verywellhealth.com/steroid-...
A huge long description of all the problems with steroids.
It was not till I saw specialists like Endocrinologist AND Rheumatologist that I was made more aware of the concerns. My PCP loves steroids., like just take more insulin, how about 50% more, and then struggle for months with higher blood pressures and higher glucoses. It took 6 months for the appointment with rheumatology, that is a long time to wait.
This is why we advocate a gentle taper down ( outlined in FAQs) so that we can achieve the lowest possible dose that alleviate symptoms. There are mitigating precautions and remedies for specific side effects such as bone protecting drugs like Alendronic Acid. Following 8 years of steroids I take blood pressure medication and am monitored for diabetes 2. I also have thorough eye exams on a regular basis. Insomnia and fatigue is something I manage with naps and pacing my activities. No other drug alleviates the symptoms of PMR/GCA. Actemra is an effective steroid sparer - effective in some patients. I sometimes need to remind myself that I could barely walk and had no strength and lots of pain at the outset. I have lived a relatively normal life with blips along the way. We are fortunate that our diseases do eventually burn out. This forum is a good resource for discussing and seeking help for steroid side effects.
Agree with you, Sheffield Jane. It is easy to forget just how debilitating and painful PMR was at the outset, before diagnosis. I remember certain things now, like being unable to bend my knees, my sit bone pain (which I still have from time to time), being unable to turn over in bed, being helped to the loo, being helped to dress. Prednisolone gave me my life back in no small measure. I make sure I take the right precautions when it comes to food and supplements.
Sheffield Jane, how do you get on with the Alendronic Acid? Any problems? I haven't taken any bone protecting drugs yet. I'm only a year in. When did you start taking it?
I have bone scans (DEXA) every two years and so far they have only begun to show very slight osteopenia. The first two I was told that I had the bones of a 30 year old. The third was still good .I will admit that the side effects really put me off this drug, in spite of being threatened with a wheelchair at the very beginning by a GP. I have taken Calcium supplements and vitamin D and vit K 2 and a high Calcium diet when I had to stop the Calcium supplements ( they eventually produced almost constant cystitis symptoms ). Weight bearing exercise is needed. I would take Alendronic Acid or similar if I developed signs of significant Osteoporosis next time - after any dental work on the horizon which I do have potentially. DorsetLady took them for 5 years and had no issues at all which I take heart from. Doctors are very keen on them. I hope this helps, I am not a great example of courage. I am 8 years on Prednisalone mostly under 10 mgs.
I take calcium, D, K2, but have to be careful because I have gallstones. I do have a pilates machine which is weight bearing. I try to do it as much as I can, but so many times I can barely get to it once a week. I'm trying to put my health first and do more exercise, besides walking the dog and housework. I also can't overdo it, or I pay dearly. I'm going to look up cystitis symptoms. I think you have great courage. It's a long hard road and you're walking it. (I'd love to be taking less than 10mg) Thanks so much for responding.
As if you have a UTI but there is no infection present. Basically always wanting to pee.
That is horrible! I hate that feeling!!!
As SheffieldJane says, I took AA [but for 4 years not 5] as I fell into the group susceptible to osteoporosis, and like you had GCA so high doses of Pred. Fortunately not an issue with either the drug nor osteoporosis… but that’s not the same for everyone.
Although now off Pred [7 years] and last DEXA scan not showing any signs of osteopenia let alone osteopenia, I still take VitD/Calcium supplement as advised in accompanying report.
Ok, thank you. I'm glad you didn't have any bone damage! That's fantastic and shocking! I feel like I'll be having hip and shoulder replacement surgeries later on from the prednisone, but I sure hope not! Good to know the AA was ok for you. I'll look into it.
Actually I’ve had joint replacements- but due to osteoarthritis- not osteoporosis and not caused by Pred - unfortunately a familial issue. I recovered from all three very well.
Oh, that's interesting. Sorry you had that gene, but I'm relieved personally that the pred didn't cause the issues. Thank you as always for the insight
Unfortunately all medication has side effects.
But with PMR we need prednisolone and most of the side effects can be helped. So we take our steroids and feel so much better as we can nearly carry on with a normal life.
It IS a huge long list - but those are ALL the possible effects. No-one gets all of them and a lucky few, like me, get almost none even after 14 years.
The alternative is no pred and when you have PMR the chances are that there isn't an alternative available to you unless you live in the USA. And the alternatives, as well as being very expensive, are also not yet as tried and tested as pred which has been in use for 60 years and there isn't much to learn about it.
Unmanaged PMR itself causes many of the effects associated with pred, But in addition, that unmanaged inflammation is also storing up problems for the future. And it may progress to GCA - and then the option is stark: very high dose pred or risk total and irreversible loss of vision.
PMR pro, I agree completely. I wouldn't be able to walk or use my arms and I probably would be blind without prednisone. The alternative, Actemra, has been troubling me. I don't think I'm one of the lucky ones who it helps dramatically. And I'm concerned about the side effects. I've been on it over a year and I'm going to trying to go off of it currently. I figure that if all the UK patients survived without Actemra or just a year of it, so can I. I'd rather risk the known risk of prednisone alone, for now. I don't know how it's going to go, but I want to try. And of course continue on my very slow taper--currently at 27.5mg.
We know it’s a long list, but not everyone gets even a small selection of them…. and overall Pred does a lot of good… like saving eyesight.. says one who knows
I'm sure I would have lost my sight, at least on my right side. I also wouldn't be able to walk or use my arms. And would be in total agony.
Quality of life cannot be underestimated. Carefully managed Pred is currently our only option. I was helped by Actemra in that I was able to taper quickly from the high GCA doses to 10 mgs then I began to struggle and had to stop due to painful diverticulitis . It seemed to have stopped working by then at 10 mgs, so back to a very slow taper. I am at 5 mgs now trying unsuccessfully to lower to 4.5mgs.
So true. Quality of life is it. I was able to taper at first, but after a flare, I haven't been able to taper with any speed. I'm afraid I will get diverticulitis or infections, liver problems....... Perhaps it stopped working for me. I'm sure I'll find out in a few days after going without my normal shot last Saturday. It's great you're down to 5 now. I know it's been a long road. Thank you so much for getting back to me.
Long term use of steroids 
LONG TERM EFFECTS OF PRED?
what are long term effects of pmr if I do not take prednisone?
Low dose of Pred long term for GCA
Side effects update 
