Feeling terrible and need advice on dose to go back up to

[PMRinUSA]

Hi my fellow PMR people. I know I have been remiss in sharing my story, and I've been thinking I will sit down and do that soon so anyone with the weird side effects I have had won't feel so weird :-). In the meantime, I have a taper problem and need your input please.

I'll give you a nutshell version to ask my question. I was diagnosed with PMR Sept 2017 at age 51 about a week after severe symptoms started (I know I was lucky) and needed to start at a high dose of prednisone (40 mg). After some issues I will share later, ended up on Medrol in June 2018, which has been working well for me. I started at 17 mg/day (same as 20 mg of pred) I have been using the DSNS method very successfully since then to lower my dose slowly to 3/4 mg per day (!) of Medrol! I was so excited. My baseline is not perfect -- muscles hurt when I poke them, so I just don't, but no stabbing shoulder pain on raising my arms, which is my #1 PRM symptom. Even after pausing due to the stress of the pandemic at 1mg, I started going down again to get to 3/4. Then I reached the point of going down to 1/2 mg per day (1/4 to drop is the smallest I can cut the 2 mg pills, and even this does not give me great quality control). After my first few times taking 1/2, I did not feel great. I know sometimes I have to just push through if I feel icky for a few days after testing a lower dose and then I feel better, but that did not work this time, and I went back to 3/4 and stayed there for several weeks.

It does not seem to be working. I feel really foggy and achy. I feel like I could fall asleep at any moment, but when I try, I can't. Both shoulders and hips hurt more than the usual "pain on poking only," and my left shoulder has given me several stabbing reminders that PMR is still here over the last week. My right hip, not to be outdone, is working to prevent me from being able to bend over at all. I am heartbroken but know I need to go back up for a while :-(.

My question: Should I go back up to 1 mg? 2 mg? Assuming and hoping I will feel better, how long should I stay there before starting to taper again? Thoughts and advice are greatly appreciated. -- Kathy

[PMRpro Ambassador]

You are never reducing relentlessly to zero - you are looking for the lowest dose that gives the same level of relief as the starting dose did. You have obviously gone past that. You need to go back to the last dose that did work to that level. That's one aspect.

Despite your slow taper, I would say your adrenal function is lagging behind the drop in dose. Your body requires corticosteroid in the form of cortisol to function, you can become extremely ill if there isn't enough. While you are on higher doses of steroid the body knows it doesn't need to produce more and the adrenal glands go into hibernation. Once you get to about 5mg they start to wake up again but that can take a long time - months, even years. The fatigue is possibly also that.

A couple of weeks ago Prof Dasgupta, a world name in the field of GCA, said in a webinar for the charity that he keeps patients on 2 or 3mg indefinitely. It seems to reduce the risk of relapses and is such a low dose it is not a problem. It is a lot less than your body produces naturally in the form of cortisol - and your body will add less because the baseline is higher.

I know everyone wants to get off pred - but it is not necessarily the right thing to do. Such a low dose is not hurting - but if you develop a flare you may have to go back to a much higher dose to control it and then go through the reduction again. And if your adrenal glands are wobbly - you could become really ill.

[PMRinUSA in reply to PMRpro]

Thank you PMRpro -- I took 3 mg today and also some ibuprofen in case there is also DOMS, from cleaning in my office, and i am feeling a bit better today, thankfully. I'll take a break from tapering and see how I feel. -- Kathy

[Fran_Benson Partner]

As PMRPro said, Prof Dasgupta keeps some patients on a very low dose of pred indefinitely. You can access the webinar here if you'd like to listen to it pmrgca.co.uk/content/pmrgca...

Fran

[hurryupharry]

Hello, I am in a similar position. I was diagnosed in 2015, started with 20mg pred. Through no particular routine reduced to 1 mg. I tried to go to 0.5 but suddenly had all the old symptoms, it took a while to realise what was happening. Spoke the the doctor who advised a large dose for 10 days then resume the smaller dose. It seemed to work, but only for a short while. although I restarted at 2mg. I have been increasing trying to find a level where I feel ok. So far 5mg is good, I'm just a bit tired, no real pain and not that desperate exhaustion. I am going stay at this dose until it feels normal and then try to reduce. This time I can follow the reduction routine described in the forum. I think it's best to talk to the doctor, but listen to your body's reaction. Good luck.

[Irishfurbaby]

Hi Kathy

I have got down to 2mg a day but also take Iburofen and paracetamol tablet with prednisone in the morning and also the Iburofen at night -but must have food with this tablet

Hoping to get to 1mg next week. Have been warned of withdrawals when you start to ween yourself.

Also becuase it is cold down here Australia I have been sleeping on an electric blanket . Stretch a lot -yoga and keep moving.

This works for me - good luck.

[PMRpro Ambassador in reply to Irishfurbaby]

You are a lot braver than me taking ibuprofen regularly with pred!!!

[PMRinUSA in reply to PMRpro]

Is ibuprofen no recommended with Medrol?

[PMRpro Ambassador in reply to PMRinUSA]

No NSAIDs should really be taken alongside corticosteroids of any sort and especially longterm. Both can irritate the stomach lining and lead to bleeding - both together increases the risk.

[PMRinUSA in reply to PMRpro]

Got it, thanks! I only took it once, so I think I'm OK for now but will keep that in mind!

[Irishfurbaby in reply to PMRpro]

Spoke to pharmacist and Dr as long as you eat after taking the tablet you are fine. It is only 150 mg with a paracetamol 500mg together

[PMRpro Ambassador in reply to Irishfurbaby]

They think? I have a PMR friend who was told to manage PMR with ibuprofen, she wasn't even on pred. After 3 doses she was in A&E with a coffee grounds gastric bleed. I use ibuprofen - isolated doses and always with food obviously. But I wouldn't choose to use it regularly instead of a low dose of pred.

[Irishfurbaby in reply to PMRpro]

It is a combination of Ibotifen and paracetamol just while it is really cold down here.

[PMRpro Ambassador in reply to Irishfurbaby]

Out of interest - what do you call "really cold"? I always wonder

[Irishfurbaby in reply to PMRpro]

Not as cold as you guys

[Meggsy]

Hello PMR in USA. After being on 3.5mg for almost 2 weeks I developed pain in my left arm and left side of chest, a bit of a worry re the heart. It persisted for a few days so added an extra 5mg and next day - pain gone. Whew! Not my heart! Stayed on 8.5 for 5 days then 5 for 2 days and was previously pain free on 4mg so will stay there for now. All the best 🌻