-
The IPF Patient's Experience with Prednisone
-
Second CT scan last week, my last was in May this year, not sure what to make of it, no progression in the Fibrosis but found brochectasies in both lungs, plus something else I have not managed to translate at all but don’t think it is very significant, the growths I have mostly seem to have partly calcified, good, but one is growing at the rate of 1mm per month and in the entrance from my trachea to my right lung, I can definitely notice it. Not believed to be cancerous. All in all not too bad an outcome. Trying to walk the dogs more now the evenings are cooler, even going UP the mountain when I feel good. Still too dizzy a lot of the time though.
-
Hi Susan,
Thanks for getting in touch with us and I hope you had a nice weekend!
Glad you’ve been able to taper down on the prednisone, but certainly wish that was without symptoms for you. I can imagine that is quite frustrating. Did your pulmonologist explain why the dizziness might be happening, or other side effects? Sometimes it just takes some time for your body to adjust. I’m also glad the weather is starting to cool off for you, at least by nighttime. That is what it is like here as well, and it certainly brings me some relief so I know how that feels. Soon enough it will be cooler all around, hang in there 🙂
Do you know when you’ll have an update on whether or not you can take the Esbriet?
I hope your doctor interprets this recent finding for you, the brochectasies, that is their job and it shouldn’t be up to you to figure out or translate. So sorry if this hasn’t been your experience, it should be something your doctor is doing.
Thanks for writing and I hope you continue to feel as well as possible Susan.
Kind regards,
Charlene.
-
-
Hi Charlene,
Always been dizzy since my last exacerbation, don’t know if it is the tablets or not and have not thought to ask, such a minor inconvenience compared to the other things I have. Not pulmonologist fault re the bronchectasies I had the scan after I saw him and am not due for a re visit until the 21st of November. I go to other doctors a little as possible !! My daughters turn lately, looks like she may have Multiple Sclerosis and Reynauds disease, feel guilty that I many have passed on the tendencies for auto immunes, got to make appointments for her tomorrow, she is not fluent in French yet to be able to do the telephone, is OK until they ask questions. Proud of her she managed the doc ok today, she had used Google translate and written all the symptoms down, she is going for multiple blood tests tomorrow. Bless the doctor she has written that my daughter is not a hypochondriac and like me does NOT frequent the surgery, but she has had two operations over the last two years.
-
Good Morning Susan,
Glad to hear back from you, although so sorry to hear of these unpleasant symptoms you’re experiencing! I suppose in the “big scheme” of things, nausea and dizziness is unpleasant but not terrible. Hopefully you can mention it to your doctor in November if you feel that would be important for you. Are you to do anything different for the bronchectaises, or just monitor it for now?
Sending best wishes to your daughter for a positive appointment. Hope her symptoms subside and at least you get some answers. Will be thinking of you both!
Regards,
Charlene.
-
-
Not doing anything at the moment for any of my diseases all irreversible and progressive, except being on a very low dose of prednisolone 1/2 tab of 5mgs, works for me as hardly any coughing. I am being monitored by my pulmonologist and if I notice anything different I am to call him or if not serious go to my doctor.
-
Hi Susan,
Glad to hear such a small dose of prednisone is effective in relieving symptoms for you! Higher doses long-term can be so unpleasant, so I’m glad what you’re using works. Hope you continue to feel well.
Kind regards,
Charlene.
-
-
just a message from my lung specialist he does not prescribe prednisone because of the many adverse dangers of its use. Before starting prednisone I would suggest that you get a second opinion.
Dave Collard from Ottawa Canada
[email protected]-
Hi David
I am on such a tiny dose it can’t have much ill effect, and quite frankly I am doomed anyway, 4 progressive fibrotic diseases attacking my lungs is not conducive to a long life. I would rather risk it than go back to how I was (I feel almost normal atm) and there is nothing else I can take if I have another exacerbation so it Prednisolone or death and I know which I will take, sorry I think your lung specialist is incorrect, I agree it should not be taken long term in high doses but as quick high dose rescue during a exacerbation it is a life saver then wean back off again.
-
Hi David,
Thanks for getting in touch and sharing your doctors opinion regarding prednisone. It’s so interesting to me how so many specialists differ on their uses of prednisone! I do agree though, that everyone should get a second opinion about being on this drug long-term due to the dangers and unpleasant side effects of the drug. Thanks again for sharing!
Charlene.
-
-
I have never heard of a pulmonary doctor not prescribing Prednisone.
That being said, while I know people who get benefits from taking it, I have not seen big benefits other than the fat fairy making herself at home in my body.So when possible, I refuse to take it. But that is me.
Given all that you are dealing with Susan, I completely understand why you want to stay on it.
-
Hi Paula,
Thanks for your reply, and I hope you’re doing well. How is the OFEV going for you, any relief in the unpleasant side effects you were experiencing?
Its so interesting to me, as I’d said to David above, how different opinions vary between doctors regarding prednisone use. Whenever I’m seen in the ER, the doctor is quick to prescribe it as soon as I mention I have a lung condition, but my primary pulmonologist is more reluctant to give it. However, if I asked (I wouldn’t!) I’m sure he would prescribe it without any questions. Hopefully you don’t have to go on it again 🙂
Cheers,
Charlene.
-
-
I LOVE this picture Charlene. Going to pass it along to my friends who know me mainly by my nickname which is Squirrel
https://pulmonaryfibrosisnews.com/forums/wp-content/uploads/2018/04/prednisone-286×300.png
-
Me too Paula! I think it is pretty funny, and hope it brightened your day as well and gave you a laugh 🙂
Charlene.-
I shared it with my friends. Did I ever mention my nick name is Squirrel?
As for Prednisone, if I can avoid it I will. I see my pulmonary guy tomorrow. Bringing in my recordings of my O2 levels. Should be interesting. Took a short walk yesterday, put on the meter as soon as I walked into the living room and I scored a 75. 3 minutes later it was up to 89.
SOB is horrible as is the coughing. My eating habits are way down.
We shall see.
Hope all is going well on your end
-
Hi Paula,
I’m so glad you shared it with your friends, did they have a good laugh? Laughter is the best medicine I think! I believe you did share your nickname with me, so this picture is perfect 🙂
Curious to hear how your doctor’s appointment went when you have a moment, hopefully it went as well as possible for you! Sorry you’re still struggling with SOB and the cough, what a pain in the neck. Hang in there Paula, and thanks for being such a strong advocate and support to so many of us on the forums.
Regards,
Charlene.
-
-
-
just a quick follow up to my post on what my lung specialist is saying about prednisone — his concern with prednisone is the impact that it has on other organs and parts of the body; and that more IPF patients have died from prednisone than those that have not taken prednisone. We all know that IPS is a critical disease without a cure and that what remaining life we have should be as pain free and long as possible. If you believe that prednisone will assist with reducing your pain and increasing your quality of life — then go for it.
cheers,
Dave-
I am on such a tiny dose 1/2 tablet of 5mg, without it I cough day and night, I will only go higher if I have another exacerbation and that only temporarily. I have CPFE + SS and the PF is not idiopathic so don’t know if that makes any difference. My pulmonologist says that prednisolone is often given in too higher a dose by GPs I am not a candidate for Esbriet as I only have one kidney so I will go for quality rather than quantity and quite frankly I feel ok at the moment
-
So glad the dose you’re on is working for you Susan!
I hope you continue to have many more days of feeling okay as well 🙂Charlene.
-
-
Hi David,
Thanks for clarifying that – I’ve heard that longterm prednisone use can be really difficult on our other organs as well. When he mentioned that more patients with IPF have died from using prednisone, is that because of the immune-compromisation that it causes and patients fall ill/get sick, or is it because of other organ failure? I agree with you completely as well re: patients doing whatever they need to / can to maintain a long and pain-free life after being diagnosed with IPF. I appreciate all your posts!
Regards,
Charlene.
-
-
Hi everyone. I was reading some news items elsewhere which said that prednisone is generally not used in IPF patients. My wife however is now taking 35 mg prednisone together with Pirfenidone 800 mg twice daily and is on Oxygen 24×7. We tried to titrations prednisone to 30 mg with the intention of increasing Pirfenidone to 800 mg three times a day but she was not comfortable with that. She felt that by reducing prednisone , her breathlessness increased. She now continues on on prednisone 35 mg and Pirfenidone 800 mg twice. She is stable though but side effects of prednisone are evident viz puffiness around eyes, face swelling, mood swings and fatigue. Most of the time she sleeps. Her food intake is ok. Her Oxygen saturation drops even with slightest movement or exertion even when the Oxygen is set at 6-7 litres per minute. So most of the time she rests in bed with oxygen set at 4-5 litres per minute.
-
Hi Sarv,
Thanks so much for writing.
I can’t speak with certainty as to whether or not prednisone is used for IPF as I don’t have a medical degree, but I can share that I’ve been put on it after an acute exacerbation, or even sometimes when I have a viral infection. I always titrate off it though, and am not on it regularly. It’s worth asking her physician about though, if you have concerns about being on it permanently (I know the side effects can be quite terrible).
Does anyone else have experience with IPF and permanently being on prednisone?
-
I have CPFE, PF + and have been on ever increasing doses of Prednisone for the past three years, absolutely no side effects what so ever other than at the beginning where I could have eaten the neighbourhoods scabby dogs. Go up to 60 or 80mgs if I have an exacerbation, had 2 in the last 2 months, and taper back down to my normal 20mgs, very very slowly over a couple of weeks then I have no increase in coughing nor breathlessness, think I will be put on a higher dose yet again when I see the pulmonologist on Monday. I now cannot make any effort without being seriously hypoxic even with my machine on max, move 100ms and plunge to 79 blood oxygen even 75 on a bad day ( humid, windy or hot), eyesight goes fuzzy and I am seriously dizzy, legs turn to jelly. Hating this.
-
Hi Susan,
Thanks so much for writing – nice to hear from you! However, so sorry to hear of your disease worsening and the struggles of hypoxia due to coughing. Goodluck on Monday, I hope if they increase your Prednisone that it helps alleviate some of your symptoms. I know it can be a tough drug, but so happy to hear you don’t have many side effects from it, thats great! I will be thinking of you on Monday, I have my PFTs as well. Take care!
Char. -
Hi Charlene,
I was diagnosed with IPF in March 2015. In February I asked my doctor if I could take prednisone to help with my lack of energy. Im 78 years old. He prescribed 20mg for two weeks and 10mg for two weeks and it made a huge difference in the way I felt. I am now on 10mg going forward. The only side effect I’ve experienced is a small gain in weight. I gained 1 & 1/2 pounds. I guess I just got lucky.
Ed
-
Hi Ed,
Thanks so much for sharing, and I am thrilled to hear the low-dose of Prednisone your doctor prescribed has been helpful in how you feel. That is great to know! Will you remain on the 10mg dose going forward then permanently? If there are very little side effects and it is beneficial, then I suppose you probably would. I hope this continues to benefit you, thanks for sharing your experience with Prednisone with us!
Sincerely,
Char. -
Hi Charlene hope you PFT’s went well.
Mine as expected showed a sharp decline in Dclo’s probably caused by neighbour deciding to cut down a huge acreage of Christmas trees just above me and then set fire to them and went on his hols, my house disappeared under a thick smoke cloud and the smoke penetrated everywhere inside. Had to dose myself because of lock down, no way was I going to go to hospital, couple of weeks later had serious pollen clouds from the pine trees, that really knocked me for 6 and had to go to hospital for treatment, came out the same day feeling a lot better and on antibiotics ++++++ felt very French as they, in my opinion; take far too much medication. Wish I could post a picture of the pollen cloud, it was very impressive.
Prednisone upped by 5mgs but proff said I can go back down if I don’t feel it is helping.
-
Hi Charlene
I will remain on 10mg of prednisone going forward on permeant basis.
Kindest regards,
Ed
-
Thanks for your reply Ed, I hope it continues to help!
Take good care, and keep in touch 🙂
Charlene. -
Hi Charlene,
I was diagnosed with PF in February 2017. I have been on prednisone ever since.First I was on just prednisone then a combo of prednisone and Cell Cept. I had a bad reaction from the Cell Cept so stopped taking it after 6 mos. I started prednisone at 40 mg daily and dropped to 20 in the first 6 months. After dropping the Cell Cept they upped it to 40mg for a while and then gradually got me to 20mg. They tried twice to get me to 15mg but both times I coughed so much they took me back up to 20 mg. I’ve had 3 exacerbations and Whete they take me up to 60 mg and then gradually back down to 20mg. I’m in the last stages of one now and currently takes my 25. The prednisone is the only thing that helps. Now the side effects. .Originally I gained 80 lbs in the first 1 1/2 years. I wanted to eat everything. I had just lost over 100 pounds on Weight watchers a few months before being diagnosed. My biggest fear in taking the steroid was that I would gain it all back. Well I almost did. I am now down to with in 19 pounds of my pre prednisone weight and it’s been a huge battle. I don’t sleep well. I have bruises everywhere and my skin is like crepe paper.
About a year ago I started taking the Wei Institute Chinese Herbs and I’m doing much better now. Sorry this is so long, but so is the journey. -
Hi Karen
I think you have done amazingly well to get the weight off, and be on predisone, well done you. I am so lucky, on permanent prednisone since May 2018, even though I wanted to eat a scabby dog I didn’t put on any more than 2kgs and another 2kgs over lockdown, struggling to move it even the slightest. I gather that insomnia is one of the side effects or our diseases. I am also starting to bruise, only found that out the other day when the proff asked how I got all the bruises on my back, no idea I even had them, few on my thighs yes but I thought they were just down to my friends exuberant Labrador rather than a problem. There is a wonderful product out here for the skin, my doctor prescribed it for me, based on paraffin, glycerine and Vaseline, really cheap and works wonders for me, crepey and dry skin.
Really must try and get hold of the Chinese herbs as have heard and read that they work well for the likes of us.
I have also had 2 exacerbations over the last couple of months, trying to get back down to the 10mgs that I was on and so far failing, have got down to 15mgs and the professor says I can stay at that but if I want to and can go to the 10mgs it is OK by him, like you I cough very badly too.
-
Hi Susan,
Thanks so much for writing and the well wishes about my PFTs. They’re done – I dislike them with a passion, and will wait for my doctor to call regarding the results. Oh gosh, so sorry to hear about the smoke from your neighbours burning – that is awful! Sounds like some serious environmental factors are being bothersome to you, hope those end quickly and that the antibiotics leave you feeling better.
Take care,
Charlene. -
Hi Karen,
Thanks so much for writing and sharing your experience with us about your prednisone use. It sounds like the 20mg is the ideal dose for you to control the coughing? Glad you’re able to titrate down from those higher numbers after an acute exacerbation, that must have been scary. Weight gain is such a terrible side effect of Prednisone, isn’t it? I also believe it makes me so grumpy/grouchy. Glad to hear the Wei products are effective for you!
Take care and keep in touch.
Charlene. -
Hi Charlene,
I was diagnosed with IPF in October 2014 and tried Esbriet not long after, but was unable to tolerate side effects of nausea and diarrhea. My pulmonologist suggested reducing the dosage, but side effects remained. I decided to stop taking Esbriet because quality of life was more important to me than duration of life.
My IPF progress based on PFTs had been quite slow until about a year ago when numbers worsened. In response my pulmonologist started me on 10mg of prednisone. We believe prednisone has been helpful, but about once a month during this past year symptoms (coughing – both dry and productive, wheezing, and labored breathing) increased rapidly. During those increases of symptoms I was put on a burst of prednisone (40mg for 3 days, 30mg for 3 days, 20mg for 3 days) before returning to my normal 10mg daily. The burst and tapering back worked every time I had an episode.
I have not had an increase in symptoms for the last two months, but I do have side effects from the 12-14 months on prednisone: (1) weight gain (more than just an increase in appetite), (2) blurred vision, and (3) sleep disturbance. I plan on asking my pulmonologist in mid-August if he feels there is a medicine available that would give me the benefits of prednisone, but without the side effects.
Who has found a substitute for prednisone? Thanks much!
-
Hi Merle,
Thanks so much for writing and sharing with us your experience of using prednisone. I have no doubt that it’ll help others! I’m glad it seems to help, but I know the side effects can be terrible – for me, it is the increased appetite and being grumpy that is the worst, “roid rage” I call it. Regarding the anti-fibrotic, did your doctor ever recommend Ofev? I know the side effects of both drugs can be really tough, so I’d understand not wanting to try taking another one, especially if prednisone is helpful.
I’m not too familiar (or qualified) to recommend another drug similar to prednisone but without the side effects. However, I’d be interested in hearing what your doctor says about that question when you speak with him. If you think about it, do you mind reporting back on his thoughts?
Charlene.
-
Hi Merle
Love your name by the way.
Is your blurred vision permanent? I ask, because mine seems to be when my blood oxygen sats drop too low, for example when out walking, I have a back pack oxygen recuperateur ( sorry can’t think of the English word) on 6lts, I quite suddenly hit a wall so to speak, after anything from 100ms to a km, seems to depend on the weather too, blurred vision, *jelly* legs, chest pain and gasping, stop, check my sats and am below 80, wait for them to come back up to 91, about 3 minutes, and vision etc returns to normal.
Insomnia so I have read is to be expected with lung diseases. I can go for a couple of weeks sleeping well and then have really disturbed sleep patterns. for a while
I, like you regard quality of life is better than quantity
Sue
-
Hi Charlene,
I will definitely report back after I visit with my pulmonologist on August 18.
Merle
Log in to reply.