WTF?
Apparently having GCA & PMR wasn't enough of a challenge for me...
As of yesterday, a Baker's Cyst, Peripheral neuropathy (or some such similar problem)
AND, WAIT FOR IT....
ORAL TRUSH!!!!
COME ON... SERIOUSLY!!!!!
GROSS!
Ohhhh Come on... : WTF? Apparently having GCA... - PMRGCAuk
Ohhhh Come on...
85 Replies
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DorsetLadyPMRGCAuk volunteer
Been there...had it twice early days!
Just another notch on the bedpost in this game called GCA! Or rather Pred!
in reply to DorsetLady
What do I do????
I have no hydrogen peroxide!
I will use salt water tonight... but should I buy hydrogen peroxide, or an anti fungal medicine, or talk to the pharmacist! ?
Speak to pharmacist first. I found I need a couple of courses of Nystatin (liquid) - I had to get it on prescription, not sure if you can buy it OTC- to get rid of it completely.
Just another pain in the a##e, but don’t get down in mouth about it (sorry! British humour🙁)
in reply to DorsetLady
Ahhhh okay, cool.
Hahahahahahahahaha! Okay that made me laugh!!!! Thank you !!!!!
Dear God, it shouldn’t be allowed, you poor thing! Not that it will help but you have all my sympathy. It makes my problems, husband with a new knee replacement, fade into the background. Energy levels have hit rock bottom but oral thrush is horrible. I keep telling myself all this will pass, trouble is how b****y long do we have to wait.
in reply to Jean56
Thanks.
The hits just keep on comin!!!!!
in reply to
It shows you what your immune system working normally stops happening. A simple way of looking at it I suppose but it is in attack mode against you and you body, not just the things a normally functioning system would attack.fingers crossed you can have a couple of months in sleep mode.
in reply to
Hmmmm? The greatest of indignities... when your own body is in "attack mode," against itself!
in reply to Jean56
Thanks again Jean54. I was too tired and 'fed up,' last night to respond properly. I hope your husband knee replacement isn't putting too much of a strain in you... : ( Take care of you and get those energy levels back up there! Yes thrush sucks, but in the big scheme of things it's just another test.
"God only gives us what we can handle... and he apparently thinks I'm a bad ass!"
Jean56 in reply to
To be truthful, it’s hellish, I’m exhausted. It’s a week since since operation. He came home Sunday and it seems like years. I can’t get enough sleep, he needs help to the bathroom in the night. I tried last night sleeping in the guest room but I didn’t hear him calling and we had a near disaster. He has problems from childhood polio that makes his balance precarious, that coupled to the new knee is not a good combination. I’m trying not to feel sorry for myself, poor man he is in pain, but I’m so tired physically and mentally. This 24/7 of having to be on call isn’t good with this b****y disease. Just had my breakfast so onwards and upwards. I hope you get meds sorted to combat the thrush. Life really can stink!
Is it just for a pee? Ask Occy Health for a bottle or get one from the chemist so he needn't get up to the bathroom. He may not like it - but would make a lot of sense for both of you - and both of you need consideration, not just him.
Oh we have a bottle. He seems unable to use it, made even more work for me clearing up and washing. I asked how he managed in hospital, his answer, I don’t know. Going to have a word with doctor on Monday, he’s ok during the day but at night..... he does need to go, it’s never a wasted journey. He has been visiting the Urology clinic for raised PSA for a number of years, maybe further investigation is required. His mobility is improving. I’m a hard task master where exercise is concerned. I need him up and running!
What about just sitting up on the edge of the bed to use it? Then you wouldn't have as much effort for you.
Or is this the "if I do it badly I won't be asked to do it again" phenomenon?
You do have a point, I do question his reluctance or objection to things. Often when pushed he doesn’t have an answer to, ‘why not?’ He does seem to be having a degree of confusion. The painkillers are not helping, I did query this with the pharmacist. He had a brain haemorrhage a few years ago, which the doctors were astonished he survived. Since then I’ve been warned that he may suffer confusion under certain circumstances. He never does things by halves. A mild chest infection a few weeks ago finished up as a 999 call as he lost the use of his legs and became confused. Very similar to the symptoms of the brain haemorrhage but without the headache. He also has a heart valve replacement. He’s had his money’s worth from the NHS, I can’t fault them. Without their dedication and care he wouldn’t be here. Better night last night. Only three wake up calls. I restricted his fluid intake from 6pm. Plenty to drink during the day, water only for pill taking in the evening. We will see what happens tonight. My mantra at the moment is, It will pass.
So sorry to hear of more problems for you just when you appeared to be going on a bit better. The only thing I would suggest for oral thrush is the salt water but more than that plain live yoghurt such as Yeo Valley. Hope this helps and that you soon feel much better. D
Okay, thank you! I just did a himalayan salt water rinse and I eat Yeo Valley organic greek plain yoghurt every morning. Maybe a few times a day?
You don't think I need a hydrogen peroxide or an anti fungal medicine?
in reply to
You are doing the right thing by seeing your GP as perhaps you need an antibiotic Good luck. D
Loriel in reply to
Of course you need the anti-fungal. Use Nilstat Liquid but if it's not enough you can get Nilstat tablets. The liquid should work as long as the thrush hasn't travelled right through your body, as it can if not treated quickly enough. Prescriptions needed.
Whilst yoghurt will relieve the symptoms at the time of eating it, it won't get rid of it. Yoghurt is kind of a preventative. If you have to take anti-biotics you should always eat yoghurt every day through the course of treatment. Same with taking steroids, use yoghurt every day for as long as you are on these awful things.
Hell I can't even use a preventative for asthma without getting thrush. Now the ventolin gives it to me as well. Pred is in the same zone. It's a steroid so be prepared to eat yoghurt often and before you consume these meds to get a head start. The days of using Gin Gin Violet for thrush I think are firmly gone. No more purple mouth, yeah.
Hope you get relief soon. €)
Yes - but the inhaled steroids are actually far worse for causing thrush as they remain on the oral surface. That's why you are told to rinse your mouth after using them.
Sorry didn't see your reply sooner. I know to rinse, gargle, rinse and gargle and rinse. The lengths I go to are well beyond the call of duty.
Doesn't work for me at all. Has just gotten so much worse over the years. Doctor is perplexed over why it keeps happening too.
Apparently just susceptible to it.
in reply to _Lori-el
Sorry to hear you get it a lot!!! That's a bummer.
I realised just this morning that I think it is BACK!!!!! Crack in the corner of my mouth, white, stringy, stuff in there this morning, sore throat in middle of night. F@!* @£$ *&%@!
On the bright side at least its only oral,
Be grateful for small mercy's it could be worst
in reply to Rose54
OH GOD! As far as I know!!!!!
in reply to
You would know about some of the other areas if it was there. I saw someone mention toothbrushes. Sterilising or replacing toothbrushes is vital. I literally go and buy a couple of packs of cheap brushes and replace all the time.
Rokerman in reply to
Rose is right - it could be worse........ (and it’s hell for blokes as well! Dontcha just love PMR)
in reply to Rokerman
Ummmmmmm, no. : )
Suet3942 in reply to
Believe me you would know. Lol. !!
I had this recently. Nystatin prescribed twice now. Plus I bleach toothbrush daily in special pot (a gift from a friend). Plus I mouthwash. Plus after nystatin runs out I use daktarin gel which you can buy over counter. Plus I, rather disgustingly, keep the full fat natural yoghurt in my mouth for as long as I can (if it works I will tell you!). Good luck getting rid!
in reply to Pongo13
Unfreakinbelievable!
in reply to Pongo13
Hi Pongo 13, Sorry I was too tired and fed up last night to respond properly. Sond like ou got this whole thrush thing under control! I read somewhere last night not to use regular mouthwash with thrush as it interrupts the natural flora of the mouth... but now I cant find the article! : ( I sat watching TV and sucking on full fat natural yoghurt until I could not resist the urge to swallow!
*laughing* A few times, I almost busted out laughing at the absolute absurdity of my situation and envisioned, liquefied, white yoghurt being sprayed all over the already "dog scratched, purple leather couch!
If I don't laugh... I will surely cry!
xxx
Pongo13 in reply to
I read about mouthwash too but decided to keep going. I've got chelitis too and it is now spreading all round the mouth - more like "out of control" I think! I now have vision for day of yoghurt coated pooches - soooo funny! Have a lovely day x
in reply to Pongo13
Hahahahahahahahaha. Yoghurt coated pooches... even funnier!
GP always gives me Daktarin (Miconazole). It works like a charm and fast too!
in reply to stellafmdm
Going to GP at 9:30... many thanks!
Oh dear. Something I am familiar with...everywhere mouth under breasts etc. I almost suggested thrush as the smell you had. I do smell yeasty when the thrush starts. Nystatin and salt watered good but not at the same time. The Nystatin should be coating the whole mouth. I always take a pill if I have it in more than 1 place..it could also account for sinus issues. Ouch re baker's cyst. The housemaids knee I had was bad enough. No more wine mushrooms sugar or anything that grows yeast for a while. Since pred I seem to have permanently gotbthrush and prior to insulin had carbuncles and boils everywhere too. It will hopefully stop reoccurring once pref lower and therefore blood sugar not spiking as well. 🌻🐓🐔 Couldn't find a thrush emoji so hens will have to do.
in reply to
Thanks Poopadoop, Yes, could definitely account for sinus issues! I noticed tiny white pustules on the inside of my nose last week and stupidly did put two and two together. I wasn't until last night when I noticed the rough, white rash on the inside of my mouth, that I FREAKED! Baker's Cyst under control thanks to aggressive attention by Rheumy, peripheral neuropathy, scheduled to be tested, diagnosed and hopefully treated... and thrush just another notch in my belt!
Thanks for the chickens they made me laugh!!!!!
prospecter7 in reply to
What did the Rheumatologist do about the Baker's Cyst?
in reply to prospecter7
She drained the fluid (3 vials of yucky stuff) and the shot cortisone into it. It killed that night but the next day felt so much better! Thanks for asking!
prospecter7 in reply to
My husband has had them twice, but was told there was nothing to be done about it, as it would eventually go away. Interesting that yours was treated. Which country are you in? We are in a Canada.
in reply to prospecter7
Hi prospecter7, I'm in England.
She injected the cortisone in the torn meniscus, and drained all the fluid around the and behind the knee. It really hurt that night, but the next day, WOW! the relief was amazing!!!! There is definitely something that can be done!
prospecter7 in reply to
I can imagine that the relief was worth it. The first time my husband had one, he was on crutches for a period of time and had to go up and downstairs on his bum! The second one wasn't quite as incapacitating although it stopped his summer activities in their tracks. I think it was more a case of, nothing would be done, rather than that nothing could be done. We are very short of both Rheumatologists and Family doctors in my part of the country. My GP oversaw my PMR, no question about seeing a Rheumatologist. 4 yrs. and 4 months later, I came off Prednisone mid December but am dealing with lots of withdrawal symptoms. One thing gets better and another starts! Crickey!
in reply to prospecter7
What a shame... the relief was instant. It is starting to fill up again though, I can already feel it. I will most likely need to get the meniscus mended, but not until after all this other BS, is over and done with. Sorry you are dealing with withdrawals symptoms... I know for experience they are he WORST! Worst than disease symptoms, I'd say. Best of luck!
prospecter7 in reply to
Thanks for the good wishes and the sympathy. Hope things improve for you soon! Spring has been dancing around us since yesterday. The tulips are coming up and the Public Gardens in the heart of our city (a true Victorian Garden) is officially open today!
Mamici 1, I was treated for oral thrush 4 times with prescription medicine.... all to no avail until a young doctor referred me to a consultant to look for amongst other things oral cancer. Not cancer thank goodness but auto immune disorder, At the same time found I was B12 and zinc deficient so keep an eye on it.
in reply to May10
WoW! Bummer. Seeing doctor at 9:30... after reading more about all the places thrush can thrive I am sure it is in my sinuses and possibly my blood! ... but that might be me just freakin out!
This too shall pass.
thanks
I reckon you are competing for the longest list of ailments.
in reply to sharonnorfolk
Ya think????? I have been, historically, a very competitive person, but I thought I had given that all up when I left American Express!
Seriously is there this innate, defective, competitive tendency that I am unaware of, whereby I have to WIN at everything? Even having the most and sometimes most obscure signs, symptoms, and side effects known to man?
That's messed up. I need help! ; )
Yeah, that's not nice of Mother Nature.
At least there's lots of things to do to fix some of this.
I'm sorry you're having such a rough time of it.
Keep laughing, though. Sometimes it's the only thing that makes sense...
in reply to GOOD_GRIEF
Thank Good_Grief. "Laughing," it's really the only thing that keeps me from crying!
"Mother Nature doesn't care if you're having fun." ~ Larry Niven
Oh dear Melissa - NOT FAIR !! - you've had more than most to deal with - but now you can at least get rid of this thing and tick it off your list !! Someone I knew who ad oral thrush used pineapple juice as a mouth wash but I think I would try something more 'proven' fro the chemist as others here have recommended.
I hope you get this out of your system fast - as you would say it IS 'unfreakinbelievable' and you are more than entitled to feel INDIGNANT !!!
Casting 'anti-thrush' spells your way ....
Rimmy
XX
in reply to Rimmy
Pineapple juice is supposed to be a good thing for mouth issues. I remember that it was something to do with an enzyme in it. All I know us when I used to eat fresh pineapple it made the corners of my mouth sore. It deliciousness was worth. Risk Vs reward.
yogabonnie in reply to
but do not use pineapple juice if on statins! Or, I think blood thinners.
in reply to yogabonnie
I though it was grapefruit juice? Omg I keep adding and subtracting foods. 😂🤣😁
yogabonnie in reply to
hahahaha. once again. brain fog. I am getting WORSE!!!! yes NOT pinapple. grapefruit!!!!!!!! I should just NOT comment. But then how would I know I am losing it___????? ha!
in reply to yogabonnie
Hahahahahahahaha. Indeed!
in reply to yogabonnie
Anything with vit k for blood thinners.
It is grapefruit juice you should not have with statins, the effect of pineapple juice is next to none. Apparently pineapple juice can effect the enamel on your teeth though.
in reply to Rimmy
Indeed Rimmy.... Life is not fair! but, it's thrush, not cancer... And yes, one more thing I can "tick off my list!" Apparently I am in a competition to acquire "the longest list of ailments," ever! Seeing the GP at 9:30.
“My pain may be the reason for somebody's laugh. But my laugh must never be the reason for somebody's pain.” ~ Charlie Chaplin
The shame..............
I have it from either Pred, or my brown inhaler... have been given two different oral medications, which didn't clear it up.... stubborn fu$%.... now, back on Nystatin, and fingers crossed... not that hopeful of a cure to be honest....
Oh that made me laugh, thanks. You are right Come onnnnnn!!!! Sounded like me at xmas. PMR, GCA, Chest infection, lost voice, Split/hacked fingers taped up like Michael Jackson (withouth the moonwalk), bruises on face looking like a battered wife....and ORAL THRUSH. That was sooooo sore to eat anything until I discovered what the hell it was. Hated the lotion you had to put on but it worked quite quickly.
What the heck is a Bakers Cyst???? Do you make a lot of bread??? (Sorry British humour ..again).
Hope you get back to just the mundane PMR & GCA soon, lol
in reply to Singr
I'm happy somebody's laughing! Your Christmas sounds like the "Christmas from Hell!" : ( Let's hope this year is BETTER!!!!!
Not a lot of "bread baking" going on here no! ... but you got a chuckle out of me, so good on you!
A "Bakers Cyst' is when excess joint fluid bulges to the back of the knee and forms a big lump or cyst. I had torn my meniscus, two years ago, while on a walking holiday in Italy... (obviously when I was younger, fitter and healthier!) and the good ol GP refused to do anything about it or to refer me... so left untreated it can cause other issues, i.e. a Bakers' Cyst! So I still have a torn meniscus and now a fluid filled lump! \: (
Singr in reply to
Oooh darn these GP’s who don’t listen to their patients. If I had the energy I could punch the GP who refused to take me seriously when I told him I thought I had an AI desease until I was crawling on the floor. Cheers!!
Can you get rid of your cyst?
in reply to Singr
Not sure... She drained it and gave me cortisone, but the meniscus is still torn. So unless I go private and have it fixed, I don't know if cyst just keeps filling up?
GP said if I were younger or an athlete, NHS might consider fixing... but 63 year old women... don't need to be able to walk comfortably apparently!
I'd rather have that assessment from a specialist. I've reached the stage of being EXCEEDINGLY sceptical about GP opinions. As has my paramedic daughter...
I'm 54 and terrified for my future health care from what I am hearing.
I should not have followed mothers advice and been clean living. I now wish I'd had a hedonistic existence and made sure the end would come sooner Lolololol!!!
Gimme that brandy over lol!!
What about trying a colloidal silver mouth spray - it can do miraculous things. Just keep applying it several times a day. And you could try rinsing your mouth out with a strong ascorbic acid (vitC) solution - Buy the crystals - in solution it can be very sour but make it as strong as you can cope with.
in reply to sennetta
Ooooooo, I just happen to have some ascorbic acid crystals! Cheers!
Try gargling with Glyoxide a few times daily (it is otc), and take a good probiotic 3 times a day until the thrush subsides. If you get no relief, call your doctor and get a prescription for Nystatin or similar medication. Good luck!
Yep, oral thrush totally sucks. I to battle with that horrible indignity. Have now tritrated down to 35 mg of Prednisone from the beginning dosage of 60 mg. starting in December.
What has worked best for me is I take two good swigs of Nancy’s Kefir once in the morning and once at night. I also take a probiotic capsule one a day. It really works for me. I love the Strawberry Nancy’s Kefir.
I had a hard time with the Nystatin for I had problems remembering to dose 5 times a day.
I am with you. Prednisone therapy is most defiantly brutal. I have also gotten some yeast growth on each side of my mouth due to my swollen cheeks. I use fungal cream to keep that mostly at bay. Also put chapstick layer over that to keep moisture away.
Hi mamici. Sorry about your predicament, not pleasant. Just my bit to add to all the other brill advice. From day one of taking pred I also took a probiotic (capsule). Fortunately I have had no thrush, the hospital asks me each time if I have any and seem amazed that after three years I don't. Also I am a big fan of coconut oil (cold pressed organic). You can swill your mouth with it and apply it to just about everywhere 😳 . It's anti fungal, anti bacterial etc and pure. You could give it a go and keep swilling for as long as you can bear for as long as you need. Look it up on line. I had gum inflamation a few days ago and it disappeared over night after swilling. All the best sunshine cc 🤗 Ps keep away from sugar etc as it feeds candida 🙄
I have never had thrush either. After nearly 9 years of pred. But I eat a very low carb diet and never use soap - preserving my natural skin flora. Which seems to keep the little beggars at bay...
That's interesting PMRpro. I am allergic to perfume etc on my skin so can't use your average soap but years ago I found an olive oil soap which is not only cheap but doesn't contain anything but olive oil, water and a bit of salt. Bit of a strange consistency when wet but as long as it sits on a soap dish that drains well, there's no problem. It's from Greece and anyone who wants to try it can get it in H & B (oliva). All the best cc
Dear Melissa
I am sorry that I cannot offer any sensible advice on your ailments.
Would you accept me swearing in a profane manner on your behalf??
Non of us signed up for this did we so are we the chosen ones or just part of a random selection. Whatever, it stinks.
My heart aches for you, stay strong Warrior Woman, you will overcome.
I shall now stomp up the garden swearing profanely as I go.
in reply to SheffieldSonia
Wow! Many thanks SheffieldSonia, I would indeed accept you swearing (loudly!) in a profane manner while stomping up and down the garden! Best offer I have had in a long time! Many thanks for your kind words and for the profanity! 🤐
Hi Mamici,
Sorry to hear of your troubles. I've had a life-time of immune-system related problems & strange events. Have read some posts that recommend live yoghurt but not sure if they say not only should you eat it but (at the risk of grossing you out!) apply it directly to the problem. Also, meds allowing, start to follow an anti-candida diet asap. (Booklets available or online describing this.) You will feel better all round. Hope soon!
*laughing* The "problem," is in my mouth so, no worries... I eat Natural Greek yogurt everyday.... Already on low sugar, low carb, no salt, no wheat, diet... just need to tighten it up a bit more I guess. Thanks!!!
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