Breathless

[Dinahmite]

8 months on Pred. Currently at 8.5. I am getting increasingly breathless on even a very short walk or going up the stairs. The fatigue is also worse. I have had this on and on off since having PMR but it has got a lot worse recently. I'm due to go to France for a week in 6 weeks time with family and am concerned about what to do. Anyone else getting fatigue with breathlessness?

[Rubyju]

Yes, both. 16 months into the disease and down to 7mg. The fatigue is a real problem. I have to take afternoon siestas most days and I'm not even 70 yet!

[Dinahmite in reply to Rubyju]

Yes long afternoon siesta! I don't sleep but I do listen to sudiobooks!

[SnazzyD]

Hello, did the breathlessness start quickly and get worse or had it been a slow burner from the start? Did it start with any kind of illness like a viral infection?

I think you need to get medical opinion for sure because breathlessness is caused by a number of things not related to Pred or PMR. However, there are two things that spring to mind that are related and those are possible increase in autoimmune activity and possibly in the larger vessels. Also, poor adrenal function can be a big issue around this dose and down. Have a read of this from the FAQ’s which is essential reading for all sub-10mg’ers.

healthunlocked.com/pmrgcauk...

I wouldn’t sit on this hoping for an easy answer here or hoping it’ll go away, especially with your trip coming up.

[Dinahmite in reply to SnazzyD]

Thank you. I shall investigate.

[Nanaofblib in reply to Dinahmite]

That is exactly how I was, but they said mine was my thyroid 😔, I also lost an incredible amount of weight, 3 yrs later, thyroid removed, I am no different, it's beyond a joke😔I have also now put on 3stone because removing my thyroid pushed everything the other way, blood tests last week , and the nurse says everything is fine, I give up.

[SheffieldJane]

I have had a couple of phases of this. A few years ago my husband insisted on calling an ambulance, for my breathlessness. I had all the cardiac tests which was their main concern. Nothing was found. I have had PMR for 4 years and non cranial GCA for a further 4. I am having mild breathlessness currently and wondered about a link with hay fever or the pollen count. I have been thinking it is Pred related no doctor has been prepared to commit to a definite opinion. The fatigue has been present for years. I manage it with afternoon naps and pacing activity. At worst the breathlessness is always at night. I have found sleeping propped up helpful, with a fan blowing in my face. I bought one of those finger clip measures for blood oxygen. It always reads as normal. This reassures me. Have the cardiac tests though, that’s important.

[Dinahmite in reply to SheffieldJane]

Thank you.

[PMRpro Ambassador]

Like Snazzy I'm concerned about the breathlessness and I think you need to get medical advice asap. You don't really indicate how breathless you are but since it has worsened recently you need to find out what is causing it.

How bad is it? Is it just you get to the top of the stairs and think "phew" or do you just need to slow down a bit on a hill? Did it worsen suddenly? Do you have any pain? Can you talk in full sentences even when it is bad? Do you get breathless at rest? Are you getting any palpitations before or along with it?

This isn't intended to scare you but the last time someone came on the forum with severe breathlessness we told her to go to the doctor immediately, she didn't and it got worse over a weekend - we told her to call 999. She didn't. Her family did when she collapsed. It turned out to be a pulmonary embolism. You cannot tell what it is without a medical professional examining you - and sooner rather than later.

[Dinahmite in reply to PMRpro]

Thanks. It is a lot better when I only breathe through my nose and dont try to talk on a walk. If I talk or beathe through my mouth I have to stop and lean against a wall. I know it's not Angina as I had full a catheter angiography 18 months ago before I had PMR. The breathlessness died away and didn't return until I had PMR

[PMRpro Ambassador in reply to Dinahmite]

That was 18 months ago, things change. You need an emergency GP appt tomorrow. No arguments from a receptionist.

[Dinahmite in reply to PMRpro]

Will do.

[DorsetLady PMRGCAuk volunteer in reply to Dinahmite]

Actually a lot can happen in 18 months - especially with angina… my hubby had it for 17 years so I saw a lot of changes. Agree with PMRpro.. you need it checked asap.

[Dinahmite in reply to DorsetLady]

Thank you. I guess I will have to.

[DorsetLady PMRGCAuk volunteer in reply to Dinahmite]

Please do… if it’s not that, at least you knock it off the list

[SnazzyD in reply to Dinahmite]

I agree with both DL and PMRPro.

[random901]

Hi Dinahmite (love the name!) I'm on 17.5 pred. Had the fatigue ever since starting them, but recently breathlessness also - nothing severe, but stopping to chat to neighbours tend to lean against a wall. Had major heart surgery 2 years ago, after severe breathlessness turned out to be a thoracic aneurism, owing to undiagnosed GCA, & apparently now all is well ( good review 2 months ago). I don't get breathless at night or when at rest, only when I exert myself. Worth getting it checked out, though.

[Dinahmite in reply to random901]

Thank you. I'm getting throughly bored with the whole business of PMR. I seem to be doing OK and then something else comes along but I am keeping my eyes on the light at the end of the tunnel. Even though that seems quite distant right now.

[DorsetLady PMRGCAuk volunteer in reply to Dinahmite]

At least there’s a light! 😊

[piglette in reply to Dinahmite]

You will feel a lot happier once you have seen a doctor and they can check what is causing your symptoms. Good luck.

[PMRpro Ambassador in reply to Dinahmite]

Occasionally it feels as if it disappears altogether - but it is only a bend in the track and you will navigate your way around that too.

[Dinahmite in reply to PMRpro]

Yes. I believe so.

[cmToddy]

Hi. I had this problem for a while and it was my iron level which had fallen. If I everything is said to be fine then maybe get your ferratin checked.

[greengages]

please have it checked. An MRI on torso for an entirely different reason showed I have ground glass opacity, can be nothing but can be something. Been referred to chest specialist as over the months and further scans it’s not resolving. I get out of breath and have to keep clearing throat as well as tired all the time. Good advice been given to you, don’t leave it. Hope it’s resolved quickly

[Alazarin]

yes. I experienced breathlessness, was told it was not a pred side effect. Had all the tests X-rays etc. Nothing showed. It has reduced as dose lowered. There seems to be no info, but many seem to experience it. At least get it checked.

[PMRpro Ambassador in reply to Alazarin]

"was told it was not a pred side effect"

Someone hadn't been reading the literature! It can be ...

[Lclmlbls]

I also suffer from breathlessness particularly when walking up the slightest of inclines and I have occasional palpitations. I recover quite quickly after resting for a few minutes. I often have sit for a few minutes after any physical activity. I’ve had ecg, lung scan and blood tests, none of which showed any particular reason for it. I’m due to have a 24 hour heart monitor on 26th June. I hope to find a reason and a cure but things move very slowly in the NHS.

[Raewynne]

I think you should get a check up.I have developed heart problems since being on prednisolone. Could be anything but I can only walk short distances without needing to catch my breath. I'm working on getting stronger!

[WilfDog]

I really think a GP appointment is needed for a full check, especiallyif you are goingaway for 6 weeks. I'm on long term pred and have been for 50 years on and off. Over the last 5 years and more so the last two, ive had palpatations that have nearly made me collapse. I've had a few investigations and found my BP was extremely high. Blood pressure tabs have helped but I still feel very fatigued and I'm worse going up a hill, with a feeling of heaviness. I'm not totally out of breath, but struggle on hills. My consultant has now asked my GP's to refer me to a cardiologist. As many have said there are lots of questions to answer, so an urgent appointment is needed. Good luck. Hope you get sorted before your hols x

[agingfeminist]

I have had breathlessness after walking a short distance for several years of this PMR journey. I had it checked out when it first developed, a few months into PMR.

I still have it four years later and I came off the pred 1 month ago (shh don't tell the PMR)....I had a major check up six months ago (including an angiogram) when I had a mild heart attack. All absolutely fine.

My doc thinks it might be related to the muscle myopathy I have which makes it exhausting to walk 100 meters on the flat. I can't climb a kerb and certainly not stairs. Walking and talking induces breathlessness more quickly. None of the docs have made any other suggestions and are not interested in it.

I hope yours turns out to be completely uninteresting.

[Dinahmite in reply to agingfeminist]

Me too. Thank you.

[Flivoless]

I had a sudden onset of breathlessness going up an incline but not on the flat, or trying to play a bit of garden cricket with the grandchildren, when I was on 5mg of Pred. I was convinced it was adrenal insufficiency but it turned out it was atrial fibrillation (heart at a permanent 130 BPM) leading to heart failure. So get it checked.

[Dinahmite in reply to Flivoless]

I've had AF for more than 20 years with few problems. Don't know what's causing this.

[Blearyeyed in reply to Dinahmite]

The way your AF affects you can change over time , as can the severity of the symptoms or type of AF you have.You definitely need to get a proper check up with your GP before any trips, request an urgent face to face appointment reminding the receptionist that you have AF and telling them of your increased symptoms and breathlessness.

It sounds as though you could require a check up of your AF and possibly a current ECG and Holter Monitor for a few days so that an EP or Cardiologist can explore what's happening. You could just require some alteration in the medication or doses you take for AF. If you have t had your AF assessed for sometime this is vital and you should ask your GP to make an urgent referral and request original Specialist if it's still possible to see them.

How long has it been since you had your basic blood tests monitored at the GP surgery?

If you are on steroids, PPIs and other medications it can affect your general health and nutrient levels even if you have a healthy diet and lifestyle which can cause symptoms like breathlessness, palpitations , fatigue , new types of pain and stiffness, exercise intolerance and it can make the symptoms of your current health issues worse.

The tests worth having checked with these types of symptoms are Full Blood Count, Liver Function, Kidney Function ( electrolytes) , Iron / Ferritin, Vitamin B 12, Folate, Vitamin D, Total Cholesterol and Diabetes HbA1c. Pick up the results even if the state they are normal because very low or borderline or adequate nutrient tests can cause more symptoms in some people than others , especially those whom have a long term health issue.

Electrolyte Imbalance, Anaemias , B Vitamins Insufficiency and Vitamin D deficiency are very common causes of the symptoms you are having and can make you more symptomatic with cardiovascular issues.

It's good to have the blood tests done every 3-6 months when on steroids , every 12 months for Vitamin D according to the Nice guidelines. It's worth requesting them now , if for no other reason than you could rule these more simple causes of your symptoms out, or take simple self care and get some treatment to deal with them quickly if low nutrient levels or insufficiency is present.

If your initial blood tests are mid range normal it might also be worth requesting for them to check your thyroid function and Magnesium , which are also common causes of fatigue and can increase your cardiac or lung health symptoms.

Try keeping a diary of your symptoms, exercise and duet at the moment.

You may spot common triggers like not drinking enough water during the day or while you are active , or that symptoms come more often after certain activities or at particular times in the day.

This can help you to make adjustments to your activity and pace your day to reduce triggering the symptoms.

Hope you find out what's going on soon , take care , Bee

[Sueloobyloo]

Hi there, I had a bout of breathlessness and it seemed to come on me while taking steroids, I was so breathless that I had to go into hospital for four days. My whole body had expanded and I couldn’t hardly walk with the swelling especially in my feet and ankles, it was horrendous!! They tried various medications plus water tablets furosemide, but to no avail. They checked my heart, had a ct scan and said everything seemed normal, but my legs were that swollen, they started to seep liquid and my legs were splitting open. I ended up going to my GP and he prescribed me Bumetanide 1mg and I lost 2 stone in a matter of weeks and I was able to walk better and breathe better and he told me that I was filling up with water hence what I was suffering, I hope this helps you but I’m not sure if there’s a connection.

[PMRpro Ambassador in reply to Sueloobyloo]

Interesting - obviously a GP experienced in dealing with unusual cases! Apparently it works when other things haven't!

[Dinahmite in reply to Sueloobyloo]

Goodness. That sounds dreadful. Glad you got the help in the end.

[Numptybrain]

you really do need medical advice ASAP, I don’t wish to worry you but my breathless was caused by pleural/ pericardial effusions which I had no idea about and I’ve been suffering with for over a year, I’m still struggling but prednisone is helping. Please get medical advice asap

Take care

Wendy xx

[Dinahmite in reply to Numptybrain]

Thank you Wendy.

[Whatawonderfullife]

hi, I’m only 57, I’ve had GCA for nearly 5 years so I’ve been on pred the same amount of time. I am also suffering from chronic fatigue and breathlessness, bearing in mind I’ve been diagnosed with FM (which I blame for most aches and pains) since the GCA. However, I found the simple things like tying my shoelaces, getting dressed and also walking and talking etc.,

As time went on I noticed a pain in my chest that was also be in my arm and or in my jaw. To cut this short, my doctor referred me to cardiology and prescribed statins, a spray and aspirin, I then had to go to hospital with suspected unstable angina, I have microvascular angina. It doesn’t show up in most of the tests.

You really need to get it checked. Please don’t leave it.