Has anyone with GCA experienced teeth pain?

[pollymarierose]

I'm having an arterial biopsy this Monday, 4/22/19. On 70 mg of prednisone, the gca isn't under control and symptoms are piling up. This morning amongst all if the other symptoms (things are mostly on left side of head today) I am experiencing teeth (plural) pain on my left side. Is teeth pain a symptom too?

[DorsetLady PMRGCAuk volunteer]

Pre diagnosis I had “achy” teeth and had them checked -no problem. Have to say at 70mg your symptoms should be controlled - do you have enough to take extra if necessary pre biopsy.

However if your “symptoms” are one sided it may not be GCA - have you tried painkillers to see if they ease the pains - could well be tension.

[pollymarierose in reply to DorsetLady]

I usually have it on both sides. This mornings horrible headache might have been due to a 120 mile round trip to see doctor. I was not physically ready to be tousled in a car.

[DorsetLady PMRGCAuk volunteer in reply to pollymarierose]

More than likely!

Hope you soon feel better!

[SnazzyD]

Hello, my teeth were fine prior to diagnosis but a roughly few months in I would get bouts of teeth agony, especially with warm food rather than cold. Mostly on my worst GCA side but on the other as well. It has reduced with dose, but whether this is because my GCA as improved or it was Pred induced I don’t know.

[alvertta]

I have tooth sensitivity to cold since diagnosis of GCA in October 2018. I also grind my teeth so that makes them sore at times. Not major pain

[PMR2011]

Hi Pollymarierose, I had definite teeth sensitivity with GCA. Funny didn’t realize it at the time. Bought the toothpaste for sensitive teeth, then once GCA controlled voila, teeth all better!

[jinasc]

When did you start of the 70mg of Pred?

Longer than 5 days..................biopsy won't work .the biopsy does not always work anyway and the medical symptoms over rule anything else.

Do you live anywhere near Oxford?

[pollymarierose in reply to jinasc]

I started 3 days ago. I went from 60 to 70. My doctor told me that also but was concerned that at 70 mg and gca is still not under control.

[pollymarierose in reply to jinasc]

No, I live in US. The Pacific NW.

[sandrathecat in reply to jinasc]

This is true. I had a negative biopsy after starting pred a month before. Rheumy told me that having a biopsy after you start taking steroids is no good. So, I have GCA but the biopsy was negative and even the surgeon told me that a negative result does not mean that you don't have GCA. So why do they put us through the trauma of a biopsy?

[PMRpro Ambassador in reply to sandrathecat]

Because it is the only 100% accurate diagnosis that it is GCA and for the people who get a positive it does mean no-one can argue in the future. It is also a criterion for someone to be included in any research on GCA. And it is far more widely available than the ultrasound test which is equally good.

Studies have concluded that there may be positives even after up to 4 weeks of pred but since you can have negatives for all sorts of reasons even in patients who have not even had a single dose of pred it must be considered as unreliable!

[sandrathecat in reply to PMRpro]

Thanks very much for that info. I had been thinking that the biopsy was all for nothing. Best wishes.

[Hidden in reply to sandrathecat]

I was diagnosed with both, PMR & GCA 14 yrs ago plus other things b4. I’ve never had the biopsy. I’ve had DVTs over the yrs with Cellulitis & blood poisoning- & other probs with skeleton & muscles- I just said ‘if I didn’t know better, I’d say I’ve got a DVT in my neck’ - instantly I was given steroids & sent for bloods, which showed up hi inflammation. I’m on a low dose now, but often suffer v severe spasms & pain, but the ‘hump’ on the nape if my neck has reduced with the dose. Wish u luck mate.

[Hidden in reply to Hidden]

Re teeth: I’d only got a gold cap from a cracked tooth- but Never needed any other treatment- then I went on meds to harden my bones.. then to my dismay, slowly two back teeth came lose, rotted & fell out! 6 months ago I had the first of two infusions of a powerful Ned to harden my crumbling bones (I can’t eat meat, fish or poultry-I lack an amino acid that breaks down fat) within days my inner ears irritated & produced a small amount of wax- which I’d Never had before- now because the tiny bones in the inner ear could lose density. Ive also got my front teeth going black so, I’ve been advised Not to have the second jab. Steroids messed with my pancreas & gave me diabetes too. So be aware of changes to what is usual for your own body.

[pollymarierose in reply to Hidden]

I will. As I try to get used to pmr and gca AND prednisone, it's a bit hard to tell what's what. I'll get there with help and guidance. Thank you!

[Hidden in reply to Hidden]

Could i ask if that was something like alendronic acid you took for bones?🌻

[Hidden in reply to Hidden]

Hi, yes they were the tablets I took. I couldn’t bear the side effects on top of many other meds, so took them for about 2 yrs instead of the recommended 3/4 yrs. The injection / infusion jab, is based on similar but far stronger meds & only offered when the risk of a spontaneous fractures is inevitable. I have carers, but thought I’d play ‘safe’ because of the falls I’d had, - not wanting to be found in the garden or floor after a cold night- It has been used for certain cancers, but professed to ‘harden my eroding skeleton/pelvis/spine/femur. (I’d been tapering steroids over the 14 years I’ve been on them, & assume the combination didn’t work for me personally) We are warned about the huge list of possible side effects, & the short list of positives but never about teeth & jaw. apparently, by ‘hardening’ the bones, they will now ‘snap’ rather than fracture! So, I’m back to square one. My headstone will read, ‘It was the cure that killed her!’ My advise is, listen to the nurse, weigh things up & ask questions. The alternative for me was an even stronger version of the meds, but in an I.V infusion once a year, rather than the twice a year intermuscular jab/s. Of which I’ve had one.

[Hidden in reply to Hidden]

I am so sorry you suffered from that horrid drug. I took it 4 times and hated it. I worry about my sister who has another immune condition and has been taking it for a few years. I keep telling her she should have a holiday from it. But she does what the dr tells her. Her teeth have started hurting but she is under stress. Whether to take these bone meds is discussed a lot. My dexa scan was fine in 2017 and Rheumy booking me in again. I hope you don't hurt anything and that the cure doesnt kill you. Thanks for replying. 🌻

[Hidden in reply to Hidden]

There are side effects & concerns with all modern meds, mainly the chemicals ones. The advantages sometimes outweigh the negatives, so we go that path when the alternative route is less effective or more problematic. As humans, with auto immune diseases, the more we push ourselves the worse we feel, the stiffness slows us down, muscles complain by spasming, then the mood begins to drop when chores. become a challenge, then spikes in the pain brings that to a closed circle, so we go in circles, hoping for a break or an exit, or a small miracle so we live in hope, that we will find something that suites us as individuals, & we learn to slow, to pace better, to make the most of the better days & curse the worst. But without hope, we give up. With renewed hope new meds are on trial, so one day, some of us may hit the magic combination of behaviour & meds that shores up the pain & discomfort & side effects to a manageable level. God bless us all.

[Hidden in reply to Hidden]

Indeed. That sums it up. We have to have some hope when consumed by the body and getting it going without breaking it!🌻😁

[PMRnewbie2017]

Hi. Dental sensitivity is a recognised side effect of steroids. The effects should reduce as the dose decreases.

My teeth became very sensitive to cold. Not just drinks or food but if I inhaled cold air they would hurt.

[PMRpro Ambassador in reply to PMRnewbie2017]

And so is PMR. I had sensitive teeth that coincided with the start of PMR. It definitely wasn't due to pred - I wasn't on it! Sensodyne toothpaste was the othly thing that helped, no other brands did anything.

[Meggsy in reply to PMRpro]

Yes, Sensodyne was the solution for me also.

[Hidden in reply to Meggsy]

Ditto. A version without Sodium Lauryl Sulfate is good as it stops the mouth from drying. On high doses of pred the blood sugar spikes, this can dry your mouth as can other meds. SLS free toothpaste does not dry your mouth. The toothpaste us sloppier and doesnt foam as much. Dry mouth encourages plaque, if i have dry mouth my teeth hurt more.

[Janstr]

My teeth were so sore that I couldn't eat; this seemed to get a bit better towards the middle of the day

[Hidden in reply to Janstr]

Once the pred kicked in fully?

[Janstr in reply to Hidden]

Within 24 hours of the wonder drug, the pain went

[skb4skb]

Interesting teeth question.. contacts between my teeth have become tighter, this I know from my daily flossing. I have contributed this to having a large moon face and the added fat cell deposits on neck, collar bone etc possibly my gums have increased in size also??? . Also, each tooth that has a restoration is more sensitive to cold. Unusual taste in my mouth and tingling of my lower lip and chin area. Crazy how much GCA and medications have changed me! I consider myself in a medical twilight zone!

[pollymarierose in reply to skb4skb]

I understand that feeling! I have a metallic(?) taste in my mouth leaning towards downright awful. I can barely taste food, but that's okay because I have no apetite. I've gained 6 pounds in 2 weeks even with a low carb, low calorie diet. So, the real adventure begins!

[Hidden in reply to skb4skb]

Just aging or have one tooth out can shift teeth a bit. Sinus infection definitely increase tooth sensitivity for me.

[OutdoorsyGal]

Have you ruled out sinus infection? That can make teeth ache.

[pollymarierose in reply to OutdoorsyGal]

My teeth only ached yesterday, but I'd never felt anything like it. I'm glad they stopped. With the jaw pain and eye pain, it was no fun!

[Hidden in reply to pollymarierose]

Your head is obviously making you suffer! Hope your dosage gets sorted and glad teeth more normal. Perhaps the 70mg is finally starting to kick in a bit?

[skb4skb]

Sorry, back to your original question. Originally before my diagnosis of GCA. every part of my head area was affected. Pain in the jaw, ears, neck, TMJ, temples, teeth, unable to open my mouth, actually had veins protruding at hairline above my eyes. I considered my symptoms classic GCA textbook, all came on within a couple of days. Fortunately was referred for the sed rate blood draw which was really high, place on prednisone and within days had a biopsy on both sides that was positive. Referral to a Rheumatologist and on the GCA/medication road...the original pain was eliminated shortly after steroids. Hope you gain an accurate diagnosis and successful treatment with your biopsy.

[Nagswoman]

Oh yes. Random teeth. Comes and goes, even now, 3 years after diagnosis.