Tingles in the fingers, Pred??

[JohnnyQ50]

I feel it in my fingers, I feel it in my toes, pred is all around me and so the feeling grows. Sounds like a Trogg’s song but I have pins and needles in my fingers and toes and at night can feel my pulse in my fingers.

My question is what is the cause, pred or PMR?

I started on 30mg last October and have been on 13mg since mid December and about to start 3mg taper over next 12 weeks.

If pins and needles is caused by pred then tapering may ease it however if it’s PMR then I may be better holding off for a while.

Appreciate any advice from those that may have gone through this.

Also best wishes for 2019 to all those on the PMR journey, I hope it’s a short one😀

[Hidden]

Hi, when I was diagnosed some years ago with another auto immune condition (Guillan Barre Syndrome) that started with tingling of toes and fingers and then went on to more serious conditions but was treated and I survived. I now have PMR and this treatment is different so yours could well be the PMR. I don't wish to scare you but well worth speaking to your Doctor especially if you get other symptoms.

[JohnnyQ50 in reply to Hidden]

Thanks for your reply Dot, I think I will see my Doctor again before I start another taper, generally I haven’t had a bad run with pred so far, just the tingling and occasional night cramps.

[Suet3942 in reply to Hidden]

Goodness you poor thing. My cousin had that and she was really ill. I’m intensive care for 2 weeks. Never completely revpcovered,but has good quality of life.

[Hidden in reply to Suet3942]

I didn't go into all the detail of Guillan Barre Syndrome in my case but yes it is very serious. I just stopped short of Intensive Care but was on a drip on the ward for 2 weeks as the lower part of my body was immobile and it was 4 months before I was able to walk again unaided I was lucky to have overcome this as it is a fairly rare disease and have been "normal" since until I got this PMR in March 2017 whether or not it was due to, but came on within weeks of having a replacement hip op. Coping very well and down to 2mg at present. Good luck D

[JohnnyQ50 in reply to Hidden]

Hi Dot,

I have made an appointment with my GP for Thursday and will mention GBS just in case, however looking at the information on the Drugs.com website tingling in the fingers is one of the recognised pred side effects but it won’t hurt to have GBS ruled out. You have done well to get down to just 2mg and I presume will be using the DSNS method to get to 0 this year.

Thanks for your reply and keep up the good work.

Cheers

JohnnyQ

[Hidden in reply to JohnnyQ50]

You have no need to worry about GBS Johnnie as after the start of the tingling things escalate quickly and you would be experiencing other symptoms well before now. After only 3 days I was in hospital waiting a diagnosis which resulted in a lumbar puncture and that is what determined it. I am going back quite a few years since my GBS, in fact it was November 1997 and I have been fit and well since then. D

[JohnnyQ50 in reply to Hidden]

Thanks for the update Dot, I am not ruling anything out and will mention it to my GP, I have made up a list of possibilities suggested by users on this forum, a tick box as it where, and will run it past my doc on Thursday, that’s what I pay him for😀

[JohnnyQ50 in reply to Hidden]

Hi Dot

Had my GP visit and he ruled out GBS, suspects it is either PMR or a pred side effect. As my blood tests came back normal he said to continue with my reduction so onwards with my cut, cut, cut, but thanks for your suggestion, better safe than sorry.

[Hidden in reply to JohnnyQ50]

Pleased to hear that you got your Doctor's appt and all is well with your bloods. As Dorset Lady says, you have reduced very quickly since October but if it works for you all the better. I am down to 2mg since the start in March 2017 but I am staying on 2mg for a little longer until this chest infection goes completely then trying 1mg. I think, as we know, everyone is different and we have to do what our bodies are telling us. Good luck and good night. D

[DorsetLady PMRGCAuk volunteer]

Hi JohnnyQ50,

Would say that 30mg to 13mg within 2 months is a very quick reduction - or did you mean Oct 2017?

If you meant Oct 2018 , then suggest it could be PMR not full controlled, and as the song goes on -

“It's written on the wind, it's everywhere I go” - the PMR that is!

If you can remember what dose you were at when the tingling came on it might be worth going back to just above it and see what happens.

Always have a soft spot for the Troggs, even though Reg went a bit weird with his crop circle theories later on - came from my small home town and danced to them before they were famous! And hubby went to school with most of them.

[Hidden in reply to DorsetLady]

Bet you were a "Wild Thing" too DL!!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Had my moments - you wanna know for sure!🤔😏😉🤦🏻‍♀️

[Hidden in reply to DorsetLady]

Good for you.

[Hollyseden in reply to DorsetLady]

🎶🎶🎤😊

[JohnnyQ50 in reply to DorsetLady]

Hi DL

Yes it was 2018 end of October that I was diagnosed with PMR although I think I have had it undiagnosed for 2 to 3 years until I woke up unable to do anything, Doc initially put me on30mg until I had blood tests which came in only marginally raised so cut me back to 20mg and have tapered to 13 just before Christmas. Due to start a 3mg taper over 12 weeks but will hold off until I speak to my Doctor about the tingles which have started since my last visit.

So you must be from Andover which I think is where the Trogg’s started. Love is all around is one of my favourite songs to play on the guitar along with “In my life” by the Beatles, I am originally from Liverpool so the lyrics to this song have a lot of meaning for me.

Thanks for your quick response.

JQ

[DorsetLady PMRGCAuk volunteer in reply to JohnnyQ50]

Yep I am from Andover originally- moved around with hubby (in Army) and settled in Dorset.

Good idea to stay put until you’ve had discussion and ruled out other things.

Keep us informed please.

[JohnnyQ50 in reply to DorsetLady]

Hi DL

I had my GP appointment today and seeing my bloods came back as normal he said to continue with my taper. He pointed out my Rheumy’s letter says to taper at 2mg/month not 1 as I had thought. I have additional tests done to check potassium and magnesium levels because I have been getting night cramps.

[DorsetLady PMRGCAuk volunteer in reply to JohnnyQ50]

Many on here take magnesium supplements- do help with cramps. Check salt levels as well.

[Mikb]

Ever since I read your post this morning I have been singing that song! Argh! Get this worm out of my head lol.

[JohnnyQ50 in reply to Mikb]

Hi Mikb

Could be worse songs to get stuck in your head, it could be a good anthem for this forum, “Love is all around”

😂😄

[Danda99]

I have been tapering from 20mg down to 5mg now over the course of a year in the gradual way recommended.

At around 8mg I had the pins & needles in hands and feet for about 6 weeks.

GP said to ask rheumy, he said to ask GP. Neither had any suggestions. I didn't feel like yet more Dr appointments at the time and it just disappeared eventually. I didn't notice it so much after a while. I just put it down to another side effect of pred.

Hopefully it will calm down and go away for you too.

All the best...

[JohnnyQ50 in reply to Danda99]

Thanks for your advice Danda, I suspect it is a pred side effect but have made an appointment with my GP on Thursday to check it out before starting my next taper.

You have done well to get down to 5mg over 12 months, I would be interested to know if you have had any other side effects, I am hoping to be off pref within 12 months.

[Danda99 in reply to JohnnyQ50]

Hi Johnny, I do feel that I have done quite well (would give myself pat on back but these treacherous arms still don't work like they should!)

My main Pred side effect is fatigue - probably adrenals struggling to catch up. I could sleep and sleep.

I am planning to stay on 5 until at least end of Feb as I think this next stage needs to be much slower. I was aiming for a year to be done with the steroid too - no harm in having an optimistic goal, but realistically I am going to err on the side of caution and prolong the taper til I get some energy back.

Good luck with the appointment - and with your own Pred schedule. Do let us know how you get on 👍

[misspops]

I have tingling in my toes, though not in the fingers. My toes are very uncomfortable at night, tingling, numbing, feeling hot and inflamed sometimes, but it also happens in the day too. I don't know what the problem is from, maybe pred, started at 20 mg last spring, for PMR, now down to 6.5 mg, and it is still happening. I thought, perhaps it was vit B12 deficiency, so started taking supplements for that, but no let up yet. I have started to wear really big shoes, so nothing is pressing on my toes. Would like to know what's up, but don't want to ask my Rheumy, as he will probably troll me through the lab to find something.

[JohnnyQ50 in reply to misspops]

Hi misspops

Thanks for replying to my post, my tingles are mainly in my hands and more noticeable at night so could be a different problem to yours, however I have arranged to see my GP on Thursday and will enter a post on what he diagnoses. I would get yours checked out if it persists, better safe than sorry🤞

[JohnnyQ50 in reply to misspops]

Hi misspops

I visited my GP yesterday and he said it could be either PMG or a pred side effect but seeing as my blood tests are normal I should continue with my taper. Hope I don’t get s flare.

[dodo1]

Hi, I have Peripheral Neurothapy which started with pins and needles in both my toes and the tips of my fingers, ordinary painkillers will not help. I take Pregabalin for it. It might be a thought to ask your Doctor about this as you can have a special test that will tell you. Hope you get it sorted.

[JohnnyQ50 in reply to dodo1]

Thanks for the advice dodo1, I will raise PN as a possibility during my GP visit on Thursday, I am hoping it’s just a pred side effect and will subside as I lower the pred

[JohnnyQ50 in reply to dodo1]

Hi dodo1

I visited my GP yesterday and he said he suspects it could be either PMG or a pred side effect and seeing as my blood tests are normal to continue with my taper.

[katiemills]

Hi johnny , I started on 30mgs of prednisone in October too and I'm only down to 20 mgs so well done you ! Could it be Carpel tunnel ? That can be a side effect of PMR and I had it quite badly before I started the prednisone ? I only get a bit of tingling now but I'm on a much higher dose of steroids than you ..... good luck with your GP .

[JohnnyQ50 in reply to katiemills]

Hi Katie

I will mention CT to my GP at my appointment on Thursday, I have had a few suggestions from the kind people on this forum and will run them all past my doc. to get them ruled out but I am fairly confident it is a pred side effect along with the slight night cramps that I get in which case I can continue with my taper. I visited my Rhumy about a week ago and was told to taper at the rate of 1mg per month and continue with my split dose of 2/3 at breakfast and 1/3 at dinner as this seems to be working for me🤞

It hasn’t slowed me down as yet and I have a golf booking straight after the doctors appointment😀

Thanks for your reply and I will post an update after my appointment.

Cheers

JohnnyQ

[JohnnyQ50 in reply to katiemills]

Hi Katie

Just to let you know that I visited my GP yesterday and I mentioned CT and a couple of other possibilities mentioned by this forum. He said he would consider CT tether than the others I had listed however as it I have tingling in my toes as well as my hands it is more likely either PMR or a pred side effect. As my blood tests came back normal he advised me to continue with my taper. Thanks for your suggestion, it’s best to raise all possibilities and have the GP discount them.

[katiemills in reply to JohnnyQ50]

Hi Johnny , thanks for letting me know . Good luck with the tapering !

[dodo1]

Hi again, hope it is just the pred, best of luck

[JohnnyQ50 in reply to dodo1]

Thanks DD, I will post an update after my GP visit on Thursday for the benefit of others on this forum, I have had several possibilities suggested by others on this forum and will try and have them all ruled out.

Thanks for your reply

JQ

[GerriMc]

I have pins and needles all the time now. I sometimes don’t even notice it.

[JohnnyQ50 in reply to GerriMc]

Thanks for your reply Gerri

I have made an appointment with my GP for Thursday to get to bottom of the tingles, you say you have pins and needles all the time, have you had the cause diagnosed?

[GerriMc in reply to JohnnyQ50]

No, I haven’t actually. I read somewhere, early on , that it was a side effect of Pred but also sometimes a symptom of PMR. I suppose I really should have asked the Doc about it. Would be interested to know what you find.

I’m due to see my Rheumy at end Feb and will ask him.

[JohnnyQ50 in reply to GerriMc]

Drugs.com lists “numbness or tingling in the arms or legs” as one of the common (hi lighted) side effects of pred. but I will keep you posted on what my GP comes up with.

[JohnnyQ50 in reply to GerriMc]

I had my GP visit yesterday, seems swelling can be a symptom of PMR and is also a side effect of pred. As my bloods are normal he said to continue with my taper as per Rheumy advised at 0.5mg/week and we will monitor for any pain, if I have too much discomfort I am to pop in and see him. Luckily he is only 5 minutes away.

[Ciar]

I’ve had tingling that started in fingers just before or around the time PMR started (2 to 3 years ago). Before prednisone for me, so it’s probably not a side effect. It spread to my toes then legs, sometimes arms, and torso. Sometimes I feel like it’s everywhere, and always somewhere. Fortunately it doesn’t hurt very often. I’ve been through the ringer with tests...all kinds of blood tests, and MRI of head and spine, nerve conduction studies. All they can say is carpal tunnel positive. No.other explanations or known causes. I think it’s related to the PMR somehow, but no one knows.

[JohnnyQ50 in reply to Ciar]

Thanks for your response Ciar, it’s hard to determine what is caused by PMR and what is a side effect of pred. I have my GP appointment in two days so hope he can establish the cause, I have a list of suggestions from others on this forum and will run it past him, hope he has lots of time😀

Cheers

JQ

[JohnnyQ50 in reply to Ciar]

Hi Ciar

Just had my GP appointment with my list of potential causes is hand. He has discounted them all and says it could be either PMR or a pred side effect, as my blood tests are normal to continue with my taper, he did a couple more bloods and I am to go back in two weeks, so onwards with the taper at 0.5mg/week

[Ciar in reply to JohnnyQ50]

There have been quite a few of us ho have this mysterious tingling with our PMR, some worse than others. For some it could just be Pred side effect. I posted about it several times as I was going through the tests. I can feel that my large nerves in my arms and legs are affected. They will jangle in many places if they get bumped slightly. I did go to a very good neurologist for my nerve conduction and EMG tests, and he did not diagnose me with peripheral neuropathy. It’s just a mystery unless more things go wrong to point to another diagnosis.