Pmr symptoms

[Wanne]

Hi I have been diagnosed with pmr.and I am on a reducing dose of prednisone and aldronic acid once a week .since coming down to 6mg prednisone.i am experiencing pain and pins and needles down my right arm and my right hand.and head aches .has anyone else experienced this thanks

[HeronNS]

Coincidentally I have just started reading a book about magnesium and one of the symptoms of a magnesium deficiency can be pins and needles sensation. We are a bit vulnerable to this as we take extra calcium and it can be an imbalance between calcium and magnesium which leads to some symptoms. Not saying this is it, but something to keep in mind while you try to figure out what is going on with you specifically.

[Wanne in reply to HeronNS]

thanks for your reply

[Hidden]

Hi wanne ... Welcome. Are you sleeping OK, eating low carb and have you had a dexa scan to see if you need alendronic acid? That gave me severe hip pain the 5 times I took it and after a dexa scan I discovered I didn't need AAcid. I have had another scan 3 years in and no change. However, let's try and see what your arms are complaining about.

Now when were you diagnosed and what was your initial dose? ... There is no info in your profile.... And how have you been reducing pred since then? I am 4 years in and at 7.5mg so would be interested.

I have had shaking and numb hands on occasion but without further info its hard to help you. You may have dropped too low too quickly and the adrenal glands are grumbling. That may cause pain, and pins and needles too. Perhaps tell us a bit more so we can help you with your gp etc. 🌻

[Wanne in reply to Hidden]

hi diagnosed october 2019.i have not had any bone scans waiting for appointment.started me on 15mg pred and aacid.now down to 6mg and just stopped taking aacid last week.at the moment i feel a bit better without the aacid.my rightarm and hand are sore with pins and needles and swollen vains in hand.ill just see how it goes this week .thanks for your concern.wane

[Hidden in reply to Wanne]

I suspect your pred is too low. Perhaps speak to your Dr. Pmr us vasculitis and causes inflammation in the vascular system that needs to be Controlled so please don't suffer in silence. If it is the pmr and taking 6mg isn't work g then really there is no point taking any is there? We often say you need what you need. So please ask for at least a gp phone call and discuss pred dose. Feel better soon. 🌻

[Wanne in reply to Hidden]

thanks ill contact docs tomorrow and get advice .thanks wanne

[PMRpro Ambassador in reply to Wanne]

If you were only diagnosed in October, to be down to 6mg by now is very fast and I suspect you have overshot the dose you need at present. You aren't just reducing the dose to zero come what may - you are looking for the lowest dose that gives the same result as the starting dose did.

[SheffieldJane]

I would be inclined to stop tapering Pred and just take stock. Your body sounds upset. No hurry now, just nice and steady. Good luck - look out for grumbles from your Adrenals and go real slow, maybe half a mg each month.

[Pongo13 in reply to SheffieldJane]

I don't think you reduce AA as it is taken once a week. I believe you take it for five years (or however long the medics may determine is the required time) and then you simply stop. But I am happy to be corrected on this. X

[PMRpro Ambassador in reply to Pongo13]

Quite correct. You just stop taking AA whenever.

[SheffieldJane in reply to Pongo13]

I misread her sentence. That’s something positive about AA for me then. My next DEXA looms.

[HeronNS in reply to Pongo13]

I think they are now saying two or three years as they are concerned about new bone being laid over an aging matrix, which may lead to spontaneous fractures, more likely to occur the longer one blocks normal bone remodelling.

[Wanne in reply to SheffieldJane]

thanks for your advice wanne

[Wanne in reply to SheffieldJane]

thanks for your advice wanne

[Daffodilia]

Started to get headache at 6 mg - was amazed when paracetamol fixed it - I normally avoid them as they make me feel sick - ok with a drop of milk

[Wanne in reply to Daffodilia]

hi i am down to 6mg and have started with headaches.i have taken zapain which helps .wanne

[PMRpro Ambassador]

Which fingers are affected? Did you have anything similar with the PMR symptoms before starting pred?

[Wanne in reply to PMRpro]

hi both outside fingers and wrist .no symptoms before ive stopped taking aacid .and feels a bit better but to early to tell yet wanne

[PMRpro Ambassador in reply to Wanne]

That could be a sign that the ulnar nerve is being irritated/trapped somewhere - much like carpal tunnel syndrome affects the thumb to middle finger, problems with the ulnar nerve lead to symptoms in the ring and little fingers. Speak to your GP about it.

[T2305]

Hi Wanna, yes I had a similar problem, told by my GP that I was tapering down too quick, I was told to reduce 1mg every 28 days, but got a flare up, now I reduce 1/2 mg every 14 days, now down to 3mg daily, this seems to work for me.

I am the local Organiser for the Whitstable PMRGCA Support Group

[piglette in reply to T2305]

Isn’t 1/2mg every fourteen days the same as 1mg every twenty eight days?

[Wanne in reply to T2305]

just stopped taking aacid i feel they are causing me problems .wanne