Update on PMR & Hashimotos and post viral slump

[FleetRose]

I'm not sure where to go from here. With an apparent flare after recovering from a severe chest infection I increased my steroids on 25th December from 7mg to 12mg as per the flare protocol. However, after 8 days I am puzzled as there seems to be no improvement. I have an achy and stiff lower back, painful thigh muscles, stiff calves and changes in sensation (tingling) in my legs down to my feet. My legs also feel very weak and uncoordinated and I am rather unsteady.

I have tried to contact my rheumatology department but will not hear back until the middle of next week. I do not know whether this is related to PMR or to my osteoporsis - I know I have very low lumbar spine bone density.

Could anyone advise me please whether I should drop my steroid dose back to 7mg (or 7.5), given that it does not seem to be helping or whether I should give it a bit longer. I tried taking two paracetamol today which seemed to help my back a little but had no effect on my legs.

I wish you all a very Happy New Year and want to take this opportunity to give my heartfelt thanks to those who have given their support and advice over the last two+ years. It would have been a very lonely and frightening journey without you. Best Wishes.

[PMRpro Ambassador]

I think that does suggest that it probably isn't the PMR. I wonder if the Hashimoto's is causing muscle problems - my daughter's can swing around quite quickly.

But more urgently, I'm sorry to ask such a personal question - but do you have any bowel or bladder problems? Are the changes in sensation just in your legs or are they also around the peroneal area - does it feel strange when you wipe yourself after the toilet or have you had any incontinence or urgency? Or are you finding you don't know you need the loo?

[PMRpro Ambassador in reply to PMRpro]

I'm asking because it could be symptoms of cauda equina syndrome

my.clevelandclinic.org/heal...

You can see you mention a few of the symptoms.

[FleetRose in reply to PMRpro]

Thank you for flagging that up. I do not have any bowel or urinary problems or numbness in that area. I do wonder though whether I should contact the GP in the morning to get it checked out (if I can!). I am rather worried about the weakness and changes in sensation.

Do you have any views on my prednisolone dosage?

[PMRpro Ambassador in reply to FleetRose]

Well yes - that is what worried me and it COULD be the early stages as they describe, everything starts somewhere. If anything there in the article does appear - you need the ED/A&E immediately.

If the pred isn't helping, is there any point keeping at that dose?

[DorsetLady PMRGCAuk volunteer]

As PMRpro has said, if the increase in Pred hasn’t helped at all, then maybe drop back to 7.5mg. Might be worth try a few more days.. but entirely up to you.

Good that paracetamol has helped your back..

[S4ndy]

Hi there, I would urge you to see a doctor and perhaps get an MRI of the lower spine. I had symptoms like yours which got worse and affected my bladder. MRI showed up various problems including some impingement of nerves including the cauda equine. After nerve conduction tests I had surgery in 2023 to decompress the nerve. Much better since. I now don't have anywhere near as much numbness or pain in my left leg. I still have back issues and need painkillers daily but the bladder issues have gone away.

I would see your GP first as they can request an MRI.

[FleetRose in reply to S4ndy]

Thank you S4Andy. Just to update, I phoned 111 late yesterday afternoon and they sent me to an emergency GP at the hospital (via A and E). He did some fairly basic tests to make sure I could move and feel my legs and said that as there was no bladder/bowel involvement, it was a GP matter if it didn’t go away in a few days.

I have decided to try my GP this afternoon and see if an MRI could be organised. It is certainly not getting better and I’m not happy about the ‘wait and see’ approach.

Thank you again for your advice.

[PMRpro Ambassador in reply to FleetRose]

That is what I was wondering - and obviously your local NHS is only interested when there is a fire to put out!!

If you can afford and get an MRI done, I'm sure it will answer some of the questions and help you know how much concern is required.

[S4ndy]

I am afraid it will be wait and see. The state of our NHS now means long waits for everything. MRI shouldn't be too long though. I actually went private in the end as I am still waiting to see a Neurosurgeon in the NHS from the original referral in June 2022!

[PMRpro Ambassador in reply to S4ndy]

They do jump when presented with worst case scenarios though - though I'm not sure at what stage the balance of risk for the op happens.

[FleetRose]

Here's an update on my lower back and leg problem including tingling and unsteadiness ?cauda equine. I managed to get an MRI after a visit to the urgent care team (as advised by 111). The result was 'unremarkable'. My symptoms persist and today my GP referred me to a neurologist. The wait is months/a year so I am arranging to go privately. I don't know how long that wait will be!

I am glad I had an MRI to rule out cauda equine so thank you for that advice. I don't know what neurology investigations will reveal - possibly that it wasn't PMR all along!

[PMRpro Ambassador in reply to FleetRose]

We wait with bated breath!!!! But at least it isn't cauda equina.