Help with decision making on use of Prednisone for severe lower back pain

[justpassinthru]

Found all of you last night during my middle of the night forays into google searching for answers. I am a 65 year old male suffering from MRI diagnosed severe stenosis thru entire lumbar region. Used (abused) Ibuprofen for years until last year blood pressure went up, stopped its use. Had MRI's done 4 months ago, in Physical Therapy and Chiropractic for last three months not helping. (Back surgeon which I am not considering back surgery is pushing for Epidural injections which I would like to avoid as well with the low rate of success and severe potential injuries) I am able to Cycle (built a road bike that gives me an extreme back stretch while riding) I also built a Sauna that gives some relief. Prednisone 20 mg daily gives immediate complete relief and I am able to do anything physically. Without it my life is reduced to sitting in a recliner as anything I do aggravates my back and I am hunched over.

I have been taking Prednisone off and on for a month now. Take it for four days, 20 mg a day, then take 2-3 days off. By day three of being off, my back is back to recliner level pain. I monitor Blood pressure daily, goes from 125/75 up to 135/85 averages on Prednisone. I am a low carber, intermittent faster (eat during 8 hour window daily) no increase in weight with Pred. Not diabetic or pre... Sleep hard for first two nights then sleep not a problem. Not high, not low cholesterol readings, never had heart issues.

I have finally convinced a DR to consider Prednisone on a more long term basis. I see him again in 10 days. I started 20 mg this morning (back locking up) with the plan to continue that for three days, then reduce by 5 mg and see if my zero inflammation and pain levels hold. If so continue that dosage for three days then drop to 10 mg. (I started one of my previous series of Pred with 10 and it didn't work, hoping starting with 20 then reducing to 10 will hold).

At my next Dr meeting I want to push him to do a bone density test, run my annual blood cholesterol tests and glucose test.

Thoughts? Is my Dosing reductions reasonable? If I need 20 to stop pain can I do it long term safely? Any other tests that I should ask for assuming the worst for me, that I need 20 mg daily to live my life?

Thank you...

[PMRpro Ambassador]

I have severe low back problems, partly due to PMR and partly due to a scoliosis. A higher dose of oral pred improves it - but it is still a problem if I do the wrong thing like vacuuming because a large part of it is due to myofascial pain syndrome, in particular affecting the piriformis muscles. Pred can also help MPS.

Taking pred on and off as you are doing is not a good idea - yoyoing the dose often results in requiring more and more to get the same effect. It doesn't seem unreasonable though to ask a doctor to allow you to try a taper over several weeks to see if you can manage on a much lower dose than 20mg. You know 20mg works so you could start with 15mg for a couple of weeks before dropping to 10 and then 5mg for 2 weeks each. That was how I first was offered pred: a short taper to be able to stop without getting into too much adrenal function difficulties. Then, having found out what sort of dose is enough you could then try a taper to identify the dose that works more exactly. Long term doses below 10mg are not particularly risky, 8mg and below are described as physiological, similar amounts of corticosteroid to what the body produces in the form of cortisol and which is essential to life.

[SnazzyD]

Hello there. It is a complicated issue. I’m assuming you haven’t been diagnosed with PMR which is what this forum is for. If not, what inflammatory process were they prescribing it for, or was it a stab in the dark to find anything that works? What advice have they given re dosing or have you been left to your own devices? This seems a bit cavalier. If it is PMR (a type of vasculitis), this is not the recommended dosing pattern at all, but we need your answer on that one before droning on further. If it is some other inflammatory thing, it depends on whether it is a one off event that needs calming or a chronic situation that needs to be kept at bay, but it helps to know the driver for that.

Re the how safe is 20mg? question - Long term there will be a cost because it affects the body on many levels and weight, diabetes and bones are not the whole story. The other consideration is your adrenal function because if you frequently go above 10mg you risk your adrenal function becoming impaired. What I don’t understand is why your docs have decided it is ok for the patient to be in control of quite a high dose with no provisos or risk/benefit counselling. Anyway, there will be more replies but some answers to the above questions will really help.

[justpassinthru in reply to SnazzyD]

Thank you PMRpro for the reply. My mother dealt with scoliosis for many years. It was very painful for her. Glad to hear you have some improvement on Pred.

SnazzyD My apologies if I have posted into a sight that focuses on PMR. I wasn't aware and if too inappropriate will stop posting or replying, let me know I don't mean to intrude. As far as dosing. I am very frustrated with the medical profession as a whole, probably not alone in that regard. Back pain sufferers are pushed towards going under the knife, that in some cases can be a great thing, but in most the short and/or long term results are not worth the risk. Research shows the same for epidural shots, low risk, but severe if complications occur, and research shows little benefit. So I am left to find a solution. My first round of Prednisone literally brought tears...I was "normal" again. There is no going back...

Attempted to get into a Dr specializing in arthritis as I know that we are more knowledgable but several contacted want a referral. GP wont send me a arthritis diagnosis. General Practioner, Dr's as a whole just throw out a 10 day course of Pred with what I believe are lack of understanding of different ways to use Pred. I wind up telling my Dr's what I want backed by binders of research supporting my requests.

I have suffered and fought back my back pain for 18 years. Worked hard at it, yoga, swimming, cycling, herbal treatments, weight, etc I am at the end of my rope. I won't spend my life in my recliner as my mom did for the last ten years of her life, it won't work for me. Prednisone is a risk I am willing to take to live my remaining life as I want to.

I am a University trained researcher, I know how to chase the trail of research to its beginnings of a topic, branch out into all related research, understand the results and match it with published medical recommendations for Dr's. Hence my landing on your site. I know I need Prednisone to really live. I had been unable to find research on and off again dosing and the positives or negatives of that regiment. I got a hit on this forum for discussions on this and have read hundreds of the postings here. PMRpro's advice is invaluable, I was picking up on this in the forum that its better to work towards minimizing the dose then going on and off.

If anyone knows of a DR in the Portland Oregon area that really understands how to properly use Prednisone I would be eternally grateful for the referral. At this time I am running on the advice I learn from others especially the groups focused on particular issues that warrant Prednisone use such as Rheumatoid Arthritis and PMR, and on the decades of research on Prednisone use and side effects.

I am eternally grateful for any advice gained through your forum. It has been a long road and finally a glimmer of hope with Pred.

[SnazzyD in reply to justpassinthru]

I hear everything you say and your desperation is palpable. Sadly the type of narrative is all too familiar. If you don’t fit a box or if you refuse a perceived quick fix that has worrying risks it becomes a lonely journey. We try to help anyone so don’t feel you’ve strayed onto unfriendly territory. We just have to make sure we are advising within our skill set and let people know that. Often people here, as you have just found out, have experience outside their PMR world so it is worth a punt. Above all it is not wanting people to come to harm.

[PMRpro Ambassador in reply to justpassinthru]

I wonder if you could get a referral to pain management/palliative care (that isn't only for terminal illness, it is for anything that can't be cured but must be endured). Both branches use medication in a very different way from acute medicine to achieve a best possibly quality of life - which I would say is what you are seeking.

[justpassinthru in reply to PMRpro]

I am scheduled for an appt with a anesthesiologist and pain medicine specialist in several weeks. This was arranged by my Surgeons office with their recommendation for epidural shots. I am not convinced, and neither is research that a shot would have any value for me. Lower back pain without significant sciatica is not a good indicator for the shots. But I plan to meet with them anyway and see what they offer. I did research the specialist that I have been setup with and per his words "understands the complexity of acute and chronic pain conditions and uses a multidisciplinary approach to pain management to address the patient as a whole person rather than a collection of symptoms. He strives to educate patients about their conditions and treatment options and offers a range of conservative and minimally invasive treatments for a comprehensive solution to pain... aims to resolve patients’ pain while improving their overall functionality for a better quality of life."

So there is hope.

This morning I went back onto 20mg if I hadn't I would be in my chair all day. I am going to experiment (yes i know ) with tapering down and see if my pain level holds at less Pred. This will be valuable info for myself and the GP visit in a week and the Specialist Visit in several weeks for weighing alternatives. I am also able to do HD physical therapy work when on Pred. So another possible outcome is I improve my back with conditioning and am able to come off pred again.

Thank you for the warm invite. Just talking about this with others that "get it" is therapeutic.

[PMRpro Ambassador in reply to justpassinthru]

The pain management clinic here considered an epidural procedure - but would try an injection block first to see if it would work - not entirely sure of the details. Physio and less heroic measures keep me upright though.