The pros and cons of Prednisone

Hello @jlo2252, I'm also grateful for prednisone which got me through 2 flare ups of PMR which has been in remission for over 6 years for the second time. I'm also a member of the thin wrinkly skin club but like you I just try to keep it moisturized with a good lotion. I'm glad to hear that you have been able to navigate through the conditions it always helps to hear about the experience of folks with PMR and related conditions. You mentioned that your rheumatologist wants to get you off of prednisone and start Actemra. There are quite a few discussions and posts by members sharing their experience with Actemra. Here's a link to the discussions and comments if you want to scan through them while you wait for other members to respond - https://connect.mayoclinic.org/search/discussions/?search=actemra%20for%20pmr.

Thank you for sharing, I feel the same way about Pred.

Thanks, John. I do appreciate what the mentors do here in this group. I have been reading my daily Mayo Clinic emails for a couple of months and have found them very helpful. It is nice to know that you are speaking to people who really understand what you are going through. My doctor wants to use the Actemra for me to get off prednisone and I would like that too—so I come here to read about people’s experiences with this drug as I’m nervous about taking anything new, especially when you read about all the horrible side effects! Thanks again for the link, I would like to read more.

I certainly understand how you feel. The real debate about the pros and cons of Prednisone must be separated into "short term" use versus "long term" use. Prednisone is great in the short term so the pros outweigh the cons. Long term use is the opposite I believe --- the cons outweigh the pros.

I can tell a similar story about reactive arthritis ... diagnosed in my early 30's. Sulfasalazine (Azulfidine) was prescribed to me at the time. I also had uveitis to go along with reactive arthritis. My ophthalmologist preferred massive amounts of prednisone so I wouldn't end up being blind. My recurrent flares of reactive arthritis with uveitis were yearly if not twice yearly events for 15-20 years.

To make matters worse, trigeminal neuralgia was also diagnosed a long time ago. It had nothing to do with reactive arthritis. It was neuropathic pain but prednisone worked reasonably well for trigeminal neuralgia too.

I mistakenly thought I could "control my pain" without the help from any doctors as long as I had enough prednisone. I had a massive stockpile of prednisone because my ophthalmologist didn't want me to run out of Prednisone whenever uveitis flared up.

Life was relatively good until PMR was diagnosed when I was 52. I started seeing a rheumatologist. She was sympathetic and said I needed to take prednisone on a "long term basis" instead of “short term prednisone bursts” as I called them, I could always take a high dose of prednisone followed by a fast taper and my reactive arthritis, uveitis and trigeminal neuralgia problems were temporarily solved. After PMR was diagnosed my Prednisone bursts didn't work anymore.

After PMR was diagnosed, it seemed like my life depended on prednisone. So many things happened ... it would be impossible to explain everything. I started showing up in the emergency room and being hospitalized. Prednisone was sometimes blamed but my primary care doctor always said things were "multifactorial."

My rheumatologist also wanted me off Prednisone. I told my rheumatologist that prednisone "protected me" from pain. My rheumatologist knew prednisone was also "putting me at risk" of other things. Those other things might be worse than PMR. My rheumatologist always hoped that my pain could be controlled with something else besides prednisone.

After 35 years, my cumulative dose of Prednisone can only be described as "massive." In my medical records, it says "decades of Prednisone use" at the top. That notation is followed by an extensive list of "other medical problems" which were added after my PMR and subsequent long term Prednisone use.

I have mixed feelings about Prednisone. I wanted to taper off Prednisone after PMR was diagnosed but I didn't know how. There weren't any magic tapering schemes. I was at the stage where I thought prednisone for the rest of my life might be a good idea. My rheumatologist said I was too young and too healthy to take Prednisone for the rest of my life. I felt the opposite --- I felt old, unhealthy and I didn't think I would be alive much longer.

About this time, my rheumatologist suggested Actemra to me if I was willing to try it. I didn’t need any encouragement to take more prednisone but that was advise I got on another forum from people not qualified to give medical advice. They were “professional patients” just like me. Prednisone had already ruled my life for more than 35 years already so I almost turned down Actemra. What is the harm of a few more years of Prednisone? It happened by chance but someone who had an adrenal crisis explained to me the harm.

I’m glad I tried Actemra … I got off prednisone completely two years later. My quality of life has improved immensely. My medication list for my other problems is shrinking as well as my emergency room visits. I haven't needed to be hospitalized since getting off prednisone.

I still have some problems which need to be addressed. However, prednisone isn't putting me at greater risk of anything. I have surgery pending for severe spinal stenosis. Ten years ago, the surgeon said I was a poor surgical risk because of prednisone. Now I can have that surgery whenever I'm ready.

I certainly can relate to what you have gone through with your health journey. When I was diagnosed with Reiters syndrome I had a “textbook case” with a UTI and severe conjunctivitis—my doctor was also concerned I might go blind! They were putting a couple different types of drops in my eyes for pain relief/ I remember it hurt a lot. They also had me on large doses of steroids. They aspirated knee fluid and did all kinds of cultures and determined it was caused by a virus! They told me at the time that the infections would clear up but that the arthritis (which was not rheumatoid but “acted” like rheumatoid arthritis) would last a lifetime. And also that this syndrome was mostly found in young men, and maybe 2% in females! Lucky me!
I’ve had a lifetime of mostly short term use of predisone until PMR. PMR has been long term and I would like to try the Actemra to try and get off it. I have a fair amount of pain in my shoulders, neck and upper arms and my right hip. So I’m very encouraged by your success with Actemra and will probably go on it when I’m done with this current infection. Doctor will not give to me if I have an infection of any kind. I also understand that Actemra carries with it the risk of lowering the effectiveness of the immune system, so I’m hoping this won’t be an issue with me!
Thanks again for your information.

I am now on dexamethasone 3 mg. And at 82 I am not going to worry about long term etc. I feel good and functional and will go down to 2 mg as long as I remain functioning 3 1/2 years with pmr. I am opting for max function. Any views?

@jlo22

My experience with Prednisone combined with any other immunosuppressant medication was characterized by infections. My rheumatologist would stop the other medication because prednisone couldn't be stopped. She worried that my immune system was being suppressed too much whenever an infection occurred. She would have liked to stop prednisone too but prednisone can't be stopped easily when an infection happens.

I have been on Actemra for 5 years. I was able to taper off Prednisone relatively quickly. I currently do a monthly infusion of Actemra. I haven't had any infections except for colds (not Covid) while on Actemra -- nothing that required me to discontinue Actemra.

Five years ago, I started with Actemra injections every 2 weeks. I quickly tapered from 10 mg to 3 mg in about four months. I needed to stay on 3 mg of prednisone when my cortisol level was too low to taper off prednisone. I was at 3 mg of prednisone for six months until my cortisol level improved. Only after my cortisol level improved did an endocrinologist think it was safe for me to discontinue prednisone ... she said tapering wasn't needed at that low of a dose. I went from 3 mg to zero in one week. I was off prednisone for the first time in 13 years after PMR was diagnosed.

Just so you know ... I had a massive flare of panuveitis when I stopped prednisone the first time. My ophthalmologist restarted 60 mg of prednisone. My ophthalmologist talked with my rheumatologist and they decided to stop Actemra. It was thought that Humira would be "optimal" treatment for recurring uveitis.

I was on Humira for about 4 months but I couldn't taper off prednisone. I was stuck on Humira and 15 mg of prednisone because of pain. My endocrinologist said I needed to be off prednisone. My rheumatologist said it was my choice ... continue with Humira and prednisone or restart Actemra. I didn't take long to decide because I liked it when I off prednisone.

My ophthalmologist didn't like my choice and said Actemra wasn't optimal for uveitis. She added that it was just a matter of time until uveitis flared up again.

My rheumatologist said it would be impossible to prevent uveitis from recurring and treat PMR at the same time. My feeling was ... if uveitis happened again then I would do my "short term burst of prednisone" if I needed to. I wanted to restart Actemra because overall, I felt better being off prednisone.

Actemra was restarted but my rheumatologist increased my injections to weekly injections instead of every two weeks. I went from 15 mg of prednisone to zero in two months the second time I tapered off prednisone!

All was well but I did have one more mild uveitis flare. I was back on a small dose of prednisone and Actemra. There were more discussions about what to do next. I switched to a monthly infusion of Actemra so my dose could be adjusted better. I was only on prednisone for a few days.

I have been on a monthly infusion for 2 years. Everything seems well controlled and I haven't had flares of anything since.

I agree with you about wanting to maximize function and accept some long term risk in order to enjoy life in the present. My situation is a little different in that I'm younger (74) and on a lower dose of prednisone ( 6 mg which is about like 1 mg dexamethasone). I have started Kevzara which has possible cancer and other risks. I watch my labs and blood pressure and so far they look good. My rheumatologist says that 5 mg of prednisone and below is significantly safer so I am trying to get there. I'd like to get to 3 mg and wouldn't mind staying there long term if I feel good and am not having side effects. It's a personal decision balancing a lot of factors.

Tough question ... I don't have any views. It is truly a personal decision.

I was taken aback when my rheumatologist said I was "too young" to take Prednisone for the rest of my life. It sounded like age discrimination to me. I was 65 years old at the time. I wondered how old I would need to be for my rheumatologist to think it would be okay to stay on Prednisone for the rest of my life.

I was feeling very old at 65 and I truly didn't think I would live much longer. I was conflicted because people on another forum were saying I shouldn't risk Actemra because of all the potential "serious side effects. " They said staying on Prednisone with "manageable side effects" was better. I questioned how they knew if they had never tried Actemra.

My rheumatologist said I wouldn't know unless I tried Actemra. That made more sense to me.

I don't think I would have tried Actemra if I had been 82. When I was 65, I felt like I was closer to 100 years old. I was already planning on having a serious talk with God about of all the Prednisone I needed to take over my lifetime. I didn't think all the pain was necessary! I was mostly grateful about having Prednisone to take.

I'm almost 70 years old. I feel like a 70 year old person on Actemra.

Hello I am an English male 76 and resident in France, I was diagnosed with PMR 13 months ago under the most amazingly good care of the French health system. . I could not walk and the pain in my shoulders meant difficulty getting in and out of bed, I could not roll over because of shoulders and hip pain. Dressing was difficult, socks and shoes impossible to put on myself.
Diagnosis was confirmed by PET scan with infusion and my immediate successful reaction to 20mg daily Prednisone. I thought I had made a complete recovery in a month or two but then the dreaded flare-ups start. In some ways they were worse than the original problem.

I found comfort sitting in my armchair and on one occasion slept for four nights sitting up in it. Prenisone was increased to 30mg and then down to 25 before returning to 20mg.
I had a bone density scan in which found my bone density had fallen, this is caused by Prednisone depleting the calcium. I am not able to walk very far.
During this year my vision has become affected and regular visits to the Opthamologist has shown a significant increase in occular pressure, she was horrified that I was on 20mg and is endevouring to reduce the pressure with eye drops.
After 12 months my doctor referred me to the Rheumatologist who felt that I was in remission and started the taper 17mg for one week 15mg for the next two etc. While I was there he took Xrays and arranged a CAT scan

He found four fractures in my vertebrae, the worse being in my sacroilliac which is why I can't walk more than a few hundred yards. He is quite clear that this is caused by Prednisone.
The corrective procedure for the calcium depletion will be an injection a day for the next two and a half years!
I have taken other damage to knee cartilage and excruciating PMR groin pain has now become a suspected hernia, I await an ultrasound examination in two weeks time.
The conclusion to this saga is what one of the forum members have already said "PREDNISONE IS NOT ALWAYS YOUR FRIEND" it is a cruel compromise between being crippled, loosing your eyesight, and having a catalogue of damaging side effects.
I could have started the taper earlier but was still in discomfort and feared the return of pain.

My advice to you all is never miss the opportunity to taper down if your medics recommend it.