New to it

[nicolahg]

Diagnosed with polymyalgia 2 weeks ago. So far so good apart and from feeling tired and a bit grumpy

[DorsetLady PMRGCAuk volunteer]

Welcome,

We can all do grumpy at times🤦🏻‍♀️.

Have a glance through this......might make you even more grumpy! Hope not- healthunlocked.com/pmrgcauk...

PS - when you feel up to it, a bit more info on profile would be good - date started - dose etc, and country of residence - helps us to help you.

[nicolahg in reply to DorsetLady]

Have said thank for your very helpful advice elsewhere.

I got diagnosed quickly thanks to having recognised the symptoms; my sister had it twenty years ago. Started on Pred 25/1, 15 mg. I live in London. My husband has had cancer, metastatic melanoma, for about five years, so stress could be a contributory factor. He is in remission at the moment.

Having watched my sister struggling to get off steroids with a doctor urging speedy reduction, I will be cautious. And I will investigate the tapering spreadsheet.

Nicola

[DorsetLady PMRGCAuk volunteer in reply to nicolahg]

Good, and thanks for response to other post. Any help needed, just ask. Good news about hubby’s remission. Take care.

[SheffieldJane]

Welcome to the forum!

[PMRpro Ambassador]

Welcome - and do please tell us more about you and your PMR!

Yes - I remember grumpy ...

[123-go in reply to PMRpro]

Alive and kicking in my case but a huge improvement from the 'angry' stage early on 😇.

[PMRpro Ambassador in reply to 123-go]

I don't think I had an angry period - fed up when I didn't know what it was and grumpy due to pain. Then blessed relief the pain had gone.

My anger at present is about the idiots who don't understand the concept of infection processes and the role of lockdown and quarantine ... They wouldn't have lasted long a couple of hundred years ago would they!!!!

[SandraLinks]

Welcome! I’m pretty new, too, but now wake up each morning and enjoy reading about others informative experiences. It really helps.

[Cosmos22Marigold]

Welcome and keep reading the forum. Such a helfull site. You'll learn lots as I have.

[Cosmos22Marigold in reply to Cosmos22Marigold]

Also that my spelling is awful. Sorry.

[123-go in reply to Cosmos22Marigold]

Typos!

[PMRpro Ambassador in reply to Cosmos22Marigold]

Dunno - helful may touch a nerve at times ....

PS - you can edit a post, just click on More

[Cosmos22Marigold in reply to PMRpro]

Thanks for that. I am useless on a computer and I just found the more button. Will do that in future. See what I mean. Help is always on this site. So grateful. I'm never to old to learn. X

[nicolahg in reply to PMRpro]

Hope I am addressing the right person-

Beginning week4 on 15mg. I’m having problems with 4 days diarrhoea. ?down to pred. Set off by small over rich mushroom risotto. Have since been eating very conservatively - lots of plain rice- but it is not going away. I’m reluctant to consume lots of loperamide.

No pain. I am due to go down to 13.5mg in two weeks.

Any advice ?

[nicolahg in reply to nicolahg]

How can I go ‘private’?

[nicolahg in reply to nicolahg]

Sorry to 12.5 mg , not 13.5

[PMRpro Ambassador in reply to nicolahg]

Is there any chance it could be Covid? GI symptoms are actually a significant part of Covid. If I were you I would contact the Covid helpline - can't tell you what it is as I don't live in the UK - and ask them for advice. Ongoing gut problems shouldn't be managed with loperamide, you are quite right.

To have private conversations you use the Chat facility, either click on the paper aeroplane icon that says Chat at the top of the page. Or click/tap the avatar of the person you want to message to get their profile page and then use the Message box there.

[nicolahg in reply to PMRpro]

Many Thanks. No to COVID, I Think. Have had two Pfizer jabs, the second one five weeks ago.

If it persists will try the GP.

[PMRpro Ambassador in reply to nicolahg]

Doesn't mean it isn't though it is pretty unlikely!!! But you do need to speak to the GP. I think it is unlikely to be pred - but are you on any other medications?

[nicolahg in reply to PMRpro]

Only other medication is prophylactic very low level antibiotics because of recurrent UTIs.

[PMRpro Ambassador in reply to nicolahg]

Which one? Longterm use of antibiotics is also enough to kill of the good bacteria in the gut and that can lead to some of the bad boys getting the upper hand and causing diarrhoea, especially since the pred is probably also not improving your immune system. Have you not been told to take calcium and vit D supplements? You should be on them at least when on long term pred.

[nicolahg in reply to PMRpro]

Antibiotics: cefalexin and nitrofurantoin alternately.

Yes I am an calcium and vitD and omeprazole. Also take probiotics but not on a daily basis. Quite a lot of full fat yoghurt as well.

[PMRpro Ambassador in reply to nicolahg]

That's exactly what I meant -those are all "medications"! Omeprazole can cause diarrhoea and so can calcium for some people. It is a listed side effect for cefalexin.

Often one drug at a time doesn't cause the problem but by adding others the effect adds up. Do you NEED the omeprazole? Lots of us manage without a PPI at PMR doses, especially when they use a lot of yoghurt which also seems to reduce gut effects of pred. You could also try stopping the calcium for a few days - get some plain vit D tablets from the chemist because you do need that.

[nicolahg in reply to PMRpro]

Ok. On nitro....at the moment. Will try giving up the calcium/vit d combination for a while. I have some plain vit D. And will ease off the omeprazole (I had been taking it together with pain killers for a good few weeks prior to being diagnosed - roughly every two days). Presume cod liver oil tablets and cranberry pills - are ok? I think cranberry is deemed to be pretty ineffective as a ‘purifier’ so I will give that up too.

[nicolahg in reply to nicolahg]

And huge thanks!

[PMRpro Ambassador in reply to nicolahg]

Careful just stopping the PPI - you often need to taper the dose of that too or it can cause rebound acid production and reflux.

[nicolahg in reply to PMRpro]

Will be careful with it I promise.

[tangocharlie in reply to nicolahg]

Ah, see my recent post on UTIs which are sometimes misdiagnosed and in some cases might actually be due to Interstitial cystitis, which commonly goes with autoimmune illnesses. Did you have a swab/bacteria test to confirm they were UTIs? UTIs and thrush can also be a side effect of steroids. I was wrongly diagnosed and given antibiotics a few times before I started researching and asked for a referral to a uro-gynae specialist who thnks I have IC. Two rounds of abx caused all sorts of problems for me which I am now trying to sort out by taking things like Aloe Vera and probiotics to re build the gut biome that antibiotics destroyed. Also, being given several rounds of abx a few years ago for another problem with what doctors thought was parotitis gave me c.dif - have you been checked for that? It was also the start of my histamine intolerance problems that I am still trying to solve. Clostridium difficile, also known as C. difficile or C. diff, is bacteria that can infect the bowel and cause diarrhoea. The infection most commonly affects people who have recently been treated with antibiotics. It can spread easily to others.

[nicolahg in reply to tangocharlie]

Have had bacteria tests to confirm, but thank you

[tangocharlie in reply to nicolahg]

Good I'm glad your doctor did tests, I'll leave my response up though in case it helps others in the same position

[Bcol]

Welcome to the forum. Full of very helpful and amazingly knowledgeable people who will go out of their way to help you with any questions you have about this disease. No question is "silly" and don't be worried about asking.

[piglette]

I am so sorry you have PMR. Has your GP prescribed vitamin D with calcium and also organised a Dexascan to check your bone density? This is to help agains steroid side effects.

[MrsNails]

Welcome 🌺 there’s lots to read but try not to get overwhelmed. In the Pinned Posts (to your right) you’ll find a list of commonly used abbreviations which you may find helpful.

Take Care & we’re all here if/when you need us.

Best Wishes

MrsN

[Hidden]

Welcome, I was diagnosed at xmas so new to this as well, but anything I'm not sure about I just ask and always get advise, suggestions without judgement of sounding silly, this had been a saver to me the last wks

[bussell]

Welcome. I'm new to all this too (diagnosed sort of by phone as is the norm these days) and this site is a real life saver. Wonderful helpful people. There is nothing that someone else hasn't already been through and found a way to conquer/live with/mitigate. Our GPs however helpful do not have the time or direct experience to give us the advice we so badly need, but you'll find it here. PS Best advice I've had so far 1. Take part of pred dose around 2am - yes really

2. REST

Good luck

[Humphreydonk]

Hi Nicola. Stay strong. Hope things improve soon. Like you, I'm recently diagnosed- have just finished 1st week on Prednisolone 25 and am starting 20 mg for 2 weeks. First week has shown marked improvement so I'm hopeful .