PMR and Spinal Stenosis

[Foodie24]

I was diagnosed with PMR in March and have tapered from 15mg to 8mg of Prednisolone. However, since then I have been diagnosed with multilevel spine degradation and severe spinal canal stenosis. I have been listed for a lumber decompression in November/December. Some days I find it hard to work out which condition is causing the pains in my hips. I am also unsure how low a should go with the tapering before my operation.

So I would interested to know if anyone in the group has had a similar combination of conditions.

[PMRpro Ambassador]

As far as tapering is concerned I think you should speak to the surgical team about what level they would like you at before the surgery. As a long term pred patient, you will almost certainly get a covering dose of hydrocortisone during the surgery and that comes under the anaesthetist's duties. So you need to speak to both before surgery.

As for tapering otherwise - I'd taper as long as it doesn't make anything feel worse, whichever it might be.

My friend has just had surgery for this - delighted to finally be pain-free but the post-op rehab that must be done is hard work she says.

[Foodie24 in reply to PMRpro]

Thank you PMRpro, I have emailed the spinal consultant and sought his advice. The next on my list is my doctors surgery as I have not had a follow up on PMR or prednisolone tapering since June 14th. In fact my last repeat prescription for Prednisolone was rejected because I needed a medication review. I then had to raise an online triage to insist on getting enough 1mg tablets for my 8mg a day. A medication review has still not been arranged, they said they will contact me, and I know my next repeat Prednisolone requests will also be rejected.

[PMRpro Ambassador in reply to Foodie24]

That is really not on for a longterm steroid patient. Practice Manager??????

A few weeks ago I forgot to pack my pred when I was away for a funeral. Only 3 days but I had no difficulty getting a week's supply from a pharmacy as he was of the opinion it was far too dangerous NOT to provide me with emergency supplies.

[suzy1959]

I have just been diagnosed with spinal stenosis too but I think mine is not as bad. I am going to have injections in the facet joints next week and possibly ablation later. I had this treatment about 13 years ago just before I got PMR and the pain went until now. So here’s hoping you are pain free after the procedure!

[PMRpro Ambassador in reply to suzy1959]

That is really impressive!

[arvine in reply to suzy1959]

I have seen an orthopaedic surgeon , been suffering with spinal stenosis, dd buldging disks, osteoarthritis, jad non invasive decompression treatments over year ago, 20 sessions, and it helped, now for last many mos in pain sgain, with other ongoing issyes as well, so for now he suggested nerve blocks, guided ultrasound injections, which havevmade appt for, have had to reschedule going through some kind of condition lower pelvic pain and pressure, bloating, at any rate got side tracked there feeling very unwell, but my question is are you talking about nerve block injections, that have eased pain from spinal stenosis?

[suzy1959 in reply to arvine]

I had a nerve block 18 months ago but by then the sciatica had gone and I wasn't in much pain. I don't think it was very effective. This time, I have much more quite specific pain which appears to be mainly in the facet joints like had 13 years ago. They start with steroid injections under X Ray and sedation. That can kill the pain for sometime. It only worked for 3 weeks for me last time. If it works at all it is used as a diagnostic and they then burn the nerves off under sedation. The nerves can grow back but I think I was lucky until now!!

[S4ndy]

I have a mixture of spinal conditions in addition to PMR. Last year I underwent surgery to release spinal nerves. The anaesthetist didn't require me to alter my steroids (I was on 5mg) but made sure I was given cover during the operation.My operation was successful reducing the pain and numbness in my leg. My surgeon had warned me that I wouldn't get back pain relief as he was concentrating on a specific nerve group.

I recovered well. I found swimming to be the best form of exercise and did my physio in the water.

I hope your op gives you a degree of relief.

[Whippetygirl]

good afternoon Foodie 24, I too had the same problems that you are experiencing plus a synovial cyst that was crushing my spinal cord. My surgeon told me before the operation that I would never be pain free. I had my Surgery in March and I am 85% pain free which is amazing, after surgery you just have to be sensible , be careful and not do anything silly. So don’t worry too much and hopefully everything will be fine. Take care.x