Hi all, I’m having a conundrum that some of you may be able to help me out with.
Have any of you experienced a tolerance to prednisone?
I took it at a (supposedly) low-level for 8 months, finishing 1 year ago at therapeutic levels, and taking a further 4 months to “taper” (withdraw).
Before I withdrew properly, I could do a burst of 15mg for 3 days and feel invincible (actually normal like before) - amazing on my fatigue, as well as swelling and pain. I couldn’t take them after 2pm, or wouldn’t be able to sleep at night. By day 3, even the full dose in the morning would keep me from getting a decent nights sleep.
My withdrawal from prednisone co-incided with the onset of some symtoms consistent with crohns.
Now I can take 25mg at 4pm and drop off watching tv at 7.30pm (after having numerous daytime naps). It seems to make my stomach significantly better, does little for my joints, and doesn’t even keep me awake. Can anyone provide feedback on whether you can build a tolerance to prednisone after a longer term treatment and then some bursts every two months or so.
The alternative explanation is that the crohns consumes it all - I don’t have enough severity for formal diagnosis (GI says “if its crohns it’s the mildest case I’ve seen - perhaps it’s an overlap disease”) - the normal minimum prednisone dose in a crohns flare is 60mg per day.
I’m just trying to understand whether we can build a tolerance, and if its likely I’ve done that in this timeframe, or if its just the character of my other (possible) disease.
Thanks for your comments (and any analogies with SLE welcomed, given its another higher steroid treatment situation).
Hi Jen, that is a very good question. My rheumy put me on a daily dose of 10mg of prednisone last January. A few months ago during a bout of pneumonia my doctor increased my dosage to 50mg for 3 days, it made a difference. In recent weeks I have become quite ill again starting off with pneumonia and leading to other complications. My doctor upped my prednisone to 50mg for 5 days, this time it didn't help. I was then given that dosage through IV while in the hospital, still didn't work as well as it previously had. I am tapering off and am at 20mg for another couple days then I will be back to my normal dosage of 10mg. It has made a difference for my PsA pain but not for my lungs and breathing. The fatigue is horrible, it takes the good out of me just to walk across the room. Like you, I have to question if I have built up a tolerance to this drug and if so, is there other drugs similar to prednisone that can be used?
Hi My mother and I both have PsA no skin manifestations, but Mum (we are English by the way and about 10 years behind here in availability of medicines) developed a mild form of Crohn’s just like yours about 4-5 years ago. She was treated with a small dose of Prednisone 20 mg as she was in her 80’s and it made her really well,n as high as a kite and unable to sleep. she eventually tailed down to 7.5 mg . When another flare up occurred we noticed that although it worked on the crohn’s OK she never had the high or as much sleep difficulty as the first time around. She got such awfully thin skin with tears on just brushing past a door knob that she weaned herself off completely. Such a pity that the well- being side effect is first time around only!!! Not sure if many doctors are aware of this phenomenon.
I have been on 5mg prednisone for 4 plus years. I also have ulcerative colitis issues. Another possibility is that the Chron's symptoms started after the taper as the prednisone was keeping those issues in check. All these autoimmune diseases have some sort of common thread and many of us have more than one autoimmune disease. Prednisone helps just about all of the autoimmune diseases.
As to the question of developing a tolerance, I have no answer. My dose has been the same for years. I take 10mg for events I don't want miss (like family holiday dinners and visits to friends far away) and then taper back to the 5mg. This was the plan set up by my now retired rheum. She didn't like bursts, I never asked why.
I don't know about tolerance to prednisone but I didn't find it helped with my PsA. It seemed to at first, then the only thing it did was make my hyper, eat and have sleepless nights. As long as I took in early in the day I seemed to be ok.
My son has colitis and I know the prednisone helped him. FYI what helped him the most was control over his diet and probiotics. Now, he takes limited medication, keeps his sugar intake limited and stays away from dairy. I'm sure there's more detail he does i just don't know about but everything he has done has worked for him.
Hi all, thanks so much for your responses - really appreciated. Sounds like this is a common enough response after ceasing long term pred.
Debbie, I think you are right about the the pred keeping the crohns in check - the symptom suspiciously started at around 4mg on the taper as i was coming off it and just kept getting worse. Prior to starting pred, (and having PsA), I’d had “IBS” that came and went, that we put down to me missing a part of my small intestine due to a resection when I was 16…
I’m on Humira now, but have had to go off it, and had just added a bit of pred to give it the hurry up to start working now that I’ve started it again. I don’t think many with IBD can use pred alone in a burst fashion - before the Humira I tried that, and it just knocks the symptoms back for a few days, but on stopping they return quickly so I don’t think there’d be much net medical benefit. I was just being impatient with the Humira.
Fatigue is a primary sypmtom of adrenal insufficiencey along with joint pain et etc. Its assumed that ataper will restore normal adrenal function. It often doesn't. Along with the obvious adrenal exams, one should get a complete kidney and piuitary work up if one has problems. Yes one can develop tolerance, and worse many other drugs take a holiday.
Its hard to imagine there are any doctors left who will prescribe this stuff for anything but a very acute condition or end stage cancer, let alone long term (long term being over seven days) You can only shut your adrenals down so many times before they say no...........By the same token after a long rest, they really don't like to go back to work. Ha any body found it strange a taper takes a year or more after a month or so of use.
This is by far the most dangerous drug out there.
tntlamb, I have a great respect for your wisdom and advice, that said, why are doctors using this drug so frequently and certainly without explaining any of the pitfalls to their patients. Your last sentence, "Has anybody found it strange a taper takes a year or more after a month or so of use". What does that mean and for what dosage are you talking about? If you are talking about weaning off the drug, for me its a 20 day process. Weaning from 50mg down to my original and usual dosage of 10mg per day. 5 days @40mg, 5 days @30mg and 5 days @20mg
It is my understanding, per my rheum, that low doses like 5mg do not shut down your adrenals. Therefore low dose usage is thought to add to the adrenal work and assist with a lessening of inflammation. Higher doses (above 7.5mg) cause the adrenals to stop working and require a taper to try and get them to kick in again.
tntlamb : Do you have any links to support your concept that prednisone is by far the most dangerous drug out there or that a one year taper is required? I have not read this anywhere. Thanks!
This study is well accepted on long term low dose steroid use:
The old notion of a mounts less than 13mg (what the body normally produces) was pretty much abandoned years ago. There are many studies similar to the above. There are even those wh believe lo dose predi use in nearly every case makes symptoms worse.
I guess I wasn't clear. Predi is the most dangerous of the drugs we commonly use for treating PsA. My apologies.
When I have a putr instead of this phone I'll explain better what meant by long taper. Taper also refers to a prescription pack Thats not what I was referring to. Nor was I reffering to the now commonly used burst.
Thank you for the info, the more I read the posts and answers to my questions the more equipped I will be to talk with my rheumy and advocate for myself. I will admit I am pretty green around the ears when it comes to PsA and the medications, but each day I am learning something new. Time for you to get a NEW computer lol.
Interesting. I always worried more about Arava - methotrexate - Imuran in combination or alone. I've been on my prednisone so long I haven't given it much thought. I know I need my Calcium evey day and that I am tardy on getting a Dexa Scan. All these meds are a bit frightening if you read up on them.
My assumption through all this is that I am trading away my tomorrows for better todays. Given the choice, I would rather have a life shortened by the effects of the medications than a longer life without the benefit the medications give me. You make a lot of tough decisions with this disease, it helps to be informed. Thanks tntlamb for the link. I need to do some more research on this.
We are all different, there many reasons why we are prescribed the meds we are. I see these dusussions more as a basis to ask mre questiions......
Lousy todays don't insure better tomoorows, or even a tomorrow..
Tomorrow we will wake up in a motel. We just got a four evacuation notice. For a fire behind us. wh would have thoight that yesterdy? life changes in moment.
You are right Debbie, there are a lot of tough decisions to be made with this disease, which is why as lamb just stated that he sees these types of discussions as a basis to ask him and others questions, he is also right. My doctors have been passive and I have been passive until now. Now I know I have to advocate for me and to do that I need to educate myself as much as possible. Currently I am not able to work or do much of anything, so its time to feed my brain while my body is working to recover from a recent nasty illness.
Thoughts and prayers going out to you and your family and your neighborhood, hope things get under control there and no one gets hurt or suffers damage to their property.
Thanks for the reminder on the fatigue and adrenal insufficiency lamb. I’ve already got an appointment with a doc who specialises in the HPA axis scheduled for October, so it will be interesting to see what he says.
My Rhuemy still firmly believes that 15mg or less is harmless, and my GP just laughs at me and tells me my life is too busy!
The “impatience” with the Humira was with the gastro symptoms though, not pain or fatigue. A normal dose to pull the gastro symptoms up and get remission is 4x injections at once, then 2x injections two weks later. I’ve only got one shot in the fridge, and don’t have a spare $4000 this week - hence trying a bit of pred to see if it will help the Humira work faster, without taking it for more than one or two days.
Debbie, time to go get that Dexa Scan. 8 months averaging 10mg and I now have osteopenia in my spine (I’m 38). There could be other causes, but no other known risk factors, given I’d not had any malabsorption symptoms until after my scan was done.
You might also be interested to know that the hardest part of the taper was from 4mg down to 0. It took nearly 2 months, and I’d prefer give up smoking 5 times over than endure that again. It’s part of the reason I don’t believe even really low doses are harmless.
Having said that though, if the only choice is IBD or steroids, well, like you say, I’d be willing to borrow some tomorrows to have better todays. Luckily I have access to Humira though - its worth researching if you’ve never considered it.
I was originally suppose to start Humira this past March, but my insurance company denied me and said I had to try at least one more DMARD for a minimum of 3 months before they would approve my application. Through a phone conversation with my rheumy we decided to give plaquenil a try along with a continued dose of 10mg of prednisone. I was suppose to see my rheumy two weeks ago but missed my appointment because I was hospitalized. (rheumy is in a different city 1 hour away). I have another appointment to see her September 27th and want to take as much information to that appointment as possible.
Hmm that’s strange. I don’t think a insurance company can legally tell you what medicine to try. I started off with Enbrel, had no issues getting that approved. While I tried various others before I went on Humira, the only issues I had with it was after I received approval. My mail order pharmacy was PITA.
I have been on Enbrel, Humira, Remicade and now Orencia. Enbrel worked well for about a year. Humira never helped. Remicade got me one good year and one ok year. Orencia is just starting to help after 4 months of Sub Q injections. The doc has never played with my prednisone dose. The doc has, however, played with the MTX, Imuran and Arava doses as well as combinations of the medications. While on Remicade the dosage and frequency was changed often as it started to lose its magic.
As I stated, I have no answer to the original question. But having been around the medication block a few times I do see a pattern of medication "magic" wearing off. I know a woman who has been using Enbrel for 10 years and it never lost its magic. She has RA. From what I see some are lucky like that, others are always reaching an endpoint where another medication needs to be used. For my PsA and AS I haven't had that "magic" spot last longet than a year. I'd love to have Orencia get me that magic for a year or more, I'd love to be able to ride my motorcycle one more time. There is also the anticipation of new meds in the pipeline. So we all have some hope. That being said, if we don't advocate for ourselves with our doctors we may not ever hit the magic spot. Knowledge of the disease, knowledge of the medications and the ability to speak up for ourselves is a requirement in my mind. My doctor doesn't manage my care - I have this disease - we manage it together.
Stay safe lamb & family! I hope your granddaughter with autism doesn't have too hard a time with the changes.
I wouldn't call it intolerance but rather bad pills. My Rheumy kept upping the dose, while he worried I showed no side effects. Since I was purchasing them from CVS, I decided to switch to Walgreens. All of a sudden I got all the side effects the dr. was expecting, like chubby cheeks, fine facial hair, etc.
Have you switched pharmacies to see if it makes a differece?