Have I had a 6 month flare and not realised it?

[Mack100]

I was diagnosed with PMR late 2019 and up until the beginning of 2023 I followed the excellent advice here and slowly reduced my steroid dose to 4mg daily using DSNS which went very well.

I have a 55 year history of severe low back problems and sciatica also eventually leading to paralysis of my right calf muscle but of later years the symptoms have been quite manageable.

In January 2023 I foolishly moved a heavy telescope, tripod and mount into the garden so my 6 years old granddaughter could see Jupiter. The result was a 9 month long battle with terrible sciatic pain and weakness of my right leg, during this period I decided it wasn't a good idea to try to reduce the pred any further until I felt better so I stayed at 4mg where I have been until now.

In April this year I had another episode of extreme pain and weakness which I put down as more lumbar spine problems and sciatica and manipulation, exercises and other thing haven't really made a dent in it.

Last night I dropped a pill onto the carpet and on bending down I realised how stiff and painful my hips were which is not normally a cardinal symptom of sciatica but had been present for months. This led me to examine more closely my symptoms and I realised that most of my 6 months of pain was centred in both my buttocks, across the hip girdle and down the back of my thighs with weakness in both legs, superimposing the sciatica seemed to muddle the picture. I also improve with movement but if too long then my legs become weaker.

This symptom picture is so closely that of PMR affecting that part of the body ( it wasn't so bad there in my first episode of PMR) that I've decided to increase my pred dose starting last night to 10mg daily divided bed time and morning.

Just picking the brains of you people on here, does this sound plausible or am I barking up the wrong tree. Apologies for the rambling post.

[DorsetLady PMRGCAuk volunteer]

No need to apologise..

Could have been PMR all along -if you were just below your optimal dose, it can take time for the overflowing bucket to do just that!

See what the higher dose does -and treat as flare anyway. Maybe drop back to 5mg .. rather than 4mg.

Any slow taper is definitely the way to go- but it doesn’t mean you won’t go below the dose you actually need. Just means it’s easier to catch -usually.

Hope you can sort it -and be on your merry way…

[PMRpro Ambassador]

I think it could be plausible since I have just had a similar experience, not as bad by any means and not sciatica really since it doesn'treach far enough down my leg. The low back pain had been improving steadily all year and then I thought the stiffness was just a long long drive. Then I realised it felt just like PMR did when it first started - and a few days of more pred made SUCH a difference!!!!

And surely whether you are barking up the wrong tree will clarify with the extra pred? Hope it works because this deep in the hip joints discomfort is really draining isn't it? And for me it is more a discomfort than a pain as such,

[Mack100 in reply to PMRpro]

Many thanks for your reply and also to DorsetLady .

I've never thought about this "bucket of inflammation" but it's very interesting because it would seem that I had thought that the 4mg dose I had been on for ages was my optimal dose and yet this "bucket" was gradually filling up until something triggered it.

I'll post soon if there is any significant improvement although contrary to my usual pessimism I'm noticing that the proverbial "pain in the rear" seems much diminished even today, early days though!

[PMRpro Ambassador in reply to Mack100]

It may only be minimally too low - but if you had a good margin before you dropped the dose to the slightly too low level it can take some time before you notice,

[Zebedee44]

Hi, my own “pain in the rear” has finally been identified by my physiotherapist as gluteal tendinopathy and requires a different approach. Since January I have treated the pain as sciatica although suspicious about my own diagnosis and finding sciatica exercises didn’t improve it. It is nothing like my bilateral PMR pain so I have persevered with the taper and holding at 3.5mg. The pain has settled in my right hip and calf.

I understand that tendons need a long slow period of strengthening and I am glad that the physiotherapist treating me has finally identified the problem. So this is just a word of caution to make sure you get the right treatment. All the best.

[Mack100 in reply to Zebedee44]

Thanks for the reply, I have looked at gluteal tendinopathy as a possible cause of my sacral pain and it's on the list to do if my idea of a flare doesn't work out. Thus far, 36 hours about, the increase in pred seems to be working.

The "pain in the rear" is diminished, I have less hip girdle stiffness and my walking seems stronger but I realise it's early days yet. The infernal sciatica now seems worse so I'll have to tackle that.

All the exercises I was given by physios and osteopaths only exacerbated the pain so I'm just walking at the moment, I'd love to get back to using my indoor bike which is excellent for reducing blood pressure.

All the best to you too.

[KASHMIRI1]

Good morning, I have pain in my lower back and left buttock radiating down my leg, plus sciatica. Its been diagnosed as spinal stenosis and I wait for it to be operated on. In the mean time I have had acupuncture for the sciatica which went after the second visit. It was really incredible.

[Mack100 in reply to KASHMIRI1]

I'm glad the acupuncture worked for you, it doesn't for me unfortunately.