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Posted 1/26/2019 10:49 AM (GMT 0)
Hi, I recently was given a 12 day Prednisone course by my Rheum because of inflammation that was worse than usual and increasing problems with my SI joint. I have inflammation issues usually (inflammatory arthritis, etc.) and for the past few years we have been working to find a med that helps. Along with trying Xeljanz for the second month the Rheum gave me a 12 day Prednisone that was 30 mgs at the peak and tapered off. Since stopping my inflammation has increased. It has been two days off and I feel awful. I am so swollen and of course the SI joint is very inflamed. The inflammation triggers worse than usual ringing in my ears, bloodshot, swollen eyes, fingers, my resting heart rate is considerably higher than normal and I could go on but you get the (inflamed) picture. Oh, and I am a pleasure to be around as everything is setting me off to fight. Has anybody experienced this sort of a rebound thing after steroids? I am assuming that is the problem and it will get better over a few days, but I wanted to ask the group. Thanks for any comments!
Posted 1/26/2019 1:41 PM (GMT 0)
Darla, I have extreme inflammation in my body. My ESR and CRP tests were off the charts. I had terrible pain in my spine, hips, and running down both legs. Just lifting my foot an inch to take a baby step had tears streaming down my cheeks. I seriously was thinking about selling my home and going into assisted living because I could barely walk and, when I did walk, I needed two canes. I got to the point I wasn’t eating or drinking much so I wouldn’t have to get up and walk to the bathroom. Now that’s what I call PAIN.

I was finally diagnosed with ankylosing spondylitis and sacroiliitis, which, as you know, affects the SI joints. My rheumy suggested Remicaid infusions but I wasn’t comfortable with that because of my family medical history. So I was put on ibuprofen and a prescription muscle relaxer called Robaxin (methocarbamol) and these made a significant difference in my pain.

Because of the extreme inflammation in my body, I developed auto immune inner ear disease and the inflammation has killed off hairs in the cochlea that carry sound. I am now profoundly deaf in the high sounds. I mention this because the Doctor of Audiology tried prednisone to try to stop the progression of this disease. I was put on 80 mg of prednisone for one month. The first week was great but then the prednisone shut down my immune system pretty much and I was sick as a dog...catching everything that came down the pike. I spent the next three weeks flat on my back on the sofa. My doctor was even calling me at home daily to check up on me because she was so worried about this. It took me four months to wean off this dose and I haven’t taken it since.

The swelling is probably caused by the medication and it will go down. I looked like the Pillsbury Doughboy while on the prednisone. I may have had more reactions after getting off prednisone but really wasn’t looking for a reaction. I was just thrilled to get off that medication. You do know that prednisone is horrible for your bones and can help bring on osteoporosis too.

Yes, the inflammation came back and, no, the prednisone didn’t stop the progression of my hearing loss. Sometimes the “cure” is worse than the illness. I do think these side effects will wear off as your body gets accustomed to not having the prednisone affecting it. As I said above, a simple muscle relaxer and an over the counter drug took care of my extreme pain. I hope you feel better soon.

Sherrine
Posted 1/26/2019 2:51 PM (GMT 0)
Darla:
You may be experiencing what is called “steroid withdrawal syndrome” - although this condition is usually associated with abrupt cessation of steroids at a higher dosage than you were prescribed. You can google the term “steroid withdrawal syndrome” to get a full description.

But you may also just be experiencing the normal effects of taking corticosteroids. You description sounds about par for a steroid taper pack.

I gather from your prior posts that you have not been on corticosteroids to treat your varied conditions.

Glucocorticosteoids are a powerful hormone. They are not a benign medication.

Glucocorticosteoids are normally produced by the adrenal glands, closely regulated by a negative feedback loop with the Pituitary gland. Corticosteroids are part of the body’s “fight or flight” response and are essential in the body’s ability to respond to physical and emotional stressors. These are life-essential hormones that are required at a cellular level by all cells in the body. Every cell. Every neuron in the central nervous system, every muscle cell, every bone cell, et al.

That glucocoeticosteoids are physiologically essential at a cellular level is the reason that you are experiencing such a wide swath of symptoms as you taper the dose. Every cell and every body system is affected.

Now you have a glimpse into my world with Addison’s disease and the havoc that the condition rains on my being.

What you are describing are expected side effects of corticosteroids.

Steroids affect blood sugar levels by increasing the secretion of insulin by the pancreases and IGF-1. Tissue swelling and gross pitting edema are common manifestations. The body will lay down more adipose tissue - especially prominent to the face, abdomen, and upper back. Emotional liability, anger, wide mood swings, and sleep disruption with insomnia are all side effects of steroids. Temperature dysregulation with hot/cold spells is another common side effect. Diffuse joint and muscle pain is common. The pain can be severe and body-wide. Diffuse and all consuming muscle/joint pain is due to disruption of the adrenal glands and their secretion of cortisol. Cortisol is the body’s primary anti-inflammatory agent. Taking exogenous corticosteroids can suppress the Pituitary and adrenal glands, essentially stopping natural production of cortisol. The tapered dosage of a steroid pack is meant to mitigate this risk, each dose taper designed to coax the Pituitary gland and delicate HPA axis (hypothalamus-pituitary-adrenal) back into commission. Secondary adrenal insufficiency results when high dose/long term use of glucostorticosteroids permanently suppresses the HPA axis.

Talk with your MD next week if you still feel out of sorts.

I think that you are experiencing fairly typical symptoms associated with steroid dose reduction. They are not pleasant. It may be that the dose reduction was too rapid for your body to adjust to.
Karen
Posted 1/26/2019 3:39 PM (GMT 0)
Thank you, Sherrine and Karen, for taking the time to reply! And to provide so much information. I am miserable. I am not usually on steroids but I have had a 6 day course twice in the past few years and did very well. I am surprised that I am having this reaction as I did taper off as directed. I was given the steroids because of a flare-up of inflammation and I regret getting this treatment as I feel worse now that the course of steroids has ended. I did feel better with them...much better...but so what now that it is over. Karen, I can't even imagine what you go through. Hell. And Sherrine, what a lot you go through. I do take Robaxin, thank you for the advice.
Posted 1/26/2019 4:11 PM (GMT 0)
Darla, ibuprofen is an anti inflammatory medication. When I first was put on it, it was a prescription medication. I take three at a time because two doesn’t help me. The most you can take in a day that is considered safe is 2,400 mg. When I was at my worst, I took three tablets every six hours around the clock. That was the 2,400 mg. I now only need three tablets twice a day...morning and evening. Try that but do take it with food to protect your stomach. See if that helps. It might take a few days to bring down the inflammation but this and Robaxin are my “wonder drugs”. I also will add Tylenol when necessary.

Sherrine
Posted 1/26/2019 4:51 PM (GMT 0)
Karen, thanks for the clarification about the steroids. My particular set of autoimmune nonsense seems to have interacted poorly with this medication. I know the couple of times I had the shorter course they really made me feel 'normal' but this tipped the balance for me. As you mentioned is the case with you, all my systems are off. I am so sorry you struggle so much with your diseases.

Sherrine, I appreciate the information. I have been on so many medications for the autoimmune nonsense and nothing has really slowed the inflammation enough to be a keeper. We try one biologic and give that a try for about 6 -9 months then that is stopped, a break, and the next one...on and on and the years go by. I am on methotrexate injections weekly. I do like to think I would be worse without meds but sometimes I think they cause as many problems as they address. Well, I think that until I have to take a break for some reason then I say well they did help...lol.

Thank you!
Posted 1/26/2019 6:23 PM (GMT 0)
What is it about exogenous corticosteroids that makes most people have such bad side effects? For me, methotrexate at the lowest dose resulted in bad side effects. It was much the same for NSAIDs, DMARD's, opioids, muscle relaxers, and various medications for neuropathic pain.

Prednisone, on the other hand, was the opposite. I still remember when the inflammation in my eye was so severe that I believed that I would be blind in one eye and the prednisone dose was pushed to 100mg. My doctor became concerned that I was feeling too good. There was a feeling of euphoria but I wouldn't describe it as bad.

Chronic pain caused by an inflammatory autoimmune disease and extreme neuropathic pain was the alternative to not taking prednisone. It was an easy choice.
Posted 1/26/2019 6:55 PM (GMT 0)
Darla:
It would be worth having your rheumatologist order bloodwork to evaluate your baseline cortisol, as well as ACTH and IGF-1 and growth hormone.

Given that you cite years and years of low effectiveness to standard treatments for your inflammation and pain, your physicians may have been traveling down the wrong road.

It would be worth taking a look at your basic endocrine status for low hormone levels.

The body has over a hundred hormones (that we know of) that serve as chemical messengers that essentially give instructions to the body’s organs and organ systems, telling them how to work and function.

Low cortisol or high growth hormone both would be symptomatic for wide-spread inflammation and joint/bone pain.

Once a person completes puberty and the growth plates close, high growth hormone does not equal what one thinks of with high growth hormone - which is gigantism and large stature.
Growth hormone then acts on receptors embedded in joints, the pelvis, and gradually shows with and subtle changes in the face, feet, or hands. Think of high growth hormone as someone constantly ringing the doorbell to your home. Ring, buzz, ring. Constantly stimulating bone. It is downright irritating and painful.

The term for high growth hormone after puberty is termed acromegaly. It tends to become noticeable in individuals as they come into their 50s. Looking at family photographs can be revealing. Perhaps a wider forehead. Or more prominent jawline and overall larger facial features (nose, chin, broadening of the forehead). Bony ridges, essentially ectopic bone, often are found on the lower palette of the mouth. Feet continue to grow, a gradual increase in shoe size or shoe width, over the years. Pelvis widens. Shoulder girdle widens, shirts/jackets fit more snuggly across the upper back. The changes are slight, subtle and occur gradually and insidiously over time.

The Pituitary gland is the master gland. It regulates all of the secondary endocrine glands. The Pituitary gland is the size of a small pea, sitting at the base of the brain and deeply protected in a bony encasing called the sella turaica. A compromised Pituitary gland will compensate as best as it can for as long as it can. That the Pituitary gland is ailing will not make itself readily apparent. It has a life-essential role and do whatever it must to keep the body alive, even as it may weaken in function. It is not usual for people with Pituitary issues to find symptoms at a tipping point leading to diagnosis at two key life inflection loonts: a. Puberty, as the Pituitary gland is physiologically challenged to produce an onslaught of gender-specific hormones; b. Early-mid 50s, as the Pituitary gland is fatigued by years of compensating for what may have been a compromised state and it can simply no longer.

That this steroid pack has “hit” you more severely, that you are not bouncing back as you have been able to before, does give strong suggestion that you may have had some long-standing degree of Pituitary inadequacy. A level of inadequacy that your body has been able to somewhat compensate for but with age and physiological fatigue is struggling to sustain.

You may want to visit the Pituitary Network Association (PNA). It was established in the early 1980’s in response to the dearth of knowledge and awareness of Pituitary disorders. It is a beacon of light. People with Pituitary disorders are, sadly, often mistakenly diagnosed with psychiatric disorders (obsessive compulsive disorders, eating disorders, or people who gravitate to alcohol to soothe their internal state).

Given that I have complete Pituitary loss (pan-hypopitutary) I can attest to the mis-directions that physicians can take when trying to place a name to a symptom.

You may have less a rheumatology problem and more an unknown endocrine problem? It would be worth consideration. Especially given the years and years of rheumatology has not found relief for you.
Karen
Posted 1/26/2019 7:26 PM (GMT 0)
OMG Karen...You might be right. As you know I have had so many surgeries that I am always in a pre-op/post-op state and so much has gone by the wayside as whatever joint is being repaired or replaced is the focus. I have been tested for everything under the sun from a Rheum standpoint and there have been some hits but really not to the extent you would think, given my inflammation state. You talk about a doorbell ringing...that is my brain. And my body. I am always on alert. Some of these things are explained by the conditions I have been diagnosed with but...

When I was a child I was short and went through some endocrine testing. I am not sure what came of that but I caught up and though I was physically on the late side I got there. My oldest son (not the autistic one) had growth issues and was on growth hormone for years. (He grew adequately after a while but had to sit on a phone book to drive). But I digress, except to say I think you are really saying something I have not explored. My Drs just keep plugging along and do not think outside the box. I really think this course of steroids showed the things you are talking about and I am definitely going to explore looking further. I keep feeling like I could be better than I am.

Brilliant, Karen. Thank you so much for the thoughtful response!!
Posted 1/26/2019 7:29 PM (GMT 0)
DadCue, 100 mgs??? Holy Cow. When I got to the 30 mg I felt like my face was going to explode. As I mentioned, on previous short courses of cortisone I did feel great...And with this run I did have more energy (lots) and exercise more, etc. But I also felt like I was going to explode. 100? Wow. I don't have a problem with the methotrexate...it wears me out a bit that day but I feel much better the day after I take it and a few days after. Different disorders respond differently. Do you still have the reactive arthritis?
Posted 1/26/2019 11:00 PM (GMT 0)
Darla, I don't know if I still have reactive arthritis. My original diagnosis was reactive arthritis but that morphed into polymyalgia rheumatica (PMR) later on. In my opinion, the symptoms were basically the same except PMR involved diffuse muscle type pain compared to back and joint pain with uveitis for reactive arthritis. It just hurt everywhere. "Autoimmune nonsense" is a good way to describe it.
Posted 1/27/2019 1:05 AM (GMT 0)
Gotta say, Darla, but there is certainly evidence enough in your recent posts to point to a possible endocrine basis for your years of health woes. Current research is uncovering DNA linking growth hormone, a genetic link. A specific gene has been identified for acromegaly.

That you may have anecdotal evidence of low levels of growth hormone as a child, adding that that your son was on actual growth hormone (GH) replacement is striking.

It is not uncommon for a Pituitary gland with low GH as one point in life to then morph to high GH, a wide swing of the pendulum. It goes back to the pivotal role of the Pituitary gland and its forebareance to keep soldering on, compensating in whatever way it must to “keep the lights on.” The anterior portion of the Pituitary gland produces key/essential hormones. The primordial cells of the anterior Pituitary gland can morph/adapt to the cell types responsible for each of the key/essential hormones produced in the anterior section of the gland. A Pituitary gland with low growth hormone as a child can over-correct by secreting excessive growth hormone as a mid-life adult by incorrectly allocating primordial cells to growth hormone secreting cells.

The anterior hormones include: GH growth hormone; ACTH adrenocorticotrophic hormone; TSH thyroid stimulating hormone; Vasopressin or anti-diuretic hormone; and prolactin.

You could have a state of excessive GH along with low ACTH (and subsequently low serum cortisol). The anterior portion of your Pituitary gland devoting too much area to GH secretion and a lower/low level of ACTH secretion (which would manifest as the adrenal glands being directed to secrete lower cortisol than optimal).

Sherlock Holmes would be intrigued.

The endocrine system is complex and complicated. Be forewarned that an endocrine diagnosis is rarely a slam-dunk, simple process. The pool of Pituitary-specialized endocrinologists’ is limited. Diabetes is the bread and butter of most endocrinologists and group practices, which is fine/great is you have diabetes or a metabolic disorder but less than ideal if you have a Pituitary or HPA axis issue.
If you decide to seek an endocrinology consult, you will want to do some upfront planning to identify an endocrinologist with Pituitary or HPA axis speciality. I cannot over emphasize this importance. It is the interpretation of key diagnostic blood work and MRI review on which diagnosis is made. A basic endocrinologist can easily not be up to the challenge. That you live on the east coast is good. The majority of Pituitary Centers and Pituitary specialists are located on the West and East coasts’ in the larger urban areas.

A possible endocrinology etiology certainly does give you an alternative pathway to consider.

My Pituitary diagnosis was years in the making. Once the diagnosis was made, all the pieces of the puzzle of my erratic health made sense. In hindsight, the symptoms were all there. I place fault on the inability of a long string of physicians to deviate from already applied diagnoses (diagnoses that ultimately were proved to be incorrect and inaccurate) for the delay in my receiving an accurate diagnoses and proper care. The power of “Group Think” kept any new physician that I sought from seeing anything other than what was, by that time, established in my medical record. A long litany of inaccurate diagnoses. Years of inappropriate care and years of being dismissed. Chipped away. It really was a travesty. It is the reason why I am as passionate as I am on a discussion forum such as this pain forum. I hope to help someone avoid my same fate in the hands of medical care.
Karen
Posted 1/27/2019 11:04 AM (GMT 0)
Karen, thank you so very much for the thoughts on this! I am going to my pcp this week and I am going to see if he will order some of the blood work so I have some preliminary info as I look for an endocrinologist. I would not be shocked to see that we have been barking up the wrong tree. Thank you!
Posted 1/27/2019 8:22 PM (GMT 0)
Karen, I went back over the last post you wrote and took notes. I am going to see what I can get my primary to test in the short-term while I look for the best Dr I can get to. Group Think. The backbone of most medical people I see. Especially when the Dr is not so involved and the PA does most of the work.

I am going to look at the site you recommend but I wanted to ask...if there is a pituitary issue such as may be the case, is there a treatment? From what I know there is a critical period to affect any change with much of this stuff. I am hoping that there is a treatment for such things?

I did look up acromegaly and luckily I don't have a lot of the physical characteristics but I am not ruling out an endocrine problem.

Thanks, Karen. Thanks for mustering up the energy to post your thoughts!

Post Edited (Darla) : 1/27/2019 1:58:12 PM (GMT-7)

Posted 1/27/2019 8:52 PM (GMT 0)
And Dadcue...I like that! Autoimmune nonsense. BS. Lol.
Posted 1/31/2019 11:26 AM (GMT 0)
An update looking for some advice please! As I mentioned at the start of this thread, I was on a 12 day prednisone course due to a flare-up of inflammation that lead to very bad pain in my SI joint along with increased inflammation in many joints. Having auto-immune issues I know I get inflammation and I am on methotrexate and the Rheums and I muddle through the other biologics to assist but obviously have not hit on the right one for me. I do think I need to explore the issues Karen addressed, but in the immediate short term I have a question:

I am about a week off of the 12 day prednisone and had no relief from the side effects. My skin was breaking out with big cystic acne (not at this age!!), I was even more irritable than usual, and more of a flare up of my autoimmune issues. I had a visit at the pcp yesterday and the nurse yelled WHAT IS WRONG WITH YOUR HANDS?! I think my husband and I are used to me and did not even notice the hands were swollen and so red. I have Raynaud's and it is cold now so I guess they were extra red and swollen. The pcp came in and gave me a shot of steroids. He said I had a flare and it almost looked like an allergic reaction. He prescribed a 5 or 6 day (not sure) Medrol pack and Benadryl.

So...the PCP said no negative to doing this but I vowed no more steroids after the reaction to the 12 day. But, my symptoms of reaction to the 12 day were not subsiding. I took the shot yesterday and felt very good mood wise. My symptoms of the inflammation are a little better and my symptoms of steroid withdrawal are a little better but I am afraid to take the Medrol pack. I swore no more steroids for me but since I was not improving waiting to get over it should I take the Medrol pack? I don't think the drs know as much as my friends here.

-Signed, confused and red!
Posted 1/31/2019 2:06 PM (GMT 0)
Darla:
As I mentioned in my first post, it may be that the first 12 day steroid taper was too rapid for you and your symptoms are a manifestation of steroid withdrawal syndrome.

You can google to read a full descriptive.

That your MD gave you an injection of corticosteroid ( likely dexamethasone) and prescribed another steroid pack and Benadryl suggests that he/she also suspects steroid withdrawal syndrome.

You have been on immune medications for years and years. Recognize these are also affecting your body physiologically in ways not yet fully known or appreciated.

Work with your MDs. I suspect after years and years of being on powerful immune affecting/altering medications that you are now possibly in unchartered waters that will become known or play out in time.

As a general rule it is wise to take as few prescription medications as possible and as low of a dose as possible.

I would encourage you to discuss more fully with your MD his/her rationale for the dexamethasone injection and steroid pack. Schedule another appointment or write an e-mail through the practice clinic’s portal. I agree that your MD was valid in approach IF steroid withdrawn syndrome is the culprit.

More important, it is incumbent on you to understand your personal healthcare and treatment in discussion with your providers and medical team. You have been taking powerful immune medications with revolving and shifting diagnoses and have undergone multiple surgeries. It all adds up over time, and can lead the body to a tipping point.

I hope your symptoms begin to ease and that you feel more like yourself again.

A full review of your diagnoses and supportive criteria/findings as well as a complete medication and over the counter supplement review would be a good starting point. It may be wise for you and your MDs yo make a plan to purposely de-prescribe some medications and/or supplements to allow your body a drug holiday.

I am sorry for all that you are going through.
Karen
Posted 1/31/2019 2:30 PM (GMT 0)
Thanks, Karen. I agree with everything and that is why I was hesitant to take more steroids but hopefully this will ease me to whatever my baseline is these days. I do agree less meds are better. I have had some med holidays when I am pre or post op and they are rough. I often feel like the meds do more harm than good until I am off them. Hopefully I can get somewhere better. I changed my next Rheum visit from the PA to the Dr. to go over everything and make some kind of plan. Thanks for the advice!
Posted 1/31/2019 4:30 PM (GMT 0)
Karen is the expert so I have nothing more to say because she helps me too. What is your autoimmune issue? I have one also but not sure what it is. I just started a biologic but that is a new chapter for me because I have taken prednisone for a long time. I can't imagine not taking it !!!
Posted 1/31/2019 5:13 PM (GMT 0)
Hi DadCue. Karen is a Goddess. She not only is a wealth of information but gives so much time in answering. So appreciated. I don't have doctors I respect. I could use at least one great one because I really see I am limping along with all this. Then again I think that is the nature of the beast with autoimmune, unless you have an easily understood one such as Rheumatoid Arthritis.

I think your answer to my question about your Reactive Arthritis said a lot. You said (I think?) that you were not sure. I have been going to Rheums for about 5 yrs following a positive blood test for connective tissue disease. But my symptoms present as some of this and some of that so I have a current diagnosis of Undifferentiated Connective Tissue Disease. And Psoriatic Arthritis which also does not have a specific test but relies on x-rays and clinical presentation. I have Sjogren's (dryness of eyes and mouth, etc.) and Raynaud's (circulation thing). All of this causes me a lot of misery and joint pain. I have tendinitis somewhere most of the time. The joints have needed repair or replacement due to arthritic damage from these conditions.

Which biologic are you on? I have been on methotrexate for the 5 yrs...started low and went to injections. I have been on Enbril, Humira, Cosentyx and now Xeljanz. Nothing worked very well. The MTX is a given but I need something in addition, just have not found it yet. It takes almost a year for the Dr to try something, get a good test of it, take you off of it if you have surgery, or take you off to give yourself a break before trying the next thing. And time for authorization, etc. Very frustrating because time goes by and age, disease progression and all make things worse.

I have a Rheum, his PA, and have seen 2 other Rheums for consults. I have seen two primary care Drs to see if I could add good ideas here. I feel really good today on the steroids but I fear them and won't be on them past the few days. I feel your pain, literally. Are you also on the other things such as pain meds, muscle relaxers, gabapentin? I see your neuralgia diagnosis...Gabapentin is really a help, imo.

I'd like to hear your info.
Posted 2/1/2019 5:07 PM (GMT 0)
Darla: I was diagnosed with reactive arthritis probably 25 years ago. The main characteristics are inflammatory arthritis and uveitis (eye inflammation). Prednisone always worked for frequent flares of uveitis and I always had it available courtesy of my ophthalmologist. I expanded the use of prednisone to treat a wide variety of mystery aches and pains. I was perfectly happy taking prednisone intermittently for 15 years and never saw any doctor regularly except for my ophthalmologist.

The trigeminal neuralgia first occurred about 15 years ago. It was an electric shock type of pain which mostly happened around my left eye. My opthalmologist referred me to a neurologist and and tegretol, gabapentin, and dilantin were all tried but none were particularly helpful. I discovered that prednisone worked reasonably well for this pain also. I stopped going to neurology because they insisted that trigeminal neuralgia wasn’t treated with prednisone.

All was well as long as I took prednsione but I ran out. My wife decided that I needed a PCP so she made an appointment for me with her doctor. I told this doctor what had been happening for the prior 15 years and requested prednisone. She wasn’t very reasonable and only gave me a rheumatology referral. My first rheumatologist informed me that reactive arthritis also wasn’t treated with prednisone but did write a prescription for a 2-week tapering dose for pain. Fortunately, the 2-week taper was mistakenly written with 12 refills. My first rheumatologist and I didn’t get along very well. For some reason after my 3rd visit a different rheumatologist who I knew well saw me. I was more forthcoming with her. She diagnosed PMR which is only treated with prednisone and I have been taking prednisone daily for the last 10 years. She thought a biologic might help reactive arthritis but not PMR. I also got a new PCP who I knew well.

My situation is a bit unusual because I worked at the hospital and personally knew many doctors. It was awkward sometimes but my current doctors seem to care and believed me so I respect them.

The biologic that was recently started was Actremra (tocilizumab) by a different rheumatologist
Posted 2/1/2019 7:29 PM (GMT 0)
DadCue, I can't believe the pharmacist made that error with the refills of the prednisone! I really do understand the benefits of prednisone. I am now on a Medrol pack and feel better than I have in a long, long time. So much energy and nothing hurts too much. But apparently the toll it takes on the body does not make it a good treatment to be on all the time. But you have caring doctors and I guess it works for you? I can't tell from your post. It sounds like it does but you have unresolved issues as well.

The whole Rheum. area seems so murky. I can see so much overlap in diagnoses. Seems like the same pool of problems, really. And not a whole lot of treatment that is effective without doing harm. Time for some breakthroughs.

I hope your new biologic is helpful. Let us know!
Posted 2/1/2019 9:07 PM (GMT 0)
Darla:
Almost everyone placed on a corticosteroid will feel systemically “better” - regardless of the underlying reason for the steroid dosing.

Corticosteroids are activating and uplifting. Blood sugar/glucose levels rise significantly and the pancreas responds by releasing more insulin.
There is lots of glucose energy available. People feel energized, as if they could clean the entire house in under 2 hours. High insulin leads to elevated IGF-1, resulting in added adipose tissue and fat. Fat/adipose tissue secondary to steroids have a typical distribution to the face (moon face), to the abdominal girth (football tummy), and to the posterior of the upper back (Buffalo hump). Secondary effects of sustained elevated insulin levels lends to metabolic syndrome and type 2 diabetes.

Corticosteroids affect mood regulation. People tend to have heightened emotions, displaying higher emotional highs and lower emotional lows. Emotions expressed are erratic and have a quick flash point. “Steroid rage” is a term used to describe the psychological state. Anger, frustration, rage.

Corticosteroids also cause diffuse connective tissue thinning and severe osteoporosis. The grave intestinal perforation that I experienced was a direct consequence of glucocorticosteroid use.

Corticosteroids cause minute fat emboli to form in the blood and lymphatic systems. Avascular necrosis of the hips and shoulder are the two sites most vulnerable. The distinctive small capillaries that nourish the head of the femur and humerus become occluded by these fatty emboli, causing necrosis of the bone.

Most concerning are the endocrine disrupting effects of steroids. Pituitary suppression of the hormone ACTH is a significant concern. ACTH is released by the Pituitary gland and regulates cortisol secretion by the adrenal glands via a negative feedback loop. In taking exogenous steroids the Pituitary gland correctly “reads” that there is sufficient corticosteroid to meet the body’s needs and that there is no need for adrenal gland contribution of cortisol. The Pituitary gland “shuts down” and goes into hibernation. The adrenal glands also “shut down” and go into suspended animation. The problem is that the HPA axis is a delicate and highly complex system that regulates a broad swath of body organs and systems. The Pituitary does not always re-boot as exogenous steroids are titrated and withdrawn. The results is a condition called secondary adrenal insufficiency.

Cortisol, produced by the adrenal glands, is a life-essential hormone. Every cell - every cell - depends on cortisol at an intracellular level. Cortisol is also the body’s principle anti-inflammatory. Someone taking corticosteroids will feel relief of achy bones, joints, muscles, and soft/connective tissue. Someone with low cortisol or someone tapering off of corticosteroids will feel diffuse body pain, often severe and all consuming.

Corticosteroids are an amazing hormone and medication when needed. Their benefits feel good. But corticosteroids are not a benign medication. There are significant risks with continued use beyond 2 weeks and/or use in excess of 5-7.5 mg prednisone equivalency per day (the cortisol bioequivalent of what a healthy/normal person’s adrenal glands secrete).

Your feel good because corticosteroids are activating and energizing. Dexamethasone is given as a pre-medication for chemotherapy infusions to quell nausea and to help cancer patients to generally “feel better” for the 3-3 days following disconnect. Corticosteroids are given for any number of inflammatory conditions (asthma, Chron’s IBD, acute head injury with high intracranial pressure and acute spinal
cord injury, epidural injections for disc protrusions, the list goes on and on).

Judicious and thoughtful use of glucocorticosteroids is imperative. For anyone considering corticosteroids as a treatment, it is wise to weigh the risk/benefit profile with your prescribing physician and to be mindful of taking the lowest dose feasible for relief of symptoms for the shortest length of time.

Adrenal insufficiency is a nasty illness. It is deeply life-changing. It is not an illness that anyone wants to acquire.
Posted 2/2/2019 7:23 PM (GMT 0)
Thanks, Karen. I did feel really good on some Prednisone...not too much, not too little. But back to tapering down and the party is over. I did get a lot done at least! As always I greatly appreciate the lesson and I always learn things I will use. Thank you!
Posted 3/3/2019 8:29 PM (GMT 0)
Prednisone can cause a variety of problems. I am allergic to iodine, prior to a CT scan a couple of years back, involving both IV Iodine and oral iodine contrast, I was given 150 mg of Predisone and 50 mg of Benadryl before the scan. That is a standard protocol. Long story short, both my eye lenses went myopic, resulting in four surgeries, two on each eye. Don't let the medical providers blow off Prednisone side effects.
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