Hoping you all had a good Christmas. Mine has been a bit rough as the whole family has been unwell including me with this cold/throat bug that is going around. It didn’t go to my chest this year, thankfully and I was recovering okay when I noticed my throat and ears started hurting again and my mouth was sore. I saw the GP as I was worried I could have oral thrush which the gp confirmed. On medication for it and already helping. Is this common when on steroids? GP thought so but I thought I’d ask all you knowledgeable people. I use a steroid based inhaler for asthma so knew there was a risk there but never had issues before.
Also have my first rheumatology appointment 5th January and am anxious as I keep reading they try to get you off steroids quickly. I’m stuck at 5mg as each time I reduce I flare. Part of me would love to come off steroids as I don’t like that I’m now in the pre diabetic category with higher BP than ever and now oral thrush but on the other hand I can walk, work and function fairly well generally speaking. Any tips for questions I should ask at the appointment? Thanks xx
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Abcd123455
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I had a couple of bouts of oral thrush early days on high doses of Pred…but then absolutely fine. Just because you are pre-diabetic doesn’t meant it will develop into diabetes… and your BP should reduce as you go lower in the Pred.
As for upcoming appointment- just impress you wish reduce very slowly..
.. and what exactly do you mean by you flare? Are you sure it’s a flare and not adrenals stuttering - that can cause muscular aches…
Last few times I reduced I was fine initially then started having low grade pain and it increased. Went back up for a few days then back to 5mg and was fine. I think I read that if it was adrenals you usually feel if fairly soon after a reduction?
Thanks, I find it all confusing so am grateful for the signposting. Will let them know I want to reduce slowly and see how it goes. Have a good new years x
First of all, I have been there!! It was frustrating and scary not to be able to taper when I thought I could but i now understand that my body has its own schedule for healing and I defer to the immense wisdom and hope from the forum.
I am at 2.5 for today after a few tapering problems where as per my doctor had to increse my pred dosis— my experience has been that minimizing the number of medications whenever possible— has made my tapering easier— i am now reducing by 1/2 mg for about 5 weeks and that has helped.
Wishing you many blessings of continued recovery on this new year!!
I cannot add medical knowledge but moral support and experience. I got tongue sores but they haven’t come back. Don’t let docs bully you into reducing steroids to a point that the bad pain comes back. As for anxiety. call your funniest friend and have some belly laughs. Best wishes for a more comfortable ‘24.
I've had problems with thrush as well.It clears up with Nystatin pretty good.Yes inhalers can cause it and the prednisone.I was told to rinse well aft my inhalers.
Thanks, I was probably a bit slack with my inhaler technique as I was feeling unwell. Will hopefully get rid of the thrush soon and make sure I don’t cut corners going forward to try to avoid having it again. Know it still might happen but at least I’ll have tried.
Of course they want us off steroids as soon as possible, but still just be firm and it turns out my rheumatologist is now fine with however I feel works for me. I am also pre-diabetic but as Dorsett Lady said, doesn't mean it goes into full fledged diabetes. Just cut down on sugar if you take alot of it
And again, a Dorsett Lady said, I have found, thnks to her advice and also that my doctor agrees with, adrenals stuttering can well be what you are experiencing. I am finding now that each time I reduce the pred dosage a little, I have a couple of days where I am exhausted but then after that I am okay. Sometimes a little pain, but nothing like at first.
I had my first rheumatologist appointment a couple of months ago more than two years after being diagnosed with PMR by GP. Like you I was worried he would insist on getting me off Pred as the GP had been very aggressively reducing my dose and I was down to two mg but feeling terrible. However, he was brilliant! He confirmed the diagnosis of PMR but said it had been poorly managed, put me back up to six mg and I have felt great ever since. He wants me to get to 5mg next but says no rush to get below as virtually no long term risks at that level. What I found most challenging was clearly describing my symptoms to him, he was very inquisitive, extremely thorough, and was trying to get precise answers from me. I had to give a blood and urine sample at the appointment. I got a really good letter from him afterwards explaining more about my condition and how he planned to treat it going forward. One surprising thing was that he said the blood test showed I had recently been exposed to e-Coli so he prescribed an anti biotic!
Good luck, I hope you get such a helpful rheumatologist, I had some questions but he answered everything I needed without me getting as far as asking really.
It’s good to hear a positive and I think I should stop feeling negative. I hope to see a knowledgeable and supportive doctor next week. Pleased they picked up your exposure to E. coli!
Hi, yes I’ve cut right down on sweet foods and switched to wholewheat pasta and rice. Being careful with measurements and haven’t had sugar in hot drinks for years. Hopefully that will help, due a retest in April so we’ll see. I think I’m just feeling a bit defeated but as you and Dorset Lady have said it doesn’t mean I will have diabetes. I’ll see what happens at the appointment, guess I am scared of not being able to function as I still work full time and my job is stressful. Anyhow I’ll try to be positive and see what the doctor says. Thanks
Yes, I’ve had some bouts of oral thrush in past couple of years…when I was on 5mg, & when on higher doses. I was prediabetic, but went onto Keto diet for 2 months, & reduced it to normal. It hasn’t returned since. Make notes before you go to appointment & take in with you. I think you know, really, what to ask, as you communicated well in this post!! S x
Thanks yes I normally do but was so tired and unwell with this cold that I was being a bit lazy, completely self inflicted I think. Definitely won’t cut corners going forward.
hi there Abcd123455! You will get all the help you need from this magnificent forum. You will get there in the end, but slowly , slowly, very slowly is the only way. One quarter of a mg reduction was the only way I have progressed this last year and on Christmas Day I decided that this is it, no more. Will take it very very slowly each day, writing in my PMR diary on a daily basis. I am not celebrating. The dragon sits in my kitchen and glares at me. One day at a time. Pills at the ready. But bless you Dorset Lady, PMRPro, SnazzyD and many more . I could never have arrived here without you.
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