Another GCA related question.

[Primarose]

A week or so before I was rushed into A & E my tongue went black. When I asked about it no one could give me a reason.

Anyone know if there is a connection with a black tongue and GCA??

[PMRpro Ambassador]

Where did it go black? Top surface or underneath?

[Primarose in reply to PMRpro]

The whole tongue was black but darker underneath.

[PMRpro Ambassador in reply to Primarose]

It's difficult to say without seeing what it looked like but it COULD have been impaired blood flow to the tongue being caused by GCA affecting those arteries.

ncbi.nlm.nih.gov/pmc/articl...

Though there is a condition called "black hairy tongue"

mayoclinic.org/diseases-con...

and it may have been coincidental.

[Primarose in reply to PMRpro]

Thanks for the links PMRpro, it was definitely not the hairy tongue. I could hardly speak at the time and only manage liquids so maybe it *was* the GCA. I did have a look on the net but couldn't' find anything, thanks for research.

It resolved quite quickly after taking the high does preds.

[PMRpro Ambassador in reply to Primarose]

Reduction of blood flow to the tongue is not unusual in GCA and can get as far as necrosis, which does darken the colour of the underside of the tongue a lot. Never heard of the top being black as well though.

[Angiejnz]

Stop licking the road 🤣 On a more serious note, how absolutely scary was that?

[Primarose in reply to Angiejnz]

<ROFL> I should have poked me tongue out at the medics and scared em off!!

[Angiejnz in reply to Primarose]

They'd take away your liquorice supplies and black jack's. Keep your supplies secure.🍬🍠🍭

[PMRpro Ambassador in reply to Angiejnz]

Not to be mixed with pred you know!

[Primarose in reply to PMRpro]

They warn you not to eat liquorice but don't tell you why!

[PMRpro Ambassador in reply to Primarose]

patient.info/forums/discuss...

nhs.uk/conditions/steroid-t...

says "Don't eat liquorice while taking prednisolone, however, as this can increase the amount of the medicine in your body."

and under interactions webmd.com/vitamins/ai/ingre...

says "Some medications for inflammation can decrease potassium in the body. Licorice might also decrease potassium in the body. Taking licorice along with some medications for inflammation might decrease potassium in the body too much.<br /><br /> Some medications for inflammation include dexamethasone (Decadron), hydrocortisone (Cortef), methylprednisolone (Medrol), prednisone (Deltasone), and others."

[Primarose in reply to PMRpro]

Thank you.

[Kcartney103 in reply to PMRpro]

A few weeks ago I was just sitting in a chair when I lost consciousness. Diagnosis, low potassium. The weather was very hot and humid, DR thought I could have been a little dehydrated as well. I am down to 4mg Pred and have been on for 2+ years.

[Kcartney103 in reply to Kcartney103]

P.S. I don't even like licorice 😜

[PMRpro Ambassador in reply to Kcartney103]

Out of interest - how low was your potassium?

[Kcartney103 in reply to PMRpro]

3 - normal range (according to the report) 3.5-5

[PMRpro Ambassador in reply to Kcartney103]

Suppose it must have been the whole scenario. Just like OH this week - jet lag, probably dehydrated, low potassium (2.38) and then he took a sleeping pill by mistake instead of his other medication. I have to say - he hasn't had a lot of sympathy from me! Still a bit weak and wobbly - but fine.

[Chihuahua1 in reply to PMRpro]

I was never told this, which is a bit worrying, because I love liquorice and I'm also on Furosemide to reduce odema in the legs and lower BP, which can cause a decrease in the body's potassium levels.

[piglette in reply to Chihuahua1]

I have odema in my legs and feet but was told that I could not take a diuretic such as Furosemide as I was on steroids.

[Chihuahua1 in reply to piglette]

I was on furosemide when I was put on steroids and they even increased the dose when I was in the middle of my steroid treatment. It makes you wonder if they know what they are doing sometimes.

On the same topic I have just found this while looking up why on line:

Interactions between your drugs

Moderate

furosemide prednisone

Applies to:Lasix (furosemide) and prednisone

Before using predniSONE, tell your doctor if you also use furosemide. You may need a dose adjustment or special tests in order to safely take both medications together. This combination may cause muscle pains or cramps, loss of appetite, weakness, dizziness, or confusion. If you take both medications together, tell your doctor if you have any of these symptoms. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

Apparently this combination also increases the loss of potassium. It does account for the cramps I suddenly started experiencing, having never had cramp before, but when I told the doctor he never said or did anything about it

[Primarose in reply to Chihuahua1]

It really is worrying, they prescribe these drugs without even looking into possible reactions with other medicines.

We have to do that.

My doctor wanted me to take Clopidogrel instead of aspirin but that can have a reaction with pred. It also states that a blood test should done before taking this drug as it isn't always suitable for some folk.

Clopidogrel and pred came up as "Amber" warning.

[PMRpro Ambassador in reply to Chihuahua1]

Special tests my foot - check the electrolytes over few weeks ...

OH was in hospital because of fluid on his lung about a month ago. They discharged him on a different setup of diuretics - one potassium sparing, one not. Absolutely no instructions from the ward doctors about monitoring (which I did comment on). After we arrived back from Seoul and I drove home he was taken ill late at night and I spent most of the rest of it in A&E. He was admitted, they sorted out an exceedingly low potassium level and ruled out other nasties (stroke was the first suspicion) and he is now recovering well. But you shouldn't need ICU trained doctors to get that right should you?

[Chihuahua1 in reply to PMRpro]

No you shouldn't need ICU trained doctors to get it right; nor should the patient be expected to know more than the doctors regarding med reactions and whether the meds they are already on are likely to react with any new prescription that might be introduced. After all the GP has access to your prescription list so he/she can see at a glance what you are taking and can check for any interactions in the Mims before prescribing them.

[piglette in reply to Chihuahua1]

Dear Chihuahua, my job included working with the pharmaceutical industry and I must admit over the years I am horrified at the lack of knowledge of doctors about drugs. One GP I had admitted she knew nothing about steroids.

[PMRpro Ambassador in reply to piglette]

I am currently reading Rachel Clarke's "Your life in my hands: A Junior Doctor's

story" and her comments about the "Pharmacology workshops" at her hospital tell it all. They were compulsory because the drug company paid lunch - to do a sales presentation on their medication. Which contained selected truths (or not). It is well known that this is a big push to doctors to use the last medication they were told about - not the one that is necessarily the right/best. I used to translate for a company doing market research during clinical trials - I found it quite horrifying.

[piglette in reply to PMRpro]

I used to help arrange the lunches and even did the food! I agree they are selected but on the other hand without some sort of training most doctors would know nothing about new drugs as a lot of them seem to have trouble actually reading.

[PMRpro Ambassador in reply to piglette]

Never mind writing...

[mega in reply to piglette]

I am the same as Chihuahua1. I have been on steroids for seven years for GCA and have swollen legs and feet and no-one has ever told me I should avoid liquorice. Licorice Allsorts? mmm. Not that I indulge very often.

I am currently taking 1-2 tablets of Furosemide a day.

Chihuahua1: I am absolutely convinced that most of them don't know what they are doing when it comes to 'unusual' conditions like GCA! I am an old cynic, though.

Best wishes to you both for a complete recovery soon.

[PMRpro Ambassador in reply to mega]

Have you ever been checked out for any cardiac problems? Including arrythmia? I develop swollen feet and ankles if I am having episodes of atrial fibrillation - once they are under control, no problems.

[mega in reply to PMRpro]

Thanks for your response PMRpro.

Yes, I have AF too and a 'non-sealing' right upper heart chamber (?). The only people who ever engage with that are the cardiologists who have prescribed Digoxin.

I had a good look through all the leaflets in my medications a few weeks ago and there are several saying I should not take X if I am also taking Y. I have been prescribed both X and Y. In my 80th year I have become pretty fatalistic about it all though.

I could write my own leaflet about the treatment I've received since contracting GCA !

All the best.

Mega

[PMRpro Ambassador in reply to mega]

I am on an antiarrythmic which the pharma company says shouldn't be used with sick sinus syndrome! Cardiologist insists its fine... Has been so far - but I do have some suspicions

[Chihuahua1 in reply to PMRpro]

I have had tests in the recent past and my heart is sound apparently; even though I was diagnosed with angina several years ago. The issues lasted about 3 weeks and then everything returned to normal, so I suspected it was a misdiagnosis given I have no other symptoms since. Apart from the pain and the fatigue that hits me from time to time I feel relatively well in myself I'm happy to say. I had an accident on Saturday at the local shopping centre. Being in a hurry to go nowhere fast I got the electric fold-up wheelchair out of the car boot with the help of the hoist. I unfolded it and settled myself in it. I locked the car and headed for the shop. All of a sudden my chair folds up and I'm dumped unceremoniously onto the car park.

I hadn't checked the frame of the chair was locked, which it wasn't. Not a mistake I will readily make a second time. Apart from a grazed elbow and a very sore shoulder I am ok. I couldn't get up myself and was more embarrassed than anything else. These 2 big strapping builders came and picked me up. Oh if only I was 20 years younger!..................................Well I can dream can't I?????

[PMRpro Ambassador in reply to Chihuahua1]

Oh dear - as long as no lasting damage was done!

[Chihuahua1 in reply to PMRpro]

I'll survive. Just as well I'm well padded and have strong bones. lol. It'll teach me to check things in future

[Chihuahua1 in reply to mega]

Best wishes to you too Mega.

[Telian in reply to PMRpro]

Didn't know that.....I do like it but don't eat it now.

[Primarose in reply to Angiejnz]

I could just fancy a few dozen black jack's!

[Angiejnz in reply to Primarose]

Mmmmmmmm

[Primarose in reply to Angiejnz]

Sorry, you can't have any black jack's, you'll get a black tongue!