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    • #25903
      Dave Sabatelli
      Participant

      As I read thru IPF articles I find many patients are prescribed Prednisone by their pulmonologist.  What are the benefits of taking Prednisone?

    • #25908
      Mark Koziol
      Keymaster

      Hello Dave, a majority of the patients who are prescribed prednisone are PF patients. They are prone to have more inflammation and the prednisone is prescribed for that reason. Take care, Mark.

    • #25957
      Arthur F
      Participant

      What is the typical dosage of Prednisone for PF patients?  I have been prescribed both tapered prescriptions for flareups that last from 10-20 days as well as a daily dosage of 10 mg of Prednisone that went on for several months.  The 10 mg. dosage  seems to reduce my coughing and allows me to exercise more  I would appreciate any feedback about what dosages of Prednisone have worked for others.  I say this knowing that Prednisone has significant side effects.

       

    • #25958
      Dave Sabatelli
      Participant

      I have IPF two weeks ago my Dr prescribed 2 20mg prednisone/day for 7 days. I believe the steroid burst help my daily activities  Dr says it can be repeated when necessary.  The steroid did increase my morning BG number but they returned to normal as soon as I stopped taking them.

       

      dave

    • #25963
      Sam Gilmore
      Participant

      I have had IPF for 4 years at first I had no quality of life.  After talking to my Dr. He put me on Prednisone been on it for about two years at 10mg what a difference I know there are side effects but to me the benefits out way the side effects. I also know that there is no cure at this time.  Just take a day at a time.  You will have good days and some not so good. Just keep a positive attitude..  Prednisone has certainly helped me.

    • #25972
      Pat
      Participant

      What are the side effects of taking predinisone at 10 mg daily?  Does it effect your appetite?

       

    • #25973
      Arthur F
      Participant

      Yes. Prednisone definitely increases my appetite regardless of the dosage and yes, I usually gain weight when I am on it. I can not say what the specific side effects are at 10 mg. So far none for me.

    • #25975

      Hi Arthur,

      Good question, though I’m afraid I’m not qualified to answer. Hopefully a few folks chime in and share their personal experiences with what doses they’ve been prescribed Prednisone. I do know that it is common for doctors to prescribe a dose based on an acute exacerbation/flare up (if they see Predisone suitable) then to have patients taper down once things settle. I’m not sure if this is helpful, I’m glad others are chiming in.
      Char.

    • #25983

      @tayla

      Hi Pat,

      I can only speak to my experience, but unfortunately yes, Prednisone at 10mg increases my appetite and I also notice a bit of a “moon face” or “steroid cheeks”, which I don’t like. My usual dose is lower, but occasionally I am on 10+ mg when I have a flare up. Hopefully your experience with it isn’t too bad.
      Char.

    • #25989
      Susan Howitt
      Participant

      I am on 10mgs of Prednisone for permanently, upped to 40/60 when having a flare up, without it live is unbearable with the coughing.  I have not had one side effect bar the fact that I could eat a scabby dog, so self control is important there.  Sorry you have the moon face effect, so far I haven’t and have been on Prednisone for 2 years.

    • #25997

      Thank you for sharing Susan. It’s so nice to hear you don’t have any unpleasant side effects (aside from appetite increase) from Prednisone, even the increased dose for flare ups. That is great news 🙂
      Char.

    • #26009
      Janey Henderson
      Participant

      I take 20mg a day of Prednisone. Taking them as made a big difference to my breathing. I was really struggling before but not quite so bad at the moment.

    • #26011
      Joy Barney
      Participant

      Hello All!  I have been on prednisone for a year.  I started at 60 mg per day to reduce the extreme inflammation  in my lungs that originally caused my PF. The high dose was immediately effective for being able to breathe better.  I had all sorts of side effects – grew a goatee, beard, long hairs in strange places on my body, chipmunk cheeks, 20 lb weight gain in one month, random hard fatty spots in various places and hot flashes like during menopause!  But overall, it was so worth it to be able to breathe much better.  Over the past year, I have tapered off to 10 mg/day now.  I haven’t lost the weight, but some of the facial hair is reduced.  As I came off the high doses, I also started losing hair on my head in big amounts.

    • #26041
      Argyrios Goulis
      Participant

      Hello all,

      Since 2012 I started taking prednisone 15mg per day together with other medication. The dosages were increased during flare ups and then decreased again. The moon face start appearing about 2015, and pro diabetes started too. I didn’t payed much attention to pro diabetes and I continued my lifestyle. Minimal exercise, eat everything, work from home. To cut the story short about June 2016 I was diagnosed with diabetes T2. Now on insulin and pills and only this year I managed to control the diabetes with the drugs and healthy diet. So ladies and gents diabetes T2 comes from prednisone as a very nasty side effect. Please make a favor to yourselves and check for pro diabetes and if you have it please eat healthy go on a diabetic diet. It is a very difficult situation to have PF and diabetes!

    • #26200
      Jerry Eaton
      Participant

      I have found prednisone to reduce coughing and the mucus from my nose, but only if I take at least 20 mg  a day. I have advanced IPF which may account for the increased dosage needed to help me. 10 mg daily did me no good.

    • #26202
      Susan Howitt
      Participant

      My pulmonologist has refused to increase the Prednisone, but I must admit on a bad day I do take 20mgs instead of the 10.  Coughing reduced and not blowing my nose nearly so much, this effect seems to last for several days, I have advanced lung diseases and on 6lts O2 by day and 2 1/2 lts at night.

    • #26217
      Patricia Meadows
      Participant

      Immediately upon diagnosis of PF from an as-yet-unidentified autoimmune disease in April, 2013 I was put on 50mg/day.  I read the information sheet and when I saw that weight gain is a typical side-effect, I decided to pay strict attention to what I ate.  “Mindful” eating really helped me.  If I was out for a meal I would eat half of what was on the plate, and took the rest home to eat the next day.  At home I put a serving of food on a plate and that’s all I ate, despite the fact that for the first two or three years of being on Prednisone I felt hungry ALL the time.  I might have gained 5 pounds, but that was good since I’d lost 15 pounds prior to being diagnosed (went from 130 to 115 lb) because I was so sick I couldn’t eat.  I also got hair on my face and on the back of my hands.  Although I finally got off Prednisone in June, 2017 to this day I still can’t sleep without a sleeping pill, although I’m down to half or a quarter of Zopiclone per night.  At one point I had to take 1 1/2 pills to get any sleep.  On two occasions I didn’t have any Zopiclone so was awake for 42 hours straight one time, and 36 hours the other.  It’s a challenging drug but in my case, a life-saver.   There were many more side effects including become very hyper and “wired”; thinning hair; heartburn; unsteadiness on my feet; ringing in the ears; loss of sense of taste or metallic taste in my mouth; lack of impulse control; and others.

      I also had Retuximab by infusion a couple of months after diagnosis and it, along with the Prednisone, seemed to really work.  Very best wishes to everyone on this journey!

    • #26227
      Les Viegas
      Participant

      Long term use of Prednisone even at low doses (eg,  5 mg)  can result in drug to drug interactions, bone density weakening, diabetes, skin cancer,  and impact to blood pressure meds, among other side effects. It can mask serious organ problems such as a malfunctioning appendix, sometimes until it is too late. At the end of the day, it’s a matter of weighing the risks against the benefits. The lower the dosage, the lower the risks. I have been on a 5-10 mg dose for the past 10 years and know first hand the side effects I have to manage, but it has been worth it to me to live a very productive life post-transplant at 78 yrs driving fast sports cars and spending winters on the beach in Florida. So, do not let these risks scare you but be sure to understand what they are and learn to monitor and manage them very carefully.

      Les

    • #26226
      Randy
      Participant

      Good afternoon everyone. I had a appointment with my lung doc this morning and so far so good. I have been on prednisone for about 5 months off and on. I got this doc after my other retired and it took awhile to get another doc. This was the first drug he prescribed because I was coughing like crazy. He put me a sliding scale to start, to get the coughing under control. When it was controlled, he took me off. This didn’t last long and I started coughing again. So went on a steady 10 for awhile. Then while he was vacation, had an attack of coughing that wouldn’t stop. So, my family doc put me on 20mg for a week and that helped. After my visit this morning, my lung doc is putting me a daily dose of 5 to see what happens. May go back to 10 if things flare up again.

      I haven’t had  any side effects so far. The doc said that prednisone does effect your bones and makes them brittle. So I am getting a bone density test to see where I stand on that. Will find out later.

      That is all I can say about this drug. It does seem to help. He wanted me to start on either Orev or Esbriet and I told him no. I have read about to many side effects on them.Maybe later as this disease progress may change my mind. I have been doing a lot of research on all the drugs in the pipeline for our illness. There are a lot of them getting funding and some are in the final stage of the trials and are looking for us. Most are showing no side effects like the for mentioned.

      Well, that’s my thoughts for today. You all have a good day and even better Thanksgiving with family.

    • #26229
      Regina Bolyard
      Participant

      I have IPF. I was fairly stable until 7 weeks ago when there was a fire in my building. I have been on prednisone 3 times since then. Smoke inhalation caused my cough to become very bad. We have tried various doses and titration to wean me off, but so far the coughing comes back as soon as the dose is decreased. I’m hoping this 3rd time is a charm because the side effects are unpleasant.

    • #26233
      Mark Koziol
      Keymaster

      Hello Regina, I’m sorry you had to be exposed to smoke inhalation. What a terrible experience that must have been. I can’t even imagine how that felt but I know it has to one of the worst things that could happen to a person with fibrotic lungs. I’m hoping this third time is a success for you. Hopefully your inflammation is slowly removing itself from your body. Please take care, Mark.

    • #26234
      Mark Koziol
      Keymaster

      Hi Les, thank you for sharing and pointing out the pros and cons of prednisone. I too am on 5 mg a day. This medicine is a contributor to my extension of life because of a lung transplant. It’s also great to hear you are enjoying your gift of life. Take care and congrats, mark

    • #26235
      Mark Koziol
      Keymaster

      Hello Randy, thank you for sharing. I too am monitored for bone density and have to date been given two infusions of reclast, which helps slow down the deterioration of your bones. It sounds like you have an excellent team overseeing your health. Take care, Mark.

    • #26238
      Susan Howitt
      Participant

      Hi Regina

      I was also exposed to severe smoke inhalation when my neighbour cut down a field full of fairly tall Christmas trees, (his business) then set fire to them and went on a break, the fire burnt for three days and covered my house with smoke for the entire time.  Seriously bad effects on me, first of all the cough, then a nasty infection and lung damage, the cough was eventually brought under control by gabapentine, an epilepsy drug, I still cough more than I used to but this is because of the advance of the fibrosis now top and bottom of both lungs.  I do advice you to ask for a scan to see if you have adversely affected by the smoke inhalation.

      Best of luck, hope you don’t have any long lasting effects

    • #26239
      Susan Howitt
      Participant

      Morning Les Viegas

      It is true that women are much more likely to suffer more with the bone weakness effects of taking Prednisone long term, for me so far so good after three years now, started on 2 1/2mgs and am up to 10mg per day and more on a flare up, I have absolutely no side effects from taking the drug, even when on high doses during a flare up. As I hate cows or goats milk, I drink almond milk for the calcium and take extra strength calcium tablets to help keep as much bone density as I can, so far so good.

      I also refused Orfev, Esbriet and CellCept because of the nasty side effects, for me quality is better than quantity of life left.

    • #26243
      Gaynor
      Participant

      I have been taking Prednisone for about 10 years, I have had no apparent side effects. I do take Adcal which does help my bone density and I have had that tested too. I do believe that this drug has extended my life, I have Sjogrens Syndrome and the IPF is associated with that. As I get older, I am slowing down, my breathing is getting a bit more difficult, but I know that if it does get worse I can increase the dosage – I am on 10mg per day. I did try reducing it to 5mg but it had to be increased.

      I appreciate being able to read other people’s experiences – thank you. I do not have anyone around here who have the same problems, especially now we have rather strict restrictions due to COVID 19.

    • #26244
      Susan Howitt
      Participant

      My daughter is undergoing tests for Sjogrens syndrome too, feel so guilty that I have probably given her immune problems, (I have Systemic Scleroderma along with industrial provoked fibrosis and my own fault Emphysema) she is only 54 and suffering already and beginning to cough, hate the fact that she is having to look after me and knows what she is probably having to go through. sincerely hope that some thing can be done for her.  I was diagnosed far too late for much to be done for me.

    • #26252
      Rene Hakkenberg
      Participant

      I have IPF, am on Ofev and take 10 mg prednisone simply to stop weight loss and to hopefully get my appetite back and gain some pounds back. Can anyone tell me how long you have to take prednisone until it starts to improve your appetite? Thank you.

    • #26258
      Mark Koziol
      Keymaster

      Hi Rene, the side affects of prednisone vary for each person. Some say they have a ravenous appetite but my from my own experience I can say it has not affected me in that manner. If you haven’t done so already, ask your physician for a referral to a nutritionist. They will be able to offer suggestions on a nutritious way to add pounds. Take care, Mark.

    • #26260
      Susan Howitt
      Participant

      I am on 10mgs and ever since I started on Prednisone I could eat a scabby dog, been on it for 3 years and only

      just started to lose weight.

    • #26274
      Ron
      Participant

      reply to Patricia Meadows:

      Treatment with Retuximab and Prednisone

      I was diagnosed with IPF in 2007 and its progress is very slow. Prednisone has never been part of the IPF treatment plan for me. I do not have the cough yet and my oximeter readings are consistently in the mid or high 90%.

      However, you and I have had similar heavy doses of prednisone and Retuximab infusions. In my case, these drugs were ordered by my nephrologist to treat a kidney condition called renal vasculitis two years ago. The use of prednisone was cleared with my pulmonologist, who said that it “might even help” my IPF.

      We share the experience with several symptoms. Perhaps the list below can give you some sense of which side effects are caused by either one of the drugs or the combination of the two.

      Here is a list of side-effects you mentioned. I commented on whether we both experienced them. That might help identify those effects that were caused by the two drugs independently or in combination.

      weight gain – I did not experience weight gain

      weight loss – I did not experience weight loss

      hair on face – yes, however, I am male. I experienced a thicker beard

      hair on my hands – yes, the hair on top of my hands grew faster, much thicker

      difficulty sleeping – I did not experience difficulty sleeping

      heartburn – I did not experience any change. This was a pre-existing condition

      thinning hair – I had moderate hair loss on top and down to the crown. It combed out.

      unsteadiness – I did not experience unsteadiness

      ringing in ears – I did not experience any change. This was a pre-existing condition

      loss of sense of taste – My sense of taste and smell were severely impacted.

      impulse control – I did not experience a lack of impulse control

      You also mentioned becoming hyper and “wired”. I experienced that years ago when I had another regimen of prednisone for another type of vasculitis not related to the more recent renal failure. I did not experience feeling wired this time (in 2018). My dosage started at 50MG and tapered to 2.5MG over 6 months.

      Another effect I experienced was the tendency for small scrapes or cuts to become infected. I attribute this to both of those drugs. They both are said to depress our immune systems. In fact, my red blood cell count (RBC) was very low. My treatments began and ended in 2018 so I have regained normal natural immunity to infections with RBC in the normal range.

      I lost most of my sense of smell, and along with that, my sense of taste. I never regained them.

      I will go so far as to say I think you can count on regaining your hair, more normal facial hair, and on losing that “wired” feeling as you taper to low levels or no prednisone.

      There are finally several therapies going through clinical trials. It takes so much time it is maddening but we can only hope and pray a cure is among them. Meanwhile, I continue with the green tea extract which so far appears to be improving my condition.

      I wish you well. Everyone’s journey with PF or IPF is uniquely theirs.  I hope yours will be an easy journey until a cure or better treatments are available.

    • #26276
      Taleena Koch
      Participant

      After nearly 2 years on prednisone I gained 100 pounds (due to extreme hunger and never feeling full) plus increased cortisol production, extreme irritability, shakes (and I already have a tremor so it got markedly worse), and fortunately no bone density loss (I had a DexaScan to check bone density) and no diabetes (checked for that with blood testing).  I also got the round “moon face.”  Once I was able to stop the prednisone (which took some time to wean down) the moon face started to go away.  The weight gain was difficult to get rid of.  I dropped the first 50 pounds pretty quick just by not drinking soda and not eating after dinner.  The last 50 pounds has never left.  Good luck if you have to be on prednisone.  Talk to the doc and pharmacist about side effects and how to manage them.

    • #26277
      Susan Howitt
      Participant

      You must have been on a pretty high dose all that time to get the moon face and put on so much weight.  High doses are usually short term because of a flare up and then slowly weaned down to an acceptable level of anything from 2 1/2 to 10 mgs if needed on a permanent basis.  I have no side effects on 10mg per day other than hunger which I control by eating little and often.

      Take care   regards Sue

    • #26280
      Taleena Koch
      Participant

      Thank you Sue.  Yes, I was on (what I consider) a fairly high dose.  If memory serves me, around 20-40 mgs at any given time.  At the time, I had no idea about the side effect of hunger.  I didn’t realize for a very long time that I was eating so much due to this medication.  I am a foodie anyway, so it didn’t seem odd to me – until we went out to dinner one night at the Outback and I had a salad, bread, a 20 oz steak and a baked potato and was still hungry.  That night I started researching why I could be so hungry.  Once I realized it was the prednisone, I ignored my hunger (that was hard to do).  Once off of it, I realized that the extreme hunger went away.  I have been on it a few times over the years for short courses and have done fine.  But boy, long term was a nightmare.  My mom was on it for quite a long time as well – at fairly high doses – and also gained weight and had the moon face.  She was finally weaned down to a maintenance dose of 5 mgs per day and did a lot better with her eating.  It’s a great drug for what it is needed to do (reducing inflammation) but a crazy drug for it’s side effects.  I am glad you are not having problems with the side effects and are able to control the hunger.

    • #26281
      Susan Howitt
      Participant

      Hi Taleena (lovely name by the way)

      I read that far too many ordinary doctors put people on Prednisone at high doses and don’t take them off, this was my case as well, 40 mgs,  but as I hate taking chemicals (the  breathed in  ones caused my lungs diseases) I was quick to wean down when the inflammation calmed down and the pulmonologist confirmed that I was right. Hehe I could easily eat the salad, baked potato, 20 oz steak and really not feel too full, ooh mouth watering at the thought, would leave out the bread though. I love food too and over the years have gained a bit of weight from my very skinny UK size 8 after 2 kids and I am fairly tall, to getting fairly hefty after quitting smoking 32 years ago, put on a fair bit in a year but not much since.  Starting to lose a little weight, don’t know if it is my efforts or the diseases, sadly the latter I think, not a lot written about the effects of CPFE.

      Keep up the good fight     Sue

      Love your dog by the way Husky? Samoyed?

    • #26301
      Patricia Meadows
      Participant

      Hi Ron.

      Funny you mentioned scrapes and cuts becoming infected.  I haven’t had any infections, BUT I’ve found that wounds heal much more slowly in the last seven years, including the last three since I’ve been off all meds.

      I love dairy products.  In addition to drinking lots of milk, eating cheese (and taking a calcium supplement while I was on Prednisone), I have been lifting weights for about 34 years and walk a lot so that has kept my bones in good shape.  I’m 65 and am aware that as one ages, bone health is harder to maintain.  With not being able to go to the gym during COVID-19, I’ve been improvising with various things around my home to still do some lifting.  I’m also on hormone replacement therapy and am sure that the estrogen helps my bones.

       

      Like you, Taleena, I had a very strong feeling of hunger which lasted for about three years in my case.  It’s pretty hard to ignore and I sympathize with you and everyone else who has to struggle with significant weight gain.  A friend gained 65 pounds in 9 months when first on Prednisone.  That was 14 years ago.  She ultimately gained over 100 pounds, but the good news is that in the last year she’s lost 30 pounds and is down to 7mg of Prednisone.  Both my friend and I have PF from an auto-immune disease, not idiopathic PF.  Our respirologist here in Calgary doesn’t usually prescribe Prednisone to people with IPF, just PF.

    • #26306
      Rene Hakkenberg
      Participant

      <span style=”color: #000000; font-family: Helvetica; font-size: large;”><span style=”caret-color: #000000;”>Hi Ron, Taleena and Patricia, </span></span>
      <div style=”caret-color: #000000; color: #000000; font-family: Helvetica; font-size: 18px;”></div>
      <div style=”caret-color: #000000; color: #000000; font-family: Helvetica; font-size: 18px;”>For those who miss going to the gym because of covid I can recommend buying a set of TRX belts. I am sure some of you have heard about this or already have it. If not, all you need is the belts and you use your own weight to get your strength and cardio exercise. You can use a hook on the wall or simply throw one end over a door and close the door. Explanations and recommended exercises come with the package. It is also great if you are traveling and want to exercise in your hotel room.</div>
      <div style=”caret-color: #000000; color: #000000; font-family: Helvetica; font-size: 18px;”></div>
      <div style=”caret-color: #000000; color: #000000; font-family: Helvetica; font-size: 18px;”>It sounds funny to me that people are complaining about weight gain due to the use of prednisone. I have lost a lot of weight due to the IPF meds and am now taking prednisone to gain some weight, so far without any success. I’ll trade you some of your extra pounds.</div>
      <div style=”caret-color: #000000; color: #000000; font-family: Helvetica; font-size: 18px;”></div>
      <div style=”caret-color: #000000; color: #000000; font-family: Helvetica; font-size: 18px;”></div>

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