Feeling breathless

[Lanakay]

I had a chest X-ray and a stress test not very long ago so I am feeling like this is from tapering. I guess I just need some reassurance. I tapered from 7mg to 6mg a little over a week ago. At first everything was so good it surprised me. The last several days, however, I get these times, sometimes toward evening when I feel really breathless. I let it scare me and of course, that makes it worse. I felt pretty good all day and got a lot done around the house and now this. It seems like it’s always something. Just when I think I’m feeling a little better then wham! It’s something else. Not to mention my dentist has me brushing my teeth every time I eat or drink something.

[SheffieldJane]

Hi Lanakay, I got breathlessness as a troublesome symptom a few months back. Actually we were having a warm spell so it may have been almost a year ago. I put it down to Prednisalone side effects, I was on 10 mgs approx. I found that it helped to sleep propped on two pillows and have a bed side fan blowing over my face. I also used a saline nose spray because my nose felt as if the lining had thickened. Thankfully as I tapered, this symptom reduced, but I still get the blocked nose at times, never when I am upright. It can be quite panic inducing at the time. Presumably you’ve told your doctor?

[Lanakay in reply to SheffieldJane]

Thank you for your reply. I thought I had read other people went through these periods of breathlessness but tonight it was scaring me. Yes, my rheumatologist knows about it. I have a wedge on my bed for acid reflux and also a ceiling fan over my bed. Thanks again. I don’t know what I’d do without this group. You are all life savers for me.

[Hindags in reply to Lanakay]

I recently went through a period of episodes of breathlessness correlated with a pain between my shoulder blades, at the beginning of 6-5 taper. I was told that my muscles were in some kind a spasm and when those back muscles spasm they can affect the diaphragm, hence the breathlessness. I was given some exercises to do that helped and the breathlessness went away with the pain. I had been struggling to find exercises to do to keep myself mobile and hanging together properly, but almost everything I did made me feel worse the next day. So I'd cut way way back, and I think I just "froze up" without my realizing it. For me movement seems to be essential. And I always believed that I was primarily a sedentary beast.

I've also had something similar from upper GI irritation, which I might feel in my right shoulder blade. First it happened I was back from Mexico with a case of touristas. Have had it again from time to time. I go on a low residue, mostly liquid diet for a few days and it seems to help.

I wish I understood more of how the body really works, or not. I always seem to have to relearn old lessons when it comes to how I have to manage the body I have at this stage. And it seems to change every day.

For me, when I hit those late afternoon lows, weakness, wobblies, or what have you, keeping moving, even a little, like starting to prepare dinner, or cutting a few flowers from the garden, seems to work better than sitting or resting. I think of the gentle movement as informing my adrenals that they have to stay alert to their renewed status at the helm in lieu of Pred. Of course, if I were dizzy, I'd rest. Don't want falls at my age.

[Lanakay in reply to Hindags]

Thank you. Moving about always helps me. Good idea to keep the adrenals awake.

[SnazzyD]

Hello, does the breathlessness coincide with having eaten a meal rather than a snack? A full belly can make the diaphragm less able to expand downwards reducing your lung capacity a bit. Also, the acid from reflux can irritate the airway. It could also be the feel good do lots thing, payback.

Breathlessness isn’t funny to experience, I hope it sorts itself out soon.

[Pongo13]

Just wondering why the dentist has you brushing after every meal/drink - I use tooth resources at work and usually advice is that we don't brush immediately to avoid damaging enamel for a period of roughly 45 mins. However I am not an expert so merely curious!

Being breathless must be quite terrifying; not sure I'd cope with that. Bad enough with sinus prob one side. Sending all best wishes. X

[Hindags]

Considering the time of day this is occurring, I’m wondering if this is about your adrenals not quite up to the job just yet. Three pm is about the cortisol low of the day. You have likely hit the transition stage when your own adrenals have to start back up because the amount of Pred you are taking is not enough for your body.

There are lots of symptoms associated with low adrenal function/low cortisol levels.

I had some periods of low blood pressure. I had weak Wobblies. I had weakness without wobblies. I had a bit of nausea. Etc. The low cortisol symptoms are improving now but I still have a way to go. It took me about three months on a DSNS 38 day taper to get from 7 to 5.

[DorsetLady PMRGCAuk volunteer]

Hi,

‘I felt pretty good all day and got a lot done around the house” - maybe you’ve answered yourself, combine that with a taper and the level your adrenal glands need to start working.

Next taper try a slower plan, if not already. Easier on you and your illness!

Plus agree with Pongo13, you shouldn’t brush teeth directly after a meal. The food (particularly if acidic) has an affect on the enamel, and if you brush straight away you do more damage than good. Leave for 45-60mins.

[Lanakay]

I quit smoking two years ago and gained weight. Then came PMR and prednisone. I gained more weight. I have been pretty careful about how much I’m eating lately because I weigh more than I ever have in my life! Ughh. I think I went through a phase when I felt so bad that eating was my comfort. Now I’m paying. I was almost afraid to wake up this morning because I felt so awful last night. I was afraid of that starting up again. So far so good this morning. I don’t feel great but good enough. I’ve forgotten what feeling great feels like, as we all have. I’m going to take it slow this morning. I have gone on, haven’t i? Just needed to complain a bit. Thank you everybody.

[Hindags in reply to Lanakay]

Please don't be concerned about "going on", the more information you share, the more we learn and the more we might be able to support you.

Re weight gain. I know the low carb, no extra sugar diet isn't for everyone, but it really was a miracle for me. I didn't watch portions so much as what I was eating. So I didn't have many cravings.

I'm struggling a bit more lately as I've been in more of a down mood due to tapering, I believe, and tending to snack more.....Have gotten back on track this week by eliminating pistachios. I had told myself they were ok. But in reality I can't control the amount I eat of pistachios. Can with Almonds which are a safer snack food for me on that basis.

Am having some thyroid testing tomorrow along with my periodic ESR/CRP tests. Haven't had such a prolonged period of down mood ever. I read here that Pred. can affect thyroid which can affect mood and energy levels etc. so I requested it.

[Lanakay in reply to Hindags]

Prednisone really affected my mood. I struggled with anxiety and depression. I finally resorted to getting some meds to get me through the rough spots. I was miserable. I’m much better now.

[Nikkigabi in reply to Lanakay]

How long after you quit smoking did you get hit with PMR. I smoked for a lot of years, quitting for a year here and there. I quit January 1 20018 and felt the first systems of PMR middle of February. I wondered if it could have been caused from the withdrawal and stress of quitting. I also had busy and stressful summer last year with selling our house and moving. I was all ready to enjoy retirement 😕

[piglette]

Hi Lanakay, there was a dentist on radio yesterday saying you should not clean your teeth immediately after drinking orange juice at it just rubs the acid into the tooth. The same thing may happen with other things too. He said the most important time to clean is at night and then some time during the day. Twice is enough.

[Sallydvs in reply to piglette]

I am a hygienist and I have never heard it was bad for your enamel to brush after a meal.!

I think it is best to rinse or brush after eating something acidic as the acid will break down the enamel and cause decay.

[PMRpro Ambassador in reply to Sallydvs]

"According to the Mayo Clinic, if you've consumed anything acidic, you should avoid brushing your teeth for at least 30 minutes. Foods containing citric acid, like oranges, grapefruits and lemons, weaken tooth enamel. Brushing too soon after eating them can damage the enamel in its weakened state."

I googled "when should you brush your teeth after food" and got a few dozen links all saysing the same thing. Some from dentists, some from toothpaste manufacturers, some from lifestyle sites and one mentioning research:

"Dr. Addy and a team of British researchers at the dental school in Bristol, showed that enamel erosion caused by orange juice increases the susceptibility of enamel to toothpaste abrasion. The acid softens the tooth surface. Dentin is even more susceptible to erosion from acid drinks and toothpaste abrasion. Even brushing without toothpaste after ingesting orange juice resulted in loss of enamel and dentin. These researchers conclude that brushing immediately after consuming acidic beverages should be avoided."

[Lanakay]

Thank you. I always brush in the morning and at night. My dentist thought there was something going on with my gums. Yippee! I need more stuff wrong with me !

[DianeA1 in reply to Lanakay]

Sorry you are breathless.

Regarding brushing, a dental hygenist told me it was good to dry brush gently to stimulate the gums, like at a time when you are just reading or watching TV.

Regarding feeling breathless, last week I had a spell of nauseousness and, plus, felt like I had to remember to breath. Very strange, I guess I was breathing too shallow. To help, I would inflate my lungs and hold for 4 seconds, breath out slowly for 4, breath in slowly for 4, over and over. Being more sedentary than I am used to, I try do that daily to exercise my lungs.

Feel better soon!!

[Hidden]

Hi Lanakay

I was really short of breath when l was up at 20mg, l had a chest X-ray, ECG & bloods, as my GP thought it was heart failure!

I found l couldn’t walk & talk as l was so puffed so had to do one or the other!

It vastly improved as l lowered my dose but l have a had a spell of it again when l was back at 8mg plus some weight gain! If l bend down l get breathless too!

It’s frightening & when l was up at 20mg & in the high teens many a night l thought l’d never see morning! I used to sleep on 3/4 pillows, l could never lay down!

So thinking of you, it’s time to leave the housework, relax a little & see how you go.

Best Wishes

Mrs N 💅🏼

[Tiny_Tim in reply to Hidden]

I have now ben on Pred for 14 months .Gradually tapering and now on 5 mg with some difficulty. I have experienced many of the symptoms described by others ..Pain, fatigue Dizziness and yes breathlessness. The latter was put down initially to PMR, however in March my breathlessness became acute. I eventually landed upn the acute energency clinic where I was diagnosed with Pulmonary embolism . This was a real shock as I did not have any sign of DVT, and there appears to be no reason for it happening .I am still being investigated for possible cause including an upcoming appointment in ENT to investigate nodule on my thyroid .

All this is very alarming but I am remaining positive and have for the last month been feeling a bit better. I have learned how to manage PMR more successfully. When aches and fatigue hit I know it is time to have a day of complete rest .

If your breathlessness gets worse keep asking for investigation .

Tiny- tim

[Hidden in reply to Tiny_Tim]

Gosh Tim that must have been a worry for you, have they put you on a blood thinner?

Rest is the only way & sometimes it prevents having to increase the Steroids.

I hope they get to the cause of the PE but glad they discovered it!

Best Wishes

Mrs N 💅🏼

[DianthusDoris in reply to Tiny_Tim]

I was very interested to read your comment. I don't add many comments, but I do read everyone else's and find the site very helpful. I had been on Pred for getting on for 18 months when I started to get breathless. It gradually got worse, to the extent that I could hardly move from my chair to the kitchen. Husband took me to GP, and I was sent home to pack a bag and immediately take a letter from her to Emergency at Hospital. I was immediately put on oxygen, given blood thinning injections and hospitalised for a week with a Pulmonary Embolism. I was sent home with blood thinning medication. I had not had any sign of DVT either, and when I asked the Medics what the cause was, they had no answer. I could only put it down to Prednisolone!

[Lanakay in reply to DianthusDoris]

How frightening for you! Are you ok now? I will be on the alert for such a thing. Thank you for that information. That darn prednisone has such bad side affects. It is terrible for those of us that have to take it.

[DianthusDoris in reply to Lanakay]

There has been damage to my lungs as a result, and I am still very breathless - in fact have another appointment at Respiratory Clinic next week. And since the Pulmonary Embolism have suffered several bad chest infections when it has been touch and go whether I should be admitted to hospital and put on oxygen again.

[Lanakay in reply to DianthusDoris]

I have an appointment with my rheumatologist in a few days and will definitely talk to him about this. I hope all goes well with you. Thank you so much for this information.

[Lanakay]

Thank you. I really think it has to do with tapering for me. I hope it goes away soon. Today has been better. 😻

[Rimmy]

Hi Lanakay

I know the feeling- most unpleasant and I used to attribute it to the illness itself as I (intermittently) had it before my diagnosis and taking Pred. The breathlessness still comes on and off and it seems to me to happen more often when I feel generally tired and have 'overdone' things and also when I taper - even a slow 0.5mg. I am currently on 15.5mg after almost 18 months 'with' PMR/GCA.

Hop you improve soon.

Best wishes

Rimmy

[HeronNS]

I too had these spells at about the same dose of pred as you are now on, or perhaps a bit lower. I felt sometimes like I couldn't get enough air. It was around the same time that I found my heart gave the impression it was skipping beats. I don't think it really was, but taking my pulse I could feel little gaps in the rhythm. I sprinkled a bit more salt on my morning eggs and this did seem to help, and eventually the problem went away. The salt thing, incidentally, was intuitive on my part; a couple of years later I've learned I probably was deficient in salt at the time. It's also the dosage where the adrenals really have to start working again and adequate salt (not an excessive amount) is necessary for adrenals and thyroid and other organs to function properly.