MemberNovember 25, 2020 at 10:47 am
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.
MemberNovember 25, 2020 at 11:16 am
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.
MemberNovember 25, 2020 at 6:41 pm
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.
MemberNovember 25, 2020 at 7:56 pm
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.
MemberNovember 26, 2020 at 2:42 am
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.
MemberNovember 26, 2020 at 11:52 pm
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.
MemberNovember 27, 2020 at 12:49 am
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.
MemberNovember 27, 2020 at 3:56 am
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
MemberNovember 27, 2020 at 4:38 pm
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.
MemberNovember 27, 2020 at 5:31 pm
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?
MemberDecember 1, 2020 at 10:18 am
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.
MemberDecember 1, 2020 at 3:22 pm
Hi Ron, Taleena and Patricia,
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.
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.
MemberDecember 2, 2020 at 10:39 am
When I first started using Prednisone, my face did become bigger and my appetite increased but fortunately I did not put on weight. My appetite has settled down. But I have heard of others who have had that problem of weight gain. My face does , well to me, look a bit moon faced but I still think taking Prednisone has certainly helped me. My skin is much thinner though and often feel it has affected the condition of my hair but that is minor. But exercise has helped.
MemberDecember 4, 2020 at 9:01 am
I was diagnosed with IPF 5 years and 9 months ago. I’m 79 years old. About a month ago I became out of breath no matter how minor the activity. Recovering was very uncomfortable. I contacted my doctor and he prescribed 30mg of prednisone for two weeks. Within a couple of days I was recovering from being out of breath much faster. I’m now taking 30mg daily on a permanent basis. In addition I don’t become out of breath as quickly as I did before. It sure has helped me
MemberDecember 4, 2020 at 4:11 pm
So glad to hear it has helped you Ed! While it’s side effects can be unpleasant for sure, there seems to be a lot of patients who do well with prednisone. Thanks for sharing!
MemberDecember 8, 2020 at 3:11 pm
I was diagnosed with IPF a year and a half ago (may have had it for at least six months before diagnoses) and was immediately placed on Prednisone with 10-15 mgs. After a year on Prednisone I had 13 vertebrae that compressed. I has Kyphoplasty on all 13 vertebrae but have lost 5.5 inches of height and now my ribcage rests on my pelvic bone and many vertebrae are misaligned causing much pain. Only laying in bed gives me any relief. A new pulmonologist is monitoring my lung progress but I am having a difficult time getting treatment for the side effects of the compressed vertebrae. Pain patches do not work. A Wellness Chiropractor I went to refused to deal with my repaired back. I’m getting another MRI to determine treatment for neck pain that has come on me that my chiropractor has not been able to treat. I’ll keep you posted. Jim
MemberDecember 10, 2020 at 9:34 pm
Thanks so much for writing to us, but so sorry to hear of the struggles you’re having with Prednisone and your back, that sounds awful. Goodluck with the MRI, and please let us know what it reveals if you think of it. I’ll be thinking of you, and hoping this note finds you in a little less pain.
MemberAugust 3, 2021 at 2:41 pm
Prednisone has been my most effective medicine. 40 mg bursts for five days every three weeks have worked best and minimized the side effects. The doctors also have me on 7.5 mg per day in between but I am not sure what that does. Every three week burst peels down another layer of inflammation. My lungs are now significantly healed from that regimine but too much damage from the past has already occurred causing type III PH. My biggest side effect concern was Diabetes which I seriously wanted to avoid and that is why the bursts. I have experienced a side effect when taking it for longer periods before I changed doctors where I had no fear of confrontation and no filter causing some incidents to occur. These incidents are minimal with the bursts and my awareness has helped me control them. I also noticed that the benefits of prednisone subsided after 5-7 days anyway. As Mark says the affects from prednisone and many medications vary with each person. It is notorious on the internet and doctor opinions that dosage under 10 mg and durations 5 days or less have no side affects. I hope this helps in your evaluations. I am a prednisone fan.
MemberAugust 12, 2021 at 2:35 pm
Personally I would not take prednisone for any reason. Or any steroids if I could help it.
MemberOctober 15, 2021 at 4:44 pm
Good afternoon everyone. Just rereading thru all the people who have written in to describe their experience with prednisone and I discovered I had written in back in Nov. 2020. Well, it’s been almost a year now so have a little more experience with this drug. Back in Nov, 2020, I hadn’t been out of the hospital that long. I got into a bad caughing spell and the lung doc put me on the train of prednisone starting really high and working down. Didn’t work so have been on 5mg/day since then. It works unless I have a flare up of caughing then back to 10 or 20mg per day till it stops. He now has me on 5 one day and 10mg the next to see how that goes. As people have noted, is does have side effects. I do have the shakes so I don’t write much any more. I was to get a cat scan to check out my bones because that is the main concern with him. Still haven’t because of the cost.The copay. So far, so good. Well see how the future goes.
MemberOctober 19, 2021 at 10:26 pm
Hi everyone, my rheumatologist has me on 1000mcg of cellcept and a Rituxan infusion every 4 months. When I have a flare up she prescribes a z pack of prednisone tapering off in 5 days. When I do these I have issues sleeping, and shakiness. After a couple of weeks of being off of the prednisone I go back to what’s normal for me. I have PF caused by RA. I was diagnosed in March of this year so my battle is young. Thank you all so much for sharing your situations. Us newbies learn so much from you all. Stay well my friends!
MemberNovember 5, 2021 at 11:15 am
Have any of you who have taken prednisone (for any duration, dose or method) shown improvement on your PFTs in any of the measures? Thank you for sharing your experiences. I have so much regard for all of you!
MemberNovember 5, 2021 at 5:22 pm
My PFT’s have improved while on prednisone. I go in December for more PFTs. I’ll let you know now that my dose has been lowered.
MemberNovember 6, 2021 at 6:24 am
Incredible!! Predisone has made my lung disfunction basically clear up. Able to breath normal! No more hard coughing hacking phlegm etc. Just amazing. On 20 mgs each day. Need new function test blowing plus CT scan to see if the grey matter has cleared up or not. My oximeter reads 95 or higher. The only thing I am frustrated about is my pulmonologist should have put me on Prednisone months ago.
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