Good afternoon
I’ve just slowly reduced to 3.5mg pred and have been feeling fairly ok. The last couple of days I’ve been feeling out of sorts and a bit shaky. Im presuming it’s my adrenals ?
I take 2.5 coated and 1mg uncoated at about 10am after I’ve had breakfast. Would it be ok if I took the 2.5 when I wake up? I’m thinking if it’s coated it won’t upset my stomach ?
10am is pretty late to take e/c pred - it takes another 4 hours at least to do anything! We even suggest taking it before bed - because it doesn't get into the system till well after midnight but will be there before the morning cytokines get going at 4.30-ish.
I have done that Sue, over the years and my endocrinologist advises taking Pred early.
However, as you have probably gathered, years on, I have developed lower abdominal pain that starts on the lower right hand side, quite significantly, like an internal boil. It then spreads across the lower abdomen. This is probably diverticulitis ( diverticula disease has been diagnosed ( colonoscopy via capsule)and IBS suggested) with IBS symptoms. These issues give you time to ponder. Is it possible that I have no upper GI tract symptoms because the protective coating on my tablets was in place until the tablets reached the lower abdomen?
I maybe just unlucky, this maybe a coincidence, it might have happened anyway.
Would I have faired better with uncoated Pred and a PPI?
Sorry, this is probably unhelpful with your present predicament and my experience is not typical. Since 1 mg Entric coated tablets have been impossible to get, I have taken 1 mg uncoated. They honestly seem more powerful than the Entric coated. 7 years on, I feel as if there has been a price to pay.
You’ve been going through a lot Jane. Think you’ve had more than your fair share. I thought I was getting away with the adrenal problems but I felt so shaky this morning.
I hope you are just passing through on the way to the end of the rainbow! Xxx
oh I do hope so Jane. 🤞🤞
That's fairly much how I felt when I went to 3.5mg, with morning sickness. My GP told me to go back to 4mg for a bit, though of course this prolongs the whole thing. After that I only reduced to 3.75mg and got away with it. I never tried 1/2mg drops again.
As to your question, I suppose it depends on how badly your stomach is affected by pred. If it's not too bad, could you try taking the coated tablet when you wake up with the usual yogurt or banana?
In line with what Pro says I think you’re taking EC too late Sue. I now, for the first time, take mine before I go to bed and my PMR symptoms are very much better controlled. If it’s your adrenals (and it sounds like it) I feel you will have to go through that pain barrier. By the time I reached 3 mg it had for me. How long do your symptoms last? Mine were everyday in the evening for about an hour. I use to suddenly feel so unwell - I felt paralysed with the most awful pains in my body particularly legs. I couldn’t stand up on my own. This lasted for 8 months.
Roll on the years and I’m second time around now and nearly at 6.5mg. I think I might have gone through some adrenals stuff at 8/7.5mg as I recognised the symptoms but they were 24/7 this time and for about 8 months!! It was really debilitating. My Rheumie thinks it was possible as second time around it can be quite different she says she’s finding out. Hope I have - will only know as I get lower.
We are all different so let’s hope you get through it easier.
Hi thanks for your help. Yes now I’m taking such a low dose I will have to change the time I take it. Took 2.5 at 6am this morning and felt ok. I’ve decided to stay at 2mg if im lucky enough to get to such a low dose. My rheumatologist is quite happy for me to do this.
We are all different and it’s right to do what suits you. Bit of trial and error though. I stayed on 3mg for 18 months and felt ‘normal’ until I had a flare and I’ve struggled ever since trying to reduce. I’m threatened with Mtx but don’t want to take it. I can’t have it yet anyway because of bladder treatment so hope I can get pred lower in the meantime. Good luck.
From my experience, below 3mg you have to reduce even more slowly and follow the 10% rule. I know this can be very hard to achieve and dropping 0.5mg is easier to do but from a percentage point of view it can amount to a 20% or 25% reduction depending on the dose you are on. I can't tolerate much more than 10 to 13% even using DL's Dead Slow method so I have to make the process last around 10 to 12 weeks and then stay for a month before carrying on to reduce further. Do you need EC pred? As has been said already it takes longer to get into your system and making 0.25mg reductions is impossible with EC tablets.
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