The pros and cons of Prednisone

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.

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.

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.

Hi Everyone.
I recently connected to this site. I'm a 71 y/o female & I was diagnosed with PMR in Oct. of 23, 7 mos. after rotator cuff surgery. Was my pmr caused by the stress of surgery?? who knows?? I couldn't believe how stiff my hips & shoulders became.
I was started on 50mg of prednisone and was able to taper to 30 mg pretty quickly and am down to 5mg now and have only occasional pain & stiffness in my non surgical shoulder. Thank goodness my primary care physicians assistant knew immediately I had PMR. I'm presently seeing a rheumatologist every 3-4 months for lab work. My labs, crp & esr, have improved significantly on prednisone.
I've remained active, going to yoga and tai chi, which I think have really helped me physically & mentally. I also play tennis when I can. Some people say an anti inflammatory diet helps. Can't say that for sure, but I've tried to eliminate most sugar.
I HATE being on prednisone and will continue to taper. I'd love to just stop cold turkey, but that is not smart.
It's definitely a slow journey but staying positive helps! My mantra is " This too shall pass!" I wish the same for everyone with this diagnosis. Hang tough!

Hello @judygref, Welcome to Connect. I love the can do attitude! I think we all hated being on prednisone but oh that relief when it works. Slow and easy definitely helps with the tapering, at least for me anyway. My rheumatologist had me keep a daily log of my pain when I got up in the morning along with my dose for the day. When it came time for me to taper, he had me listen to my body. If my pain was significant (a 2 or above on my scale of 1 to 10), then we went a little longer on the same dose or bumped it up half of the last taper down to see if that controlled the pain. I also found that if I overdid any activity that could cause a flare up.

Do you keep a daily log?

So after reading all your posts,
my own conclusion is that prednisone is both a blessing and a curse! It does have some not so good long term side effects, which in my mind don’t look as bad as the potential side effects as some of the other biologics and anti-inflammatories mentioned!