As some of you know I had a pulmonary embolism in January and recovered well except for dreadful reflux. I have had this problem for years but managed with careful diet and 10mg omeprazole daily. My 3 month check with specialist was fine.
Jumping to now I started feeling breathless when first wakening and then more so when talking etc so ended up in A&E again. Everything checked out fine, bloods, heart and lungs. I was referred back to doctor who has ordered breathing tests but with a month long wait.
Meanwhile, getting worse, I started to think that this could be linked to either Gerd (was treated for H. Pylori early March, then on 20mg omeprazole daily and felt great all round but it did not last) or a side effect of PMR or apixaban thrown in to meds.
I have recently dropped by 0.5mg to 6.5mg on slow taper. I have gone from full of energy to feeling tired and wiped out. Doctor increased omeprazole to 20mg twice daily and thus the reflux is just about managed. This will be followed up with an endoscopy.
I am seeing my doctor later today and wondered if anyone has anything to add re the breathless and PMR.
There is so much going on in my body it is difficult to know what might be causing what.
Many thanks. A
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Ebiker
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I had the symptom of breathlessness, a sort of feeling of oxygen starvation. It would come on for no reason, as if there was no air in the room. Eventually, after a series of cardiac tests an echocardiogram showed dilation in the ascending Aorta which is linked with my non- cranial GCA. This diagnosis did not become immediately apparent with other cardiology tests. The fatigue and malaise I am experiencing is worse than it has ever been since my PMR diagnosis 6+ years ago and GCA/LVV 2+ years ago.Interestingly I am also experiencing lower abdominal pain and digestive sensitivity . A colonoscopy was clear and small portions of a restrictive diet keeps it at bay. This is possibly unconnected, my theory is damage from long term steroid use and or Tocilizumab (because that seemed to trigger it). I am on 6 mgs of Pred only at present. Keep them looking. Good luck.
I also have to admit ( after being very anti due to possible side effects) Lansoprazole appears to help - one tab an hour before taking morning Pred. Previously I would experience sharp, right side, lower abdominal pain, once the coated Pred arrived there presumably.
Thanks Jane. Your input is always valuable and appreciated.I have a pulse oximeter I use since the p e and 99% oxygen with pulse rate in normal range, usually 67 / 72.
Btw forgot to mentio that I am also experiencing hot flushes after eating.
Yes, I have got one of those and it was always reassuringly in the normal range ( pulse oximeter). I have a blood pressure machine that is always raised in spite of 2 medications. I experience the occasional hot flush too, when the temperature changes. I wonder if that is to do with my Adrenal function which will be properly looked at by an Endocrinologist when I get down to 5 mgs Pred.
I think there is a point at which we all find a load of things catch up with us - and the relaxation of the Covid situation has resulted in precipitating "stuff". And it is rubbish - you have my sympathy!
It sounds a bit as if it is possible the H.Pylori hasn't been eradicated totally - have they considered that? Breathlessness CAN happen with apixaban - due to a low blood count as a result of unnoticed bleeding - are there any interactions between it and your other medications? Though that should have been seen when you went to A&E in the bloods they did. My husband was put on apixaban while already on a heart drug that reduces excretion of the apixaban, which means the level of apixaban in the blood rises. In his case it got to 10x what it should be - he bled!!! All it would have needed was to separate taking the tablets by a couple of hours but they appeared to not to know that.
And poor adrenal function can also result in breathlessness - you may have been already in the zone before this last reduction in pred, you are obviously in it now since you are experiencing fatigue and feel wiped out.
Being short of breath is scary - don't hesitate to call the emergency services if it gets any worse. The hospital needs to investigate it sooner if it does.
Hi PMR pro...if you recall it was yourself and others on this forum in January who alerted me with the breathless...red flag. I think the H Pylori has not been eradicated and requested a second test last week. It was negative. One can have a false negative apparently when on omeprazole. This is why the nurse practioner suggested an endoscopy. I will hopefully further that today when I see doc "face to face". I did wonder about apixiban as the dreadful reflux kicked in shortly after starting it. I can probably reduce it to half in another 7 weeks or so.
I am interested to read your comments re adrenal functioning and breathlessness. It would tie in with the timing of the drop etc.
My body generally is doing well on the drop...no muscle pain or problems with movement, sleeping well etc. Simply hot flushes after eating. So would you advise staying on 6.5mg and sitting it out.
I do remember - you did have me quite worried for a bit!
Anyone would think that apixaban was the only NOAC available, gastric problems are a KNOWN adverse effect with it!!! I am on Pradaxa (dabigatran) and it suits me fine - my only complaint would be that it comes as capsules and any capsules can give me mild heartburn if I am not very careful to swallow them with a lot of water.
If you are also started on omeprazole at the same time - it can also cause gastric problems so while you may have felt good initially maybe it got round to making its presence felt later?
The trouble with going back up on the pred is you will need to get through this barrier at some point - on the other hand, if it makes you feel better while you deal with the rest maybe it is a good idea?
Would prefer to stay on the 6.5mg and not go up as other routes will be followed up after my appt today. In your experience would there be a possible benefit in splitting my dose ... one half after evening meal and one after b/fast?
Don't know really - does the effect of the pred keep the symptoms at bay for the full 24 hours? That's really the main reason for splitting the dose although for some people splitting it may reduce the side effects because the blood level is lower but over longer.
Taking pred in the evening at this stage might delay the return of adrenal function - the trigger is a low level about midnight. It won't be as low if you take the pred in the evening.
Many thanks PMRpro. That is really helpful in understanding the finer points. I will leave it all be because I am not in any discomfort and I am finding the energy levels increase as the day goes on. Will update when I have doc's opinion and further tests...
Thanks Dad2Cue. I was invincible too....probably the fittest, livliest and most active 75+ year old in our dale. The specialist reckons I should get much of that back. Like yourself the apixiban is for life most likely. Take care of yourself. As doc says ..
I suggest you get your iron levels tested. Pred can cause anaemia which can cause breathlessness. I had to go to A&E as I was struggling to breath but Iron tablets and now back to normal.
Domperidone. Something about my stomache may not be clearing??? Try for 7 days.Have taken omeprazole for 3 years now and it was doing job fine until after PE so I think increased Gerd due to meds and the reflux causing congestion or inflammation in breathing passages! But they are just my thoughts. I probably won't continue with the domperidone. I think next step should be endoscopy. Funnily the tight chested breathless feeling was much better yesterdayas was the reflux.
Think not cardiac in origin as the heartburn only started after I took the new drug...only had it twice! However as all other symptoms are decreasing and I am beginning to feel normal again I do not want another drug thrown into my "digestion mix".
Sounds almost exactly like my experience Ebiker,save I also have GCA and am on 30mg pred unable to taper yet. 10months into this disease. Breathless improves but you being wiped out I get. I'm on apixaban as also had double PE Oct 2021. Like you fully recovered and also had reflux diagnosed. when in A&E for heart attack suspected . On Lanzaprole and upped from 15mg to 30mg. Inflammation in blood now so waiting on blood test end of month. I feel good from how I was 4 weeks ago. Bisoprolol and Ramipril to control of heartbeat and BP. Today is first day I feel right since flare and increased inflammation from 12 weeks ago so hoping to reduce soon if results positive.. Be patient. It seemsthis phase passes but it is very unpredictable.
Read your profile. Oh my goodness you have had a dreadful time.😕. I am healthy in comparison.I feel my recent drop and booster for covid contributed to some of my " not feeling good at all". Doc agreed. Now I am feeling much better I am inclined to not upset the apple cart with yet another drug.
Well as you already know GERDS can make you feel like your not breathing well. Have you got a way to checked your O2 stats when you're feeling like this? Also your pred is low enough that you could be going into adrenal insufficiency which can make you feel very tired and out of breath. It can also cause nausea.
Yes. I agree with you re adrenal insufficiency as have slow dropped by 0.5mg to 6.5mg. On that now for 3 weeks. I feel my body is adjustingGerd is getting less, as is the fatigue and hot flushes...almost gone and I have a pulse oximeter....98-99% with pb 67-72. Am not happy throwing in another drug particularly given what PMR pro says so I think next step is endoscopy. Thanks for your input.
Morning. I also had a large PE end of February 2022. Right lung totally blocked and small clots in the left. Had it also 10 years ago. Presently on Apixaban 5 mg twice a day. Hoping to go down to half that when I see the internal medicine doctor in June. I still have SOB if I overdo it. Walked 2 km yesterday and today feeling unwell. Might also be due to methotrexate side effect day. I’m on 6 mg of prednisone and I can’t even fathom tapering right now. Just don’t feel well enough to stress my body even more. To much fatigue and dizziness?low BP and CRP is about 24. Have a bit of Gerd but Pantoloc mostly keeps it at bay. I have no answers for you. Just thought to share a similar story. Hope you continue to improve. Good luck
Did not know that. Going to look it up. Also will discuss with the clot specialist doctor at her follow up . Just had a review with my rheumatologist and he didn’t say anything about that. Thanks for the heads up.
Hi, good to hear your experience. In fact I am feeling loads better and doing better than a week ago and in fact yesterday. I think my body is responding well to the drop and would be inclined to start another slow drop in a week or two.I hope you can get to the same please very soon.
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