[Katharine]

Hello All,

I have a question about breathing!

Before starting treatment I frequently had episodes where I had enormous difficulty in getting "enough" air.

In general, I have a slight feeling of oppression in my chest but nothing serious on stethoscope examination. X-rays have shown a "spot" of bronchitis (which is very odd as I haven't had bronchitis since I was pregnant with my youngest in 2000). MY GP obviously doesn't consider this "spot" serious (and he is a good GP).
So, in short, examinations showed nothing serious.

The problem is that I am not doing so good on my last pred reduction. At first I just thought it was a patch and that things would blow over but I have been feeling gradually stiffer and sorer as well, of course, as tireder.

Now, added to that a couple of weeks back I started having the odd day where I felt I couldn't breathe. It is an awful feeling, really like you can't get air - you try and yawn to get air that way but it doesn't always work and it's actually quite frightening. In a mad attempt to get air, you then even get the reflex to want to be sick coming in somewhere. I'm being weird here, hope you can follow :hehe:

These attacks last a long time, sometimes a whole day, and are getting more frequent. Today it got so bad that as I was sitting trying to talk to my son's headmaster, I started shaking with it and feeling a little dizzy.

I don't know if anyone has experienced anything similar. I was thinking of calling my rheumy on Thursday (I know she's in the office then) as I am SUPPOSED to reduce my pred again next month. It seems that it might not be the best idea (I think some of these difficulties can come from myositis rather than lupus) and indeed think I may well need to go back up.

This happeneing has no link to being stressed. It just happens.

thanks for your insight,
Katharine

 

[BigSis]

Hi Katharine,
Sorry to hear this pred reduction isn't going so well.

I don't have any experience of what you are experiencing but perhaps you are right and it is a muscle thing.

I would contact your docs just in case it means halting your taper for a bit.

Gentle hug to you.
It is really scary when breathing feels difficult.

take very good care of yourself. I hope this is just a hiccup in your improvement.

 

[karen.w.]

Hi katharine

I'm sorry to hear you're not too good :sad:

I have had similar problems with my breathing for months now,I even started a thread on it before christmas.

I feel my breathing is far too shallow & sometimes it feels as if I have stopped breathing & I have to try & catch my breath.I feel quite numb with it too,especially my arms for some unknown reason.
I mentioned it to my rheumy but he wasn't too concerned just sent me for an ecg...however I am still the same,it hasn't improved & I do also wonder if it contributes to the headaches & dizziness I often experience.

katharine all I can advise is to speak to your rheumy..it could possibly be too soon to taper the pred or as you said it could be part of the myositis?

please let us know how you get on
I hope you feel better soon,take care
:hug: karen x

 

[julsie]

Katharine,
:there: sorry,it's a horrible feeling not being able to breathe properly.I get the same to varying degrees.Sometimes I am breathless going up the stairs ,but it is much worse when I bend over to do things.I feel like my lung capacity is reduced.I do sympathise with you,and hope you have a good rheumatologist who does some investigations to find out what is going on,
julsie

 

[Salopsally]

Hi Katherine,
I was wondering about my breathing too. Im tapering pred aswell. Mine doesnt seem as bad as yours but I think I am a lot better till I do anything. Then Im out of breath in no time and just a very short walk I cant get enough breath.
I dont think there is anything wrong with my lungs its not like I have any congestion on them or anything. Ive just been putting it down to another symptom of Lupus up till now. Just thought I was generally weak and worn out .
When I answer a phone call sometimes the caller says..Oooo have you been running? as Im out of breath. Ive just walked a few steps to pick up the phone.
When I show guests up the stairs I have trouble talking to them when I get to the top as Im then out of breath. Was thinking Id ask the doctor about this next time I go.
Difficult to know when to put something down the the general malaise of Lupus or get it investigated further.
Take care,
Luv Sal x

 

[LolaLola]

I am afraid I huff and puff a bit too. I am going to mention it next time I go to Tommies in early May.

Katharine, I am very disappointed that your good spell is over.
x Lola

I am on the taper too and it is not easy!

 

[greenhaggis]

Hi Katherine,

Sorry to hear that you are not doing well tapering off on the Pred. I have this same problem with breathing and had it before I was diagnosed with Lupus - not sure why!

My sister suffers with it to and so far has no dignoses of SLE, but did have an ECG today which did not show any abnormalities. Not convinced myself that ECG's are accurate anyway (have read that only 25% accurate) unless you have a very accute problem!

I would love to find out why too!

If you need the Pred to keep symptoms in control then perhaps it is too early to reduce again, or perhaps a smaller reduction is required. I would definately chat to GP before any further reductions!

Take care and lots of hugs, Lesley

 

[Katharine]

Well thanks everyone for such quick replies!

I will definitely be trying to phone the rheumy tomorrow as well as seeing my GP as this is really freaking me out. I've had these attacks before but they have never lasted a whole day and now I have abandoned trying to sleep as it seems even worse lying down.

It has nothing to do with actually being breathless. I have that all the time too but this is different as it happens when I'm resting just as much as if moving.

thanks all,
Katharine

 

[Karly1964]

I have the same thing, especially when I lay down to sleep it feels as if I cannot catch my breath or get enough air in and out. I also get dizzy and feel like I am going to pass out. I too am decreasing prednisone...I see the doctor on the 20th so I will mention it, I have mentioned it before and there was nothing to hear on exam, and even had heart tests and nothing, I am stumped as to what it all is. Karly I hope things are better soon.:there:

 

[LoopyLoo]

Hi Katharine,

I can understand how worrying this is for you and I think you are right in contacting your rheumy.

Just the fact that it's lasting so long regardless of what you do needs investigation.

I have breathlessness but different from you - since my recent flare my chest tissue is tender and if I do too much I do feel like my breathing is restricted. I have to work hard to calm it down and I have an inhaler if I feel it is really bad. Thankfully I've only had to use it once.

Please let us know how you get on, I hope you get some rest and feel better soon.

Hugz, :hug:

Pam xxx

 

[Maia]

You may want to ask your doctor(s) about a referral to a pulmonologist if they have no good ideas as to why this is happening. Then you'll probably get a much more thorough investigation.

I'm thinking asthma can present similar to this sometimes? Another thing doctors will think about is some sort of anxiety disorder of course too. Lupus and myositis can certainly affect the lungs and breathing as well so it would be interesting test to see if it improves with an increase in the pred.

Good luck - hope you get some answers and an improvement soon. It sounds quite horrible!

 

[Lily]

(((((((((((Katharine)))))))))))))) :hugbetter: I think the myositis sounds like a likely suspect I would definitely ring the Rheumy about your Pred taper, obviously you aren't well right now and going down any further on Pred is not a good idea. A slower taper from where you are now............ as in terribly slow might be more ideal. Let us know what the Rheumy says about all this.

love
Lily

 

[SingleGirl]

Hey guys, I'm sorry you are going through this... I'm there too. I had to leave work early today (new job, they don't know I have lupus yet) b/c my reflux was coming up and choking me. I felt like I couldn't breathe and it was making me lose my voice and cough.

I have a lot of respiratory problems. I have so many, in fact, that when they measure my lung capacity, the new nurse will ALWAYS go get the doctor immediately and tell them something is wrong with the machine. ha

In a way, I'm very lucky b/c since I've been dealing with lung difficulties my whole life, I rarely ever panic when I have that suffocating feeling. Don't get me wrong, I act... I find my nebulizer or an inhaler or get the phone to call 911... but I also remind myself that it's ok and the more I panic, the more my lungs will lock up.

I cough up mucous plugs too. I've coughed them up so large that I couldn't breathe for nearly a minute while I "vomited" it out through my airways. (sorry, I know, gross)

I have been on prednisone just for my lungs at times... to help strengthen them... You are doing exactly right to call the rheumy... I hope you get some answers soon..

As for me, what helps are the following things...

• sometimes I sleep propped up (when I was little, I had Big Bear and I'd sleep in his arms nearly vertical... now, I use several pillows or my hands
• this is gross...but clear your nostrils often... you'd be surprised how boogies hold ya back when you are already limited on what air you process
• keep kleenexes around you always... and always blow your nose before you eat or drink or activities (seriously, this helps me from getting choked during those times or feeling suffocated)
• practice some sort of meditation breathing to get to know the peacefulness that's supposed to come with breath (sounds stupid, but it helps in the scary times when the breath stops if you are already used to a slowed pace of breathing)
• keep a cell phone near you, it helps with piece of mind in case you do become in respiratory distress

hope those help at least a little, good luck

 

[Katharine]

update

Well everyone,

I chatted to some of you last night as I couldn't sleep of course and then got so tired I thought I had to try.

Well my trying lasted about 1 hour and then at 2 am I decided that even if I passed for a real idiot I'd go to A&E.

Of course, I did sort of pass for a idiot. I'm sure that they thought I was a raving loony insomniac that was bored :rotfl:

They did bloods, saturation was fine, ECG, my heart was happy and a chest X ray - all fine. So, a real mystery. They gave me two lots of nebulisers and then, happily, sent me home with so many holes in me that I thought I'd srpout leaks.

The A&E doc agreed that the only thing he could think of was the pred issue and he told me to go back up to 10mg even if I couldn't get hold of my rheumy.

I did get hold of my rheumy and she said 10 wouldn't be enough and to go back up to 12.5 for a week, then phone her again and if I didn't feel better she'd fit me in to see her earlier.

So, I will obviously be discussing this further with the rheumy when I see her but I have a feeling that upping my pred will do the trick as the problem had disappeared for several months.
The only reason it frightened me so much was that it didn't stop at all.

Anyway, I'm sorry for those of you that have a real problem - mine seems imaginary or something - hahaha - What a drama queen hey?

hugs to all and thanks so much for your replies,
Katharine

 

[Joandublin]

Hi Katharine

Im really glad that you got seen to. Its important to get all these things checked out and at least you know you are not dealing with an immediate critical situation. You cannot put a value on peace of mind and I think the outcome of increasing your pred sounds like the absolute right one for now. I'm glad you got to talk to your Rheumy as well.

Lets hope that the increase in the pred does the trick for you. It certainly sounds like your myositis is the culprit:hugbetter:

Katharine, sometimes it's all too easy to get complacent about symptoms, especially as often here on the boards you read about worst case scenarios - but never forget that you are the only you in the world and your body and your treatment is critical to your quality of life and well being.

Many hugs and I hope you start to feel better soon
Luv n stuff
Joan:rose:

 

[Clare.T]

Hi Katharine
Right, I already had you down on my drama queen list so that's nothing new :wink2:
Don't be so daft. I experienced the same a couple of times during the year before last's very hot summer. I don't know why and it wasn't an panic attack It was very frightening indeed. You did absolutely the right thing.
" What a Fool " isn't a good epitaph. I hope you can rest up today and will be feeling better very soon.
Hugs
Clare

 

[Lily]

I'm glad you went and that you were able to speak to the Rheumy :hugbetter:

We do get complacent sometimes because we live with so much day in, day out. It's often hard to know when to jump. But if in doubt I say jump, it's better than leaving something to get right out of hand and face a long hard road back.

:ermm: :bigsmile: So you will have to do better than that to qualify as a drama queen :rotfl: I'm afraid!

love
Lily

 

[mysharonna]

Hi Katherine,

glad you got in to see some doctors..hopefully the pred will do the trick.

If it does not go away or returns, I would suggest seeing a pulmonologist...after having a chest cat scan, they found loads of scarring and nodules on my lungs, most likely lupus related.

I have had a few episodes as you described..funny how you mentioned the yawning to get extra air..I had done the same exact thing!

Please, dont ever put yourself down as a drama queen, as we all know you are not. Advocating for oneself medically sounds nicer! :hehe:

Take care and feel better,
Sharon

 

[Taree]

Hi Katharine

There's nothing at all imaginary or dramatic about not being able to breathe. The "yawn" motion sort of simulates a breathing exercise where you breathe from your tummy until your chest expands to fill up your lungs from the bottom for max capacity.

Hope you feel better soon!
X T X

 

[lazylegs]

Hi Katherine,

Thank you for updating us on the situation. You did the right thing by going in. Having difficulty breathing is not just an ordinary situation. Having a daughter with asthma I have had to wrestle with that same call many a time. Better to be safe than sorry.

Take care,
Lazylegs