I’ve had an undiagnosed medical issue for 2.5 years. Mainly pain in the neck and head but also into the shoulder and eyes and ears. All on the right side of my body. I finally got some relief about ten days ago when a neurologist prescribed a 6 day pack of methapredlosone. By day 6 my pain was 90% gone. I then had the best 3 days in years. Then it started to fade away. So of course I asked about getting more. I found out that these packs are typically only for maybe two times use. So then I asked if I could just get a script for Prednisone. That doc as well as my primary doctor refuse to write the script saying it’s only for life and death situations. In talking to other people it seems many people take this and for long periods in spite of the known side effects. Does anyone have any insight, experience or opinions on this?
Yeah, we have a poster here who has had severe health problems due to long-term steroid usage for his Crohn’s disease, IIRC.
Just google what can happen from long-term steroid usage. It’s not pretty.
A longtime friend of my family died from long-term cortisone usage back in the 1960s. His doctor had died years earlier, but he was able to keep getting his prescription refilled for years, no questions asked.
You need to find out the cause of your pain. Find a good neurologist and get some MRI’s. Steroids are only a very short-term solution, and will ravage your body if you take it for too long.
I’m a retired pharmacist. While steroids are excellent for treating many diseases, in most cases, they are not intended to be used long-term. You don’t become addicted to them, but your body can come to depend on them, due to disruption of production of certain hormones. Try and find the cause of your mysterious body pain, and get it properly treated.
I got one steroid injection directly into my spinal column and as a result I can stand up straight without pain.
Yea, you do NOT want to be on Prednisone long-term unless there’s no choice, such as my friend with Lupus.
Have you tried anti-inflammatories like Diclofenac (Voltaren)? When we have issues like that, taking 50mg once or twice a day for a few days really helps.
I have increasingly acute sciatica. I have tried stretching, antiinflammatories and analgesics, but I have found that prenisolone is the only medication that relieves the pain.
At the same time I am aware of the danger of side effects of continued use such as reduction of bone density. (I had a Dexa scan to establish my baseline value for this, which was normal for my age.) My doctor is unhappy about my continuing to use prednisolone, and put me on another medication, tapentadol. That isn’t nearly so effective, but I have experimented with reducing the pred to 0.5 of a tablet daily in the mornings and 0.5 of a tapentadol in the aftenoon.
My mother was on steroids for years to keep her myasthenia in check. (That’s an auto-immune disease that would otherwise have killed her.) As others have said, there are lots of nasty side effects from steroid use, including that it shuts down your immune system. Thus, her nasty death by covid. Steroids also thin your skin and connective tissue, weaken your bones and probably lots of other stuff.
it’s possible that using them would be worth it for you, but it seems unlikely. You certainly want to investigate every other option, first.
(I had a steroid injection into my knee. It had been sore for months, and the inflamed tissue kept being re-injured whenever I used the leg. The steroid shrank everything that had been inflamed, and as a result the underlying problem healed. Seven years later, the problem has not recurred. So it’s not like I’m knocking steroid use.)
Prescription strength ones, such as I mentioned?
Tapentadol, as an opiod, and is prescription-only medication – see https://www.healthdirect.gov.au/tapentadol#:~:text=Tapentadol%20is%20an%20opioid%20pain,tapentadol%20can%20cause%20withdrawal%20symptoms . AFAIK, a steroid is an anti-inflammatory.
Before I got Prednisolone, I tried first Panadol Osteo &/or Panamax Co. (The Co stands for codeine.) As a cancer patient, I also have access to Endone (one of the nasty oxycontin family). Endone was only ever a last resort. Even that didn’t do much. Prednisolone is still by far the best for me. So you can see I have tried quite a few.
Of course I would much rather not take drugs, least of all potentially highly injurious &/or addictive ones. My exercise physiologist gave me a program of stretches specifically for me to do at home, which seem to be doing something, either by themselves, or as an adjunct treatment to the Prednisolone/Tapentadol combination.
Negative effects of steroids include weight gain, thinning of your skin, stretch marks, and increased risk of all sorts of infections. Your skin will be more easily damaged/broken and you’re more likely to have that injury infected. In addition to not only catching whatever bug is making the rounds but also getting far sicker from otherwise minor things like colds. Catching the flu or covid is more likely to put you in the hospital or kill you. That’s the short term. More short term effects include sleep disruption and mood changes, in some cases extreme.
A sort of medium term (if by medium term you mean “a couple months”) is an increased risk of glaucoma which means you’ve just acquired a lifetime condition that can eventually leave you blind. Doesn’t always happen, but the risk is there. There are also reports of stomach issues but they seem pretty mild in comparison to some of the other side effects, unless you are also taking non-steroidal anti-inflammatories, in which case your stomach lining can ulcerate.
Another way they can blind you is with cataracts. Those, at least, we can do something about but it involves eye surgery.
Other long term side effects include high blood pressure, heart disease, diabetes, osteoporosis and the resulting bone fractures, including fractures in the spine that leave you hunched over and in chronic pain for the rest of your life. Take them long enough and your bones will become fragile enough you could break a rib by coughing hard.
Over time your body can become dependent on them. Suddenly stopping gets you dizziness, nausea, vomiting, and low blood sugar. This can be severe enough to require you to spend some time in a hospital getting rehydrated and some more steroids into you to stop the adrenal insufficiency.
So, yeah, they’re powerful drugs that do a great job at reducing inflammation (as you the OP have discovered) but they also have great potential for harm as well. A short term use, such as the case with your experience, the likelihood of harm is minimal and they can do a great deal of good. Longer term - meaning just a few weeks or a month - and the damage starts to accumulate.
I have, due to life-threatening food allergies, had to take prednisone for 1-2 weeks on a couple of occasions in my life. Sure, I feel like Wonder Woman! All sorts of little aches and pains go away, the freakin’ allergies go away for once… and then there’s the ravenous hunger, the fluid retention, and the emotional roller coaster (unfortunately, I’m one of the folks who gets significant mood changes). Oh, and the secondary infections. If you’re lucky and they’re bacterial you can take antibiotics but if they’re viral or fungal that’s a lot less fun, and you can have simultaneous infections in all three categories at once if you’re careless! Or just unlucky.
A lot of this depends on dose - after suffering anaphylactic shock I was put on a high dose for a week then tapered off, and the high dose did result in pretty much immediate side effects (including a viral infection). And once I was off the prednisone my moods went back to normal, I stopped being hungry all the damn time, I lost the retained fluid, and once my immune system came back on line it dealt with the infection.
I have also been on a smaller dose a couple times, again due to severe allergic reactions, and “only” had the hunger and fluid retention. And was just a bit more prone to be either irritable or annoyingly happy (not all mood swings are negative).
Steroids are a fantastic hammer for a variety of “nails” - but once you hammer down a nail you don’t keep pounding away with the hammer because then you’ve gone from something constructive to causing damage, and the longer you pound away the more damage you’ll do.
With steroids you want the lowest effective dose for the shortest time possible. I get that you want more of that magic potion that makes you feel so much better than you have in awhile, but your doctors really are being responsible by not renewing that script. You need to try everything else before opting for long term steroid use, because long term steroid use will have negative consequences to one degree or another, in one (or multiple) form or another.
Sounds like you might have what I have–narrowing of the foraminal space at C4-C5 which is where the nerves for your shoulders and neck exit your spinal column. An MRI is in order for sure. I got a cortisone shot in my neck a few months ago (which is also a steroid but less systemic if at all) and it helped a lot. I’m meeting with a neurosurgeon in 3 weeks to explore my options, because you can do more than one shot, but it’s not a long term solution.
Talk to your doctor. There are good reasons why steroids should only be given for short periods and exacerbations when possible since they have a lot of side effects. One might consider seeing a rheumatologist if you have not done so.
Thanks for all the replies. I have tried or explored almost everything suggested here and more over the past two years. PT, NAIDS, chiropractor, accupuncture, cranial sacral massage, physiatrist injections to my neck x3, tmj treatment, neurologists x2, rheumatologist, various meds, MRI, and many other things.
Anecdotally, I have a friend who had polymyaligiac rheumatica, a very debilitating disease, took 20mg of prednisolone for a while and has weaned down to 2mg now a year later. He’s totally cured and says he has had zero side affects. This is why I asked the question. I’m very aware of the dangers. I’m just thinking the side affects so far of NOT taking Prednisone is a very poor quality of life.
Did you try gabapentin? I was able to avoid back surgery for several years on it.
I did try gabapentin. Along with most drugs A-Z. But thanks.