The first time I was visited by this horrendously painful spasm was when I was on 50 mg of prednisone for GCA back in Feb. 2018. It really did feel like a heart attack. Pain started in my chest, radiated up the neck, into the jaw, and down the arm. In the emergency room, they cleared the heart and said it was fairly common to have these spasms from AA ( Fosamax )The ER doctor told me to stop taking them--which I was happy to comply with.
I'm 16 months out and down to 22.5/22 mg DSNS and had another one of these "jackhammer spasms" four days ago. It didn't last as long (25 minutes)as the first one in '18; thankfully, this one lasted about a minute.
I'm wondering if this happened because I'd decided to skip my Prilosec for three days. The spasm came on day four. I wanted a break from the extra edema in my face and trunk from the Prilosec. I wanted to feel a bit better for just a few days.
What do you think, and have any of you experienced these spasms? Tell me everything.
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Blurry62
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They really are frightening. My husband called an ambulance when I had my first one exactly as you describe. My heart was tested in hospital where the paramedics insisted I go, even though the pain had practically gone. I was only on Prednisalone. Somewhere around 15 mgs. I have had milder ones since and feel less panicked by them. They seem to respond to over the counter indigestion remedies and sips of cold water. I am aware of chewing my food properly and avoiding spicy or very fibrous foods. Occasionally I feel as if my whole digestive tract is inflamed. This “side effect” of Prednisalone , which I believe it is, has thankfully got less and less now that I am on 4 mgs. It was the severe arm and jaw pain that confused me. I have had no tests other than on my heart.
Very occasionally now, more like a vague threat every few weeks. I also experience anal spasms - more frequently. I feel that it’s all linked. The latter are shocking too, and not since the fertility years. I hope no actual permanent damage has been done. I feel as if my throat is narrower, swallowing tablets is harder and I have a tendency to choke . I don’t take anything like omeprazole this made things worse. I take Pred with Greek yoghurt. PMR only for 3.5 yrs. The first Oesophageal spasm was over 2 years ago.
Sounds nasty Jane. I have trouble swallowing tablets and now take them with a small piece of banana which I find lubricates the way and is a more natural thing to be swallowing.
~SheffieldJane - when you experience the painful anal spasms go into a squat position. I have IBS which is under control but link my experience with anal spasms to this pesky issue when bowel playing up.
I sip warm water for the esophageal spasm which has woken me out of sleep during night. Unpleasant indeed + certainly agree that it mimic's that of heart problems~
I am so pleased that you have posted this as I too have had these spasms but didn’t know they had a name. Exactly the same symptoms - deep right sided pain which travels up my neck and into jaw - lasting about 20mins. Started when I was on 15mg three years ago and I ended up in A&E where they found normal heart etc but didn’t give me a diagnosis. I have had them intermittently since then and they seem to coincide with dropping pred. Much less so now down to 3mg.
I have suffered from bouts of this pain on odd occasions throughout my adult life. A horrible crushing sensation, so I wasn’t concerned about it being a heart attack when they started happening quite frequently on the higher doses of pred. The pain was unbearable though and one attack lasted 5 hours!!
I asked my GP to prescribe gastro resistant pred, which he did without comment and I haven’t had an attack since then. I still get uncomfortable sensations around my breastbone and when this happens, I take a Ranitidine and 2 teaspoons of Gaviscon Advance and it goes almost instantly.
Interestingly, when I told the consultant at the eye clinic that I was now taking gastro resistant pred his reaction was “No, they don’t work as well as uncoated prednisolone”! So maybe doctor’s reluctance to prescribe it is not always just a cost cutting exercise?
Probably misreading of a study done in enteric coated pred being used for inflammatory bowel disease where it didn't work as well as they thought - probably because the absorption lower down the gut was affected by the inflammation itself. This conclusion was the basis for the edit it shouldn't be used as plain pred plus a PPI was as effective. That isn't the point though - the PPI adds another layer of side effects and since then the costs have balanced out as the price of plain was increased by the manufacturers in response so there is less difference in price, down to a few pence.
And the proof of the pudding is in the eating: if enteric coated works well for YOU, they can't use that argument.
Just a little rant here. Why are we unable to get enteric coated prednisone here in the states?? I believe I would be able to ditch the omeprazole, which I HATE taking, due to lower GI issues which for me are severe. Also long term risk to kidneys and dementia. What is wrong with our health care system over here? Corporate takeover, greed and broken government. Sorry, I’m just so angry about this.
Can you get Zantac/ranitidine? Does the same thing as a PPI but with different side effects and works for most people - it is the forerunner of the PPIs which claim to be fantastic but are little better and also don;t work for everyone.
It is your purchasing system probably. Each insurer is a small force when negotiating so can't get great deals. The NHS does have a lot of clout because of the quantities they buy. The Lodotra/Rayos form of prednisone is available in Europe at about 27 euros for 30 tablets. in the USA the price is in thousands of dollars!
And loads of things are given to patients with no insurance to pay for new things - and that must be subsidised by those who DO pay - and that is a bit different from people paying a standard tax for healthcare whether they are ill or not which is how state funded healthcare works.
When I tried ranitadine, I got very weepy and sick to my stomach. I'm wondering if it could be that I still had Prilosec in my blood stream; not a good pairing?
Don't know - but different drugs have different effects for different people. I've used ranitidine briefly and had no problem at all. I've been interested in the list of drugs PPIs have an interaction with - feeling a bit touchy about that at present!!! Always check yourself seems to be the watchword!!!!
I know this is an old post but I have a nutcracker esophagus . The spasms last continuously for months if I eat certain foods. They cause my esophagus to swell and make me short of breath. They cause cardioesophageal spasms. They prescribed 10 mg of desipramine and it is like a miracle in a few days the pain stops . I thought it might help someone .
Thank you! I'm doing well for now- but still get one once or twice a month. Really warm water and peppermint helps mine if I jump right at it. I'm glad someone has addressed the heart aspect of these spasms. Thx
Haven’t tried Ranitidine, but was taking Famotidine for most of my PMR months. Over the past 6 months it gradually stopped working and I had to go back to omeprazole. I assumed that since ranitidine is in the same group it wouldn’t work.
Last time I checked, Rayos was $2750 for a 30 supply of 1mg tablets. Crazy stupid!
I used to get this occasionally long before GCA and 40 mg of prednisolone. At the higher doses I took 20mg of omeprazole as instructed, only as time went by did I question this and GP said reduce to 10mg, although she continued to prescribe 20mg on repeat. I have been OK on 10 for the last 18 months or so but they have returned recently, odd as I have managed to reduce to 9mg of prednisolone and counting, albeit with a steroid sparer. I have increased my dose of pregabalin to 300mg recently and changed to slow release tramadol 400mg a day, so maybe these aren't helping. I discusses this with the GP last week and she agreed with my scheme to increase go 20mg for a few days and then go back to 10, which has worked so far.
These spasms are really painful and as they happen at meal times tend to have an audience!!
I wonder if it is one of the cumulative effects of Pred? Continually taking a caustic substance. I haven’t read about it anywhere, I am just careful what I eat and plod on.
This may or may not be relevant to you, but it might be of interest to somebody so I'll go ahead. I had several incidents exactly as you describe some 15 years ago - both crippling and terrifying. I had a cardiogram which showed my heart was strong and healthy. I had a strong instinct that my problem was coffee which I loved and drank copiously, so I didn't want to face up to it. However I didn't hand in the prescription that the doctor gave me, but just went cold turkey on coffee from that moment. I thought it would be terrible but in fact it was never as difficult as I anticipated, and it was better than a lifetime swigging Gaviscon. I haven't had a cup of coffee since, and the only time I have experienced anything like it was after taking a dose of Allendronic Acid (bisphosphonate), which I was prescribed when I was first diagnosed with GCA and PMR. I very occasionally get a longing for a cup of coffee, usually when I pass a coffee bar and somebody opens the door and lets out the lovely odour. As good quality coffee is so expensive these days, I comfort myself by thinking of all the money I've saved over the years...
Thanks. This is great info. I don't know that I have food trigger. However....I noticed some discomfort when sipping hot herbal tea. I did read peppermint is supposed to sooth the smooth muscles in the throat and would be helpful with spasms. I let the tea cool down and think it helped. I think the acid from the pred and acid from the coffee combined being too, much makes sense.
Yes, had exactly the same the first time 1hour after taking alendronic acid, the second time the next week -worse-and the third week was admitted to AandE with suspected heart problems. Non specific abdominal pain was diagnosed!! Both my daughter (aGP) and my own GP stopped the alendronic acid and said it was oesophogial spasm, it took time to settle but that was in February and have had no trouble since about May. Are you on Alendronic Acid or similar. Rheumatologist in June said I must not have this again.
No. I am stearing clear of it. I drink a whole lot of almond milk (30 calories a cup) ....also take vit D ....My rheumatologist #1 has tried to get me take it again. The other two docotors have not.
Hello. I had this problem with AA and was admitted to hospital with suspected heart probs. My GP changed it to Risendronate and insisted I take it, even though I do not like the side effects of long term usage. I stopped taking it a month ago, preferring now to my pro-biotic intake with supplements and yoghurt. My sister who is 84 has had pmr as long as me( nearly 4 years). She lives in another country but we both contracted it at the same time! She never takes AA or R but just plenty of good dairy and plenty of good fish oil, with no problems. She also never takes Omeprazole and has no stomach upsets, in spite of having a stomach ulcer in her past!
HAve you had a dexa scan. I have recently and have osteoporosis so am waiting appointment to see consultant. Daughter and doctor think I may be given an injection every 6months. What probiotic supplements are you on. I was diagnosed with PMR in January. Started on 30Mg prednisolone and came down to 8, then back to 15. Now on 9 for a month again and hoping to go to 8 on Thursday. I felt very bad for first 2weeks on 9 but good again now so not looking forward to the change
I have had them for years, unrelated to PMR or Pred etc. Eventually described it to my GP who sent me to Rapid Response heart unit for all the tests including treadmill, 24h heart monitor, which showed heart all OK. Wife found the answer on Dr Google, nobody medical has ever suggested O Spasms. Now convinced that’s what it is so stopped worrying. They happen totally at random, now every few months, sitting, standing, walking, even wake me up. I find drinking water as cold as possible stops it quickly, feels like a hard lump is moving. Still to convince my sister she hasn't had a heart attack, she has been tested too. My mother said “oh I’ve had that but never worried”. It really is like the description of a heart attack, the web info we found said just that. I suppose now the trouble is recognising a real one....
It could well be linked to you stopping the other drug , the timing that it has occurred fits in with the withdrawal in your system.
I suppose the only way you test it is to return to the drug you gave up.
When we have alot of issues and alot of medications it is all trial and error , and weighing up the pros and cons of having one side effect or another.
To you which is worse , which causes you the most difficulty or stress , that's the benchmark for your decisions.
Good luck and I hope you don't get this too often , it's horrible wherever it hits you.
The only time I have had oesophagal pain and discomfort was for a brief period at the beginning of my PMR when I was taking Fosamax (biphosphonate) which I stopped taking straight away. These were never spasms though.
I've had them pre PMR and pred for some years and can trace them back to eating a dry baguette with no fluids. I find a drink of water usually clears it.
I have had exactly the same experience. 3 months after starting prednisone, I got fed up with omeprazole side effects in my lower GI tract and tried to reduce it. I wound up with the spasms in the emergency room...
Back to omeprazole with side effects and long term risk.
Ya...this is a dance with the devil all round isn't it?
I started opening my capsules and taking half its contents with lots of water to wash all the tiny beads down....Some may think this is ill-advised, but It's seemigly effective for me and with less medication.
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