Tingling Sensation

[Lynlea]

Just wondering if anyone has suffered from tingling sensation in face a couple of hours after taking prednisone. I have reduced from 17.5 to 15 on the 19th September but have struggled with extreme fatigue and a couple of daily headaches for the last ten days. I am having other ongoing problems acid reflux caused by steroids and upper back pain. I had a tooth extracted three weeks ago due to infection and have just had a nasal endoscopy which confirmed lots of acid reflux and red tissue.

Thanks in advance for all your advice.

[PMRpro Ambassador]

For a start - what are you doing about the reflux? An OTC PPI or famotidine would be a good start. Did your GP not offer them when you put on pred? They aren't needed for many patients but some do need something.

I did have some funny feelings some time after pred - but don't remember my face tingling.

[Lynlea in reply to PMRpro]

I was prescribed omeprazole when first prescribed prednisone, had side effects gp changed it to pantoprazole still felt I had side effects. I have spoken to rheumatologist who advised gp might be better with H2 blocker. I am now on 30mg lansoprazole, gp says they have to try all options before H2 blocker. The tingling sensation maybe associated with acid reflux it occurs after eating or drink and feels like my face and body is swelling. I have moonface to deal with as well but swelling more on the right side of face.

[PMRpro Ambassador in reply to Lynlea]

The GP is talking rubbish - isn't it amazing: when it suits them they MUST obey the consultant, if it doesn't fit their face, they'll talk their way out of it.

I don't know about the system in the UK - my rheumy always asks me if I need a script for anything. Actually, so do any other doctors. Not that my GP argues, I get what suits me.

[Lynlea in reply to PMRpro]

I did question why I was not being allowed H2 blocker when changed to pantoprazole. I was told nhs having supply issues with H2 blockers. Might be something to do with cost. I am seeing consultant again on Thursday so will discuss with her, got a long list for her, weak legs extreme fatigue, been in pain everyday since tapering from 30mg. Don’t hold up much hope on my last visit tolls I should be looking to going back to work on phased return. If only they could feel how we do.

[PMRpro Ambassador in reply to Lynlea]

Since ranitidine was withdrawn on contamination grounds a couple of years ago there probably is a shortage of the others - famotidine, cimetidine etc. The PPI could be contributing to your woes! But if a patient can't do well on a PPI there isn't much point wading through them all - and some of them are pretty pricey compared with omeprazole.

You could try your pharmacy and see if you can get an H2 blocker OTC just to see if it helps - and if you do stop a PPI don't do it suddenly but taper the dose over a few weeks unless you can replace it with something else. The shortages were 2 years ago - they have had plenty of time to sort that out!

[Lynlea in reply to PMRpro]

Thanks for your advice think it is to do with PPI. I did stop taking omeprazole for 4 days a couple of months ago and felt a lot better. Did try to get prescription for gastro resistant prednisone as rheumatologist give me one months prescription when I told her not taking omeprazole. GP not having any of it due to cost.

.

[PMRpro Ambassador in reply to Lynlea]

Fight that - the PPI costs too, adds to the prescription fee for the NHS, and adds another layer of adverse effects. It isn't as expensive as he thinks. At one point it cost MORE to put a patient on the PPI plus plain pred than just give e/c pred - no doubt that will have changed but even so ...

[Lynlea in reply to PMRpro]

I did try to advise this but told still need ppi when on gastro resistant prednisone

[PMRpro Ambassador in reply to Lynlea]

No you don't - the whole point is that the tablets pass through the stomach and are only broken down and absorbed after leaving the stomach into a different acidity environment. In fact - you shouldn't take acid inhibitors WITH e/c pred as that alters the pH in the stomach and messes up the purpose of the e/c coating.

I know they don't do lot of pharmacy in med school but some of them obviously slept through the lectures they did have ...

Just had a thought - is the tingling soon after taking the PPI too?

nature.com/articles/s41598-....

Neuro effects come with PPIs too. Have they checked your B12 levels? Low acidity in the stomach can affect that too.

[Lynlea in reply to PMRpro]

Had my bloods done last week B12 came back at 208 ng/L believe this is normal range.

Thanks for the link the tingling does come on after taking PPI 😀

[PMRpro Ambassador in reply to Lynlea]

It is - but borderline low:

"a normal level of vitamin B12 in your bloodstream is generally between 190 and 950 picograms per milliliter (pg/mL). Between 200 to 300 pg/mL is considered borderline and your doctor may do more testing. Below 200 pg/mL is low and more testing is needed."

[Lynlea in reply to PMRpro]

Thanks again I have GP appointment next week will speak to him again about blood results, PPI and gastro resistant prednisone 🙂

[BethCH]

I am on famotidine since December 22 having switched from lansoprozole then esomeprozole (not sure of spellings! ). There are no supply issues so far (in Kent). ED doc said famotidine is slightly less risky than the ‘ozoles’ I am on 3 x 20mg a day which controls it well BUT I restrict my eating. No chilli, nothing high in fat, no ice cream, chips, milk chocolate and no eating late. In fact, anything that is nice! Thank goodness for cheese, yoghurt and plain choc. I am on 17mg of pred having been diagnosed with GCA in Feb 22 but like you, getting breakthrough headaches and achy calves (magnesium helps me with this). I have found reducing difficult but as the experts on here say, it is not a race to the lowest dose of pred. My B12 levels were on the lowest point a few weeks ago, so doc put me on 2 tabs a day at my suggestion. It really helped with the fatigue so I now buy them OTC but just take 1 a day as I went to the opposite end of the ‘normal’ scale!

I hope my experience helps - I am not an expert nor have any medical background.

[PMRpro Ambassador in reply to BethCH]

Apparently doctors in the USA are starting to warn against PPIs because if the growing evidence for long term effects.

[BethCH in reply to PMRpro]

That’s interesting. I think PPI’s and H2 blockers have a place for short term use but GPs seem to use them as a catch all rather than suggesting changes to diet for some patients. Then you are stuck on them. The rebound symptoms are difficult if you try to wean off them. My journey with PPI’s weirdly started after my gall bladder was removed. I think my body could no longer process fats/spicy food. I tried to reduce but will now wait until life after pred!

[PMRpro Ambassador in reply to BethCH]

Quite - and there are a few people who need them longer term but they are limited nos. But it is an easy answer - like antidepressants

[Lynlea in reply to BethCH]

Thank you for your response will try magnesium as do have exactly the same symptoms. I seem to suffer muscle aches in my legs 1-2 hours after waking and scalp tenderness. My headaches come and go throughout the day. I will have to watch my diet, I have already cut out acidic and sweet food but do treat myself to chocolate now and again. I do miss my coffee and cake 🙂

[BethCH in reply to Lynlea]

it won’t be forever, maybe just til your tummy heals. I can have the occasional cake (no cream) and I have discovered vegan sorbet which is amazing as a treat (quite sweet). 70% plain choc is really nice. I find you get used to it after a while and the ‘palate’ changes, so you don’t crave sweet stuff.

I got the powder magnesium from Holland & Barrett, it lasts a while. I tend to use it after walks/gardening or when leg muscles ache rather than every day.

[Lynlea in reply to BethCH]

I never suffered from acid reflux before taking prednisone. I have been on PPI since beginning of June. I am going to discuss PPI with rheumatologist on Thursday and will now Google vegan sorbet. 😂

[PMRpro Ambassador in reply to Lynlea]

All sorbets SHOULD be vegan - they are made of water, fruit juice and sugar. Commercially made ones are possibly suspect - read the label,

You can make granita yourself - dead easy and you don't need an icrecream maker:

marthastewart.com/317164/gr...

This is the one I use:

marthastewart.com/336837/or...

I don't mess about squeezing the oranges, I buy an 800ml bottle of high quality fruit juice instead - or any other fruit flavour. Google will give you quantities for coffee, melon and so on.