Just need to vent!

[Hunter134]

I was put up to 15mg in April.Struggling with many health issues.Thrush won't go aft three weeks if Nystatin so I tried to start to lower Prednisone.Really dumb thing to do with being under so much stress.Lasted about three weeks then today I have the familiar swelling I get above my knees.So back up I go.This disease is relentless.

[PMRpro Ambassador]

Where is the thrush affecting? If you already have thrush in the GI tract you may need tablets for quite a while otherwise it goes round in circles reinfecting you. And a good probiotic will also help

[Hunter134 in reply to PMRpro]

It's on my tongue which came first then a week later went to my tonsils.Its not totally white but the throat is sore. I ve been eating Greek unsweetened yoghurt for weeks.Sometimes twice a day.Its sporadic dots only.Tge Nystatin is full of sugar and is affecting my sugar reads.

[PMRpro Ambassador in reply to Hunter134]

What sort of Nystain are you using? The liquid suspension has only a small amount of sugar in it and its evffect on BS is rare unless you have severe diabetes.

Are you sure it is the nystatin rather than the pred - it definitely affects BS levels and why we recommend cutting carbs a LOT, especially if you have diabetes.

[Hunter134 in reply to PMRpro]

It may be Prednisone.It is the liquid one,swish and swallow.I have hardly any carbs at all.I started to eat healthy in March and other than losing 40 lbs haven't had a well day.I eat meat and vegetables.Yoghurt and a few blueberries.Porridge in the morning.Dont eat sugar for obvious reasons.Got to be the Prednisone because my sugar was 4.5 this morning aft I take meds it goes up to 9 within a few hrs.

[PMRpro Ambassador in reply to Hunter134]

I think it is koalajane discovered her BS shoots up a certain time after pred so she doesn't eat in that period!

Porridge has wuite a lot of carbs - yes, low GI but still carbs and together with pred probably enough to send the BS up a fair bit. What about trying a low carb breakfast?

[123mossie]

Hi Hunter, sorry to hear you’ve got thrush on top of everything else. A couple of things - you could try changing your pred to a tablet, as the oral solution bathing your mouth & throat isn’t helping. You could also ask your dr for an alternative to nystatin such as miconazole. Finally a course of anti fungal tablets if no success.

[Hunter134 in reply to 123mossie]

My prednisone is a pill but it's playing havoc on my immune system.Iam trying apple cider rinse with the Nystatin but if it doesn't go I'll call for something else.Life isn't giving me a 💔

[Karenjaninaz in reply to 123mossie]

The problem with miconazole is that it interferes with prednisone and causes hypoglycemia. That happened to me after taking that for oral thrush - but it did clear it up.

[Hunter134 in reply to Karenjaninaz]

You are right it ups my sugar levels.Then add Prednisone it's a feast for yeast.Thanks for your reply.It helps to talk with everyone on here.Such kind people ❤️

[Exflex]

Sorry to hear about this, but regarding the Pred reduction, beware of the yo-yo effect.

[Amkoffee]

I have to take a daily prevention thrush med to keep from it reoccurring. I like Clotrimazole troche but I'm not sure of the sugar content.

[Hunter134 in reply to Amkoffee]

So you must struggle with it.My first time ever getting it and realize how stubborn and painful it is.

[Amkoffee in reply to Hunter134]

Yes and I actually don't get the typical white spots so I had it for 2 years and didn't know why my mouth burned whenever I ate.

[Hunter134 in reply to Amkoffee]

Iam glad it has resolved for you.Were you on prednisone at the time?

[Amkoffee in reply to Hunter134]

No I wasn't. But I have another autoimmune disorder called Sjogren's Syndrome and I've learned that it is common with this disorder.

[MiloCollie]

Get the thrush sorted out as a priority. I wouldn’t reduce steroids for PMR whilst you have this going on. Cope with one thing at a time. Hassle gp or see a pharmacist. Keep your chin up it will get better but it’s blooming miserable. X

[Hunter134 in reply to MiloCollie]

Thank you it was not the right thing to do to lower my prednisone.But it plays havoc on us all doesn't it?

[MiloCollie in reply to Hunter134]

It certainly does but we need it. I’m covid positive this week so have doubled my dose! My hips feel the best they have all year!!!!

[Hunter134 in reply to MiloCollie]

Iam so sorry to hear you got covid.My son his wife and kids are sick with it as well this week.My son and his wife are in their forties and they said it's been dreadful.Funny about your hips.lol At least less pain there!!!Thanks for the chat Hugs to get better soon.

[MiloCollie]

Cheers xx

[strawclutching]

Hi Hunter, sorry I'm a bit late to the party as usual, but you're right about the Pred lowering your immune system which always caused oral thrush with me, along with UTI's, etc. The Nystatin I found pretty ineffective, and the miconazole I heard can be an added problem for your adrenals. I got some tea tree toothpaste and tea tree mouth wash from Holland & Barrett which helped a lot, but the condition only really cleared up when the Pred dose was down to 10 mgs. Hope this helps.

[Hunter134 in reply to strawclutching]

I was upped to 15mg of Prednisone due to health issues.Aft getting thrush I tried to lower it but after 3 weeks I flared.I just can't seem to taper and I've had polymyalga for 3years.I had it 10years ago and had no problems getting down.Not now.k

[strawclutching]

You're ten years older so maybe try a more gradual taper to avoid flares. It's a pain having to put up with all these pesky problems Pred causes. Has your consultant suggested a steroid 'sparer' to help you taper without flaring? Something like Methotrexate or Actemra? Methotrexate has some nasty side effects for some, but doesn't bother others at all.

[Hunter134]

He has but I've got too much going on to lower my immune system more.Ive been waiting two months for a urologist for an infection.Took 4 antibiotics with little success.That gave me oral thrush.I can't win.