This is a very odd pain which has happened twice in the last few weeks , the second time this morning . Th
I was diagnosed with GCA Nov 2018 and PMR a year later . Now on Prednisolone 12 mgms, whenever Itry to reduc3 to 11.0 I get GCA symptoms . This pai is sudden, frightening and intense, starts in the upper chest shoulders, and settles in the jaw and lasts about 20 to 30 minutes. I sit down ,eventually make a cup of tea and the pain fades away.
I mentioned it to the GP when he rang as he does every 3 weeks. He says he thinks it must be the G C A .
These are very scary episodes . I wonder if anyone else experience them and if I’m doing the right thing( sit down, cup of tea)?
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Not sure he’s correct re GCA - jaw pain usually comes on when eating, and goes away when you stop chewing. Plus chest pain is not usually associated with cranial GCA.
I think further investigation needed, it could be associated with indigestion, but worse case scenario is cardiac issues (hopefully not) - and chest pains should always be taken seriously.
Are you on medication for anything other than GCA/PMR?
If it happens again please contact nhs direct or 999 at the time.
Thank you Dorset Lady. ; it sounds very much like a Sort of Cardiac event . Yes I’m on loads of stuff ,Amlodipine, Atoravastin, Bendrofluazide, pregabalin as well as the usual things to counteract the effects of Prednisolone.
Yes well it’s the easy option to assume it’s connected to whatever illness you might already have ...bit more ‘thinking outside the box’ would help sometimes.
Have you had a Ct scan of your chest, ab and pelvis ?
I do not have GCA or PMJ, but I was diagnosed with Large Vessel Vasculitis in November 2018. Same category of another “hurting disease” and treated medically more or less the same.
I take multiple meds as well, from amlopidine to tapering now prednisone from 60 mg (now at 3mg) and immunosuppressive drug Actemra (7 months)
What you are describing above has happened to me twice. In May.
This second time, a monthly taper from 4 to 3 pred this particular day.
Pain started and upper back and neck to my chest I thought I was having heart attack
This time I knew to take my blood pressure and it was skyhigh
Called my Rheum and she said to go to the ER right away.
She also, God bless her, called the ER and informed them of my condition so they were prepared for me and knew what to do.
Yes, this was during critical Covid times.
Petrifying.
Put on IV pain meds and IV BP reducing drugs.
I had an Aortic Dissection. Descending.
Thank Goodness it wasn’t going the other way.
I was in ICU for one night to get me under control and then stayed in the hospital for two more days
I am fine now but constantly concerned it may happen again.
Mostly it is treated with aggressive blood pressure medicine, at the same time some can, will elevate your BP.
Prednisone and Actemra may cause hypertension.
Sorry this is so long.
Medical management is tough, because so many things can contraindicate the other but yet, we need them to do the job.
And sadly, AD’s are often misdiagnosed and often fatal if not treated immediately.
So I’m suggesting go back to your doctor and demand more tests and start recording your blood pressure daily.
Yes, take Your blood pressure immediately at home.
Give yourself 5 minutes to do, breathe deeply as best you can, take 2-3 times -2 minutes apart. Take left , wait a good minute, take right, wait another minute or two and take left.
(I like Omron products or Call Your local pharmacist to recommend one)
If it it high, on all (3) reads, you must go to the ER.
Tell them your Inflammatory condition and meds.
(BTW the AAcid sounds lousy... Awful side effects)
Also, i always thought it was digestive as well, sounds like it is for others with some of their meds and makes sense, but it wasn’t the case for me.
Tell them you are concerned it could be cardiac, aortic dissection or heart attack.
They will take BP, Heart rate, blood work, ECG, cat scan et all.
It’s the best place for you to be if this should happen.
Jane, at the end of the day, I sincerely hope it’s not either of these things.
I noticed you mentioned you did not have gallstones, so....
it’s time to start ruling other things out if this keeps happening.
I was always hoping it was just simply the side effects of the high dose multiple meds I’ve been on at times.
Don’t get me wrong, I feel pretty good despite it all. 🤗
Inflammation causes pain and your BP to rise.
Yes, these meds do a number on all of us at times, and it can be so very scary. 🥵
But we all seem to bounce back 🙏🙏🙏
Two other useful items to have that you can download for free on the App Store is a heart rate monitor that will remind you to take it every day!, or a combination heart rate/pulse oximeter.
The heart rate is important because if it’s elevated, it means your heart is working/pumping too hard.
Which will probably mean your BP may be high.
Prednisone high dose and can do that to us.
Actemra also does this.
For example, for me my doctors don’t want to see HR go over 60 they want it in the 50s., or lower.
BP 120/70 or lower. Yikes. Although in the morning it always is, but in the afternoon and being mildly active it goes up.
You can Google doc what healthy ranges should be...
As in your BP, cholesterol, fasting blood glucose, BMI, and I like to add in, heart rate as well.
We are all monitored for these things with the poly pharmacy we are in.
Now, I digress... I repeat these measurements are at a RESTING rate (ie the 5 minutes to relax and breathe before you take test)
So quick, and easy to do.
Oxygen levels (Via pulse oximeter) are also good to know.
Mine are good, between 96-100.
Next time you’re at the doc’s, they take these measurements for you as well as your BP, ask them what exactly they mean and what your numbers are and if they’re good or not.
So much homework!
But knowledge truly helps with the anxiety of it all. 😉
Just a thought Jane. Are you having digestive problems, heartburn etc?
I experience Oesophageal Spasms occasionally, due I think, to the corrosive effects of Prednisalone on my gastrointestinal system. Without warning, I can feel as if I have swallowed a large pebble and it’s stuck. Pain can travel along my jaw as if it is being unzipped almost, I experience shoulder and arm pain and extreme anxiety. The first time it happened my husband was so alarmed that he called an ambulance. I had extensive heart checks and nothing was found. On low PMR doses of Pred this symptom disappeared. I have recently been diagnosed with GCA and am currently on 25 mgs of Pred and the symptom is back. It settles by keeping calm, sips of cold water, being propped upright and sometimes an over the counter indigestion remedy.
Do not discount GCA or heart problems, have these possibilities thoroughly checked out. It just might be another explanation. They are very alarming and like you I sit still feeling doomed, until it passes. I am not sure that GCA would behave like that. A heart attack might - especially in women. Let us know.
Ah, good to read that . I woke up at 3 am with pain in right ribs/back extending to jaw and an indigestion feeling. I thought it sounded like gallstone colic. It passed quickly with a homeopathic remedy. Maybe I'm not eating enough with my pred doses..
Thank you, Sheffield Jane. That’s just how I feel and I did wonder if it could be acute indigestion. The Alendronic Acid is very alarming stuff. I wish I could come off it but the rheumatologist said no.
The first episode about a month ago frightened me so much that I dialled 999 but cancelled it, but the feeling of doom stayed with me for about 15 to 20 mins. My dear girl(daughter) came ,made tea and gradually the feeling passed.
It sounds like some episodes ive had, the pain starts and like SJ said, like its being unzipped up my chest really, really severe, like my heart is going to come through my ears. In my case i find if i make myself belch as much as possible it helps the the pressure off and it doesnt last as long as in the beginning when i didnt do this. Drink a mint tea, something warm helps. Its very scary!! Of course make sure you rule out other issues with your doc. It leaves you feeling pretty wrecked.
The feeling of doom is a typical observation in cardiac events - so if it happens again please call 999 and tell them that. That should get a quick response and the paramedics carry an ECG machine so you would get a check far quicker and at the time it is happening. That is what my GP told me to do - many of these intermittent episodes are only found if they happen while you are under observation, leaving no signs behind until the next.
Jane, I've refused to to AA...but upped my calcium levels. Take D3 and K2 twice daily. Hopefully, after lock down for us on Pred is lifted I'll get a Dexa scan and see how my bone health is doing.
Hope you don't get another episode it must have been frightening.
I have had 2 Dexa scans, 2 years apart. They didn’t show any sign of Osteoporosis therefore I declined Alendronic Acid, due to the potentially serious side effects. Don’t be bullied!
Like SheffieldJane I also had intense sharp pain that I thought could be cardiac, and had it checked at emergency. It turned out to be esophageal spasm, also. You do need to find out because it could be serious, but try not to worry too much, as it could be relatively minor.
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