Actemra and thrush.: I had developed thrush from... - PMRGCAuk

PMRGCAuk

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Actemra and thrush.

Leeleep profile image
35 Replies

I had developed thrush from prednisone and went on nystatin after I became aware of what I had. The Actemra was added two months ago and the thrush is worse. Anyone dealing with this? I’m putting a call in today to my doc and thinking I need to stop the Actemra. I also have CVID and have not gone for my gammagobulin iv that keeps my numbers up. I feel the CVID diagnosis should disqualify me from taking Actemra. So confusing and upsetting. Dorset lady, hope you see this.

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Leeleep profile image
Leeleep
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35 Replies
SheffieldJane profile image
SheffieldJane

DorsetLady, is on holiday visiting family in New Zealand, she may not be on the forum much for a while. It is worth doing a specific internet/ google search for Actemra and Thrush, it seems that there is a specific support group that pops up just for that. I hope this is of some help to you.

Leeleep profile image
Leeleep in reply toSheffieldJane

Thsnks

Klah profile image
Klah in reply toLeeleep

I am also on Actemra and have not the found the website about reactions very helpful. I think it is impossible to list all the side effects for any drug; when they do list them it is ridiculously long and tedious! I have to look thrush up...not sure what that is. Could it be a temporary reaction, to be weighed against any benefits?

PMRpro profile image
PMRproAmbassador in reply toKlah

Thrush is the common name for candida albicans, a fungal (yeast) infection. It can affect various parts of the body - mouth, gut and intimate areas.

Klah profile image
Klah in reply toKlah

Yikes!! Don’t want any part of that!! Does the probiotic yogurt help?...that’s what I take with my pred every morning.

Leeleep profile image
Leeleep in reply toKlah

Not at all and I use a good brand.

in reply toKlah

Helps in intimate areas.

PMRpro profile image
PMRproAmbassador in reply to

Used topically!

in reply toPMRpro

Yes. 😂

Nap1 profile image
Nap1

I have thrush from Actemra and can’t get rid of it. Just finished 7 days of Nystatin and it’s still there. So far it’s only on my mouth. It can also be from steroids. I have to stop the Nystatin because it interacts with Prolia which I am due for a shot this week. I am not stopping the Actemra. So far it has done wonders for my ESR and CRP. I’m at 8mg of prednisone today. First time in 3 years. Never got below 12 before. Don’t know what to say. You should talk to your doctor. Good luck.

Leeleep profile image
Leeleep in reply toNap1

Doesn’t your food all taste like butter slimy garbage? I will call doc Monday. I’m on Forteo for my bones and don’t no if the nystatin interferes.

Jim-CJ profile image
Jim-CJ in reply toLeeleep

Hi Leeleep,

My wife was on Forteo until two days ago. We had to stop, because she had severe nausea. Have you had nausea with Forteo? If so, how did you get around the problem?

Thanks, Jim & CJ

Leeleep profile image
Leeleep in reply toJim-CJ

No nausea with Forteo.

Poppy_the_cat profile image
Poppy_the_cat

Hi, Dr can prescribe anti fungal to treat Candida. You may need to be on it a couple of months. I was given Flucanazole. Worked a treat, even clearing up 25yrs of toe nail fungus (related) that I had suffered from for over 25 yes! BUT, also go for Kefir probiotic drink, you can brew yourself at home. It will fix you, it works wonders.

Any questions, just ask.

Poppy

:0)

Leeleep profile image
Leeleep in reply toPoppy_the_cat

Doc would only give me 1 pill of Flucanzine. How many did you take?

in reply toLeeleep

A friend of mine took 1 a week for 6 months. I have occasionally taken more than the two a year it mentions on leaflet. Since my blood sugar better controlled less thrush. However my body smell changed dramatically when thrush takes over.

Poppy_the_cat profile image
Poppy_the_cat in reply toLeeleep

I have an excellent rapport with my GP. I did my research and announced to him that I wanted to take a serious 8 week course of Flucanozole. I guess u have to convince him.

Good luck

Poppy.

Ps the Kefir I am brewing is amazing. It has cleared up my partner's toe nail fungus that he has had for 15 years.

You should try it.

Leeleep profile image
Leeleep in reply toPoppy_the_cat

I make kefir but it annoys my ic if I have too much.

Poppy_the_cat profile image
Poppy_the_cat in reply toLeeleep

Oh dear, not good then.. research the internet for a prolonged anti fungal course ....or depending on how your rapport is with your Dr, say a "friend went on an 8 week course of Flucanazole for Candida albicans and as a result their toe nail fungus of 25 years has totally cleared up"...they sometimes take more kindly to anecdotal statements rather than quotes from the internet...as sometimes they take offence.

Good luck

Poppy 😃

Leeleep profile image
Leeleep in reply toPoppy_the_cat

On the 8 week course did you take 1 a day?

Poppy_the_cat profile image
Poppy_the_cat in reply toLeeleep

I believe I did, though can't remember as it was over two years ago. I am seeing my lovely Dr on Friday, I will ask his advice as to how you should propose it to your GP.

;0))

Leeleep profile image
Leeleep in reply toPoppy_the_cat

Thank you.

Poppy_the_cat profile image
Poppy_the_cat in reply toLeeleep

Cannot remember! I will ask my GP on Friday and get back to you so we can be sure.You are asking "the bear of little brain" at the moment!

Poppy 😺

Poppy_the_cat profile image
Poppy_the_cat in reply toLeeleep

Good Morning, have just been to see GP and the best way to play it is to go for a one month course of Flucanozole, the lower dose...then review with another month if needed.

Hope that helps.

Best Wishes for Christmas and a Good New Year,

Poppy

Leeleep profile image
Leeleep in reply toPoppy_the_cat

All I got was 6 pills from another doc. I believe because I’m on Actemra they are concerned to give me more Diflucan. Last night my food was more palatable and so I’m going to do two Diflucan a week and pray that the 6 pills will help me. Thanks for input.

Poppy_the_cat profile image
Poppy_the_cat in reply toLeeleep

Well, I can remember that there was the option for taking the one pill per week format....or the smaller dose on a daily basis. I found that the gentler more gradual approach of one tablet per day for a month as an initial start, suited me better. I guess big food tastes a bit better maybe it is already starting to have a positive effect. Good luck.

Leeleep profile image
Leeleep in reply toPoppy_the_cat

Hopefully this will work.👍

There are dietary changes that are supposed to help. Obvs sugar but things like mushrooms. Lots of weird and wonderful Candida websites.

I have diabetes and with the pred find thrush a big part of my life. Gone onto insulin which has helped a bit. But I have to use cream under breasts and other areas. Like poppy I have taken oral tablet version which works and then I find probiotics help more. It's horrid in mouth so don't envy you.

PMRpro profile image
PMRproAmbassador in reply to

Yeast products (bread etc), mushrooms, cheese ...

If you really want to go the whole hog:

thecandidadiet.com/foodstoa...

Perhaps doing prebiotic foods might help.

prebiotin.com/foods-contain...

Iwillwin123 profile image
Iwillwin123

Please check that it is not tongue claudication . I had it and was misdiagnosed as thrush .

PMRpro profile image
PMRproAmbassador in reply toIwillwin123

This is a 3 year old thread!!!!

Iwillwin123 profile image
Iwillwin123 in reply toPMRpro

Ohhhh I wonder how this happened . I was looking at another string and I guess this string sort of confused me .! Well anyway may be helpful for someone who reads it sometime in the future :) Thankyou for bringing it to my notice ....... regards

PMRpro profile image
PMRproAmbassador in reply toIwillwin123

It seems to happen occasionally - HU deny all knowledg of a gremlin! Who knows ...

Iwillwin123 profile image
Iwillwin123 in reply toPMRpro

:)

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