Worsening burning, restless, pins and needles in both feet and calves - is this related to the prednisolone, PMR, or something related?

[Bennijax]

I cannot fathom why this is happening and why it is becoming worse.

I just cannot sleep for this.

I take Magnesium Glycenate each day, and have not been troubled by restess legs for several years.

I had been on 8mg preds since August 2021, Since this past autumn what with Covid, bronchial infection, and the autumn Covid booster I've been up to 15mg, tapered slowley to 12 - but - unable to taper further due to pain, aching, stiffness, fatique;

to help with tapering to 11mg and then to 10mg, Professor Rod Hughes advised me to have an 80 mg injection of D-M which happened yesterday. I can't feel any improvement yet, 24 hours later, but the feet and calves symtoms were at their worse last night.

Any ideas or suggestions gratefully received.

[PMRpro Ambassador]

The bivalent booster seems to have woken up all sorts of things. I assume you saw Rod Hughes recently? Did you ask him about the pins and needles?

[Bennijax in reply to PMRpro]

No, because when we first spoke (the once so far) it was about tapering difficulty - I will send a message now to his secretary. I thought to ask the forum as well.

[PMRpro Ambassador in reply to Bennijax]

How long have the neuropathy symptoms been ongoing? Why did you go up to 15mg?

[Bennijax in reply to PMRpro]

Thank you for aasking, PMRpro.

I didn't have neuropathy symptoms at 8mg, .... I was more or less at 8mg since September 2021, with several flares and I've been up to 15 twice in this time. But I was able to taper to 10 easily at first and then slowly back to 8, which is where I was when Covid struck in late September.

I had a bad bout of it but it cleared after two weeks. I found enough relief at 12 mg, then tapered to 10 and managed to get to 8.5.

Then a few weeks later in October I caught a respiratory bacterial chest infection and that sent me to 12.5, but I managed to get to 10 again by mid December; then I had the covid booster just before Christmas and reactions to that sent me to 15mg. I have not managed to get lower than 12mg and at 12 I'm not as well as when I am at 8. I've put on over a kilo of weight inn two months despite my strict diet - all I want to do is stuff my mouth, and my cheeks have puffed up a lot, rosacia acne (which I never had before oral preds) is much worse; blurry, scratchy eyes, painful elbows and ribs, sense of unsteadiness - all worse since I've been on 12 mg per day preds. Which is why I've wanted to taper to lower than 10.

[PMRpro Ambassador in reply to Bennijax]

Still not clear when the neuropathy symptoms started? After Covid, after the bacterial pneumonia or the vaccine?

[Bennijax in reply to PMRpro]

I'm checking my notes -

January 2 I wrote in my notes for the first time - 'Neuropathy'.

February 8 at 12mg I wrote 'Burning feet', feeling 'weird' and painful ribs on left side

February 21 at 2mg I noted 'Pins and Needles', soreness, aching

March 1 80mg Depo-Medrone injection at 2pm

March 1 over night to March 2 - unrelenting restless legs, worse burning feet (I stand in the shower and run very cold water over them), pins and needles, I cannot sleep.

I know that I do not mention everything in my notes which are short and abbreviated. But I did find these notes written on these given dates:

I write that after Covid, on October 8 I was still at 8mg with main symptoms being congestion, difficulty breathing and feeling dizzy from breathlessness.

My GP suggested I was in a flare and had me go to 12mg for a week. This helped me and I felt better. I was able to taper to 10 for a further week feeling good, then 9.5 for a week feeling weepy and aching. On November 1 I note I went down to 9mg. November 2 I had the FLU vaccine. I note that I started to feel stiff and achy but otherwise not bad.

November 8 I started to taper to 8.5 but then the symptoms of the bronchial infection started and soon had full blown form of bronchitis with bad chesty coughing. Gp said chest sounded bad and started me on antibiotics on November 15.

Things got worse and by December 8 I went from 8.5 to 10, then quickly to 12 until Dec 12 when I tried to taper to 11. That night I wrote 'itching' and eczema outbreak, depressed; December 20 I managed to get to 10mg and no symptoms recorded. 23/12 I had the covid booster - stayed at 10.

I ate rather badly over Christmas - had eaten foods containing gluten and sugar, my Christmas treats...

January 2 I note start of neuropathy. Over next days other symptoms appear - blurry, sore eyes, aching, stiffness, shoulders painful - so I go to 15mg on January 10. And I start to feel much better.

I manage to taper to 12.5 by January 16. And still feeling ok I taper to 11. January 21 I am aching, so return to 13mg which helps. I get to 12mg on Feb 4 and I noted that on Feb 8 I had burning feet, ribs aching, feeling 'weird',

then more of the same noted including sore right elbow, very itchy scalp and skin, and on Feb 21 I note pins and needles, aching, soreness. Ongoing each day.

March 1 80mg Depo-Medrone injection at 2pm

March 1 over night to March 2 - intensely awful restless legs, worse burning feet (I stand in the shower and run very cold water over them), pins and needles, cannot sleep.

Sorry this account is so long. It is more accurate than my own memory is.

[PMRpro Ambassador in reply to Bennijax]

I think my suspicion would have to be that this is all associated with the Covid attack and then the vaccine seems to have made things worse - apparently it can for 10-15% of Long Covid patients, for the majority it helps Long Covid symptoms.

If you haven't already done so, I think you need to take that history to your GP and make sure they look at it closely.

[Bennijax in reply to PMRpro]

I think my GP is gentle, listening and kindly, but not so experienced in PMR issues.

I will send the conversations inc my notes to Professor Hughes. I so hope to reduce the awfulness of the restless legs and burning feet - pins and needles at the level I have this in my feet and sometimes my hands I think I can continue to tolerate. I must get back to better and longer real sleep. Thank you so much PMRpro, thank you.

[Bennijax in reply to PMRpro]

and will send to my GP too.

[PMRpro Ambassador in reply to Bennijax]

The GP idea was because I'm far from convinced this is entirely PMR related.

[Bennijax in reply to PMRpro]

PMRpro, are you will to point me in the direction of your thoughts?

[PMRpro Ambassador in reply to Bennijax]

I thought I did - I think this could well be Long Covid related.

[minka]

Hi I'm new to this but. I've tried apple cider vinegar in water for a foot bath and it seems to sooth my feet. Hek my feet are stone cold this morning. Then I put alo vera on them at night for lubrication of feet that seem to help a bit. Or they would drive me up the wall. I was on pred then told to come off it by Rumi. Now I'm just on paracetamol and that's doing no good. Hope the feet tip helps you any regards minka

[Pixix]

just FYI, after my D-M injection, it was 3-4 days before I felt an improvement. I didn’t have restless legs for a couple of years, then I’ve had a bout of this for past 4 weeks. Drives me up the wall!!