bad flare | Arthritis Information

Hello again! After my first month on 10mgs of predisone I felt really good- about 90%. last week I tapered to 9 mgs and noticed a little more symptoms, but as expected. This morning I overslept and took the pred. 3hrs later than normal, now I am in real pain! Has anyone else had this kind of experience? Is it the late meds or just a flare that happens sometime? I didn't do anything strenuous in the past few days, so I'm kind of worried. RichHi Rich

Before being suppressed by the steroids, our adrenal glands were used to making their natural steroid (cortisol) in the very early hours - 2-3am - and this is why we are recommended to take the artificial steroids early in the day with breakfast.

I wouldn't have thought that taking your dose a few hours later yesterday would normally have made that much difference as the anti-inflammatory effect from the previous day's dose should still have been present in your body.

However, having said this, you have just embarked on reducing from 10 to 9mgs with a "little more symptoms" so this could just have 'upset the apple cart'!

Hopefully, if you have taken your tablets earlier today you will gradually start to feel better as the day goes on. However, if as you say, it is a week since you reduced and the pain continues to worsen over the next couple of days, then perhaps it is a sign of a flare rather than being due to steroid withdrawal and it may be a good idea to go back up to 10mgs to see if the pain settles.

If you started treatment on only 10mgs, that is considered quite a low starting dose (the norm in the UK is usually 15mgs). I started at 40mgs (PMR and GCA) and my rheumy once commented that when I got to 15mgs that is the dose which normally controls the inflammation. So although you were feeling "really good" on the low starting dose of 10mgs, a month might just not have been long enough to truly get the inflammation under control. If you do feel the need to go back to 10 then if it were me I would try a drop to 9.5 the next time.

Very best wishes, and do let us know how you get on.

Hi Rich!

No need to worry yet! Being 3 hours late is quite enough for you to start feeling very stiff and uncomfortable if you are one of the people where the anti-inflammatory effect only lasts well under 24 hours - it lasts between 12 and 36 hours, depending on the person and the dose. Some people also have a problem with early morning stiffness at any dose and their docs sometimes suggest splitting it so they take a small amount at night to avoid the stiffness the next morning - although mostly it's better to take the steroid as one single dose as early in the day as possible to reduce the chance of side-effects.

Give it another few days at the new dose and see how it goes - if it is your body complaining at having less steroid available it will improve over a period of up to 2 weeks and go away again. Taking the dose so late as well as reducing the dose could well have caused a bit of steroid withdrawal pain - and it's similar to much of the PMR pain just to confuse things! If the dose is too low the pain will get worse over the same period rather than starting to get better. 10mg/day is a point at which a lot of people find it is hard work dropping the dose - I have dealt with it by making each drop as small as possible. Taking the dose daily makes that 1/2mg at a time but since I take my pred as a double dose every second day, I drop 1/2mg at a time so that is equivalent to 1/4mg per day. So far that has worked well whereas 1mg at a time didn't. If you alternate the old and new dose for a week that also smooths the path downhill a bit too.

Good luck,

Eileen

Thanks so much for your help! I have other chronic conditions-kidney desease, ddiabetes, gluacoma, thyroiditis to name a small few. Sometimes things just get a little overwhelming, so I'm glad for your support! Thanks again, RichRich - I was wondering what your kidney problem is and whether it is classed as CKD (Chronic Kidney Disease) where the kidneys are not filtering out at the normal rate?

I had a kidney removed when I was 12 and now - just a few years later( Hi Rich,

Sorry to read of you having trouble reducing at the 10 to 9 stage. It's exactly where I am now and I've been trying to cope. Mrs. E wrote that there are a number of sufferers that have trouble reducing from 10 mg — and I think she's right. It just takes times and is a slow process.

I had a flare about 6 weeks ago and had to go back up to 12.5 mg of Pred. It took a couple of weeks before I started feeling better again, so the Dr (Rheumy) said to try to reduce again. I got back down to 10 mg and was feeling pretty good, so after 2 weeks on 10 I tried going to 10/9/10/9/10... etc. every other day. Then I started having more muscle pain in my hamstrings. It gets worse when I sit in one place for a long time like driving, sitting in church, or too much time on the computer. I was in to see my Dr. a few days ago and he confirmed that my SED rate was up a bit. Right at 20 which he says is the upper limit of normal for me. So he told me to hang in there and not to reduce until I started feeling some better. As I'm having to travel later this week, I'll probably go back up to 10 mg until I get back from the trip. Besides the travel, it's with my mother-in-law.... even more stress!! RickF2011-05-16 16:58:06Yes, I have CKD3 also. I've had diabetes for 35 years now plus some high blood pressure. Both are well controlled but they did thier damage! My kidneys are stable now for the last 3 years. I had a CT scan with contrast about 7 years ago which did damage to my kidneys although I didn't know it at the time. If you have kidney damage or diabetes you should avoid dye contast like the plague!! Some have experienced total kidney failure after recieving dye contrast when getting a cat scan or MRI. RichRich - snap on both fronts - CKD3 AND diagnosed following CT scan with contrast!

So angry with the consultant who knowing I had one kidney put me through a CT scan with contrast 4 years ago when investigating the symptoms that eventually turned out to be PMR. I wasn't aware of the risks at that time but he should have been! I've just had to go through another MRI and CT scan and you wouldn't believe how many people I told during the referral process that I couldn't have the dye and even then when I arrived for the actual scans I was handed a form each time to sign giving my consent to the dye!!!

The relevant blood test for CKD shows my eGFR (estimated Glomerular Filtration Rate) has varied between 54 and 44. Normal is 60 and above. I do suffer from higher blood pressure than they would like to see but have had adverse reactions to Ramipril and Candesartan, so in the meantime am trying to increase my brisk walking, am losing some weight and try to eat a diet not too high in protein so as not to overstress the kidney and don't add salt to anything.

Best of luck, Rich, on all fronts!

Hi Rich,

I am not one of the experts, but I will say that I missed a dose one evening (I am one who takes a split dose, one with breakfast and the other half with dinner) and my body was not at all happy! I could not believe how miserable I began to feel. That is what prompted me to realize that I had missed a dose and took it at 10 p.m. The other annoying thing is that once you throw your body off kilter, it takes a while to get back on track. I was fairly miserable the next day too, but then things leveled out. I could swear it was from almost missing that dose, though I know lots of other things contribute to our discomfort. Thanks for that info! I upped the pred to 10mgs yesterday and today and am feeling better!

Also for the post about the dye contrast- patients need to be very proactive about thier health. It's our bodies and we need to be in control as much as possible. I have diabetes and one doc told me he was the only one to change my insulin dosage. Had I listened to him I might not be here now! Also with kidney desease you need to limit the amount of phosporus intake! Feel free to contact me for advice regarding the kidney desease! RichRich

As MrsUK often says "Knowledge is power". We do really have to be as alert as we can because in most cases the medical profession do not see us as individuals.

With regard to the kidney disease, my friend's Dr told her that the Government had "opened a can of worms" with the introduction of the eGFR blood test with hoards of elderly people rushing off to kidney consultants. My own GP has now said that whereas they were concerned and rather panicked about informing people that they had CKD a few years ago when the test was introduced, they have since discovered 1300 patients in their practice alone who have a varying CKD. When I spoke to the Kidney Help Line they, too, said it was strange that so many people were being diagnosed with CKD and nearly all at level 3! I will look up phosphorus foods, Rich, thanks for that.

Meanwhile, so glad you are feeling better after 2 days on 10 - keep it up!