er scare: yesterday I had my worst “episode” ever... - PMRGCAuk

PMRGCAuk

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er scare

Twopies profile image
22 Replies

yesterday I had my worst “episode” ever—after an uneventful start to my day, I suddenly felt like I was going to collapse. Couldn’t breathe, could barely talk, weak, too weak to stand. My husband took me to er where my bp was very high (of course); spent the day. Long story short: not one thing wrong, all blood tests perfect; they ran the cardiac tests and ekgs twice just to be sure; cortisol fine. (I’m a 5 1/2 mg pred). I was sent home. As I told them, Ive been to er before whenever I was exposed to something I am intolerant of, such as sulfites, salicylates, many different foods, etc., where it felt like I was having a stroke; however, this time was different—I felt sickest ever. My conclusion: I’ve taken ibuprofen the last few days for pain, it helps but is a salicylate (Tylenol burns my bladder). Also I’ve been using a lot of lidoderm pain patches, more frequently than usual, for myofascial migraines. Maybe it’s Pepcid tablets. Er’s recommendation: if it happens again, see my doc. (They were very kind and understanding though).

im a little better today—so far. I took 2 extra prednisone yesterday; what do you think I should do today? Still pretty sick and weak; if it is some kind of intolerance to something, it will take a few days to clear out. In the meantime, I’m sitting down resting all day. Thanks.

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22 Replies
PMRpro profile image
PMRproAmbassador

No, ibuprofen isn't a salicylate - but they are both NSAIDs, NonSteroidal AntiRheumatic Drugs. Possibly one of the fillers?

Twopies profile image
Twopies in reply toPMRpro

Probably. What about extra pred? This reaction will take a few days to wear off.

PMRpro profile image
PMRproAmbassador in reply toTwopies

I find it strange they aren't more interested, Do you think more pred helps?

Miserere profile image
Miserere in reply toPMRpro

Just a question - I thought ibuprofen shouldn't be taken with Pred?

PMRpro profile image
PMRproAmbassador in reply toMiserere

It isn't recommended to take ibuprofen or any NSAIDs with pred long term since each can cause stomach irritation and potentially bleeding and together the risk is higher, but many rheumies allow it when it is necessary. I take 600mg ibuprofen and 1g paracetamol a day as the only way to manage back pain - approved by both my rheumy and the pain clinic doctor. Best taken with food and possibly a PPI or other stomach protection.

Miserere profile image
Miserere in reply toPMRpro

Thanks, Pro. I ask because I have replacement knee surgery coming up and have been wondering what I can use for pain relief initially.

PMRpro profile image
PMRproAmbassador in reply toMiserere

I imagine they will start with opiods, which includes cocodamol - make sure you don't get constipated! Start some form of laxative BEFORE the problem arises. Maybe post and ask what others have been given in such a situation - few will see the question here.

Miserere profile image
Miserere in reply toPMRpro

Many thanks - I shall ask - I already tend to suffer with IBS-C so not a good start and allergic to paracetamol. Blast!

PMRpro profile image
PMRproAmbassador in reply toMiserere

Paracetamol is pretty useless anyway!!

Pameliza profile image
Pameliza in reply toPMRpro

Having also been salicylate intolerant, I know that ibuprofen has the same effect on COX enzymes. Taking ibuprofen when salicylate intolerant has caused me problems too.

Twopies profile image
Twopies in reply toPameliza

Oh thank you! Your reply makes me feel less whacko! I knew I reacted but never knew why.

Leafsong66 profile image
Leafsong66

That sounds super scary! Hoping that you can establish whats going on. This is a very confusing and complicated medical problem! I also had a similar but not as scary situation where i had no choice but to present to the ED in a distressed state. I tested out perfectly on paper but the sensation of going to collapse was horrendous. They kept me in overnight for occasional monitoring and apart from low blood pressure at times, I was fine. I was having really heavy periods of palpitations but in my muddled state only mentioned that late in the piece, so wasn't monitored for that. Sitting quietly and resting seems our new work!

Twopies profile image
Twopies in reply toLeafsong66

I’m a tad better today, thank you; all I can think is that it had to be some reaction to something…I’ve read that as we get older, the reactions get more severe so I’m going with that, I guess. In the hospital er my oxygen level was 100%, it is always 99-100. Yesterday I did up my pred by 2 mg, can’t say it helped, who knows? Today I’m back at 5 1/2, and will ditch the tapering program again, at least for a month? Still weak and sedentary for now. Sure wish they could figure out what’s wrong with us! Love your name, by the way!

HeronNS profile image
HeronNS

Ibuprofen is often recommended over aspirin but it does come with its own set of side effects, including more likelihood of stroke than aspirin (although allegedly somewhat safer regarding the stomach). Naproxen (Aleve) like aspirin is more prone to causing stomach problems, but lower risk of heart attack or stroke than ibuprofen. Choose your devil! They all make low dose pred look rather benign. :D

In any event, make sure you always have food with whatever painkiller you choose. I've found the yoghurt which protects us with pred is also helpful with my headache pill of choice, aspirin, and always force myself to have the full glass of water recommended also.

PMRpro profile image
PMRproAmbassador in reply toHeronNS

It does all depend on dose - and up to 1200mg/day of ibuprofen there is no increased risk of cardiovascular events.

HeronNS profile image
HeronNS in reply toPMRpro

I did take it when I had my dental surgery because of not wanting to increase risk of bleeding, but a few days later when using it for headache it seemed less effective than I usually find aspirin, although both are light years ahead of acetaminophen!

moonieboy9358 profile image
moonieboy9358

Ibuprofen is not a salicylate. It is proprionic acid. Although both drugs have many of the same benefits. The chemical structures are different. I hope you feel better soon

RT18 profile image
RT18

can they accurately test the cortisol when ur on 5.5mg? I’m more clued up now following my mums adrenal crisis. If u double up to say 10mg for 2 days and that gets rid of ur symptoms u know low cortisol is the culprit.

Twopies profile image
Twopies in reply toRT18

I don’t know—they said they tested. (Bloodwork). I felt so bad by dinner time the last 2 days that I did go up by 2 mg which seemed to help…eventually.

Moonriver65 profile image
Moonriver65 in reply toRT18

I am awaiting results of a cortisol test - am on 3mg pred after reducing to 2mg. Am praying this is the cause of my stomach problems over the last 6 weeks - unable to eat properly and have had dramatic weight loss plus general anxiety. I have had a ct scan on my pancreas, stomach and pelvis, so I’m very worried.

Leafsong66 profile image
Leafsong66

How are you today?

Twopies profile image
Twopies in reply toLeafsong66

Thank you! Still wobbly and off center, looks like it’s gonna take awhile, whatever it is. Still plugging away though!

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