Has anyone experienced breathlessness while reducing steroids ? Started on 60 mg have an Auto-immune condition Eosophilia Fasciitis ,
My lung function test was ok and echocardiogram no cause found for breathlessness .
I’m now on 15mg but my breathlessness is terrible ,Has anyone else experienced the same thing ?
HH
I would speak with your GP and or any specialists you have.
Thank you I have spoken to them my GP thought it was heart failure but recent Echo has ruled that out thank goodness ,
And my Rheumatologist isn’t sure ? Because so little is known about Eosophilia Faciitis.
She has only ever seen one other case so whatever I get is news to her ,You couldn’t make it up could you 🙄Goodness knows where that leaves me ? .Thanks again for your advice .
Oh my...let us know if you find anything else.
I will but don’t hold your breath!No pun intended 😚.
It’s like the blind leading the blind down here 😳.
I’ll keep you posted 👍
The general lack off knowledge about rare conditions is disheartening, to say the least. Thank f I ring the rheumatology nurse or Interstitial Lung Disease nurse for help,the advice I get is what I thought I should do anyway.
Ssaid to my husband that nobody seems to know much,but don’t want to say so. So just do what I thinkbest,did ring this week about steroid dose,mainly to cover myself for when I see the consultant.
I must say the rheumatologist is brilliant,if she doesn’t know the answer to a query,she will say so.
It’s just a shame she doesn’t have time to man the help lines.
I’m glad your echocardiogram was ok.hope things get better for you
Thank you Oshkosh ,Wish I could say my rheumatologist was brilliant your very lucky .
Mine is the strangest person I’ve ever met , why on earth she choose that profession I’ll never know ? She’s certainly not a people person gets very defensive and irritated if you ask her a question ,and eye contact or smile is definitely not part of her remit .
I have no faith in her whatsoever and on more than one occasion I have caught her out on a lie .
Thank you Again Oshgosh 🤞
Hi Emerdale, 👋😊
I also have an autoimmune disease and have been on Predisone for many years. Tapering it has many funny side effects. For me it was itchy ankles believe it or not 😱 and terrible irritability. I'm not sure at what rate you are tapering , but perhaps it's a bit too quick? Please do talk.to your doctor about it. I hope you feel better soon. Take good care.
Cas xx 🙋
Hi Caspiana 👋
You could be right about the tapering I’ve been reducing every two weeks by 5mg 🤔I’m seeing my rheumatologist again in two weeks I won’t reduce anymore u TIL I’ve spoken with her .
What do you think of methotrexate ? She wants me to go on it but I haven’t read anything positive about it ? Have You ?
Thank you Caspiana for your advice 👍Godbless 🙏💕
Hello again, 👋
I was on Methotrexate for over ten years. I didn't have any bad side effects. It is the go to drug for autoimmune diseases so I'm not surprised that she's pushing for it. I think you could trial them but explain your apprehension to your doctor. Then see how it goes. xx 😊😀
I agree with Caspiana. I’m not sure how .long. you’ve been on the steroids. I too have a rare interstitial lung disease. I have been taking 10mg for the last three months. If my X-ray is OK next week, I’m hoping to reduce, but consultant is going to reduce by 1mg every 4-6 weeks
Hi cat lover Thanks for reply .
I’ve been on steroids 4 months started at 60 mg my reumatologist very keen to get me off and started to reduce two months ago I was down to 15 mg but some symptoms returned and my breathlessness was terrible so today I’ve increased my dose to 30mg and will remain on that until I see consultant in two weeks .
Hopefully my breathing will improve now .
Thank you again Catlover 👍💕X
I've been on Methotrexate for 25 years at various doses. You will have a chest x-ray before you begin it, but there are other options she mightt use if she thinks it would be better for you.
Hi Emerdale, if your consultant is useless you are entitled to ask for a second opinion from a consultant whose specialism includes your condition. You must get help for this.
It is very common to become breathless if you reduce too quickly and it's very discouraging. You dont say how quickly you've been told to reduce and generally if you've been on a large amount of steroids you will need to go all the more slowly and cautiously.
Please dont try to force it - take someone with you to the consultant or doctor and explain what's happening. To state the obvious the point of medications is to make us feel better - and this shouldnt be treated as a challenge with rules you have to obey.
Hi O2Trees I’ve been reducing 5mg every two weeks now on 15 mg and I won’t reduce any further until I’ve spoken to consultant and I will ask for second opinion
With a specialist .(that should go down like a lead balloon )
Do you think the breathlessness will resolve itself if I stop reducing ?
Thank you O2Trees I appreciate your advice .Godbless 🙏💕
Good morning Emerdale .
Yes, you will get breathlessness when you taper down too quickly, CD an you tell me how you were taking them them, for how long and the amount you started off using. Also the lungs do get used to them sometimes....Bev 😊💐
I experimented until I arrived at 13mg a day having tried everything from 50mg a day to 5 mg a day over recent years. I have noticed that 2 years ago I was OK with 7mg a day but cannot get below 13 mg a day now. I have been using steriods since 2004 and whatever the amount I take does not seem to effect my breathing,
In the past, I would have good lung function, little congestion, but I always felt that my chest felt tight, like I couldn't take a deep breath. I talked to my pulmonary specialist and it was my asthma that was not being treated. He put on an inhaler (Dulera) and it has helped greatly.
Talk to your specialist to see if you have asthma. Alot of people with Bx also have asthma.
Beth
Thankyou Beth seeing my reumatologist in two weeks hopefully she will be able to shed some light on what’s causing my breathlessness .
I’ve increased my dosage to 30mg from 15 mg I think I tapered off to quick ,will stay on this dose until I’ve seen consultant .
Thank you again for your advice I will keep you posted .
Godbless🙏💕
Hi Emerdale,
I also have been diagnosed with an autoimmune condition (Lupus) which have damaged my lungs (Pulmonary Fibrosis).
Over the years I have been given different meds including Methotrexate which I didn't felt help much. I was also given Prednisolone 20mg and the first time I tried reducing the dose by two and a half mg but as soon as I reached 10mg I started to fell very breathless and my Rheumatologist said to go back to the 20mg, which sorted my breathing, fatigue and all the other symptoms that I was having and was almost gone but was back.
My weight had increased and my face was moon shaped because of the extra steroid I was given along with and before chemotherapy infusion. I did not recognised my reflection in the mirror so I asked to reduce the steroid again and this time I was fine but I was now using ambulatory oxygen and now i'm on 5mg.
Hope this is of some help to you Emerdale.
God bless
Hi Maureenpearl Thankyou for sharing your experience you’ve helped me a lot today I increased my steroids to 30 mg from 15 mg I will stay on that dose until I see my consultant in two weeks ,
I think I reduced to quick to be fair she told me to stay on 30mg until I saw her again ,.
I’m just so desperate to get off steroids but I now realise there’s no quick fix and slowly slowly is the way forward .
Chemotherapy infusion ? Don’t know what ambulatory oxygen entails ? But glad it helps you and being stable on 5mg now is really good .
Thank you again Maureenpearl you have helped me a lot x 🙏Godbless 💕X
Hi Emerdale,
I have been on steroid for some years now and it’s keeping me stable so I’m quite happy to stay on until I’m healed.
I have had different drugs but none helped and some with awful side effects. The chemotherapy I had was Cyclophosphamide. I had to go to the chemo day unit to be given it via a drip (infusion).
Ambulatory oxygen is oxygen needed to get about.
Take care
God bless x
👍🏽🙏🏽❤️
Thankyou Maureenpearl for your reply 👍Surprised to read you’ve been on steroids for some years I didn’t realise you could stay on them that long ,My rheumatologist started to pressurise me to come off and I’d only been on them 3 weeks .I’ve now been on them 6 months started 60mg reduced down to 15mg but symptoms came back so increased dosage again now on 30mg will stay on that until I see the rheumatologist again in two weeks .
Today I went to see the GP again about my breathlessness ( it’s really bad now ) he’s putting it down to my weight ? I’m 5ft 6in and weigh fourteen and a half stone ,yes I dare say my weight is not ideal and losing a bit would help all my body ,he recons I need to lose 4 stone 😳.
I don’t think my breathlessness is all down to my weight ,there is def something else going on I don’t care what he says .
I had an echocardiogram last week and they ruled out heart failure but heart was enlarged but just had normal wear and tear ! What ever that means 🤔Also my lung x Ray didn’t show any cause for the breathlessness ?
Well I don’t know about all those things supposedly being ok ish .
But I do know I feel awful fatigue and look like death white as a sheet and constantly sweating ,now for the last month I’ve had this breathlessness that is getting worse by the day ,I can see me going to casualty at some point don’t know what else I can do ? .
I’m glad your stable and staying on the steroids is working for you if I ever got to that point I’d do exactly the same thing .
Thank you again Maureenpearl for your feedback .
Godbless 🙏Take care 💕
In 2017, while I started Ibnutrib , I had thrice faced issues pertaining to lungs and had tremendous breathlessness. Twice I had pneumonia and after 2 months again had fungal pneumonia and in Oct 2017 had my left lungs filled with blood . Eventually besides my Haematologist, I am under care of excellent Respiratory Doctor.
Since past two years I am strictly regularly following preventive regime of Nebulization + Inhaler and also take precaution when pollen season is at peak.
And I must add breathlessness was due to mucous in my lungs and I took physiotherapy for two months which gradually completely extracted mucous strengthening my lungs.
So now feeling much better.
Pls go to a Respiratory Expert Doc and not to a GP.
Emerdale sorry to say lv not recieved your last post i.e.alive and kicking ,hope lm not being blocked , things ok just ,breathing getting more laboured, but still exercising hope you are .
formed a exercise class in our home thers five of us locked down ,oh the joys .god bless Rodders
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