COPD and Steroid treatment

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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?

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28 Replies

  • Posted

    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?

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    • Posted

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

      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 ....

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  • Posted

    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!

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  • Posted

    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 !

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    • Posted

      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.
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  • Posted

    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 
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  • Posted

    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
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    • Posted

      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?
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    • Posted

      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! 

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    • Posted

      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!

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    • Posted

      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! 

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    • Posted

      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

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    • Posted

      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. 

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    • Posted

      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.    

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    • Posted

      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?

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    • Posted

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

      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
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    • Posted

      Statistically smokers tend to get cataracts earlier, but there's some hereditary component too.   

      When you speak of corrective lenses, is that free on your health system?  I'm waiting to see my gp for a referral but there are stories of people in the public health system here (Australia) waiting for years, whereas people with money or private health cover can get them done immediately.     I have been told by someone who's had the surgery that there's not much point in having corrective lenses put in if your have astigmatism because you'd still need glasses for some things.

      I've also been told the surgery is easy and painless with very few complications

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    • Posted

      Yes, we have the Obama Care in the USA, and therefore, sometime during every yearly January, we have to select the type of medical insurance carrier we prefer, and then pay a monthly premium, plus whenever we visit our doctors or specialists or anything to do with medical..it's nickle and diming dollars for all our co pays for doctors, co pays for medications, co pays for imagine, co pays for daily re hab, co pays for everything.  So, when I visit my Opthalmologist, then I get a check up, and if they prefer, they send me to have the eye operation, which is an office procedure, and take out the cataracts. In my situation, my doctor says my eyes are not ripe yet. But, when they are ready, the surgery procedure will be immediately, and I pay the co pay. The co pay is a small percent of the total bill. Also, to have lenses put in the eyes, does cost more, and it depends if the insurance carrier of your choice, if they allow it, and if so, what they charge before they help pay the remaining balance. They have a staff that finds out all these cost things, making it easier. Both of my parents have had their cataracts removed and my dad had lenses placed in both his eyes, and he loves his new vision. My dad has to use his reading glasses to read up close, but otherwise, he would of had to use them anyhow. He loves it that he does not have to wear glasses for driving or watching tv. The surgery is easy and is painless too. 
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    • Posted

      They can choose to try to sign up for Medicaid, or, try to find a charity based medical clinic (if there are any). There is also a city health clinic, but usually this is in cities, not towns. Also, they seem to really cut corners regarding health care, but on the other hand, they can be a great blessing. For example, if we need a tooth root canal, they just extract the tooth. The city will try to accomodate by doing procedures as low paying possible.

       At age 65, we can all sign up for Medicare, but still have a premiums and co pays to pay.  If we choose Obama Care, the more expensive monthly premiums, usually don't have high co pays, but the lessor monthly premiums usually have higher co pays.

      Every year around January, we shop again, and try to find a good medical health plan using ObamaCare. We don't have to be poor or rich to have Obama Care also, but if someone who is very poor can't afford it, then their is always applying for Medicaid or trying to find a charity based health clinic (which -clinic-are becoming more scare,

       Before Obama Care, I use to be very involved with a Charity based Hospital Clinic, which was extremely good...I hardly paid anything. But, they told us that we had to now begin Obama Care, unless we have medicaid. 

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    • Posted

      Medicade is different from Medicare: Medicare sign up begins at age 65 and above, but, Medicade is for people under age 65. Medicare is suppose to be better insurance than Medicade, but Medicade greatly helps the poor. It is difficult to get Medicade, since they really screen people before they give it to them. 
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    • Posted

      It sounds unduly complicated to me:  the Australian system is funded by a medicare levy on wages & salaries depending on earnings and everyone can access it, although people with private health insurance or lots of money can get faster treatment because they don't have to go on waiting lists to see specialist doctors privately.

      Many general practitioners bulk bill - ie. bill the government directly, but some of them and most specialist doctors charge more than the government has set as the fee, so we either have to find the difference or wait until we move up the waiting list.  I've insisted that my cardiologist not charge me the $75 gap:  he doesn't like it but he did agree, most people shut up and either don't see specialists privately or fidn the money somehow.   

      Is the government act really called "Obamacare"?   Surely not!

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    • Posted

      It is really called, Health Care Marketplace. We call it Obama Care, since it makes it easier for others to understand what we are talking about, since it is newly established (about 3 years old), and some people still don't know it's real name yet, but if you mention the word, ObamaCare, they instantly know. But, when the yearly time comes when we have to pick and choose our health insurance plan we want, we must choose it from this marketplace, and it is an online marketplace. I think the Australian type of health care is nice, even though their is a waiting line. But, it depends on how long a wait...if it is 3 months, then great, but longer, not sure. At least there is health care, and that is what matters. There are people in the US who dont have anything. They don't know how important it is to have healthcare, so they have never signed up for anything, including medicade. themselve and their families and friends are all ignorant about the importance of healthcare. So, there are traveling clinics that go to these small towns and educate them about the importance of health care, and about medicade. It is because it is so complicated, and people get confused, and are not sure what kind of health care they can have access to. It is so much simpler if they already have health care, such as in Australia. Myself, I have always wondered about and think I would love to have healthcare such as the system Australia has. The problem with Obama Care is the premiums (monthly payments) and deductibles (co pays that have to be met) have been already going up in costs, and this will eventually cause a problem for Americans down the road, especially since we have to have this care by law. 
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    • Posted

      That's unbelievable!   Officially juxtaposing "Marketplace" with "Health Care"!!   It sounds like compulsory private health insurance, am I right?  And if you can't afford that you don't get decent or any health care?

      I don't get it:  why do US ciitizens in the wealthiest country in the world, put up with this?   Obviously it means the most vulnerable will have poorer health & shorter lives .... or is that the idea?  So why on earth was there all that outrage about Obama introducing "socialised medicine"?   

      Australia's system isn't perfect, but not even our most conservative governments would attempt to abolish what we already have and substitute a system like that, although the various governments have fiddled with it and with the previously "free" prescription service for low income people.    Although it's been considerably eroded in actuality over the decades, we still do have a tradition of everyone being entitled to "a fair go", which I guess is in contrast to the US tradition of rugged individualism.   Maybe it's our convict heritage????    

      There aren't waiting lists for emergency consultations or surgery, but some surgery classified as "elective" can take a while:  eg I'm about to fight the system to be moved up the waiting list for cataract surgery, but if I had lots of money I could get as much cosmetic surgery as I could pay for privately, or immediate cataract operations too for that matter.

      Thanks for the information, I really appreciate the trouble you've gone to in explaining ity all so well and I also now appreciate our system much more, even though it's not perfect.

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    • Posted

      In reality, we are actually purchasing our own private insurance, but this time, the private insurance has to conform to Obama rules. The actual private insurance is just like the private insurances we have had for the past many years, but much cheaper regarding monthly premium payments. I've understood it is due to the  Doctors, whereas they like to have their own liberty and payment standards. This is why it is difficult to make it all one health system in our country. When we were first introduced to Obama Care, everyone, including myself, really fell in love with the idea of being able to afford the privacy insurance plans that mainly only wealthier people could afford. The other way of having private insurance was through our jobs, but the jobs would of had to be the best of jobs in order to have good private insurances, otherwise, like working at a McDonalds flipping burgers, the job health insurance required hugh co pays for everything, so no one could really use them. I remember they were basically worthless. Many workers had to seek out private charity clinics for health care. I had to do that too, until Obama Care came about. It was nice at first, but now, we are worrying that the monthly premiums are going to go up, up, up, in the years. Hopefully not...it did seem a little higher this year, but is too soon to tell. 

      I actually love Obama Care and look forward shopping yearly at the Marketplace, because this is the first time I've had my own private insurance. I just didn't shop as well this year, and ended up with a private insurance that had a high paying deductible (co pays), and monthly premium is a bit on the high side too. But, it is better than having no insurance at all.

       You are welcome regarding information. Thank you for sharing information too. 

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