Pred and breathing

[irisweeder]

Hi does anyone have problems with breathlessness when exercising.l have only noticed this recently.l was diagnosed in march and rhemy wants a quickish taper due to also being on letrazole am now down to 10mg from 20 mg

[PMRpro Ambassador]

He may want a quick taper - it isn't his decision, it is up to the PMR and it dictates how much pred you need.

Both inadequately managed PMR and pred itself can lead to breathlessness.

SnazzyD and Hidden can probably tell you more about pred and an aromatase inhibitor like letrazole and post BC.

[Hidden]

Hi irisweeder, I had terrible breathlessness even walking across the room some days. I don't get it as much now 3yrs in but have my moments.the Dr basically ignored my report of it to her as did the Rheumy. Both said don't worry but rejected it when I said pred can cause it. It was bad at 12-15mg then dropped off unless I am really fatigued.

[SnazzyD]

I didn’t take Letrozole while on Pred. Did they say why they want you off Pred quickly? I’m guessing they don’t want you to do them together because they can both result in bone fractures. As PMRPro said, the doctor can like you to reduce all they want but if you go too fast, your PMR will flare. Then it becomes a discussion about quality of life and threats posed by untreated vasculitis. The dilemma may be decided for you if the Letrozole is primary treatment for cancer but if it is just belt and braces to prevent recurrence it is less clear cut. If it is due to bone health, I’m surprised they didn’t just suggest one of the bone drugs. Personally, I stopped Letrozole in 2005 because I decided that my quality of life was so adversely affected by it, it wasn’t worth it.

[Blearyeyed]

I assume you are taking the letrozole for post menopausal breast cancer treatment , in which case I am so sorry that you are going through this with the added hell of PMR.

As far as I know , but Mrs Nails may have more knowledge on this as she has experience of breast cancer treatments , there is no issue in terms of side effects or contraindications for taking that drug with Prednisone or other steroids .

Although certain side effects that are common to both like nausea , tiredness and fatigue might increase.

This also suggests that a super speedy taper because of drug interaction is not suggested , at least not by NICE guidelines , so the GP may not need to push you so hard to reduce the steroids as quickly ( unless there are other health or tissue growth issues you haven't added here ).

If you have been on Pred and Levo since March and the breathlessness didn't start immediately while you are inactive , as well as when you exercise , it does create a picture that this probably isn't an issue of drug intolerance , but obviously keeping an eye on any side effect symptoms as you go and discussing them with GP as you go along if they change or get worse is important .

Sometimes , some people don't show intolerance to a drug until much later on a course , but that usually happens when the drug is increased rather than reduced when looking at breathlessness , palpitations or skin issues.

My thought is you mention that the issue is happening when you exercise specifically.

So I would ask when you mention exercise , what are you doing and to what intensity?

If you have PMR and also breast cancer related issues , the effect these illnesses have on your ability to tolerate exercise , either different types or length of exercising , is quite big.

If you try to do exercise to the same level as you did before you got these conditions you will get more breathless and have more Fatigue , and possibly cause a rebound of pain if you don't listen to your body warning you with breathlessness not to keep pushing on.

Exercise , with illness , even when the pain has subsided needs pacing , building gradually , regular fluids (before , after, and during exercise ) and needs rests built into what you are doing, otherwise , it can cause more PMR and non PMR related symptoms.

This is because you body is already doing alot of exercise on the inside battling the effects of two illnesses , and coping with processing the drugs you need for them.

Your body is already tired and is having to spread energy around alot of different important functions , so even if you have a good diet and were very fit before , normal body functions like breathing, thinking and digestion etc. can suffer when it tries to work too hard in too many ways at once.

So , think of what exercise you are doing , how intensely you are doing it, what you are doing in terms of physical activity in the same day as you exercise and how you prepare your body to cope with physical activity as well as giving it enough rest , fluid and nutrition afterwards and that might just solve the breathing issues.

Hope that helps .

[Hidden]

Hi lris

I don’t have any personal experience of letrazole as my BC was TNBC so no additional adjuvant therapy after Chemo & Zolendronic Acid for my bones.

I do however have issues with breathless after bending down to get something out of a cupboard or walking too fast. Exercising & Me have never been great friends.

Has the breathlessness got worse since you’ve been on the Pred?

Kind Regards 🌷

MrsN

[anutycrixp in reply to Hidden]

I was found to be very anaemic.Never had this before !I was investigated,checked and thoroughly rummaged to find a cause -all ok .As steroids treated symptoms of P.M.R blood count improved! Heart and lungs ok so now a bit breathless due to some weight gain and diminished exercise.Its a balancing act!!

[irisweeder in reply to Hidden]

Hi yes it has got worse only recently I have never been really fit but this is unusual. I have been put on alendronic acid recently

[PMRpro Ambassador in reply to irisweeder]

Have you any other problems - such as palpitations or other feelings of a racing heart? I have atrial fibrillation (a/f) which was caused by the autoimmune part of PMR. Alendronic acid is known to increase the risk of a/f in patients.

There are claims that breathlessness is more common in patients who take both alendronic acid and pred. Pred itself has breathlessness as a rare side effect but we have had a few people on the forums in the past who developed breathlessness on pred.

[irisweeder in reply to PMRpro]

Hi thanks for the info think I need a conversation with my GP or a pharmacist

[PMRpro Ambassador in reply to irisweeder]

Do you have anything other than the breathlessness? Is it all the time or just intermittent?

When it comes to arrythmias I am very interested in how often they do appear as I believe there is a much higher incidence amongst PMR/GCA patients than the doctors are prepared to admit. And of course - cardiologists and rheumatologists tend not to talk to one another!

[irisweeder in reply to PMRpro]

Hi it's only when exercising and thankfully no palpitations

[HeronNS in reply to irisweeder]

Yes, I think that conversation is an important one to have, especially if the breathlessness coincided with starting AA.

[Sheilamac in reply to PMRpro]

I developed breathessness within 2 weeks of starting Prednisolone. I couldn't walk very far without it happening and especially up an incline. That was nearly 4 years ago and I'm on 2.5-3mg. Now, I can walk further before it happens, I stop for a 'breather' and am off again. Of course, its often because I am talking and walking!

[Hidden]

The AA can cause heartburn and indigestion which are often used interchangeably with acid reflux and gerd. Acid reflux can cause breathlessness. If you take uncoated pred it won't help overall if you mistime food etc.

healthline.com/health/gerd/...

[Ann1A]

Yes, I am breathless too, I was searching this site to see if it was happening to other people. as with most things, its a mix of reassuring and worrying that it is.