The pain has been incredibly intense. Add in the painful foot neuropathy from my diabetes and now on 20mg prednisone with morning glucoses running close to 400 and I am not in a good place.
At night the prednisone tends to wear off. So last night all the pain came back as if I had no prednisone. It effects both shoulder, inner hips, left wrist, right knee and my neck I notice gets very stiff and makes crack bubbly noises.
I do notice the morning prednisone completely removes all the pain in even an hour.
I tried a split dose, take 5 mg before bed but that does nothing.
How about a 10 mg in the am, and a 10 at dinner?
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sdowney717
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You can only try and see what happens - but it may take a few days to clear out the accumulated inflammation before you get a good 24 hours relief. Do you test a lot during the day? Some people have found that by altering eating patterns they can control their BS better. And of course cutting carbs drastically can help if you don't already do so. One guy found exercising after every meal helped too.
My PCP told me that prednisone at night will cause insomnia and a racing mind. But I could try split dose anyway. I did notice taking more prednisone in the morning caused much higher spikes, like 20 caused glucose of 365, and 10 spiked it only to 269 which is a lot better than upper 300's. He prescribed for me 30 mg prednisone in the am but I won't take that, I already have had to double my insulin injections using 20 mg prednisone. The syringe only goes to 30 units!
Does the 20mg work well? Are you at least 70% improved? It depends on the person - there have been quite a few people who take pred at night for the benefits of sleeping through strange effects of higher dose pred or for the morning being really good. The ideal time to take pred for relief of morning symptoms is 2am and some people do actually do that. Others take it before bed.
It is unusual for ibuprofen to have much effect on PMR - is your doctor sure this really is PMR? Is it your PCP or a rheumatologist who diagnosed it?
In my experience, 2 am is a good time if you can manage waking at that time. Although many sources say ibuprofen doesn't help, I found it did.
Encouragement to all PMR sufferers: I had PMR for approximately 3 years at age 82-85 years, but now at age 88 I am much better with just some stiffness on arising.
When you say at night the pains return…what time do you mean? Evening or during the night.
We do sometimes suggest you split dose - usually 2/3rd am, 1/3 pm - but as you’ve only been on it a short time I think you need to give it more time to work. It can take up to 4-5 weeks to get all the built up inflammation fully controlled for some patients.
As for insomnia, if you are going to get it, you will get it whatever time you take your Pred.
before I took more prednisone. So I split a 10mg into half, took that and nothing happened to the pain level. I then took 4 ibuprofen around 2am, and then the pain diminished by 3am, still had pain though, pain level the same as before my PMR diagnosis when I was taking 3 grams of ibuprofen spread out during the day and night.
Taking just ibuprofen since early December did help the pain. It also removed the swelling of my left wrist and allowed me walk and function. But I was slow, favoring every move as to not cause a joint to light up with pain.
Ok. As you’ve only been on Pred for 4 days I really think you need to give it longer to work. And obviously you don’t want to take extra due to diabetes.
So stick with 20mg for now, taking it as one dose in the morning -but do keep a diary so when you see doctor again you can discuss how you are getting on.
After a week or two, maybe try the split dose as suggested by DorsetLady? But in the beginning it’s usually better to concentrate on clearing the built up inflammation. I haven’t done this myself, but some people find it good to take their pred at 2am…..think I’d hate it, but it may be worth a try for you😊It’s really a question of finding what’s right for you.
If it weren’t for the blood sugar issue, I’d suggest you took the 30mg, but I guess that would be counterproductive…
The pred will eventually deal with the inflammation, I really hope for your sake that it’s sooner rather than later x
My issue though with taking prednisone late at night is exactly that, the extreme spikes up in blood sugar. I already was a hard to control sugar levels, taking 25 units 3 times a day is the only way to bring it down to the mid 100's. I can feel a high and a low glucose. A high glucose affects my brain, like woozy and I feel thick and heavy and ill, an off feeling. So taking 40 units is a big jump up in insulin use from 25. And then if I alert and aware, I can react if my glucose goes to one extreme or the other. But If asleep who knows what might happen. I will say the prednisone from day 1 in a few hours wiped my pain down to almost zero, but it takes about 2-3 hours to do that. It does seem to wear off during the night. So I don't know how a 10 - 10 split will work for me. Taking 20 in the am works all the way till when I go to sleep at night so far. But I also have only been on prednisone since last saturday, 4 days. I was real good at keeping my glucose under control before prednisone for the last 8 years, I had gotten a very stable routine. Now I feel like none of that matters anymore. What is worse higher sugars or less pain. But I also know, high sugars could make my neuropathy spread beyond my feet or even eventually kill me.
This sounds really difficult and I’m afraid your issues are beyond my experience. But there will be people on here who can offer sensible ideas/advice, I know. In the meantime I can only say it’s very early days, and things will improve. Sending every good wish….I’ll follow your updates with interest, I might learn something! Hugs xx
Like you, I'm also insulin dependent, but have been taking Prednisolone these past 2.5 years for GCA. Having been well controlled previously, my BS's went haywire after the addition of Pred. I'd always had to rely heavily on carbs to keep my weight up. However with Pred came stomach problems & the changing metabolization of carbs that they cause, so I reduced the carbs radically which helped the BS's enormously. On tapering my Pred dose, the stomach problems subsided & I introduced chocolate again & biscuits. This triggered high blood sugars again, but I reached a decent compromise that didn't deprive me that much. Over the last 4 months I've introduced a biologic into the mix & BS's are swinging again, going crazily high between 3am and 8am. This is a constant balancing act of adjusting one thing against another & it's a trial & error exercise unfortunately. This is a fairly new scenario for you and I can understand your frustration when previously you seemed to be doing well with your diabetic control. Diabetes wise, the best you can hope for with this disease & the treatment of it is getting to acceptable BS's for only short periods of time and being prepared for changes at any point. I trust you have a decent diabetes nurse you can discuss these matters with. Mine unfortunately is pretty clueless when it comes to Pred, as is my diabetes consultant, which is disappointing, but I'm hoping you are more lucky than me.
These are such early days for you. Seems like controlling your BS has been a real challenge the last 4 days. Perhaps this warrants a discussion with your GP. I remember in the early days taking 20mg around 9am each morning, and although I did get relief from the stiffness, it usually wasn't until noon and then it would wear off by midnight (like you).
AFTER I got the built up inflammation (from 5.5 months since first PMR symptoms) I discussed the possibility of trying to split my dose or ideally take it at 2am each morning. In the end I tried both but getting up at 2am meant sometimes I missed my dose from sleeping through (or dropping a pill lol), woke up hubby, had to eat something with the uncoated pred, and found it very disruptive. Then I discovered enteric empty capsules I could order online that allowed my pred dose to be onboarded about 3-4 hours after taking it which allowed me to no longer have to get up at 2am. I then tried splitting my dose 2/3 in am (10am) and 1/3 in pm (at 10pm) and it worked perfectly.....I was no longer stiff in the mornings when I woke up, and my dose lasted long enough that when I went to bed I did not have any pain/stiffness.
To each their own, sometimes its like solving a difficult puzzle, but hopefully you will figure it out. Others have made some great suggestions as well. Keep us updated.
It's a conundrum isn't it, you need to take a medication to control one thing and that then knocks something else out of sync. As already suggested I think you need to continue with your 20mg in the morning to try and get the inflammation under control, keep full diary notes so that your doctor can fully understand the problems that you are having when you have your next appointment. I take my Pred around 02:00 ish with some yogurt and that has worked well for me, although I didn't start that regime until a couple of months after starting Pred. Good luck, hugs and I hope things start to sort out.
Hi. Like you my CRP was very high (106 in my case) and I was in purgatory. I started on 15 mg, no effect, 20 mg gave about 16 hours relief. Doc was reluctant to prescribe a higher dose. She spoke to a Rheumy who told her to go to 25 or even 30 if required. 25 mg and bingo. Full 24 hrs relief apart from minor shoulder twinges. Doc then insisted I go to 30 mg which didn't make any further improvement. Perhaps you need to ask if you can increase your dose??
How about taking 25mg instead of 30. Maybe 20morning & 5 evening worth a try? Your doctor should be helping with the blood sugar control. Close monitoring Insulin pump even? You won’t be on this high dose long term but need to clear out the build up of inflammation. Also I think you need specialist referral - Rheumatology, surely you are prime candidate for adjuvant therapy so that steroid dose can be reduced faster. Certainly something to discuss. Best wishes
20 mg. worked for me at the onset...same symptoms. Not sure I would split the dose yet. Your CRP is/was quite high. Yes, sleep may escape you for awhile, but it will level off as will the pain. Not always an overnight success, but in my case I was able to move my arm over to the nightstand the first night and then after a few days, relief. Had been going through the pain 5-6 months prior to PMR diagnosis, being diagnosed with old age. I was on 20 mg from Jan '22 to May '22 and still on it. Very sorry to hear you're going through this. Stick with this forum, most of the useful and valuable information comes from here.
This morning after taking 20 mg prednisone the prior morning and 200 mg Ibuprofen at bedtime, I was tolerable, not extreme pain, just stiff and some minor shoulder and hip pain. I took the ibuprofen as around 8pm, I was feeling some minor shoulder pain. So today did the same 20mg at breakfast. It has fully kicked in right now around 10:30 am and I have no pain and almost no stiffness, but my left wrist is a tiny bit sore. But I did feel my glucose climb up, I will check at noon. My am glucose check before prednisone dose was a decent 103.
Yesterday tried a split does of 10 prednisone in the AM, and 10 at lunch. My glucose in the am before prednisone read 103. Shot in 35 units insulin. At lunch glucose read 334. All I ate was a bowl of non sweetened cereal, depressing. Took 40 units insulin and 10 mg prednisone. At dinner glucose was 303. All I ate was a ham sandwich. So all day my glucose was over 300, that is really bad. That can long term give me more neuropathy plus all sorts of other serious problems. My pain levels were low but I was very stiff feeling. no real pains all night.
I read a lot on PMR, found out it does no permanent damage to the joints, it is more of a muscle-tendon- surrounding joint tissue inflammation. This am resolved to not take any more prednisone, so for after a week I stopped today cold turkey. I am trying something else, something which a few years ago eliminated my bad foot neuropathy, but I got out of using it as it had gotten much better. Neuropathy can feel like your feet are on fire. I will let you know in a few days if it works. I currently do not have any real pain, but am a little stiff. I can raise both arms over my head. My hips do not hurt. But that is not related to the other thing I am trying out again as I just this am took that other thing. I am also taking some Ibuprofen, but less of it than before.
What sort of cereal? There may have been no added sugar but it will have had plenty of simple carbuhydrate in it which just changes straight to glucose in the body. And what sort of bread - white bread is the same.
You have only beed on pred for 2 weeks I think? I don't know as you have no information on your profile. Just stopping pred cold turkey after 2 weeks id OK - but don;t ever try it after longer as you could become extremely ill and at best need hospital, at worst it would be ICU and dicing with death.
Exactly, I knew had to do something soon, I think it has only been a week on prednisone. Just taking more insulin is not really a solution. I had almost doubled my insulin and still have to suffer the very high numbers. Yes all carbs and many proteins the body turns into glucose, for an insulin dependent diabetic, I often feel all food is poison. Sugar turns into glucose easily, but so does any carbohydrate. This is done by the liver. Rice Chex and Corn Chex cereal I tend to eat in the am.
I have also lost another 2 pounds this week, so I am still not eating as much as I used to eat. The prednisone did not make me feel hungry, which is a side effect for some people. Down to 224 from 238 back in December. I am 6'4" and always been pretty strong person till this hit.
I used to be able to lift a 400 lb V8 engine block off the floor. Put a hand in one cylinder, and a hand in opposite bank and lift it up a few inches. I might be able to do half that now. But yeah also getting older, now I am 63. the PMR hit in early December and then came at me like a lion in early to mid feb, but you know at my first PCP for diagnosis I had gotten slightly better. It was so bad I could not even push any pressure forward with either arm and by the time of the doc visit, that problem was gone. So has the extreme inner hip joint paint, so bad it was like mind numbing. But I never felt it in the joint cartilage itself, all the pain is in the surrounding joint area. And for the arms, the top of the arm running down a little the arms.
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