Prednisone and Azapress

I was diagnosed on the 8th November 2010 with IPF. My pulmonary specialist immediately put me on Prednisone and Azapress.
Although I am on only 5mg Prednisone, a very low dosage, I have found that I have gained 15kg from diagnosis. I also stopped smoking 3 months before I was diagnosed so in essence that alone is probably the cause of +- 8kg in gain.
The IPF seem to be steady but the weight will probably end up killing me regardless?
Seriously looking for a workable solution to live with IPF and Prednisone or without Prednisone but with IPF? Any takers with some advice?
Regardless, I am thankful that I am still relatively healthy and not complaining.

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Often prednisone has no impact to IPF if it is UIP pattern and without underlying autoimmune disorder. Find out your histological pattern in pathology report first and go from there. Was you diagnosis from VATS biopsy?

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Hi Robert,

Yes it was suspected after lung x-rays and later a scan, because of "crackling" in the lungs. Then underwent a open lung biopsy and diagnosis followed. Excuse my ignorance but your sentence does not make much sense to me as I am not even sure what everything means, except that maybe I can be taken off Prednisone? I did ask the specialist about this but his answer was " well its working, why change it?"
I may very well be working but at 145kg it is no longer working for me? Lung function test show very little decline and I am now only required to see the specialist every six months.

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If lung function tests show little decline with prednisone at 5 mg then stay on it! It will prolong your life. The weight gain is tough but it won't kill you.

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There are many different types of pulmonary fibrosis, a key to knowing how yours is likely to behave/develop is knowing what pattern te pathologist suspects from reading your VATS biopsy. Remember though it's not exact science and differential diagnosis is tough for them. IPF with UIP is characterized for example with periods of stability marked with a few steep drops, while others are slow and gradual. Don't be lulled by your apparent good condition now.

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My MIL was on Prednisone for 2 years, 10mg a day. Her IPF continued to decline gradually and the doctor kept her on the steroid despite developing diabetes, having 7 GI bleeds and almost dying twice pin ICU with 7 units of blood the first time, 6 units the second time (underlying diverticulitis, but the steroids caused the bleeds), her hips and back got so bad she almost had back surgery and was riding a scooter. Her side effects were horrible.
Thankfully after a hurricane in Louisiana brought them to us in Florida in 2005 and she had a new doctor trained at Mayo, she was immediately weaned off prednisone, very slowly over 12 weeks and guess what? No more GI bleeds the last 4 years she lived. Her back and hips improved and she was walking again. She stopped night sweats and feeling so bad. Her diabetes never went away and that was the pits. She told me to tell everyone I know with this disease her major regret was taking prednisone for 2 years. For her personally, the side effects were much worse than the disease those 2 years. Her doctor was obviously not well trained in PF.

The Mayo trained pulmonologist said he tries new IPF patient on prednisone for 3-4 months and then runs all the tests again (PFT, High Resolution CT scan and 6 minute walk) and if numbers are IMPROVED, he will continue them on it with close monitoring, but if the numbers drop at all he will not allow them to stay on it and have the side effects to be an issue. The benefit must outweigh the side effects in his opinion.

That is our experience. I hope you can make a decision with your doctor that you feel comfortable with.

Deb B
MIL passed away 12/09 at 82 years old, Dx IPF 2003, Hospice 1 year at home

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I was diagnosed with IPF in November 2009. My pulmonologist at the time recommended that I consider prednisone and azapress. However within the next few weeks I saw 2 other pulmonologists who both specialized in Interstitial lung disease. One suggested that prednisone may be considered after a period of observation, checking lung functions, and possibly a biopsy. The third physician frankly said that there is no drug treatment for IPF. He was opposed to my taking prednisone and when I brought up the issue of a relative of mine showing no deterioration for a few years and attributing it to prednisone his comment was "How do we know how she would have done if she did not take it?" This relative had gained weight and fractured both of her wrists from a fall. He did suggest that I might try NAC which he was not sure would help but would not hurt. I chose to follow up with this physician and, also, am now taking NAC. I also exercise regularly, as per his advice. My overall condition had been stable thus far.

In Dec. '11 I attended the IPF Summit in Chicago and, being a physician, was able to attend the medical sessions. Many leading researchers in IPF were in attendance. A topic that came up often was about the PANTHER-IPF trial. If you have not heard about it, one group in this trial were receiving prednisone, azothiopine and N-acetyl cystine (NAC). It was advised that people receiving this combination of treatment withdraw from these medications because of higher mortality rates, hospitalizations, and adverse events compared with the other two arms of the study. The other two arms were NAC and placebo respectively. Duke University which was a coordinating center for this study sent out a bulletin on October 28, 2011 titled "One of the treatment groups in PANTHER-IPF trial stopped due to safety concerns".

I gathered, at the Chicago conference, that patients with UIP (Usual Interstitial Pneumonia), which is the most common from of IPF should not be taking prednisone.

I hope you find this helpful and will be glad to clarify any questions.

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Thanks Robert , Deb and Rajan.

I think my mind is made up to take myself of Prednisone, as a matter of fact; I have been taking 5mg every second day as opposed to daily for the last month. As always with IPF, I have good days and I have bad days but most of my days are governed by how I feel and how much my feet have swollen, how bloated I feel etc. and my breathing seem to be affected by my wellbeing and how little or how much I swell up.
The reason behind this is simple, if my six monthly tests, which is a simple lung test where I am supposed to breathe in and then blow into a tube, without any stress exercise, is still the same at my next test which is scheduled for June 2012. It means that the "reading" which was 67% at the onset in November 2010, and it was then 63% in January 2012 and whatever that means, is pretty stable even with me cutting out prednisone, and then I would like to try the next six months without prednisone to see what the effects are?
In essence, I feel exactly the same as I did after diagnosis, except that I am so many kg heavier.
Thanks once again for your valued input.
Dave

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Dawie,

Do what you feel you need to.

Remember IPF means idiopathic, words meaning "we don't know".

Rajan,
My pulomologist agrees and that has been my course, BUT, that is true only for IPF-UIP pattern. ( my official diagnosis), however 2.5 years later my pulmonary specialist can see more on Cat scans and suggests NSIP pattern, so perhaps a radiologist can get it wrong, apparently hard to differentiate. Also you can get UIP pattern from RA for example with equally poor prognosis to IPF-UIP.

I believe that for cases of IPF that don't respond to steriods underlying disease is not yet discovered.
For the majority of cases it is tied to an autoimmune disease such as schleroderma, lupus, RA etc which number over 100 and often overlap and are hard to diagnose themselves, or drug toxcitity, or pnuemonia, but most all do respond favorably to prednisone, with respect to lung inflammation. If you have this type of case not taking prednisone will harm you.

By the way I was on NAC and nothing else for two years and was stable. I would say the NAC helps. But then wham 25% loss in a month. Then suddenly prednisone at 50 mg/day. Funny how when the chips are down, a stance changes. Well so far the prednisone has stopped the additional damage from continuing, and I will wean down. But I just learned I have RA which often has lung inflammation. The RA itself is controlled somewhat by prednisone as a short term solution.

Dawie,
I would not do a thing without involving your pulmonogist, seems to me they are thinking in your best long term interest. There are many numbers in a PFT and quoting percentages means nothing without stating what it is. It appears you are early stage at worst and likely you have a mild case of lung involvement caused by the onset of an autoimmune disorder which will only get worse gradually.

Time will tell what you have, if you have IPF -UIP you won't make it much past 2014 or 2015 no matter what you do. If you have something else, since you have no treatment, the outcome will likely be the same. Not good options but that's is where you need to make choices from.

Prednisone has awful side effects but it is also a life saver, or should I say prolong- ER. I will stay on it for as long as they let me, lung damage is a one way street to death.

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Hi Robert,

You are a proverbial ray of sunshine. Only joking but you are right. I should not try things without my pulmonologist. Will go back on the full strength and 5mg per day plus the azapres and see how it pans out.

Thank you for your very valued, and obviously very informed opinion. I have never given it much thought as to what type of IPF I have, how long I may still live and how the IPF will progress.

Maybe next time with my pulomologist I will take more notice.

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Sorry to be such a downer but I tend to tackle life head on, it's the reality of IPF, and type is important as to how long you have and best treatments. As the disease is degenerative, good idea to roughly know how long you may have so you can do the things you want to before your health prevents you from it. I stayed working and earning a living for my kids as I had deemed that most important to me, now I am fully disabled, unable to work, but also unable to fly or travel most places. It's okay I made my choice a couple years ago, and I am still figuring out what I should do with my remaining time. A lot of people live a long time with pulmonary fibrosis ( caused by various things), whereas most that have IPF-UIP pulmonary fibrosis do not (2-5 years without exception).

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Our Mayo trained pulmonologist told us that if PFT numbers are improving, then he will leave someone on prednisone but if the numbers decline at all, he weans them off. He told us the side effects were not worth it.

All I know is that my MIL was on prednisone 10mg a day for 2 full years. Her numbers were very gradually worsening. The Lake Charles, Louisiana, doctor kept her on this medication anyway and it literally about killed her. She was in ICU twice with family called to come with major GI bleeds and had 6 bleeds requiring hospitalization while on the medication. I already posted about this earlier so won't go into it now. After coming off the steroid gradually over 12 weeks, many of her side effects went away slowly, no more bleeds, hip and back pain improved dramatically, etc. She did continue to have the prednisone induced diabetes, which was a pain and something else to deal with like IPF wasn't enough! The doctor said she would most likely never have developed diabetes. She was in her 70's and glucose ran in the 90's and she was already 78 years old.

Prednisone is a terrific drug for many reasons. Especially short term use. But for long term use, the benefit must outweigh the side effects. This must be discussed and a decision made between you and your doctor. Just make sure the doctor really understands PF, that's all. From my years on the PF caregivers board, I must say many of the patients have had medical staff who did not know enough about PF. Many doctors, nurses, respiratory therapists are just not educated on this disease. I am an RN and I feel comfortable saying this. So be an advocate for your loved one and make sure you have medical staff who is educated and will take time to listen to the patient .... or find someone else!

Deb B

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My pulminologist put me on Prednisone right from the start. I did gain some weight, but now, I curb my appetite. I stopped taking Pred., and felt like hell. Went back on it, was ok again. I was diagnosed last January, but, don't feel too bad, only hate dragging around 50 ft. of o2 hose. At least he told me that alcohol does not effect my condition. A nice cold beer, or a martini makes a nice relaxing period.

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Hi everybody, I'm a newbie. My mom (89 yr) was just diagnosed 5 weeks ago, then I took her to emergency 3 weeks ago. Her decline, in two weeks, was that steep. She spent two weeks in the pulmonary care section of the hospital and then was released to a convalescent hospital one week ago for physical therapy to regain her mobility. Her pulmonogist has her on prednisone, atrovent, albuterol, and acetyl cystine, NOT azothiopine. ????? Her dosage of prednisone is being reduced each few days. She may have started as high as 30mg, then 25, 20, 15, 10, and 5 mg... I just wanted to run this by you all to see how it jives with your experiences. I haven't been able to talk to her doctor about her medications, so all I know is what I've read on the internet.

Cindy

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I was diagnosed about 1 1/2 yrs ago with IPF and have had very,very mild symptoms & no meds. The last Pulmonary doctor I saw was about a yr ago. He just said I didn't need to come back unless I started having symptoms. He did not put me on any meds. I was climbing a steep hill the other day and had a real heavyness in my lungs that I had never had before. It took me awhile to recouperate. I exercise 5 days a week in a class where we do zumba/salsa dance, floor exercises & weights and have no problems with my breathing doing this. At this point I'm not sure whether or not I should go back to the pulmonologist. I do not want to take meds until I really need to. I would appreciate recommendations from anyone that is highly knowledgable about IPF.

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Lovey bug, if your certain it is IPF stay off all drugs as long you can tolerate it. If your uncertain then try to determine what else you have as several can be slowed or helped by drugs such as prednisone. (which has no affect on IPF).

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As far as I know, my mom did not have a biopsy. They did Xrays and CT scans.

From your post ..."For the majority of cases it is tied to an autoimmune disease such as schleroderma, lupus, RA etc which number over 100 and often overlap and are hard to diagnose themselves, or drug toxcitity, or pnuemonia, but most all do respond favorably to prednisone."

They suspect that my mom's IPF is autoimmune, perhaps because her symptoms appeared suddenly out of nowhere. She literally went from some shortness of breath to being hospitalized struggling to breathe on High Flow 100 % oxygen in less than 3 weeks. Sometime in there she had picked up pneumonia, so when that was cleared up, things improved significantly. But we're not out of the hospital bed yet.

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Hi, Loveybug,

I was diagnosed two and a half years ago. However, reviewing my medical data, a routine chest x-ray done in 2003 showed indications of lung fibrosis in my lower chest lobes. The chest x-ray was ordered for "chronic cough of 3 years". I was not followed by a pulmonologist and thus the Dx was delayed. During the 6 years that I was undiagnosed I went about my life as usual, hiking, golfing, gardening, etc. On reflection I am glad my Dx was delayed. Had I been diagnosed it might have interfered with my enjoying what life has to offer. I am also glad about the postponement of the Dx because I suspect that had I been diagnosed I may have been put on prednisone, which was the recommended treatment at that time. We now know that prednisone has caused more harm than help from recent studies. So I would support your pulmonologist's stance, especially since you are functioning so well. A pulmonologist , from whom I got a 2nd opinion and who is a highly respected researcher in the field of IPF, after confirming the Dx, told me that this condition runs an unpredictable course.

Somethings that you might consider are purchasing a pulse oximeter, about $60.00 at Amazon.com. It is recommended that your O2 levels not drop below 88%, though my pulmonologist has told me that it is okay for it to go below that if it recovers fast. I am currently taking N-Acetyl Cystine (NAC) and you might discuss with your pulmonologist whether it is worth a try. It can be purchased at health stores and I suspect it is helping me. There is an on-going research trial on this drug and results should be available shortly. I purchase my NAC in an effervescent tablet form which was recommended to me by my pulmonologist who is one of the researchers in the trial. I would also suggest your looking into yoga, specifically Pranayama, which can help this miraculous breathing machine of ours to be more efficient. Though by your leading an active life you are keeping your breathing apparatus in good shape.

As to my current state, I use O2 when I'm golfing or hiking, and periodically check my O2 levels with my oximeter. I hope you do not find this discouraging - your course could be different from mine. Please maintain an optimist outlook which I'm sensing you already do, from your post.

Rajan

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Dogeroo,

Sorry to hear about your mom. This would strike someone of that age very hard I am sure. While I have read cases of rapid SOB, (measured in days or weeks), it is not common for IPF. Periods of steep decline do occur including ones I have personally experienced.

It would see, the prednisone they gave her was a quick stop-gap measure. High dose 30 to 50 mg can be given and quickly tapered whereas longer term use must be carefully and slowly tapered. I am sure much of her acute illness was related to the bout of pnuemonia which they should have prescribed antibiotics. There are also certain types of lung interstitial pnuemonias which I was making reference to positive treatment with prednisone, in addition to autoimmune diseases. All my comments come from my own research, I am not a physician.

I believe most autoimmune disease patients with lung issues (PF) benefit from having some degree of prednisone in their drug treatment program. If the autoimmune disease is not diagnosed then the lung involvement classifies as IPF.

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Howdy, I'm almost totally confused. I read almost all the comments here, but, now & then my brains get blurry. I was put on 20 mg of pred., and then my Dr. tried to wean me off of it. I started to feel washed out. Is this normal? I would rather not take any meds if I can help it. One Dr. said the Pred. is not doing anything for the IPF, and its neither here nor there as far a help. If I go through a term of misery, and get off the Pred., will I feel better? Has anybody done this? I would like to hear your story. I do not have any pnue. or other ailments, I don't think, so, not looking for your diagnose, just your experiences with this prednisone. Also, has anybody heard of "Seripeptose" ??
Hiram...

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Dawie, have you thought about seeing a dietician? My husband was diagnosed with idiopathic interstitial pulmonary fibrosis 19 years ago after an open biopsy, and has taken prednisalone on and off for a lot of that time the last 10 years 5 then 10mg, at times 100 for acute symptoms. 3 years ago he was to be listed for lung transplant or he wouldn't last 18 months. He had to lose 10 k that is more than 20 pounds in 10 weeks to get on the list. Because it was so important he followed a diet to the letter no cheating except for the cheat day once a week and the weight did come off, all while on prednisalone. He was still knocked back from the transplant but felt so much better from losing the writ has kept it off and is still here. He finds even a big meal presses on his diaphragm and notices the difference.
The point of this is, yes you have to try harder to lose weight but it would be probably worth making a big effort to keep your weight down and stay healthy as you can, drugs are only part of the treatment.
Yes he has osteoporosis and other side effects because of long term use but he is still here.
Ps, dx was ipf but dr agrees now that our claim that it was probably asbestos 37 years ago that caused the Pf . He has been end stage for about 3 or 4 years.

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