Alternatives to prednisone?

I am new to this forum and would like to get advice on stopping prednisone. I am 64 y/o male and have taken prednisone daily for the last 10 years. It was originally prescribed for recurrent uveitis and an auto-immune disorder. I have tried many other medications but none have been as effective as prednisone. I am well aware of the side effects but the alternative is widespread and sometimes debilitating pain. My current strategy is surgical correction of some major problem areas. Lumbar fusion for severe spinal stenosis is pending. I have leg weakness and foot drop and some lower back and leg pain. It seems reasonable to forego surgery for as long as I can but I would probably need to continue taking prednisone. I don't think I have any other option.

Thanks Seashell,
I truly appreciate your response and wish that I could help you with your condition. I am vaguely aware of what you describe and that's what I wish to avoid. As recently as 3 months ago, I was able to taper from 10 mg down to 2 mg in increments of 1 mg every week. I did not feel sick but pain did gradually creep back in and I stopped and I went back to 7 mg. Three times in the last 2 years, I have been able to taper completely off for periods of 1-2 weeks only to return to debilitating pain. I don't know for sure if the pain was caused by the inflammatory pain condition or perhaps AI.

I'm frustrated but still encouraged that I don't seem to get the awful flu-like symptoms you describe. I do feel more "normal" with prednisone as compared to without. What you describe does make me have a greater sense of urgency.

I have a PCP and rheumatologist and they always remind me that I have to get off prednisone. However, they aren't overly helpful with helping me accomplish that goal. I'm not blaming them because it is just a set of circumstances that prohibit other options. Because of warfarin, it isn't recommended that I take NSAID's. I don't tolerate DMARD's well and they seem ineffective for pain. Narcotics, muscle relaxants and those types of drugs make me feel like I am digging a hole for myself which I can't escape. I'm trying to taper off prednisone without any back-up to control pain.

The alternative to not taking prednisone, it seems, is chronic and debilitating pain. A few years ago, I thought that if I surgically corrected the main sources of pain that would allow me to taper off prednisone. My lumbar spine issue stopped me. I didn't even know I had the kind of damage to my lumbar spine that was discovered on an MRI. The surgery that was proposed scared me and the pain was unbearable so I went back on prednisone.

The only thing I haven't tried is a biologic. It seems like some type of biologic would be helpful as a prednisone sparing drug if nothing else. I don't know what the solution is but I'm sure continuing to take prednisone is NOT the best answer.

Mike

Karen,
Any recommendations for an endocrinologist with pituitary/hpa axis speciality. I live in Iowa City, IA and the University of Iowa Hospital and Clinics (UIHC) is easy to access. I am a retired RN and worked there 25+ years so I know my way around. I don't want to stray too far away from there because I'm too tired. I even increase prednisone to feel better when I travel.

Sincerely,
Mike

Karen,
First, let me say that I am overwhelmed by your response and I would greatly appreciate your help. I went through all the MD's on the PNA website but didn't see anyone in Iowa. It was interesting to see so many neurosurgeons listed. My nursing background was primarily neurology/neurosurgery but I wouldn't think those MD's would know much about endocrine dysfunction. I do have some unrelated (I think) neurology issues with trigeminal neuralgia and peripheral neuralgia not to mention the lumbar stenosis. There probably isn't any MD that can "do it all" but maybe within a single department would be nice. I once suggested to my PCP that a referral to the endocrine clinic may be something to try but was referred to the pain clinic instead.

I can do my research too but l like to keep it as simple as possible. Endocrine is certainly not simple to understand. I have thought about going to Mayo Clinic or the University of Michigan. My wife's family is all in the Detroit area so she would love to have an excuse to go there. Travel isn't that bad yet.

I will be reading the resources that you suggested. I have much to think about.

Thank-you,
Mike

Mike:
I have time in my hands as this IV drips, drips . .

Diagnosis secondary AI requires specialized blood chemistry testing that is not the norm for most hospitals or clinics. This is where seeing an endocrinologist with speciality in HPA axis disorders or a Pituitary Center is well worth the effort to arrange.

Your body produces cortisol in a circadian rhythm that is determined by time of day and the body’s physiological ordering. A trickle of cortisol begins to be secreted by the adrenal glands around 3 am. It’s secretion gradually increases to prepare the body for beginning of the day - arousal from sleep, initiating digestion and intestinal motility, etc. Blood serum levels of cortisol peak around noon and then begin a gradual taper, with a second uptick in the mid afternoon around 2-3 pm. Cortisol levels then decline through the late afternoon and evening, preparing the body for rest, sleep, and restorative body functions. Lowest cortisol levels are at the deepest evening hours (1-2 am).

A person with low cortisol often with experience erratic bursts of adrenaline - anxiety, rapid heart rate, flustered mood. Adrenaline is secreted as a means to compensate for lowering cortisol as the Pituitary/adrenal duo falters. Insomnia is another frequent manifestation of waxing and waning cortisol.

As cortisol is dependent for life, the body will do everything in its power to compensate for a slowly failing Pituitary-adrenal axis. The Pituitary gland does not falter without a good fight. Waxing and waning low cortisol symptoms, feeling OK one day and feeling as though you have been hit by a Mac truck the next day, reflect this insidious downward trajectory.

Along with Pituitary suppression with prednisone dosing for 10 years comes adrenal gland atrophy. The body produces about 5 mg of hydrocortisone/cortisol a day. An external/exogenous dose of prednisone in excess of 5 mg a day is where the pituitary suppression and adrenal gland atrophy originates. Anything above 5 mg of exogenous steroid a day (oral prednisone) and the Pituitary gland correctly “reads” that it does not need to tell the adrenal glands to secrete cortisol. The oral dosing is covering (in excess) the body’s daily need.

So . . . In addition to Pituitary suppression the matter of adrenal gland atrophy needs to be examined.

The testing process is specific - as to time of day and as to the handling of the blood vials collected. ACTH and cortisol both degrade quickly once outside the body. A hospital/clinic that is familiar with the ACTH stimulation challenge is essential. Faulty handling of blood specimens (all blood vials must be placed on ice and centrifuged within 30 minutes) and test time of day (testing must be done between 7-8 am as lab values will be compared to expected circadian values) is imperative.

As you can see, this is not like diagnosing diabetes. Diagnosing for HPA axis dusfinction is in a league of its own.
Karen

Karen,
Please don't worry about this tonight. I have been doing this for a long, long time and I don't think anything will change anytime soon. I think you confirmed what I already knew. I was just never sure what to do about it.

Sincerely,
Mike

Karen,

I think I will start here:

[url]https://uihc.org/adrenal-dysfunction-clinic

This clinic shares the same space that my rheumatologist is in. I have seen most all these people indirectly over the years so they must be about my age. I think they must do consults all over the hospital --- probably for diabetes.

There is one that may be what I need. I think she actually checked on me for the first few hours after my first knee replacement. There was a medical co-management team and they were very concerned about the steroids. Her name is Amal Shibli-Rahhal, MD. She also has these Diseases and Conditions listed:
Diabetes
Metabolic bone diseases
Osteoporosis

I think I might have some bone issues as well. There is also a Pituitary Disorders Clinic -- the MD's are the same except for a couple more.

I hope you are doing well.

Mike

Karen,
One more question and then I won't bother you anymore for awhile --- How do you tell if AI is the cause of pain?

I can distinguish mechanical pain --- it is localized, tends to get better over time, or at least I can do or not do something that makes it better. Inflammation markers are low or normal.

Inflammatory pain is much the opposite --- it may start out localized but spreads and gets worse over time and nothing seems to make it better and gets unbearable. Inflammation markers are significantly elevated. It responds to prednisone. Mechanical pain also responds to prednisone but I try not to use it for that kind of pain.

Then there is pain presumably due to AI but I don't really know. It is chronic baseline pain but it seems to be dialed up or down based on the prednisone dose.

I haven't experienced anything remotely like an adrenal crisis. I have had episodes which I call a "pain crisis" but they happen even when I am taking prednisone at the usual dose of 10 mg. That usually involves an ER visit and/or a mega dose of prednisone.

Do you have any insight into what pain caused by AI is like? If the pain is caused only by AI would inflammation be high or low?

I will try to let you know what the endocrinologist has to say but I expect it may be awhile for the next appointment.


I can only imagine what you have been through. I only have pain to deal with but I have mostly gotten used to that.

Thank-you for all the information and I wish you well !!!
Sincerely,
Mike



Hi Mike, I have removed your email address from your post. The administrator prefers that we do not post personal information like this in the forums. This is to protect our members. You can put your email address in your profile & only members will have access to it. Thanks Susie

Post Edited By Moderator (straydog) : 10/14/2018 4:04:37 PM (GMT-6)

Karen,
I need to give you a break but something tells me you know why my BP went out of control. I probably had mild age related HTN but it wasn't treated. My PCP told me to check it a few times before the next visit. I did a couple in the afternoon checks and they were OK. Then suddenly a random morning BP check was 200/110 or some ridiculously high number. That was a surprise and I thought that my cheap little BP machine malfunctioned. I had my co-workers check it with the fancy machine at the hospital--it was still 190/100 and that resulted in an ER visit. In the ER they verified that it was high but just re-checked every 15-20 minutes. It just drifted back down to the normal range and I was told me to follow-up with my PCP. Now I take 3 BP medications to control it. It was very strange.

Please don't go into too many details but I do find your explanations fascinating. So many things are beginning to make sense to me. That was the worst part ... I never knew why.

Mazoli:
Welcome to the group. Welcome.

And thank you for extending information about your blog site. I will gladly follow your blog on living with interstitial cystitis. I have been spared the distress of interstitial cystitis, but understand it is a pain like no other during a flare. I had a large stage-horn kidney stone many years ago, and recall its agony as not something I ever wanted to repeat.

Mike:
With you auto-immune history, it is possible that you will test positive for elements of primary AI (adrenal gland based) in addition to secondary AI (corticosteroid induced Pituitary suppression). I have a mixed variant, myself.

As you go through testing and begin to assess the range of effects that adrenal insufficiency can leave in its wake, it is likely that you will begin to make correlations to other health hiccups that you have. Finding pieces of the puzzle. Ex. Your notes tendon rupture? Connective tissue thinning is a common finding of prolonged or high dose steroid use.

I have updated my profile to include my e-mail address. Feel free to stay in touch. I have come to help others navigate the AI diagnosis pathway as a means to give some sense of purpose or meaning to my own struggles. It helps me in helping others.
Karen

Mike:
Bottom Line: You are in dangerous territory in liberal dosing with prednisone. Your PCP and rheumatologist are derelict in their duty in not referring you to a Pituitary-specialist endocrinologist for management.

The body produces approximately 5 mg prednisone equivalent in cortisol per day. Prednisone is comparable but not bioequivalet to cortisol. Every day that you take more than 5 mg prednisone you are deepening the depth of Pituitary suppression/HPA suppression and adrenal gland aprophy/disuse. The prospect of HPA axis recovery becomes more dim and more dim.

Why is this a big deal?

The HPA axis is life-essential. Cortisol is needed at a cellular level by EVERY cell in the body. HPA axis suppression leads to broad endocrine dysruption/failure and secondary organ failure.

Yes, you feel better on a higher dose of prednisone. I know. I have been where you are, myself. Liquid prednisone (prednisolone) was my golden elixir. I would feel measurably better within 30-45 minutes of a 15 mg swig of prednisolone. Prednisone has substantial anti-inflammatory benefits, easing inflammatory pain. Prednisone is also activating. It provides a boost of energy chemically similar to
adrenaline, like super charged caffeine.

To your private e-mail, I sent you links to the UK/British/NIH Addison’s Society, and informative PDF downloadable guides for both physicians and patients. Your PCP, in particular, would benefit from the information. The information in these PDF guides is immensely valuable.

By continuing to dose indiscriminately with prednisone as you are, you are placing yourself in an increasingly grave situation. You are walking on a narrow balance beam. A small perturbation will send you off the narrow beam that you now walk in your friendship with prednisone.

The positive benefits/effects of prednisone that you feel at 10 mg will lessen over time. You will begin to dose with higher amounts of prednisone to derive the same effect, chasing to higher doses.

Why? The sliver of HPA axis function that you may have will sputter and lessen over time. The small amount of cortisol that you are producing will lessen to a trickle. Leaving you 100% dependent on exogenous corticosteroid for life/survival.

Let me be as clear as daylight . . The life of someone with adrenal insufficiency is not a comfortable life. My life is a shell of an existence. Even with steroid replacement therapy. The extensive intestinal perforation that I experienced was due corticosteroid induced tissue thinning. I have a permanent ileostomy and wear an ostomy pouch. have steroid induced glaucoma with loss of peripheral vision. I have advanced avascular necrosis of both hips and jaw. Sever osteoporosis (also steroid induced) prevents surgical total hip replacement as an option. Pain? I am on both a Fentanyl patch and oral dilaudid, a combined dose far above the CDC guidelines. Palliative Care is my medical “home,” with a focus on care and
comfort measures. Addison’s effects every aspect of my being - mind, body, and soul. Every day. My quality of life is low/marginal. It saddens me to my core. I am 56 years of age. A petite/tiny person. My mind remains sharp. It is my only remaining quality not affected.

That you are writing/posting seeking assurance of your relationship with prednisone leaves me to the opinion that you, yourself, know that you your relationship with prednisone is troubling.

It is as if you are piloting a 747 jetliner without a pilot’s license.

I think if you are honest with yourself you will agree that you have no idea what you are doing.

Your PCP and rheumatologist have left you to your dosing decisions. Theirs is a dereliction of duty.

If you did not receive the UK/British Addisnon Society links, I will send them along to you again. Download the attached PDFs.

I gather you are close/friendly to your PCP. Put on your eye glasses and begin to see clearly where your relationship with your PCP is placing you in medical jeopardy. Indiscriminate dosing with prednisone has you in a precarious state. You will not look back on your PCP with favor or kindness.

Be honest.

You are scared for your health - current health and future health. You rightly should be concerned. The intrinsic ringing alarm bells that only you can hear are ringing for a purpose. Act in your innate concerns. Your intuition is correct. You are in peril.

Get yourself to a Pituitary-specialist endocrinologist or designated Pituitary Center.
Pronto. Double pronto.

The National Adrenal Disease Foundation can help you. I am happy to fax the listings of MD providers and designated centers from the Pituitary Network Association. You NEED a specialist. Pituitary-adrenal conditions are complex and complicated, a spider’s web. This is diagnosis that requires competency in its designation and management.

You have my e-mail.

Take some time to digest the information . .
And get moving to make a plan to see a specialist for a consultation.

After being dismissed by physicians for 3-4 years, I ended up in the ER in an full-blown Addisonian crisis and coma that served as
the critical event that provided a diagnosis.
Karen

Mike:
Your comment suggesting that you are not exceeding a safe dose of prednisone by the characterization that you do not have an obvious Moon Face (Cushionoid feature) is false thinking.

Any dose of prednisone greater than 5 mg per day is greater than the cortisol secreted by a healthy/intact Pituitary adrenal axis. Exogenous dosing of prednisone of 10 years in duration is not benign.

Corticosteroids cause elevated blood glucose levels by affecting increased insulin secretion by the pancreas. Weight gain and stereotypical fat/adispose tissue distribution associated with corticosteroids is due to this insulin effect. Fat is redistribution disportitionally to the face (“Moon Face”), upper back/scapula (“Buffalo Hump”), and the mid-abdominal girth.

Corticosteroids also cause loss of lean muscle mass and thinking of the skin and connective tissue.

What does this add up to?

A typical person who has been on long-term steroids will gain weight, even eating a low calorie menu, from the effects of increased insulin secretion and fat storage. The pancreas becomes fatigued, with resulting insulin resistance. Some people will need to adopt a protocol of glucose strip monitoring and insulin injections. Weight gain will be seen in the face, upper back, and abdomen. Fluid retention also aggravates the weight gain. Loss of lean muscle mass in the arms and legs with a twig-stick appearance.

Loss of collagen and fibrin result in fragile skin integrity. Easy to bruise. Simple skin cuts and small skin wounds are slow and delayed to heal.

Temperature deregulation also accompanied long term steroid use by affecting the hypothalamus, the body’s internal thermostat. People on long-term steroids tend to overheat easily and then bumerang to feeling cool/chilled. Rosy, red colored cheeks.

Osteoporosis is another secondary finding of long term steroid use. Osteoblasts and osteoclasts (cells that remodel bone) are no longer in balance. Pathological fractures of thoracic and lumbar vertebrae and of the humoral head/shoulder and femoral head/hip are common fracture sites. Bone loss also is prominent in the the jaw. Gum recession accompanies loss of oral bone mass.

There are innumerable reasons for you to make a consultation with a Pituitary endocrinologist or neuroendocrinologist a priority. Regardless of your PCP dismissing your steroid use as something that will need only a simple updose of steroid should you ever have an infection or surgery.

Surgery and any intense stress requires IV steroid administration, 100 mg SoluCortef or more per day drip.

An emergency injection kit of Solu-Cortef is a necessity of anyone with impaired HPA regulation. You should have an IM injection kit and you and your wife should receive instruction on how to use it. I have an injection kit with me at all times. I have actually had to use it on 4 occasions in the 6 years since Addison’s diagnosis. Your “pain crises” are likely sub-clinical adrenal crises and would be likely respond to an emergency injection by yourself/wife/emergency medical response personnel as you head to the ER for definitive treatment.

In the weeks before the full Addisonian crisis that was the defining moment of diagnosis, I had been experiencing unusual symptoms. Altered consciousness (I was driving and blacked out, taking down two mail boxes on a residential street); oozing skin wounds of my elbows and knees; nausea/vomiting; sharp/penetrating upper lumbar pain/kidney dimple area.

Your use of prednisone needs the expert guidance of a competent emdocrinologist. Your PCP and rheumatologist, while meaning well, are out of their league. The sooner you are with an endocrinologist the better. You would not have your PCP set a fractured leg nor would you have your PCP perform surgery for an acute gall bladder attack. Do not further rely on your PCP to manage your relationship with prednisone.

Karen

Karen,
If total body pain, excruciating and low cortisol, in itself, will manifest as diffuse and unrelenting joint and muscle pain then yes, I have experienced that type of pain. I sounds no different than reactive arthritis/PMR except maybe more severe. Do you know WHY it manifests itself that way. For some reason, it is easier to tolerate when I know WHY. My guess is, as you say, all cells need cortisol.

Please don't be so hard on my PCP and Rheumatologist.. They only did what I requested. I have no regrets about taking prednisone. I may have some regrets if it gets worse. I did have one incident when I thought that I was going to pass out and die from pain alone. If that had happened it would seem somewhat merciful but I rather it be something more understandable and less painful. I hope that I don't get censored because I have no intent and that would be wrong.

Anyway, I plan to go to an endocrinologist and relatively soon. I don't think I will need to go around my PCP for a referral. If that became necessary I don't know how I would do that but I will worry about that later.

Once again, I greatly appreciate your comments. I have a tendency to not wanting to talk about pain but it is nice discussing it with someone who understands. Feel free to discuss your pain too via email or here.

Sincerely,
Mike