have stir fries most evenings for speed and convenience.

I’m shocked at the H bA1c number.

I don’t know what to eat now .

Is it safe to continue with the morning Porridge , should I stop the low fat yogurt smoothie due to the fruit ?

The hospital suggested I try Atorvastatin again as a preventative, but didn’t even comment on the high , close to pre diabetes number ,

It was the same 10 years ago when the GP mentioned casually I had stage 3 CKD probably from all the UTI’s . I’m still taking daily antibiotics for these .

I know I’m very fortunate compared to what others have to contend with but I really don’t know what to eat anymore.

I can’t rest until I’ve had the MRI either, the CT scan was fine but all my Mum’s issues were eventually found by an MRI .

All advice and experiences greatly appreciated. xx

[PMRpro Ambassador]

That really isn't a dramatic Hba1c level! I really would't worry about it. It isn't even pre-diabetes never mind close to diabetes!

If you can't take statins - why haven't they offered Ezetimibe and bempedoic acid which are approved for use in the UK for patients who don't tolerate statins?

Some people have discovered that they develop spikes of blood sugar in a window about 4-8 hours after taking their pred - so that may be worth thinking about if the porridge and smoothie could contribute. The smoothie has other problems besides the fruit in it - making the fruit into a smoothie means you get a dramatic release of the sugar, eating the fruit whole would be less of a spike. You have already released the sugar from the cells and it rushes into your body with nothing to slow it down.

You are panicking in the hospital - white coat syndrome is VERY common, Even Prof Sarah Mackie was shocked to discover that SHE had high BP when it was taken in clinic!!!!

[Greensleeves in reply to PMRpro]

Thank you for your wise advice and voice of reason PMRpro .

I thought that figure was almost at the diabetes stage . I was going to comment this morning , but realised the post concerning pre diabetes was 2 weeks old .

Despite the awful blistered swollen mouth, I haven’t been offered any other form of Statin. I will email the GP surgery in the morning and request those alternatives. I can only imagine it’s down to cost saving . If there are alternatives then it makes sense to be offered those instead,

I’m eating the porridge more than 8 hours after the Pred , I’m staying up late at night to take it and extremely tired in the morning.

I can see how the smoothie will cause a dramatic sugar spike , I will instead eat an apple or pear as a snack and instead have a light salad to take my supplements for lunch.

You’re spot on re: white coat syndrome, i actually tremble and shake. What a big baby, I wish I could stop it,

I remarked to one of the hospital doctors that I was nervous, he did say doctors are often the worst patients and he’s terrified himself.

I thought he was trying to make me feel better , but if Prof Sarah Mackie experiences white coat syndrome maybe he was being honest after all.

Thanks so much PMRpro , I feel much better now and have more idea going forward . First thing I’ll do is request one of those alternative brands of Statin .

Take care and thank you once again. xx

[PMRpro Ambassador in reply to Greensleeves]

They aren't statins - they are different substances. I can't take statins - they are what I get instead, though to be fair, I am in Italy!

[Greensleeves in reply to PMRpro]

I’ll still email the GP and ask them tomorrow PMRpro .

I had such a bad reaction from admittedly only one type of Statin , but 111 and the TIA clinic mentioned they can cause a dangerous syndrome . I don’t really want to risk it again, hence trying plant sterols and porridge. It’s worth asking them, I never bother them so they’re getting 7 years worth of requests in a condensed time frame.

Italy seems to be much more advanced than the UK . I even asked about Actmara for 12 months, the GP said there’d be no chance with the local rheumatologist.

I’ve read about other statins , I’ll have a read about the ones you mentioned.

Thank you for the update and the information. Take care xx

[PMRpro Ambassador in reply to Greensleeves]

Apparently the Rome government feels it is unreasonable to refuse to fund a medication that is approved for something if it is what a patient needs and a doctor submits a claim. To be fair, the locals here aren't very demanding about medications!

[Greensleeves in reply to PMRpro]

I think the government in Rome are most reasonable , what an amazing place to work, it seems the Italians aren’t demanding people .

We have much to thank the Romans for from our British past .

I’ve emailed the GP surgery, still waiting for a response.

Thank you PMRpro xx

[piglette]

It sounds like you are looking after yourself very well. You are not diabetic, you are not even pre-diabetic. I am Stage 3 CKD too, my GP said he was as well and his reading was worse than mine. Nothing has been done about it in my case. What is your MRI for?

[Greensleeves in reply to piglette]

Hello Piglette , PMRpro has thankfully put my mind at rest about the diabetes .

It seems stage 3 CKD is quite common, we don’t have to do anything other than avoid Ibuprofen and salt .

The MRI is for my brain after having a mini stroke.

The hospital weren’t going to give me one . I avoid tests if possible but my Mum’s TIA’s were only found and diagnosed after having an MRI .

My dear Mum also had had undiagnosed GCA and PMR , she ended up having a big stroke which could have been avoided if she’d been given Pred . Instead she was diagnosed with Frozen shoulders , TMJ and migraines when her sight was impaired. All unnecessary if she’d been treated. Like myself her inflammatory markers were never raised.

Take care and thank you for responding Piglette xx

[piglette in reply to Greensleeves]

It sounds as if you have everything very well organised. If you are able to get an MRI that is great news, at least you will then know where you stand. Good luck.

[Greensleeves in reply to piglette]

Thanks so much Piglette , there’s quite a long wait for the MRI unless I pay privately. Hopefully the appointment comes through soon.

You’re right, at least I’ll know what’s what. I was quite surprised all the different causes for TIA’s .

Thank you for replying and take care xx

[piglette in reply to Greensleeves]

MRIs are quite pricey privately. You never know you could get it quite quickly on the NHS. It does happen.

[Greensleeves in reply to piglette]

Fingers crossed it happens quite soon on the NHS ,

It would certainly be one less thing to worry about Piglette , I’ll be wanting heart tests next , after googling, that can be another cause for TIA’s .

Over thinking isn’t good. I do feel more peaceful after the lovely replies this evening.

Take care xx

[piglette in reply to Greensleeves]

Relax, lie back and look after yourself.

[Greensleeves in reply to piglette]

I will do Piglette , thank you, I’m enjoying the DNA programme on tv with Sue Johnstone and Ricky Tomlinson. xx

[PMRpro Ambassador in reply to Greensleeves]

TIAs linked to heart issues are usually due to arrythmias and having an ECG won't show much unless you are in an arrythmia when it is done. More to the point is to be aware if you get any palpitations and ask for them to be checked. You could be on a monitor for months and find nothing otherwise. Stop worrying!!!!!

[Greensleeves in reply to PMRpro]

ECG’s have all been fine , it’s the dreaded Dr Google.

No palpitations , it’s all been vision and dizziness issues PMRpro .

I did read they put people on heart monitors for a month.

I’m not usually like this , it’s been a bad time and I was convinced it was GCA .

I feel extremely guilty when you’ve all been through so much.

Thank you and take good care . xx

[Mfaepink1973 in reply to Greensleeves]

My husband had several TIAs and only had a scan after the first. All the scan told us was that he’d had a TIA not what caused it.

[Greensleeves in reply to Mfaepink1973]

Thank you for replying, I’m sorry your husband has had several TIA’s .

I do think some hospitals are very lax ..

I may be overly sensitive as my mum had a big Stroke after several TIA’s and untreated GCA .

I cared for her until losing her last year. She wasn’t even dying but the respiratory doctor decided to start EOL , despite me trying to fight him and my mum expressing her wish to live . He said his colleagues would treat but she’d get pneumonia again. They used Best Interest .

It’s left me with PTSD and feeling as though I’ve lost my right arm without her. She was only 18 years older than me , my mum and best friend.

It was extremely awkward at the TIA clinic as that Doctors wife is head of the Stroke and TIA unit . She actually refused to see me, I told all her colleagues the reason why.

Doctors can’t play God , my mum wasn’t in pain, she’d have gone when she was good and ready .

I hope your husband doesn’t have any more or they’re fleeting.

Take care xx

[Mfaepink1973 in reply to Greensleeves]

My husband died aged 61 six years ago. After his first TIA the doctor and I agreed there was no point him going to hospital when he had them as all they could do was confirm he’d had a TIA . Sadly he had a lot of other health problems and died due to them not to a stroke.

I’m sorry you feel the treatment your Mum received was inadequate and hope you get some answers to your problems but hope you’ve been reassured that your HBA1C is nothing to worry about. Have you thought of asking for medication for your anxiety?

[Greensleeves in reply to Mfaepink1973]

Oh no , I’m so sorry to read this sad news. How dreadful, your husband was so young, life really is a rollercoaster.

The GMC weren’t impressed with the Doctor in question, but he’s kept his job . Whilst I believe quality of life is vital , if a patient isn’t EOL and wants to live their wishes should be respected and upheld.

My mum had a lot of life left in her , she was looking forward to a holiday when she got out of hospital. She was an absolute pleasure and brought joy to us all.

I feel greatly reassured re : the Hba1c , it was a friend who alarmed me, saying it was close to being Diabetic.

I never had health anxiety before catching Covid in 2020 , then this with my Mum , I was always more concerned about others.

I’ve had a counsellor ring this afternoon to offer CBT . I hadn’t considered antidepressants, nor been offered them, even though 3 doctors have now suggested I have PTSD .

It may be the way forward, although they’ve refused my request for the alternative statin .

Thank you for your reply. Take care xx

[suzy1959]

Welcome to the long timers’ club. I’m so sorry that you have so much to deal with all at once . As the others have said, please don’t worry about your Hba1c when you already have enough to take your attention.

I also want to share my understanding of all these issues- I am diabetic, taking blood pressure meds, Ezetimibe for cholesterol and Esomeprazole for a hiatus hernia among other things- and I know that diet is of much less importance than we are so often led to believe. That is what you are dealing with- that your very good diet is not helping you all that much. Getting the right medication is much more important . I don’t like taking it either but there it is.

Good luck- I’m sure this will work itself out!

[Greensleeves in reply to suzy1959]

Hello Suzy ,

Thank you for replying. It’s no fun being in the long timers club but our QOL is more important in my opinion. I’ve been more thankful for the Pred than not .

I’m sorry you have much to contend with, but you fortunately have the correct medication to keep these issues under control.

I’ve never been been a foodie person, there’s been lots of stress which has taken my appetite away. I’d happily live on crisps but have been told to limit salt.

I was quite happy to take the prescribed statins but didn’t expect the reaction. I can’t take Omeprazole anymore for my gastritis, I was happy to stop that but have experienced a bleed beforehand hence the Famatodine and porridge.

I’m going to request a different statin in the morning. My blood pressure is fine when I’m at home, it goes up in a hospital setting.

Thank you Suzie , stay well and take care. xx

[Purple-Owl]

What are your symptoms? How do they tell you if these changes to your pills and foodstuffs are working ?

I would also like to know what a TIA is.

[DorsetLady PMRGCAuk volunteer in reply to Purple-Owl]

See here -

nhs.uk/conditions/transient...

[Greensleeves in reply to DorsetLady]

Thank you DL xx

[Greensleeves in reply to Purple-Owl]

I don’t know how they intend monitoring Purple-owl . I hope I find out more when I’ve had an MRI .

Thank you for enquiring xx

[Bramble2000]

I’d be very happy with your HbA1c result. Sometimes, simply ageing causes blood sugars to rise especially if we’re taking Pred. Seems like you’re doing all you can, within reason.

[Greensleeves in reply to Bramble2000]

Good to know Bramble , thank you for replying. xx