Another flare, this time post-surgery

[HelenDaisy]

I was diagnosed April 2019. I've had 2 flares in that time, but managed to get down to 11mg, and was hoping to stay there another week before another Dead Slow Nearly Stop taper.

I had a lumbar laminectomy on Sept 9th, after realising the terrible pain in my back and legs wasn't all PMR. (It can be so hard to differentiate these pains!)

The spinal surgery went well, but the recovery was more painful than I'd expected, and analgesia wasn't working. Suddenly I realised on Thursday I felt dreadful and flu-like....and on Friday I relapsed big time. Terrible pain, and spent the day in bed, utterly exhausted.

On Saturday and Sunday (today) I decided to take 15mg Prednisone, which has worked. I have normal energy and just some gluteal muscle pain. I even plan to teach my on-line exercise classes as normal.

My question is: how many days should I stay on 15mg? And then should I go back to 11.5 or 12 mg where I was controlled and comfortable? And then do a normal DSNS taper? Like everyone else, I'm desperate to taper, as I'm now Type 2 diabetic and have osteopaenia....

Thank you in advance for your advice!

[PMRpro Ambassador]

"I'm desperate to taper, as I'm now Type 2 diabetic and have osteopaenia."

I have osteopenia - at a guess, so do almost all of us. It is a normal state of affairs at over 55, What matter is the t-score and HOW osteopeneic.

If you haven't already done do, you can do a lot towards the diabetes by cutting carbs drastically - especially processed carbs and added sugar. If that isn't enough on its own then you may have to tighter on things like root veg and fruit and other carbs like wholegrains.

It depends a bit on whether this is a flare just as a reaction to the surgery that will settle quickly or whether it is a real flare triggered by the op and it is difficult to know which it may be. You probably need a week at 15mg - and do the drop in 2 steps with a week at the interim dose.

[HelenDaisy in reply to PMRpro]

Thanks. My DEXA scan shows no change in 24 months (can't recall the scores but my rhuemy wasn't too worried. I'm on Calcium, Vit D and Alendronic Acid.)I'm steroid-induced diabetic, controlled by Metformin. I'm told it will go once I'm off steroids.

So I'll stay a week at 15, and stagger the drop back to 11.5 as you suggest. I wasn't sure if being back at 15 meant I needed to do the very slow taper in 0.5mg steps. That would be so depressing given the other side effects I have.

I have a rhuematologist appt in April, and he did mention steroid-sparing meds if I can't get under 10mg. At this rate I doubt I'll make it.

[SheffieldJane]

I had to look up your operation because I hadn’t heard of it. You have my full sympathy. PMRPro’s advice is sound as ever, as regards your PMR. I did read, however that patients can experience pain from this op for up to 18 months. It will be tricky to work out whether it’s part of your recovery or PMR. I hope your classes are nice and gentle. You do need to let yourself heal.Incidentally I was diagnosed as having steroid induced diabetes shortly after going on to GCA Pred doses , I am pleased to say that it has righted itself with diet and lower dose Prednisalone (10mgs).

[HelenDaisy in reply to SheffieldJane]

It's been hard to differentiate the 2 reasons for pain, both pre-op and post-op. I've guessed wrongly a few times, or I would have sought help for my back earlier, and I might have realised I was having a flare sooner! Good to hear that your Diabetes has gone, that's my wish too! Best wishes.

[Cross-stitcher in reply to HelenDaisy]

Yes, it can be hard to differentiate the cause of pain, especially as we are getting older anyway. My own "test" is to try normal pain meds (paracetamol or codeine but NEVER aspirin, ibuprofen or other NSAIDs). If the pain is relieved, then it is probably not a PMR flare and there is no need to increase the pred. I think PMRpro has a suggestion to take a "flooding" dose of paracetamol first before reverting to "normal" dosage levels.

[PMRpro Ambassador in reply to Cross-stitcher]

No - the "flooding dose" is for ibuprofen only, it is the correct way to use it and how it was designed. Paracetamol must NEVER be taken at above the recommended dose - too dangerous for your liver if you are unlucky.

[Cross-stitcher in reply to PMRpro]

Thanks, PMRpro, for this clarification. However, I am confused. I though ibuprofen (and other NSAID's) was an absolute "no-no" when taking pred. And, recently, when a paramedic attended my husband for severe chest pain, he was given a large dose of paracetamol in solution by IV, one gram they said, before being taken by ambulance to hospital for heart investigations. Can you exp[lain, please?

[PMRpro Ambassador in reply to Cross-stitcher]

One gram of paracetamol at a time is the standard maximum dose, 2x500mg. 4g is the daily maximum, 3g for the elderly patient (over 55). But i.v. paracetamol is a wonderful pain reliever - as good as morphine it is said but not addictive or constipating - as anything i.v. is there immediately and works almost instantly.

It isn't a good idea to take any NSAIDs regularly when you are also taking pred - each alone can irritate the stomach and the effect is increased if you take both together. However, for most people the odd dose is OK - and using the flooding dose of ibuprofen often means you don't need more or once pain relief is achieved you can switch to oral pracetamol to maintain it. If you are worried - then take some stomach protection as well. I had a week of high dose NSAID infusions for a severe back problem - ordered by the rheumy but he insisted I needed a PPI.

[Cross-stitcher in reply to PMRpro]

Many thanks, once again, for this clarification.

[Manchild]

I had a lumbar laminectomy 4 years ago (an open procedure) and it took me a good year to get back to “normal”, and shortly thereafter PMR kicked in.I would respectfully suggest that you put off teaching any kind of exercise class for a while, and let the muscles, ligaments, bone and soft tissue in your back have a chance to fully heal.