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Does anyons has experience if Steroids make worst Bronchiectasis?

Amelia2024 profile image
26 Replies

I have been prescribe steroids for my bronchiectasis that is mild to moderate. Normally I dont cough much, my phlegms mostly comes from my sinuses, is what the specialist told me. But he wants me to do steroids with asma puffer. I suffer of osteoporosis and I know what steroid do to your body, after a while they wont work, and you will need bigger dosages. Please some opinions, I am worried about this..

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Amelia2024
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26 Replies
janedivney profile image
janedivney

Steroids are not routinely prescribed for bronchiectasis alone, unless you’re also having an asthma flare-up. I would query why your doctor wants you to have them, especially in view of your osteoporosis. Many doctors are ill-informed about bronchiectasis and prescribing steroids can be a knee-jerk reaction. Are you under the care of a bronchiectasis specialist? If not, you need to be.

in reply to janedivney

Well said. Basically GPs know nothing about bronch and do more harm than good.

Amelia2024 profile image
Amelia2024 in reply to janedivney

My pulmonologist gave me a puffer BREO that comes with corticoides and vilanterol. He said it will refuce inflamation. He wants to dry out plemgs. I know the side effects long term corticoids, I been there before because I suffer RA for 27 years, I off medication and control RA with diet now.Also, I am worried, because I have seen one of my friends with those puffers and they dont work anymore after a couple of year of daily use, plus all the side effects that corticoids give. She is suffering so much.

Please, help me, I need your advices, I dont know what to do. I am so hopless with bronquiectasis.

Patk1 profile image
Patk1 in reply to Amelia2024

It's q normal to have a steroid inhaler to try to control inflammation.do use with a spacer device and rinse Yr mouth after - to reduce liklihood of thrush.my son hass RA + uses cryotherapy once a week,cold water swimming and apr-oct an ice bath pod, & swears by a cocktail of molasses,apple cider vinegar+honey.his inflammatory markers have all come down x

Meme50 profile image
Meme50 in reply to Patk1

Thank you I am going to try this mixture. Suffering for many years.

Oral steroids are not recommended for bronchiectasis on its own. Only when combined with asthma or copd. They can increase the risk of an infection whilst hiding the symptoms of an exacerbation. You and your GP can find this in the bronch treatment guidelines. I have fostair which is an inhaler with a small amount of steroid which helps keep down inflammation. My consultant jointly wrote the latest guidelines for bronch.

Nula2 profile image
Nula2 in reply to

Hi Littlepom 🙋‍♀️, I have Bronchiectasis and my specialist put me on Fostairs (2puffs twice a day). I know we are all different but it's reassuring to know that someone with a long history & knowledge of Bronch is also on it. Take care ❤️🙂xxx

in reply to Nula2

I don't actually feel the benefit of using it whereas copd sufferers often say that it helps their breathlessness. I take it for the anti inflammatory properties of the tiny bit of steroid and because I trust my bronch specialist. Yes it is nice to know that another bronch uses it.x

Tinker26 profile image
Tinker26

My consultant advised against steroids for bronchiectasis, said they cause more problems unless asthma flare up, I'm better with nebulised saline for lung clearance good luck

Amelia2024 profile image
Amelia2024 in reply to Tinker26

Could you tell me if you use any kind of puffer to cope with plhemgs or just saline nebulizer? Because I dont want to depend so fast on puffers. Thanks

Tinker26 profile image
Tinker26 in reply to Amelia2024

No I stopped using a steroid inhaler once I was put on montelukast only use ventolin maybe once or twice a year

Tiggertheterrier profile image
Tiggertheterrier

hi Amelia. I have bronchiectasis on top of easily annoyed asthma! I also have osteoporosis and receive an annual infusion of Zoledronate for this. I do need courses of steroids every now and then when both lung conditions have a hissy fit at the same time! At one point mmy Consultant had me on steroids for about three months as he said the inflammation needed knocking right back. He said not to be too concerned as I was receiving regular treatment and Dexa scans for my bones. Steroids do work very well for me, I can actually breathe without thinking hard about it. Everybody is different and we all respond in different ways to treatment and medication.

in reply to Tiggertheterrier

I won't bore you with the details of what I have been going through but it is highly likely that I have osteoporosis and I am waiting for a dexa to confirm it. Can you tell me if you have found that the zoledronate helps you. Or do you have side effects?. Thankyou

Tiggertheterrier profile image
Tiggertheterrier in reply to

hi Littlepom, I was trtried on oral medication initially, but due to my tendency to gastritis they changed me to the infusion. I was a bit achy and tired after ththe first one, but next two were no problem. I also like the fact it's once a year!! My local hospital do them, but some larger GP medical centres may also have the facilities.

in reply to Tiggertheterrier

Thankyou for telling me. I won't be able to take the oral medicine because I have had swallowing problems with meds. I hope that they will give me the infusion. Have you felt any benefit from the drug?

Tiggertheterrier profile image
Tiggertheterrier in reply to

I get another dexa scan this year ( here, they give you 3 infusions then a scan) which will tell me if my bone density has improved. I don't get any symptoms from my osteoporosis, they only discovered I had it after I got two stress fractures in my foot!!

in reply to Tiggertheterrier

Thanks

B0xermad profile image
B0xermad

Hi Amelia I have bronchiectasis and take steroids for a flare up they Don't seem to affect my bronchiectasis if I take a 2 week short course in fact they help a lot combating the increased effects of a exacerbation

Izb1 profile image
Izb1

I can honestly say that steroids help when I have a bronchiectasis infection, it seems to calm down the inflammation in both my chest and sinus's x

GintyFerguson profile image
GintyFerguson

I have bronchiectasis and asthma . On Fostair and Incruse. About 10 years ago I was offered ongoing prednisilone tablets and refused because I hate the side effects and rather die! I'm still here and well . I take various vitamins and zinc plus eat well, rest well, sleep well and exercise lungs. However, it's important to say that if the asthma flares a short course of steroids shuts it up!

Nula2 profile image
Nula2

Hi Amelia, I'm on a steroid inhaler (fostairs) don't know about side effects or long term use but they do seem to help me to bring up mucus 😊xxx

Patk1 profile image
Patk1

I have severe asthma+ severe bronchiectasis.steroids have helped hugely during bronchiectasis exacerbation as its the inflammation,as well as infection,that creates excess mucous.the inflammation can also cause severe,irreparable damage

Tinker26 profile image
Tinker26

Aw no I don't use inhalers as I'm on montelukast, however I do have an acapella for mucus clearance which I get free on prescription

bcstx profile image
bcstx

Is your Dr a pulmonologist? Do you have lung problems? I have COPD. I'm new here. I have had steroids many times through my P Dr for lung issues etc. It usually takes care of it. I've been on several different meds with this problem. Luckily I haven't had it in awhile. I usually end up in the hospital when I get flare ups with my COPD.

Cookiemonsterr profile image
Cookiemonsterr

Hi Amelia, for decades I have been on inhalers ( budesonid with formoterol or similar) and emergency room visits and oral prednisone or injections when things get out of hand. In fact nothing seems to have changed in 40 years 😀In 2019 after 3 excerbations in a few months I got my own nebuliser at home, it was a night to day change, still budesonid with salbutamol

Amelia2024 profile image
Amelia2024 in reply to Cookiemonsterr

Could you tell me and help me, if after 40 years, you have develop osteoporosis and very dry mouth. My greates fear is suffer of dry mouth because I suffer of TMJ, my jaws are damage, if I develop dry mouth I will need to swallow more often and that will be extremely painfull for me. I am so afraid of that, I have suffer so much pain that I dont know what to do anymore. I am trying to manage only with saline nebulization and mucus thiner and natural approach. I only had an exacerbation once in 5 years. But it seems that the inflamation by itself can cause more damage. Please can you give some tips and tell me what vaccines do you have, my pulmonologist has recommend me 8 vaccines.

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