Pain ever goes away on its own?

Posted by kcsfca @kcsfca, Oct 7 9:12pm

I was on Prednisone from the previous July through May this year for PMR, tapering off. I felt ok for a while, with minor pain I could live with. Over the last month, however, the intense pain has been returning to my shoulders, particularly at night. And it seems to be getting worse, not better. Does this ever get better on its own? Does the pain ever go away on its own? Or is the only solution to go back on Prednisone, which I really don’t want to do. Thank you for your thoughts and input here. I am so frustrated and depressed by this and am feeling increasingly weak and somewhat disabled by the pain.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

I guess it might depend on whether the inflammation has come back, and working out what has to be done to control that. If it is tolerable pain without the return of inflammation and some other solution like physiotherapy and other pain-killing meds might help in the meantime, that could be done instead, I guess?

Sorry to hear you are going through this. The stress of worrying about it all is not good for anyone's health. Please let us know how things go for you and what you end up doing.

REPLY

I am sorry you are feeling so much pain. I have had a similar experience after finally tapering off prednisone after 1 year. It was my hip joints that began to hurt, not at the same level of pain as when PMR was in full swing, but probably a 4 out of 10 on pain scale. I have had a couple of blood tests recently (which I would recommend for you) and my inflammation markers are in the normal range. So where does that leave me. I exercise which helps (walking, yoga, and weight bearing exercise). I am also taking some advil during the day when pain is especially bad. Last night I decided to take a couple of advil before bedtime and I woke up with minimal hip pain. So now maybe I will do that at night if I’m feeling a lot of joint pain. My next rheumatologist appt. is in early Nov. I hope she may have some more answers. My limited reading has told me that it can take at least 6 months for the adrenal glands to get up to speed after being suppressed by prednisone. I was sure hoping that this condition would just “poof” go away after stopping prednisone. So my long winded suggestion to you is to try over the counter pain meds, get blood work done and talk to your doctor. Good luck and hang in there. Liz W

REPLY

I felt better after about 3 months after steroids. You should probably be feeling better. Many have found that PMR sort of uncovered other conditions. Maybe due to a weakened immune system. I will pass this along that worked for me. I am firm believer that prednisone is a nasty alternative to the pain. However, at about the 1 year mark I was like you and having those feelings that PMR was back. I started having trouble getting out of bed and sleeping. I had some leftover pills so I decided to try a 5 day pack. I started at 20mg and tapered off in 5 days. I thought if that didnt work I might go as long as 10 days. That worked. Pain was gone. I did not get a Dr appointment or have him review. I have also found over the counter meds do help. I like aleve but whatever works.

REPLY

My PMR started in Jan in my thighs, then went on quickly to groin, adductors, adductors, derrière, hams. From their, shoulder/rotator cuffs with some "pain in the neck" in the AM.

Off and on the pain would go away! Then return with a vengeance. Over the last few months, my legs have improved a lot. Hope I'm not jinxing myself. The rot cuffs must be inflamed as they give me the most problem along with Baker Cysts which are a constant source of misery. I'm so hoping the legs continue to improve. I started walking every other day a few months back and am getting into upper body strengthening even through the pain, but very carefully! For over 40 years, working out has been my religion, so being sidelined for months has been depressing and worrisome.

I have never taken pred or any steroid, tried a small amt of Advil for awhile, which did help, but had to stop it. So have only taken Tylenol for the last several months and it does next to nothing. Decided today, I'm going to start a small amt of LDN.

Best to you. Hope things get better for all of us.

REPLY

That must be frustrating - there are so many possible things going on.
One thing I have consistently tried as a first step - PT. Sometimes it is just out of balance muscles. There have been a few times where that alone turned everything around.
Good luck!

REPLY

I’m doing PT now hoping to be able to get back to an exercise routine. I used to walk or play golf every day, and for the past 1 1/2years, I can do nothing! Without Prednisone it’s hard to walk or even sit without pain. What’s next for me???

REPLY
@lizward46

I am sorry you are feeling so much pain. I have had a similar experience after finally tapering off prednisone after 1 year. It was my hip joints that began to hurt, not at the same level of pain as when PMR was in full swing, but probably a 4 out of 10 on pain scale. I have had a couple of blood tests recently (which I would recommend for you) and my inflammation markers are in the normal range. So where does that leave me. I exercise which helps (walking, yoga, and weight bearing exercise). I am also taking some advil during the day when pain is especially bad. Last night I decided to take a couple of advil before bedtime and I woke up with minimal hip pain. So now maybe I will do that at night if I’m feeling a lot of joint pain. My next rheumatologist appt. is in early Nov. I hope she may have some more answers. My limited reading has told me that it can take at least 6 months for the adrenal glands to get up to speed after being suppressed by prednisone. I was sure hoping that this condition would just “poof” go away after stopping prednisone. So my long winded suggestion to you is to try over the counter pain meds, get blood work done and talk to your doctor. Good luck and hang in there. Liz W

Jump to this post

"My limited reading has told me that it can take at least 6 months for the adrenal glands to get up to speed after being suppressed by prednisone. I was sure hoping that this condition would just “poof” go away after stopping prednisone."
------------------------
There were many conditions that didn't go poof after stopping prednisone. The common belief is prednisone side effects resolve after stopping prednisone. Things seem to "gradually improve" over time but most of the side effects I experienced didn't disappear in a few days --- maybe many months or a couple of years but not a few days. My endocrinologist said some of the hormone imbalances caused by long term prednisone use may never improve.
https://my.clevelandclinic.org/health/diseases/22673-hormonal-imbalance
---------------------
The other problem is the mechanism that causes PMR inflammation in the first place might be triggered again. The risk of another flare of PMR needs some kind of medication as a preventative. I don't think PMR ever burns itself out completely. The immune system develops a "memory" for what it attacks which is detrimental when we have an autoimmune condition. If PMR isn't "flaring up" it is likely to be "smoldering" for a long time.

REPLY
@dadcue

"My limited reading has told me that it can take at least 6 months for the adrenal glands to get up to speed after being suppressed by prednisone. I was sure hoping that this condition would just “poof” go away after stopping prednisone."
------------------------
There were many conditions that didn't go poof after stopping prednisone. The common belief is prednisone side effects resolve after stopping prednisone. Things seem to "gradually improve" over time but most of the side effects I experienced didn't disappear in a few days --- maybe many months or a couple of years but not a few days. My endocrinologist said some of the hormone imbalances caused by long term prednisone use may never improve.
https://my.clevelandclinic.org/health/diseases/22673-hormonal-imbalance
---------------------
The other problem is the mechanism that causes PMR inflammation in the first place might be triggered again. The risk of another flare of PMR needs some kind of medication as a preventative. I don't think PMR ever burns itself out completely. The immune system develops a "memory" for what it attacks which is detrimental when we have an autoimmune condition. If PMR isn't "flaring up" it is likely to be "smoldering" for a long time.

Jump to this post

Thank you for your comments. During my 13 months of prednisone I had absolutely no negative symptoms from the medication. All blood tests were within normal range and my shoulder and hip joint pain was simply gone. Even as I slowly tapered there was no flare or discomfort. The joint stiffness and pain started to appear about 3 week after I stopped prednisone. Before that time I was feeling pretty lucky that maybe I had seen the last of PMR symptoms (which I understand never goes away but may stay in remission (or not). Fortunately I can live with the mild/moderate joint stiffness now and hope that it does not increase. Liz W

REPLY
@reets70

I’m doing PT now hoping to be able to get back to an exercise routine. I used to walk or play golf every day, and for the past 1 1/2years, I can do nothing! Without Prednisone it’s hard to walk or even sit without pain. What’s next for me???

Jump to this post

PMR can definitely put the slammer on your favorite activities. Not sure anyone can say what's next but for me what helped was trying to keep a positive attitude along with learning what lifestyle changes I can make to support getting off of the prednisone with a minimum amount of pain. I changed my eating habits to eat healthier and less inflammatory foods along with keeping my activities and exercise to a moderate amount which changed depending on how I was doing on a particular day. Hoping the PT helps you get back to a regular routine with exercise.

REPLY
@lizward46

Thank you for your comments. During my 13 months of prednisone I had absolutely no negative symptoms from the medication. All blood tests were within normal range and my shoulder and hip joint pain was simply gone. Even as I slowly tapered there was no flare or discomfort. The joint stiffness and pain started to appear about 3 week after I stopped prednisone. Before that time I was feeling pretty lucky that maybe I had seen the last of PMR symptoms (which I understand never goes away but may stay in remission (or not). Fortunately I can live with the mild/moderate joint stiffness now and hope that it does not increase. Liz W

Jump to this post

I didn't think I had too many problems while I was taking Prednisone except for all the "mysterious things" that happened to me. Most of the things were called "idiopathic."

I didn't have many "symptoms" either for many of my Prednisone related conditions. Things like insulin resistance and other out of whack hormone levels were largely silent. My endocrinologist seemed to have a better idea of what labs to check. My insulin level was very high for example because of insulin resistance. My endocrinologist said if I had stayed on Prednisone it was only a matter of time before I would be diabetic.
https://www.medicalnewstoday.com/articles/317015
My blood glucose level was checked many times while I was on Prednisone My glucose level was always "borderline normal."

My insulin level was never checked until after I was off prednisone. Insulin is a hormone produced by the pancreas that helps glucose enter cells in the body's tissues, where it's used for energy. Insulin resistance can lead to a number of health problems, including:
Liver disease
Increased triglycerides
Increased LDL ("bad") cholesterol
Heart disease
Eye issues
Some types of cancer
Alzheimer's disease

REPLY
Please sign in or register to post a reply.