Talked to PCP about tapering, he says go from 20mg to 15mg prednisone using a pill splitter

[sdowney717]

I will see a rheumatologist on Jun 15. But my PCP also poo-pooed the idea of small dose pills of prednisone like 5mg, 2.5,g or 1mg which it seems some people take. Wants me to try a big taper next week to 15mg from 20mg. What do you think will happen? At 20mg, I still can feel some pain after waking in the am, and at might I get stiff. And when I feel pain I take 4 Ibuprofen. I can sometimes take 8 Ibuprofen a day. Those are 200mg each.

[piglette]

My rheumatologis suggested a 5mg drop 20mg to 15mg. He only prescribed me 5mg tablets.

[SheffieldJane]

It wouldn’t have worked for me. The guidelines say never more than 10% of your dose. You can see recommended tapers , if you go into FAQs. Rushing it tends to bring on a flare.

[sdowney717 in reply to SheffieldJane]

I know what your saying. I feel borderline at 10 and 10 already. Does a super high CRP of 103 at initial diagnosis relate to severity of the disease? That was my result in mid February. The pain felt pretty horrible. like making me wish I was dead kind of pain, hips, shoulder, some in the neck. Pain radiating down arms, could not push anything. Left wrist badly swollen up and about useless. Even had weird bubbly squishy feeling in my neck when turning head.

PCP initially was telling me osteoarthritis, but I said impossible as it hit me like a brick wall in mid December. And before that nothing. Then Xrays showed no damage to hips or wrists.

[PMRpro Ambassador]

What's up with these people? PMR isn't like acute disorders where pred is used to calcm down the inflammation until some other drug starts to work. You aren't REDUCING the dose to get OFF pred but TAPERING or TITRATING it to find the lowest effective dose and that is a much more sensitive process. To be using 10mg tablets to be cut is just making it harder for the patient when life is hard enough anyway. It makes me so angry.

Very high markers at the outset isn't really related to the severity of the disease although it probably DOES relate to how widespread the inflammation is in the body and very high levels like that should trigger concern this is GCA or at least LVV (large vessel disease) and not "just" PMR,

And frankly - anyone who tries to diss someone with "just OA" all of a sudden needs some re-training. Is there any chance you can change your PCP? What is their general field?

[sdowney717 in reply to PMRpro]

yes, exactly, he was originally telling me OA, but I told him does not feel pain in the bones of the joint, it was in the soft tissues around the bone, plus I had no history any arthritis. Wife chimes in he built a huge double story shed and used a hammer a lot, then doctor was thinking that was it, I was overworking my bones. Plus being a man, that was offputting for PMR as more likely women get PMR. What finally convinced him of my PMR, was my bilateral joints pains, no Xray bone damage, and super high CRP, and I was negative for RA factor and ANA. But yeah first meeting with him, he was not thinking anything except for general arthritis and wear and tear of a 63 yr old man who does work on things a lot.

[PMRpro Ambassador in reply to sdowney717]

Maybe twice as many women as men develop PMR but that is still a third of all patients! And a third of a lot is still a lot ... It is the most common cause of rheumatic symptoms in the older population. Lot of guff in the literature implying it being only seen in over 70s, What they mean is that the average age at diagnosis is 72 - and since many younger patients face great difficulty in getting a diagnosis that figure is skewed. I waited 5 years for a diagnosis as I was in my early 50s when it started.

When you split the dose, the usual recommendation is the bulk in the morning - about 2/3 - and the rest late enough in the day to carry the antiinflammatory effect to the full 24 hours. The earlier you take the better the day-long effect as the new batch of inflammatory substances is shed about 4am - ideal for the dose is 2am so it is present then and the inflammation never gets a hold. The longer you leave it, the more must be mopped up and the longer it takes.

And when tapering? NEVER more than 10% of the current dose.

[sdowney717]

I am glad I will be seeing a Rheumatologist in June. He looks to be mid 50's from his picture, so I hope he is more experienced with PMR. I did decide this AM to split my morning pill to 5, and take 10 in the evening just to see what happens. I know 2 weeks ago, I tried cold turkey cutoff to see what happens, I was fine the whole day, until I woke in the night and was in extreme pain, as in like worse than ever. Then it took several days to get back to where I had been relatively pain free.

[Telian]

Sounds as if you’re borderline enough pred as it is. As Pro says you need a second opinion. I dropped by 2.5mg from 20mg until 10mg. Then by 1mg but quickly changed to 0.5mg due to returning pain. We are all different and you need a Doctor that understands we are not all text book patients. Listen to your body - if it grumbles it’s not happy.

Good luck.

[PMRnewbie2017]

You said you feel borderline at 10 and 10. Are you splitting your 20mg dose to twice daily?

[sdowney717 in reply to PMRnewbie2017]

Definitely. When I took the whole 20mg in the AM, at night I was in a lot of pain. The pain was mostly in my shoulders.

Splitting it has not affected my ability to sleep.

[Flivoless]

Perhaps you should ask him/her how they faired when they had PMR and did turbo-charged tapering.

[Lyndaki]

Just out if interest, I thought that taking Ibuprofen while on Prednisolone wasn’t advised? I’ve always avoided it since my diagnosis & only take paracetamol

[PMRpro Ambassador in reply to Lyndaki]

It isn't advisable - my rheumy allows it but if it is more than the odd dose I am to take a PPI.

[sdowney717 in reply to Lyndaki]

Wonder why? I dont take it regularly. But if I feel some pain, I wont take more prednisone, see I take insulin too, and the prednisone has doubled my insulin or I can not get my sugars below 200.

Every day before I take prednisone, I check my glucose. And even it is 90 or 220, I will take 40 units of insulin cause without it just be eating a normal breakfast like cereal, my sugar may jump to upper 300's or maybe only 200. My glucose really have been varying wildly on prednisone. I recently got an April 26 appointment with my endo, I had not seen in 2 years.

I do have a big incentive to take less prednisone cause high glucoses are also very damaging to the body.

[PMRpro Ambassador in reply to sdowney717]

Because both pred and NSAIDs in general can cause stomach irritation which may result in ulcers forming or bleeding.

If ibuprofen is working it is more likely to be due to something other than PMR. And as a complex patient you need to be under a specialist in both diabetes and PMR. Especially since with the diabetes problem they should be thinking in terms of Actemra since you are in the USA and they can,

[DorsetLady PMRGCAuk volunteer]

Guess he knows diddly squat about PMR and tapering then! Hope your Rheumy is more knowledgeable, although that wouldn't be difficult from the sound of things.

You shouldn't be taking ibuprofen regularly alongside Pred -

a. both together can cause stomach issues, and

b. if your pred was controlling your PMR it wouldn't be necessary.

You need a different PCP..is that possible?

[sdowney717 in reply to DorsetLady]

have had zero stomach issues. But I take the pills with food. I am also insulin dependent. the prednisone has forced me to inject twice my normal doses up to 40 units. 3 times per day.

So you see, not interested in taking more prednisone at all. Rather also take Ibuprofen, which does work for me.

I honestly think if I was forced onto more prednisone I would die from the effects of uncontrollable diabetes.

And that would be a very painful way to die.

[DorsetLady PMRGCAuk volunteer in reply to sdowney717]

Fair do's... obviously your choice, and nobody is going to force on to more pred against your will- but you do need someone who understands PMR...

[Boss302Fan]

Good luck with that. Attempting 2.5 mg decrease from 20 mg to 17.5 mg caused me to flare. Fortunately I was on DL Simple Taper and I was able to recover quickly (less than 5 days) on 20 mg. Tried again with a 1.5 mg decrease (18.5 mg worked). I refused to attempt a new dose taper if experiencing any pain attributed to PMR.

My philosophy, manage my dose to prevent pain and ask forgiveness later (I surely didn’t call in and ask permission). First time when I wasn’t at the targeted dose where he wanted me, my Rheumy said I need to let him know when I flare (oops, I’m sorry…😜). After been started at 80 mg/day, and at that time been at it 5 months, I pretty much had an idea how to manage it. Just needed him to provide the Rx to allow me to match the disease.

[sdowney717]

So far this am till noon, have noticed zero difference in my body since taking half the 10 pill , 5mg prednisone at 6am. Will update later. I take my 2nd dose at dinner 6-7pm, which will be 10mg, one whole pill.

[DorsetLady PMRGCAuk volunteer in reply to sdowney717]

It may take a couple of days for your body to ‘notice’ the difference…. Hopefully not.

[Sharitone]

If he's telling you to split the tablets, then why doesn't he prescribe you some smaller ones anyway? As far as I know, they are not very expensive.

[sdowney717 in reply to Sharitone]

He just said, he won't do that.

[sdowney717]

Well an update on dropping to 5mg in the morning with 10 in the evening. Oh BOY, yes, I felt it, very very stiff. But not in my hips, not in the wrists, just a little tiny soreness in my shoulders, neck fine. I felt it in my knees, and my hands. Like getting down on the ground to work on the car, was painfully hard to get back on my feet. Knees don't want to go down all the way, physically painful to try. Hands got better all day long. Here it is at 6pm and getting ready to take the evening dose of 10mg. I also did mid morning take some Ibuprofen. I don't know if this is just my day to day variability of PMR. I have had bad days on 10 and 10 too.

One very nice, good thing, lunch glucose was 135, not upper 200 or even in the 300's.

For me was thinking, if I can cut the morning dose, see during the day I tend to eat you know food. So less prednisone during the day will work better with keeping sugars down. But after dinner, I do not eat anything all night long, so less pressure pushing the sugar up cause I wont be eating when I am resting and sleeping all night long.

[Sharitone]

Does he have something against patients? Well, it is possible to cut those things roughly into quarters, so 17.5mg is an option if you do want to reduce. Good luck!

[sdowney717]

Just checked my dinner glucose is 102, very good! I took 30 units insulin at noon.

[sdowney717]

Wow, I am suffering too much. This am tried 5mg. At 11 am, gave up 5mg taper idea and took another 5mg and a bunch of Ibuprofen. I could not even go 2 days, became like invalid. Almost impossible to get up from a couch. Lunch glucose 235. Starting to recover some mobility now. Wrists and hands swollen, shoulders hurt but not terrible, no significant hip issue. Big knee pain, can not close knee without a lot of pain. Fact is I can not close it all the way. I have experienced that somewhat for a while but got real bad after dropping morning does from 10 to 5

10 and 10 has been working ok, there is a delay though I think from where you cut prednisone back to get to where you were before you cut the drug.

[sdowney717]

I took a few days to just get back to feeling sort of normal after trying to cut a morning 10mg to a 5mg dose. Wrist not swollen, knees working, I can get out of a chair without a panic attack from pain expectation. Hips good, left shoulder still a little achy. I think the white blood cells attacking the body without enough prednisone to fool them causes damage, and then the body has to heal the damage they cause, the prednisone tells them to back off, they get suppressed.