Trouble Tapering

[noslak]

I was diagnosed with PMR 2 years ago. My doctor started me on 40 mg prednisone. I think the higher dose was because I was in severe pain. It didn't take too long before I tapered to 20 mg. I then got down to 15 mg but had to go back up to 20 mg where I was stuck for a while. By this past February I had tapered to 16 mg. My doctor suggested that I tapper 1 mg every 2 months. By July I was down to 13 mg where I didn't feel too bad. On Sept 3rd I tapered to 12 mg. I am not feeling well at all now. I sleep a lot, getting a lot of muscle spasms (and yes I take Magnesium), feeling a bit nauseous, off balance, & foggy. Could I be having issues with my adrenal glands already? Isn't this a little too soon for that?

[piglette]

I would not have thought your adrenal glands would have started waking up yet. Have you tried taking any other painkillers? If so did they work well?

[noslak in reply to piglette]

Tylenol helps a bit for pain but the symptoms I am having are more in line with lower doses of prednisone. I’m at 12 mg & I feel like what others describe at below 7 mg.

[piglette in reply to noslak]

Probably not a bad idea to ask your doctor to check you out. It could be that you were not quite ready to reduce.

[DorsetLady PMRGCAuk volunteer]

Does sound a bit high for adrenals, but there was another member a few weeks ago having similar issues, so I wouldn’t rule it out completely … but as suggested maybe speak to your doctor.

It might be worth returning to 13mg, seeing if that helps -and then reducing by only 0.5mg a time and using one of the slower tapering plans-

healthunlocked.com/pmrgcauk...

[noslak in reply to DorsetLady]

I am returning to 13 mg & then I will try reducing .5 mg at a time after that. My doctor is very good at allowing me to adjust to my symptoms.

[DorsetLady PMRGCAuk volunteer]

good….

[PMRpro Ambassador]

It is very high for problems, but some people do seem to feel it that soom. Really strange.

[RachelJDH]

I too am a bit stuck having been started on pred since oct 2021. I have found reducing to 12mg has me crawling up the stairs every time. However in recent days I have been taking 5mg at about 1.30 in the morning and the balance of tabs at breakfast and have been much improved, esp in the morning. I even had no adverse symptoms when I reduced to 12mg for one day. I will try 2 days at 12 next week. I did try taking my whole dose in the night but found I was too buzzy to sleep at all.

[PMRpro Ambassador in reply to RachelJDH]

If you split the dose and time it right you may find the antiinflammatory effect will last 24 hours and saves the dose in the middle of the night. Take about 2/3 with breakfast and the rest late enough to get the good morning effect.

[RachelJDH in reply to PMRpro]

Thank you. I find your advice really great. 🙂

[moonieboy9358]

I tried to taper at the rate my doctor wanted to. I felt horrible. I had headaches, diarrhea, and felt beyond horrible. I was tapering to fast. I only was able to taper by a half milligram at a time. Everyone's body is different.

[Sandmason]

I started at 20 in March '23 and slowly got to 15 by May, but am stuck around 12 to 13 now. Mid level pain. I just started LDN last month, tapering UP to 2mg last night. I'm optimistic because this morning is better than yesterday, maybe it will help. I also take Plaquenil. No idea why tapering is harder for some. Finally saw a rheumatologist and he refused to diagnose PMR or accept me as a patient. My Gp also is afraid to diagnose or treat it though my symptoms are classic. Sudden disabling hip & shoulder pain in a 70 yo female of NEuropean ancestry, with family history of PMR, CRP of 16. My husband and daughter are internists so I can get RX. They believe it's pmr. Rheum said it's osteo but didn't order x-rays or anything.Long sorry, caffeine!

[PMRpro Ambassador in reply to Sandmason]

Call himself a rheumy? Very poor - but there are rheumies who think it is below them and a benign disorder like a cold! Hope they all get it one day!

[Sandmason in reply to PMRpro]

He's 67, just moved here and maybe hasn't been seeing actual patients. He was involved in an "infusion center" in a big city. He told me to I should have gone to an internist and was mad that I was already on pred. Like what, lay in bed for 8 months and pretend I dont know this is PMR? Hubby with 40 years experience as an internist himself? Getting a Dr appt in a rural area is not easy. So rude to me! Still mad!

[PMRpro Ambassador in reply to Sandmason]

Time he retired - he is practising under false pretences. I fear if it is PMR it is his responsibilty to diagnose - NOT an internist.

[Sandmason in reply to PMRpro]

You nailed it. PMR is beneath them, a common old lady condition. In the US, we are on Medicare after 65 and it pays next to nothing. Rheums within 300 miles don't even list PMR as a condition they treat. The GPs treat it.

[PMRpro Ambassador in reply to Sandmason]

It may change, though not immediately - there are several European rheumies making exciting discoveries about the complexity of the disease. It will become more popular as a diagnosis and challenge!

[Woody1951]

Good morning yes, your doctor was probably correct at starting you high to alleviate the pain. The tapering is the most difficult thing to get used to I was able to go from 40 mg to a zero I now no longer take prednisone but it was a very difficult process and took me just over a year once you start hitting levels like 12 you’ll start to experience some pain and fatigue. If you can tolerate this continue and stay on 12 until the pain subsides. Then start to taper again, but I would suggest you do not go too quickly as a relapse as possible when I got down to 3 mg I had to go back up to five because I thought I was close enough to get off. Big mistake. Take your time you will get off, but you will also endure some pain along the way. Good luck hope this helps.