COPD and Steroid treatment

Chest and lungs
1

After my last appointment with the Pulmonologist he would not let me see my lung functionality test scores but said he wanted them to show an increase because he believes I have a significant Asthma portion. As it was my last FEV1 score was 31%. He said we will look at the next test in 2 months time.

He then prescribed a large dose of steroid tablets over and above the other medication I am taking. I took the tablets as prescribed until I stated noticing side effects and did some of my own research.

My eyesight was deteriorating badly, I had more phlegm and coughing. My body was constantly itchy with hives all over, I had developed a hoarse voice, I had stomach problems with the runs and extreme acid.

When I researched I saw these steroid tablets result in major bone density loss and also decreases your bodies immune system and you are more susceptible to catching diseases. They cause vision loss too.

I decided I had enough of these tablets and have begun weaning myself off them as you cannot go cold turkey on these things.

I am now feeling soo much better with just the hives now and again at the moment. I even breathe better - go figure. I do not react this way to the steroids contained in the inhalers.

Has anyone else had experience with steroid tablets?

2

I haven't had any experience with steriod tablets, only with the spray, which I'm told doesn't have anywhere near such side effects because if used properly most of it goes into the lungs rather than the entire body.

If I'd had that experience with a doctor I'd be changing doctors:  that's your body he's testing and you have a right to know what's going on.   31% is very low - was that the result on the previous test?   You're entitled to know at what rate it's declining or if it's stable.  Did you ask why he wouldn't tell you?

3

Crikey, I would have demanded to see the scores! What an odd thing to do...everyone wants to see a results paper!

As for the steroids, thank goodness you read up on it!

New Doctor I reckon!

4

Hi

Yes, I have been on steroid tabs (Prednisolone 5mg ) on and off for many years now but although I have a love / hate relationship with them, I have not had the side effects you mention (but then we are all different !).

On the contrary, they seem to have cleared up a long-standing skin irritation problem. The 'hate' side is that when first prescribed them several years ago, the dose was 8 per day which made me unable to string words together coherently and gave a strange 'out of body' experience.

When I suffer a chest infection these days, the self-medicated dose I take is 5 or 6 per day for 7 days in parallel with an anti-biotic, the latter to kill the infection and the steroid to improve breathing (as you seem to have found). At this level, I am 'not myself' mentally but have no physical effects. My FEV is currently between 15% and 18% and I suffer infections on average once every 6 weeks.

As for weaning off steroids, the accepted wisdom here is that short bursts of a week can be stopped abruptly but it is longer term use that needs tapering down slowly.

Do hope that this helps !

5

Hi , I have been taking prednisolone for many years now but haven't experienced the side affects you have , I was on them constantly it seemed for months due to repeated chest infections. I gained a lot of weight and had a moon face and I also now have osteoperosis. Fortunately now I only need now and then for infections which happen maybe every couple of months. I hate taking them like you, when I do need to its usually 6 per day for up to 2 weeks. Good luck julia 

6

What was the dosage amount of your steroid? I do take them, and have been taking them for several years, since hospital days when first diagnosed. My dosage was 25 mg at first, but they adjusted it to 10mg. I don't have any symptoms, or can't tell, since I do not know any better due to being on them since diagnosis. The only thing I worry about is my weight, which I have been lucky so far, but have heard horror stories from other's who have gained lots of weight, fat tissue around their abdomenal area, moon faces, etc. The eyes are also a concern, since steroids are suppose to give cataracs. I have a small catarac in my right and left eye, but the right eye is the largest. They are not ripe yet, and have to wait for them to become ripe before having them removed. Everyone gets catarac's anyhow, but, still don't care for it...lol. I never have had rashes, but have had small skin (close to surface of skin) tiny blood vessels breaking causing big red dots on the arms, or, legs, etc. The nurse informed me that steroids causes tiny surface blood vessels to break and they make red blotches. They use to scare me...lol. I would love to wean off my steriods, but they still don't have my true diagnosis, and suspicion severe asthma, and for me, if it is asthma, to wean off after being on them for several years, could cause asthma attacks, so not sure. I would have to be under direct watchful eye of the medical staff, I believe. I have also heard that Steroids keep our airways open, and give us strength. I don't trust them either, and would love to wean off them too! xoxo

7

You['ve been on steroids for years since diagnosis but later you say "they" still don't have a "true diagnosis"???   I'm confused and wondering why you'd be taking such strong medication with known side effects witjhout  knowing what condition you have?  Surely it's COPD?

8

Yes, is true that I have been on steroids for several years, and still don't have a true diagnosis. They are going by my cat scans, since they are showing mild inflammation. The doctor wants to keep me taking steroids due to the inflammation on my cat scan. She mentioned that my diagnosis could be asthma related, or, Interstitual Lung Disease. If I have emphysema, it is very mild, and difficult to find on my cat scan. Also due to the borderlining severe and very severe stage from my PFT, she wants me to take steriods. The steriod I am presently taking has been reduced from 25 mg to 10 mg. So far, I am not having any side effects, and I am hoping it stays that way, but to go off of them could be a big mistake in my situation, since they are suppose to help with airway dialation (from swelling).

Interstitual  Lung Disease usually does not have a clue what has caused it. The only thing known is the causes could be caused by bronchiolar disorders, drug side effects, and environmental factors, or is related to an autoimmune disorder that has already developed in the patient.

Next month the doctor wants me to visit a Rheumatoid Arthritis doctor, due to sometimes women who have RA, can have inflammation in the lungs before symptoms show in their joints. My appointment has already been set up. So she wants me tested for that type of ILD. Also, she may possibly send me for bronchoscope tests, etc. 

Also, before I typed this comment, I had typed another response/comment to you, but the moderator fetched it, and it was explaining what I am explaining here, but my response/comment did not have any links, so I can't understand why my response/comment was moderated, but this is why I typed another one. So, if you get another identical answer, that is why. 

But, due to inflammation of my small airways showing on my cat scan, this is why the doctor wants me to stay on steroids. Otherwise, I would love to not be taking them. 

Thank you for asking, and your concern, and have a great day! 

9

Emphysema is easy to diagnose via spirometry, doesn't need a cat scan, I've never had one and am quite happy to rely on yearly lung function tests with a pulmoinary practice nurse.   

Not blaming you at all for all these tests but it does sound like possible overtreatment, especially as none of them have yielded enough info for a diagnosis:  if it were me I'd be going with some form of COPD and focus on managing tha via rehab, medication, exercise, breathing techniques ... whatever works.

Thanks I am having a great day:  the sun is shining, it's warm enough to open the windows, I've stopped worrying about firewood and i'm only wearing one pair of socks ..... it's definitely spring in these here mountains!

10

Yes, I agree, and don't mind it, and will be testing, until we find the condition. I have to admit that the first years when they were insisting that I have COPD, they were fine years, only having the PFT tests given. But now, I do want to know my true condition, since I want to know how to treat it..for example, it could be asthma, and I don't want to be fooling around with the attacks, so need to know if I should be taking steroids and pumps, etc. 

My older doctor didn't seem to care, but when my new doctor noticed my appearance, she said I look too healthy, and am too young, for having emphysema and on a bordering severe and very severe level. She said that my symptoms are only for very old and frail emphysema patients. She said she see's them all the time. She then set up a cat scan, and found inflammation of my airways, which puts me in another category of lung conditions, called Interstitual Lung Disease. She is mainly giving me tests, in order to find out the type of treatment to give me. She wants to keep me on steroids in the mean time, mainly due to the inflammation she saw in my lungs.  

I can't wait until December arrives, since this is usually the time we can open up our house windows, and enjoy the cooler warm air. I am located in S. Florida. Our summers, and presently, are called the Mean Season, so is very hot and very humid. Have a wonderful breathing day, especially with the nice mountain air! 

11

I'm sorry but I still don't see the issue here:  a practice nurse can diagnose asthma with a spirometry test plus ventolin:  if your breathing improves with ventolin, you have asthma, if not, you probably have one of the other conditions which come under the COPD umbrella.

That's rubbish about not diagnosing emphysema bc of your appearance!  I'm not young but look extremely healthy.   What symptoms does she think only old frail patients have?   This all sounds very vague to me and I'd be relying on the lung function tests and learning to manage your condition.   I can see why you want a diagnosis and I think you're being given the runaround  - hope I'm wrong

Thanks I will:  at least it's Sunday so no f....wits will be burning off, supposedly in preparation for bushfire season but it smells like garbage burning to me, not fire hazards

12

Jude, As I mentioned earlier, she already said I may have Asthma. But, she knows, due to my cat scan that I have something to do with some kind of ILD condition, so now she has to find out what type of lung condition within the ILD category. 

Also, my doctor is a very good and thorough doctor, and is not over testing me, and definitely not giving me rubbish regarding appearances. She knows what she is talking about. She has seen a pattern in appearances just from many years of practice. All doctors gain this valuable knowledge just from practicing many years and going to hospital bedsides every day. The symptoms that I have are the same symptoms she insists that old frail emphysema patients have. She is speaking the truth, and is doing a good job as a doctor. She sent me for a cat scan and it proved her right, that I didn't have emphysema but another classification of lung conditions (ILD). I am not being given a run around, since it will help me gain knowledge about my condition and help me know what type of treatments to take. I think you are wrong...lol. I have a very good doctor who really works with me. Many people who are classified as ILD usually take about three years for them to find the correct diagnosis. 

13

I was merely asking questions because I was puzzled and I've known other people get what sounded like the same sort of confusion from doctors.    

14

I asked and he said it was because it did not show the increase he was hoping to attain. I was very annoyed.

15

Thanks for sharing your experience. I was on Methylprednisolone - not sure how different this is to Prednisolone. I weaned myself off them after using them for a month.

16

Bone loss is also one of the side effects as well as the weight gain. I feel for you, it's horrible to have to decide between two evils.

17

Hi Brenda. I would need to check on the dosage strength but it it Methylprednisolone.

The cataracs are worrying and I don't think everyone gets them?

18

Surely his hopes are totally irrevant: ; what about your right to have full information about your medical conditon?

Doctors used to behave like this last century when we were never allowed to look at our own medical records, but times have changed and passed this docdtor by ....

19

Most people do if they live long enough, but some things (eg smoking, statins, cortisone) can cause them to occur earlier in some people

20

Blade, Yes, my Opthalmologist informed me that every one gets them, and it just depend's on when they get them. Mine apparently are early. My parents got them in their seventies. They say the catarac surgery is easy and painless, and since I wear glasses, they can also correct my vision by adding lenses, while performing the catarac surgery. Thank you for letting me know! xoxo