Hello.

[Allcraft]

I was diagnosed in September 2021 and I’m new to this group. I recently phoned the Helpline and was very grateful for the support and understanding I received, during a very painful week, due to a fast taper off steroids. After the phone call, I contacted my surgery and was restarted on Prednisolone.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Have a browse around the site and have a look at FAQs- first few are covid related, but rest are in alphabetical subject order -

healthunlocked.com/pmrgcauk...

- maybe starting with this one for a bit more info. …and maybe you can educate your doctor about PMR!

healthunlocked.com/pmrgcauk...

But anytime any questions please ask.

[Allcraft in reply to DorsetLady]

Thank you, will have a read x

[SnazzyD]

Hello and welcome, you’ll find much support here. If have an hour or six, do have a read through the FAQ’s. Sorry, you have joined this club, as if bereavement wasn’t enough. However, it’s that kind of thing that can set the ball rolling. Your reduction plan, as you probably know by now, was far too fast for this condition that usually lasts a minimum of two years. Not sure GP was thinking to be honest. What side effects did you have and on what dose? Often patients aren’t advised on how to help these or even warned so it can be a bit of a shocker if you are not prepared.

[Allcraft in reply to SnazzyD]

Thank you! I was on 15mg Prednisolone and had hair loss, weight gain, bleeding gums, mouth ulcers, awful heartburn, night cramps, poor sleep pattern, fatigue….. retired from nursing 2 years ago at 55, hit a pandemic and now PMR!!!! Onwards and upwards it can only get better!!!

[SnazzyD in reply to Allcraft]

Ah, another medical person and a 50 something. There’s a few of us about. Re the side effects -

Hair loss can be the Pred but it can also be a response to a systemic illness. Mine nearly all fell out over two weeks and promptly grew back soon after. It then went through various phases. It isn’t permanent and reducing dose helps.

Weight gain is avoidable with a very low carb diet to avoid extra insulin in the system on top of the effect of Pred on the liver, inducing it to convert glucagon into glucose randomly. I started on 60mg for GCA and cut out all rice, pasta, potato, flours and maize until I got to low doses. I didn’t put on any weight and my average blood sugar remained normal. Many of us have had success with this and it is such a shame that docs usually assume weight gain is inevitable. The moon face and shape change is usually inevitable to some extent but again, this reduces with dose.

The other issue is fluid retention and while doses are up, low salt is good to counter the retention of sodium.

Stomach - What stomach protection measures were given or advised about?

Cramps are helped by increasing foods containing potassium and supplementing with magnesium because Pred causes loss of both these.

Fatigue - PMR usually causes a lot of fatigue, not just the Pred. For the first year, or at least the first 6 months, mantra is rest, rest, rest. Some people like me feel stuporous and uncoordinated in the first two hours of Pred so I took it at night to sleep through the worst. This effect is temporary and reduces with dose and to some extent when your body gets used to having Pred in the system.

Insomnia - Yes, it can be a problem. Some people take medication if it’s really bad until the dose drops. I just gave up on a full night’s sleep and existed on a few hours and naps until the dose dropped.

[Allcraft in reply to SnazzyD]

Thank you, I've been following Slimming World and Pinch of Nom for 18mths and eating healthy, I got to target with 2 stone loss but I've put a stone on since diagnosis. I had history of oesphageal ulcers due to NSAIDs for knee problems (total knee replacement at 43yrs) started on Omeprazole and Gaviscon with steroids and now on Lansaprazole. Needed no medication prior to PMR.

[SnazzyD in reply to Allcraft]

What we tend to find is that on Pred the usual healthy diet isn’t sufficient to prevent weight loss, there’s still too much carb. People do vary with how much carbohydrates they need to cut out. I found it was less about calories but more about what those calories came from. Anyway, I’m sure others will reply soon.

[Allcraft in reply to SnazzyD]

Thank you for all your help / info I'm going to re focus what I actually eat now. I'm feeling more positive with the pain back under control. Kind Regards x

[Rugger in reply to Allcraft]

Are you on gastro-resistant pred? If not, ask your GP to prescribe it. It's available in 5, 2.5 and 1mg tablets.

Best wishes.

[Allcraft in reply to Rugger]

Not at the moment but luckily I had some to restart with. Waiting for prescription ( was sent from surgery to chemist) not had any face to face contact, all being via phone calls!!

[PMRpro Ambassador in reply to Allcraft]

Are you using the ordinary SW approach? That is often rather carb heavy - I gather there os a lower carb version that seems to be better for when on pred.

[Allcraft in reply to PMRpro]

Thank you. Yes was doing well until steroids now transferring to group from online, going to re focus and focus on the old " red" diet ( reduced/ low carbs)

[PMRpro Ambassador in reply to Allcraft]

Like you and Snazzy - I had worked in the healthcare field (was married into it and mother of a nurse and paramedic, no escape!) and was still only 51 when the first symptoms appeared. Mine has never gone away, just keeps chugging on, but my husband was very ill for nearly 2 years and finally died in the autumn - it caused an almost permanent flare for the last year. I have got to a much lower dose in the last couple of months but it is quite scary how easily a simple situation to be sorted out creates enough stress to make me flare.

[Allcraft in reply to PMRpro]

This illness is so unfair, look after yourself, so sorry to hear of your loss. Xx

[Hidden in reply to Allcraft]

Ah! NHS nurse. You poor thing to succumb to PMR at such a young age. Wondering if stress can trigger PMR. You will be well versed with the disease though. All the best and enjoy retirement. By the way, have all those probs resolved now ?

[Allcraft in reply to Hidden]

Hello, yes done a lot of research but prior to diagnosis I had never heard of it, despite nursing for 39 years! Still have a lot of the side effects, but changing diet and I feel I have accepted it better, after the pain I was in with the failed taper.

[Hidden in reply to Allcraft]

I'd never heard of it either or GCA. I hope you improve soon. Take care

[Allcraft in reply to Hidden]

Thank you and you x

[Hidden]

Morning, as you've had a fast taper, look out for the tell tell signs of GCA. Tender head, tender temples, painful jaw when eating or opening mouth wide, even top teeth can ache, as mine did. GCA can cause potential blindness, so just making you aware. I was speaking with a lady in my local pharmacy who mentioned she had PMR, she knew nothing of GCA and was grateful I mentioned to be aware. Wondering why doctors and Rheumatologist don't tell patients about possible GCA. Wondering myself what the statistics are of people that have PMR that go on to get GCA....quite high I would imagine. What mg are you now taking ?

[Allcraft in reply to Hidden]

Yes!Thank you, was aware of GCA which is scary, I had information pack from PMR group when I was diagnosed. I'm back on 15mgs Prednisolone now, teeth and gums sensitive but not aching and occasional headaches ( always been prone to those) my husband also aware and is very supportive. Last week was a wake up call with the pain I had, it was worse than when it started, re focusing on diet now. x

[HeronNS in reply to Allcraft]

You may find that taking Vitamin K2 (not K1) can help with dental health, including over time lessening sensitivity. I've certainly found it helpful. Info on line re dental benefits is usually found on dental clinic sites, because they see how it helps. However Vitamin K2 is really important for bone health and helping to maintain bone density while on steroids (and always, really). It directs calcium to the bones and it's hard to get from our food because of the way our animals are now fed. In the old days grassfed animals converted K1 to K2 for us, but now that they are fed grain they can't do that.

[Allcraft in reply to HeronNS]

Thank you, will have a look, taking Adcal & Alendronic acid, also using Sensodyne toothpaste which helps, and I've got dental checkup soon as well.

[HeronNS in reply to Allcraft]

I think the bone turnover in the jaw must be particularly fast, as it seems to be more vulnerable to the effects of medications, which may be why Vitamin K2 benefits are more easily noticed with teeth.

[PMRpro Ambassador in reply to Hidden]

About 1 in 6 patients who present with PMR are thought to go on to develop GCA - but a lot of those will be because PMR can be a symptom of GCA. Late progression to GCA is much less common. And I have one friend who started with GCA, was through it and off pred in just over 2 years - but developed PMR 4 years later!

[Hidden in reply to PMRpro]

Oh wow, that's high. Such a shame about your friend. For the first time yesterday I felt that awful fatigue that many on forum talk about. I had no energy and felt awful, early night and didn't sleep until 5am this morning. Feel much better today. How many of the symptoms of PMR are also GCA ? Thanks for reply.

[PMRpro Ambassador in reply to Hidden]

Sorry - don't understand what you are asking. PMR in and of itself can be symptomatic of GCA but the PMR symptoms alone wouldn't usually suggest you were about to get GCA. There are symptoms like headache and visual signs that would then suggest that your PMR wasn't "just" PMR but a part of GCA.

[Hidden in reply to PMRpro]

oki-doki, got it