Dribbling/steroids/mycophenolate - Fibromyalgia Acti...

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Dribbling/steroids/mycophenolate

Mandypandy1969
Mandypandy1969

Does anyone have really bad dribbling from there mouth in the night, it's awful. Also has anyone been put on a course of steroids as a trial for sjogrens before being considered going on mycophenolate. My stiffness in the mornings has gone since being on steroids but still all the other symptoms are there. As soon as I do a little task, my back feels very sore and my limbs feel shaky like jelly and my hands. I don't like the sound of the mycophenolate and neither does my mum. I have also been increased on gabapentin to 500mg 3 X a day from 400mg a day. Confusing which is helping with stiffness in mornings but I assume it's the steroids as before I went on them I was stiff for about an hour in the mornings before I could get moving. Sorry for going on. So many things I want to ask.

22 Replies
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Dribbling yes,trial no.

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Mind you,I'm asthmatic when I over do my blue inhaler I get trembles

Hi

When I was on a higher course of Steroids I did get dribbling at night this was due to the Steroids it went at lower doses.

Steroids will help with any inflammation in your body as well so perhaps that's why you feel less stiff in the morning .

However I don't think with Fibro thier is any inflammation so maybe something else going on

the sjogrens lip biopsy came back inconclusive which is why he tried me in the steroids. got 3 more weeks on them. started on 20mg for 2 weeks tapering by 5mg every 2 weeks and so on then just stop. have had to keep a strict diary while on steroids. xx

I used to be prescribed short high doses of Steroids. I would get blurred vision when taken Steroids .Doctor sent me to an Optometrists who wrote back to my GP stating Steroids were raising my sugar levels and as I am Pre Diabetes type I should avoid Steroids as this is causing my blurred vision

Rose54
Rose54
in reply to mattjoachim

Hi

Yes Steroids can cause Diabetes as thay change the way your body process sugars

I have been on them for nearly 3 years .I avoid sugary foods ,Carbs as much as possible and fruit due to natural sugars in them .

I test blood sugars weekly as both my Mum and Brother are diabetic.

mattjoachim
mattjoachim
in reply to Rose54

I suffer with Gout attacks also and I used to take Anti Inflammatory drugs. T hen after having kidney biopsy was taken off Anti Inflammatory drugs and put on Steroids instead. Now told cant take Steroids either. I am on Tramadol but when I get Gout flare ups Tramadol does nothing much for Gout pain.I have kidney disease also and Doctor told me they have to be careful with what Medicine they prescribe me to use

I have floater/like frog spawn in left eye which started last week. sensitivity to lights is getting worse too. xx

I have been put on the steroids before being diagnosed as my doctor thought I had Polymialygia. As for the dibblering yes I have that.

Hi, I was put on a short course of steroids at first, I have undifferentiated connective tissue disorder, sjogrens and fibro. It certainly did for me like you say, moved better than I had for years! But it's not good long term, and I'm also diabetic. Now I take plaquenil and imuran as well as pregabalin. It's not great but better than I was without meds. I dropped the pregabalin for a while but found it really was helping me so going back on it. It's different for everyone. You just have to figure out what works. I hope you find something that helps.

Thankyou. xx

Hi Yes I have the dribbling from the mouth at night I thought I had read somewhere sometimes ago that it was part of Fibro Love & Hugs Xx

I too have sjorgrens with fibro and other things, mu gp told me the meds for this are harsh and to try to cope myself, I recently went to a maxillofacial consultant to look at my tongue splitting, cracking and becoming very sore and raw, he said its another sjorgrens issue that is hard to treat he has given me Difflam Mouthwash to use when i need its on prescription and it is very good for numbing inside your mouth,maybe you could ask gp to let you try some, esp. to use at night, I must admit I have my moth open a night to stop me grinding, I did have a moth shield but it wore and the cost of a new one is95 quid!!

My mouth guard has holes in it but like you, can't afford another one. I thought maybe to get one from Amazon. Rheumatologist said lip biopsy for sjogrens was inconclusive and I am on steroids for 2 months to see if they help me at all. He gave me a leaflet about mycophenolate he is thinking of putting me on if the steroids have helped. I have another month on them tapering from 20mg tapering 5mg a fortnight down to nothing then just stop. Seeing Rheumy nurse end of October. Mum doesn't like the sound of mycophenolate due to the side effects. She comes with me to my appointments as I am so forgetful. I know you need to mention as much as you can to get diagnoses for different things as I know so many things run alongside fibro. My imflammatory rate is 73 which my gp said is nothing to do with fibro, whether it's to do with sjogrens, I don't know. Steroids have helped a bit as I have done a couple of things I have felt like doing even though I suffer afterwards, can't do anything for long due to the sunburn feeling and shakiness in my limbs and hands when I have done something. Get tired so quickly but stiffness in the mornings has gone since being on steroids. Sorry for ranting, I am always ranting lol. Xxxxx

How weird ! Yes I have noticed I have become very dribbly at night

It's worrying as I have dry mouth and throat all day, no matter how much I drink. xx

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in reply to Mandypandy1969

I have a dry mouth in the day, and dry eyes, then dribbling in the early mornings - not fair!

Mandypandy1969
Mandypandy1969
in reply to Hidden

I know. is it all to do with fibro? Would you say my heavy eyes are a symptom of dry eyes? x

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in reply to Mandypandy1969

I didn't even connect my dribbling to fibro until I saw your post. But yes it seems so. My heavy eyes might be CFS as I have that too, but more likely fibro.

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I dribble! I never used to but the last three years, oh yes. And if I eat a square of chocolate at night some of it stays in my mouth then I dribble chocolate coloured saliva later. Two nights on and my pillowcase looks disgusting.

The dribbling is awful! I've had to resort to putting a sheet over my pillow, and changing it often! But yes, it is a Fibro thing, along with the dry mouth, being thirsty all the time etc. Oh, and dry eyes can either be a symptom of Fibro, or a side effect of the med's....it's pretty difficult to work out which though. xxx

I will have to put something in my pillow. mum suggested a small old hand towel lol. xx

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