Auto-Immune Disease(s): A Thread

[Bevo 13,560]

35 minutes ago, A-Tex Devil said:

Austin.  Second opinion on which part, though?  It seems to be many different opinions triangulating on one auto-immune issue or another.  

Give me a little time to respond, but I would consider starting from scratch. I just have to think about where y'all should go. I assume you are working with internal medicine in Austin. Do you have money to where you could travel somewhere like Johns Hopkins or even Houston? Do you have relatives that live near a teaching hospital?

[A-Tex Devil 2,446]

53 minutes ago, Bevo said:

Give me a little time to respond, but I would consider starting from scratch. I just have to think about where y'all should go. I assume you are working with internal medicine in Austin. Do you have money to where you could travel somewhere like Johns Hopkins or even Houston? Do you have relatives that live near a teaching hospital?

No worries at all.  Thanks.  The Dr. team we are working with  is kicking around Mayo Clinic, which we'll do if they can make the case.  Honestly, things seem to be getting a bit better outside the constant night sweats that are far beyond ordinary course hormonal/menopausal.  But seems to be one thing or another every couple of weeks so just waiting for the next thing....

[Bevo 13,560]

6 minutes ago, A-Tex Devil said:

No worries at all.  Thanks.  The Dr. team we are working with  is kicking around Mayo Clinic, which we'll do if they can make the case.  Honestly, things seem to be getting a bit better outside the constant night sweats that are far beyond ordinary course hormonal/menopausal.  But seems to be one thing or another every couple of weeks so just waiting for the next thing....

Has she had tumors in the pancreas and parathyroid or relatives that have had weird autoimmune disorders or genetic disorders like Wermer syndrome/MEN1?

[Felix 607]

On 3/23/2022 at 2:10 PM, Judge Roybeanbag said:

Can’t speak for those guys, but when you wind up in the hospital getting treated for “food poisoning “, for like the third time, you’re really lucky one allergist named Dr. William Otto recognized what was up.  

Dr. Otto was my allergist. He just retired.  Great guy and I miss him.

[statsman 5,450]

Here is a very long article about dealing with autoimmune disease. TLDR: Finding the right doctor and entering a long term treatment relationship is vital. There is nobody who can point to a test result and prescribe a cure. It’s a process and a dialogue. You need a doctor that is willing to lean in and try to learn, and the patient needs patience with the process…and needs to know enough to gauge whether the doctor is on the right track. If the link requires a subscription, let me know and I’ll cut and paste into a spoiler box-

 https://www.wsj.com/amp/articles/the-lonely-odyssey-of-chronic-illness-11645804522

[Vegas64 673]

3 hours ago, statsman said:

Here is a very long article about dealing with autoimmune disease. TLDR: Finding the right doctor and entering a long term treatment relationship is vital. There is nobody who can point to a test result and prescribe a cure. It’s a process and a dialogue. You need a doctor that is willing to lean in and try to learn, and the patient needs patience with the process…and needs to know enough to gauge whether the doctor is on the right track. If the link requires a subscription, let me know and I’ll cut and paste into a spoiler box-

 https://www.wsj.com/amp/articles/the-lonely-odyssey-of-chronic-illness-11645804522

It needs a sub; can you copy and paste? This is pretty near and dear to my heart right now so I'd like to read it if you wouldn't mind.

[statsman 5,450]

In January 2012, on a windy beach by a derelict hotel in Vietnam, my partner, Jim, and I were reading by the water when I noticed a strange rash on my inner arm, seven or eight raised red bumps arranged in a circle. It looked like Braille, I thought. But what was it trying to tell me? “Look at this,” I said to Jim. He glanced at the angry, inflamed rash and said, “That’s strange.”

It was far from the first mysterious symptom I’d experienced. Fifteen years earlier, not long after I graduated from college and spent a weekend with my family at the Connecticut shore, I began experiencing something I called “electric shocks”: flickering pains along my limbs, as if I were being stung by tiny bees. A few months later, I started waking at night covered in hives and soaked in sweat. Soon, I spent days swallowed up by fatigue and joint pain. I had trouble remembering names and faces. The symptoms came and went. I toggled between the conviction that something had to be wrong—I didn’t feel OK—and the conviction that I was doing something wrong, and if I just stopped eating sugar, or pizza, say, I’d be fine.
 

My tendency to ignore my symptoms came in part from the fact that I grew up in a family that was largely indifferent to matters of health. My parents were from large Irish-American Catholic families. They were pragmatic and rather stoic. They thought you didn’t go to the doctor unless you were burning up with fever or had a bad fall or a wound that needed stitching. In that case, you got a diagnosis, you took medicine or had surgery, and you got better, more or less in that order. They saw doctors as unquestionable experts. If they told you nothing was wrong, nothing was wrong.

But when I looked at the rash, I was convinced it meant something. All of these little problems, I thought—they mean something. I stroked the bumps as if they could spell out a word that would unlock the mystery.

A few months later, I made an appointment with a specialist in women’s health at a hospital in New York. The doctor asked me searching questions about the health histories of my parents and their families, which included ulcerative colitis, rheumatoid arthritis and thyroid conditions. She told me that even before she saw my lab tests, she suspected I had “some kind of autoimmune disease.” I was taken aback: For the first time, a doctor had suggested something might in fact be really wrong with my health. If that was true, had I been sick for years?

The lab tests showed that I had low levels of thyroid hormones and antibodies to my thyroid. This meant that my immune system was attacking my thyroid, in a case of mistaken identity. I didn’t ask the doctor many questions. The diagnosis, I thought, was the answer to my problems—the magic solution to the mystery. I knew a lot of people with thyroid disease, and they had taken medicine and gotten better. I assumed I would, too. I picked up my prescription for thyroid replacement hormone and made a follow-up appointment for six weeks later, when, my doctor suspected, I would likely be feeling much better.

But six weeks later, I didn’t feel better. My thyroid hormones stabilized, and the antibodies went away. And yet I got even sicker. My hands began to shake. My blood pressure dropped to 79 over 40. I was so dizzy and exhausted I could barely walk around the block, and at one point I fainted. It felt as if my body were made of sand that I had to hold together through sheer will.

In the fall and winter of 2012, I went to see more high-level physicians and specialists, many of whom didn’t accept insurance. Debt accrued on my credit cards. By then, I had nine doctors—a GP, an endocrinologist, a rheumatologist, a neurologist, a dermatologist, an OB-GYN, a sports medicine doctor who specialized in hip and knee injuries, a nutritionist and a reproductive endocrinologist, to help with trying to get pregnant. No one had any answers.

I grew practiced in choosing only a few symptoms to tell my doctors about, and I didn’t mention the many other doctors I had seen. Many physicians assume patients who “doctor shop” are problem patients. I also learned quickly that one of the worst things I could do was to show up prepared with prior medical records. A 1988 paper by British physician T.C. O’Dowd coined the term “heartsink patients” to describe patients who “exasperate, defeat and overwhelm” their doctors. I didn’t want to be such a patient—a patient who seems to ask too much.

Still, nothing I did could change the fundamental problem: I had a chronic illness, and doctors generally don’t like dealing with chronically ill patients. In chronic illness, the patient doesn’t have a problem that can be solved quickly, but a disease to be managed, physically and psychologically. Such illnesses can be intractable, messy, mysterious. And doctors don’t want to manage; they want to fix. Medical education emphasizes solutions and is often “equated with cure,” according to a 2005 British Medical Journal study of doctor-patient relationships in chronic illness. Unfortunately, “the treatment of chronic disease conflicts so fundamentally with these expectations that it tends to be neglected.”

“The best kind of patient,” the psychiatrist T.F. Main wrote in a 1957 paper, “is one who from great suffering and danger of life or sanity responds quickly to a treatment that interests his doctor and thereafter remains completely well.” The patient whose symptoms fail to go away after a course of antibiotics, the patient with medically unexplained pain—these are precisely the worst kind of patient.

By late February 2014, I was extremely sick. I suffered from brain fog, joint pain and strange neurological symptoms. One night, driving home from a work event with a colleague, I looked at him and realized I had no idea who he was. Each morning, I would sit at my desk to try to write, only to find that I was so tired I would nod off. Pain roamed my body. I had the sense that the energy had been leached from my mitochondria. I felt like I was dying. But I was only 37.
 

Then a doctor I saw tested me for Lyme disease. In all my years of seeing doctors, only one had mentioned the possibility of Lyme disease, and I never got fully tested since the possibility seemed remote to me. I never had a bulls-eye rash, and I thought that you couldn’t have Lyme without the rash. My new doctor explained that this was a mistake; in fact, she said, I had the classic symptoms of a tick-borne disease. Perhaps it was not a coincidence that I had first noticed my symptoms after my family spent time on the Connecticut shore, not far from Lyme, Conn. She wasn’t sure what to do for me, though: If I did have Lyme, I’d had it now for almost 15 years.

Still, it was a possible explanation. So one afternoon I went to see an expert in Lyme disease, Richard Horowitz. As I sat in his office near Poughkeepsie, N.Y., I told him that I didn’t believe I really had Lyme. It seemed like a diagnosis one received when there were no other explanations to offer. My symptoms were mostly neurological; Lyme disease, I had thought, was mostly arthritic. 

Dr. Horowitz explained that some researchers think that different strains of the Lyme bacterium cause different manifestations. He pointed at one of my lab results. “This makes me highly suspicious that you have Lyme,” he said, explaining that I had antibodies specific to the bacterium in my blood. Later tests confirmed the presence of a tick-borne co-infection called bartonella. Dr. Horowitz told me that he thought my body was in fact quite strong, and that was how I had coped for so long. He put me on a month of doxycycline and other medications meant to help my body get rid of the infection.

But the night before I was supposed to start, I hesitated. I knew that antibiotics are damaging to the microbiome—I had embarked on a diet designed to heal the gut when I first got sick. And who knew if I really did have Lyme disease, or whether antibiotics would help me? I had read terrifying stories online about people who only got sicker during their Lyme treatment. But Jim was aghast. “What do you have to lose?” he asked me.

With that, I got a glass of water and began the treatment. Dr. Horowitz had warned me that I might feel worse at points, due to what’s known as the “Jarisch-Herxheimer reaction,” or inflammation produced by bacteria dying and releasing toxins. Lyme patients called it “herxing.” The next day, my body ached and my neck felt like it was on fire. I had the strange sensation that rain was falling on my arms.

At our second appointment, Dr. Horowitz changed the drugs I was taking, adding new antibiotics to the mix. That week, I got sicker than I had ever been. I found myself shivering violently one warm summer night. The electric shocks were so painful that I found myself rubbing my arms until they bruised. I can’t do this, I thought.

The next day, though, I felt more energetic than I had in years. It was a beautiful morning. I put on my running sneakers, lacing them tightly. Ten minutes later, I was nearly jumping for joy during a run through the park. My pace was sluggish, but I ran 3 miles.

As the weeks passed, I got steadily better. Soon I was running 5 miles. I had energy to read and see friends. The night sweats that had been waking me up vanished. I felt like a young person again: ready to see what possibility the day held.
 

The idea that Lyme disease can cause ongoing symptoms that are hard to treat has long been contested within the medical establishment. But by the time I began treatment in 2014, many researchers had embraced the notion that tick-borne disease can trigger long-term symptoms in a subset of patients. Studies conducted at Johns Hopkins University found that up to 20% of even “ideally treated” patients—those who get the classic bull’s-eye rash and take antibiotics promptly—end up with lingering symptoms after infection. As Ramzi Asfour, an infectious disease physician in the Bay Area, told me, “Anyone who says they really understand the pathophysiology of what’s going on is oversimplifying to some degree.” Dr. Asfour has found that his patients need a variety of approaches in order to get better.

But this kind of personalized medicine presents problems for conventional medicine. It demands a creative approach that relies on a holistic evaluation of the patient, rather than algorithmic solutions. It also requires patience—and patience is not conventional medicine’s strong suit. Being an infectious-disease doctor usually allows you to offer a quick fix, Dr. Asfour told me. The patient is sick when you meet them, you find the problem, you administer a medication, and they get better. But a patient who has an illness that won’t go away, whether she is a Lyme patient or a long Covid patient, challenges that model.

I took antibiotics intermittently for eight months. By the spring of 2015, I felt like a person again, even if some of the fatigue and dizziness remained. Those symptoms were manageable compared with the terrifying loss of cognitive function that the Lyme had brought with it. Little webs of feeling that I’d ignored for years shivered in the breeze of my wide-open mind.

A few months later, I got pregnant. I was 39. In the early, dizzying weeks of conceiving after years of trying and failing, I felt many forms of metaphysical joy, but the pregnancy, I believed, was a story I had to work to hold in my mind. If I didn’t, it might fade away, like a dream you can’t remember after you wake up. But the baby just grew and grew, as babies are supposed to. I marveled at what it was like to live at last in a body that worked. Women with autoimmune diseases can feel much better while pregnant, in fact; I was one of them.

I remained uncertain and anxious, but as the pregnancy went on, the feeling evolved. My body had failed me; my body was now not failing me. Perhaps all along my idea of failure had been wrong. Perhaps my body had been working hard to keep me as well as it could despite a serious, life-altering infection, and I needed to find a new story about it. A story that allowed for the contingency of identity, of health, of hope. One that saw survival of any kind as a form of strength. What I had experienced was life itself, the body straining to survive despite the odds stacked against it.

In the summer of 2016, I gave birth to a baby, a boy. He arrived curled like the first letter of his name, C—screaming and then curious.

—Ms. O’Rourke is a poet and the editor of the Yale Review. This essay is adapted from her new book “The Invisible Kingdom: Reimagining Chronic Illness,” which will be published on March 1 by Riverhead.

[Vegas64 673]

Just left the doctor office where I'm being told I need to take a transfusion of blood called IVIG for a suspected autoimmune condition. A little scared of this process, to be honest. Trying not to go to Dr. Google because I will be convinced of all the horrible things.

[Sbbruin 21,829]

My ankylosing spondylitis is going batshit since I had to suspend Remicade during chemo and radiation. I feel like I'm 90 and in pain from my neck to my hips. And can't take even ibuprofen or other NSAID as there is a risk of stomach bleeding during chemo. I'm a mess. May hit the medicinal weed shop for some homeopathic treatment

[Vegas64 673]

58 minutes ago, Sbbruin said:

My ankylosing spondylitis is going batshit since I had to suspend Remicade during chemo and radiation. I feel like I'm 90 and in pain from my neck to my hips. And can't take even ibuprofen or other NSAID as there is a risk of stomach bleeding during chemo. I'm a mess. May hit the medicinal weed shop for some homeopathic treatment

Man, sorry buddy to hear this. How long is chemo? When can you get back on Remicade?

[MoJames 8,244]

6 hours ago, Vegas64 said:

Just left the doctor office where I'm being told I need to take a transfusion of blood called IVIG for a suspected autoimmune condition. A little scared of this process, to be honest. Trying not to go to Dr. Google because I will be convinced of all the horrible things.

What is the diagnosis?

[Vegas64 673]

9 minutes ago, MoJames said:

What is the diagnosis?

Myositis, with more tests to specify as best as possible the "flavor".

[MoJames 8,244]

Dermato and Poly are the only 2 that are treated with IVIG. Both tend to respond well to it. IVIG is expensive, but generally without side effects. It is a huge amount of fluid so you want to be careful with someone dealing with cardiac output. Generally very effective for both.

[Vegas64 673]

7 hours ago, MoJames said:

Dermato and Poly are the only 2 that are treated with IVIG. Both tend to respond well to it. IVIG is expensive, but generally without side effects. It is a huge amount of fluid so you want to be careful with someone dealing with cardiac output. Generally very effective for both.

What does this mean to the non-medical laymen and dummy?

"It is a huge amount of fluid so you want to be careful with someone dealing with cardiac output"

That someone is me, are you saying I should be careful with exercising after infusion? Getting heart rate up? At risk for heart failure or attack?

Between the prednisone and this stuff I'm sure I'll be 50 pounds overweight before you know it.

[MoJames 8,244]

Simply if you have pre-existing heart failure you want to be careful with the amount of fluid you take on.

[Vegas64 673]

3 hours ago, MoJames said:

Simply if you have pre-existing heart failure you want to be careful with the amount of fluid you take on.

Gotcha, thanks!

[Vegas64 673]

4 hours ago, MoJames said:

Simply if you have pre-existing heart failure you want to be careful with the amount of fluid you take on.

You sound like a real doctor and not a Holiday Inn tenant, so thanks for your contributions. I'm scared of side effects of IVIG but your experience of them being minimal is comforting.

[MoJames 8,244]

12 minutes ago, Vegas64 said:

You sound like a real doctor and not a Holiday Inn tenant, so thanks for your contributions. I'm scared of side effects of IVIG but your experience of them being minimal is comforting.

We joke about it at times as it generally makes people overall feel much better and occasionally we are concerned when we get a new patient that is paying cash for the infusion because often this means the provider giving it is banking on it over the "side effects." Similar to steroids in most people. 

[Vegas64 673]

4 minutes ago, MoJames said:

We joke about it at times as it generally makes people overall feel much better and occasionally we are concerned when we get a new patient that is paying cash for the infusion because often this means the provider giving it is banking on it over the "side effects." Similar to steroids in most people. 

All I know is insurance is paying for it or I probably couldn't afford it based on how you are making it sound financially at least!

[Sbbruin 21,829]

I had to suspend my Remicade infusions during chemo and radiation treatment, but my ankylosing spondylitis is absolutely raging and my entire body is one giant inflammation ball. My Oncologist and rheumatologist got together and agreed one round of Remicade should be fine. So in the waiting room to get my lube job. God I hope it works. Being virtually crippled on top of nauseous and generally feeling like I have a perpetual hangover is fucked up.

[Shoxthemonkey 1,976]

50 minutes ago, Sbbruin said:

I had to suspend my Remicade infusions during chemo and radiation treatment, but my ankylosing spondylitis is absolutely raging and my entire body is one giant inflammation ball. My Oncologist and rheumatologist got together and agreed one round of Remicade should be fine. So in the waiting room to get my lube job. God I hope it works. Being virtually crippled on top of nauseous and generally feeling like I have a perpetual hangover is fucked up.

I'm not sure which rep emoji I'm supposed to use here to let you know that I know that fucking sucks.

[Vegas64 673]

56 minutes ago, Shoxthemonkey said:

I'm not sure which rep emoji I'm supposed to use here to let you know that I know that fucking sucks.

I had the same thought and response-- how to empathize, with a droll or rage?

Sucks that just goes to show you with AID's-- you really are just treating symptoms mostly because to get to true remission feels like it's a matter of winning a genetic lottery ticket of luck.

[Vegas64 673]

On 7/7/2022 at 3:53 PM, MoJames said:

We joke about it at times as it generally makes people overall feel much better and occasionally we are concerned when we get a new patient that is paying cash for the infusion because often this means the provider giving it is banking on it over the "side effects." Similar to steroids in most people. 

Great news. I got aseptic meningitis as a nice side effect from my first IVIG transfusions.
 

So, the first treatment (cellcept) wouldn’t work for me because of the side effects. This was plan B. Sounds like I’ll not be a candidate due to side effects. I wonder if there is a plan C in mind with any efficacy, now.

Edited July 31, 2022 by Vegas64

[Judge Roybeanbag 11,819]

On 7/13/2022 at 12:36 PM, Sbbruin said:

I had to suspend my Remicade infusions during chemo and radiation treatment, but my ankylosing spondylitis is absolutely raging and my entire body is one giant inflammation ball. My Oncologist and rheumatologist got together and agreed one round of Remicade should be fine. So in the waiting room to get my lube job. God I hope it works. Being virtually crippled on top of nauseous and generally feeling like I have a perpetual hangover is fucked up.

Dude I wish I could wave a magic wand and get you well.   

[Sbbruin 21,829]

3 hours ago, Judge Roybeanbag said:

Dude I wish I could wave a magic wand and get you well.   

You and me both.  Got the remicade and made a massive difference.  Now just dealing with brutal chemo nausea.  Fun

[MoJames 8,244]

21 hours ago, Vegas64 said:

Great news. I got aseptic meningitis as a nice side effect from my first IVIG transfusions.
 

So, the first treatment (cellcept) wouldn’t work for me because of the side effects. This was plan B. Sounds like I’ll not be a candidate due to side effects. I wonder if there is a plan C in mind with any efficacy, now.

Not uncommon. It's a headache that makes you feel like crap for a day. We generally pretreat with Solumedrol.

[Vegas64 673]

7 hours ago, MoJames said:

Not uncommon. It's a headache that makes you feel like crap for a day. We generally pretreat with Solumedrol.

It’s a 4 day migraine and sore neck, but yea, I guess not catastrophic. But it doesn’t not suck. 

[Vegas64 673]

On 7/6/2022 at 3:23 PM, MoJames said:

Dermato and Poly are the only 2 that are treated with IVIG. Both tend to respond well to it. IVIG is expensive, but generally without side effects. It is a huge amount of fluid so you want to be careful with someone dealing with cardiac output. Generally very effective for both.

Figured I'd bump this thread as it appears that IVIG is not really helping. It's interesting because I'm on "good therapy" for the majority of people with this illness with IVIG and prednisone and methotrexate (CellCept has too extreme of side effects)-- so next step is Rituxan if insurance will pay for it. My doctors are concerned that they won't pay for it but it's the only thing they think that can stop the lung involvement which has become serious in rapid fashion.

Anyone have any GOOD experiences with their insurances helping with expensive therapies for AID?

[Vegas64 673]

On 12/30/2022 at 12:25 PM, Vegas64 said:

Figured I'd bump this thread as it appears that IVIG is not really helping. It's interesting because I'm on "good therapy" for the majority of people with this illness with IVIG and prednisone and methotrexate (CellCept has too extreme of side effects)-- so next step is Rituxan if insurance will pay for it. My doctors are concerned that they won't pay for it but it's the only thing they think that can stop the lung involvement which has become serious in rapid fashion.

Anyone have any GOOD experiences with their insurances helping with expensive therapies for AID?

Thought I'd update this-- I finally got the insurance company to approve the Rituxan. It was a pain and took a lot of time and appeals, but from what I've read, it's really good to stop and repair the lung involvement (ILD) with my auto-immune.

[Shoxthemonkey 1,976]

Bump to bring my posts in another forum to a more appropriate audience.

On 4/27/2023 at 7:36 AM, Shoxthemonkey said:

I was diagnosed with Polymyalgia Rheumatica yesterday. I have been stiff and sore for 3 weeks but I didn't go to the doc because I knew I had my usual diabetes checkup coming up. That was a mistake on my part. When our pharmacy opens I will get started with Prednisone pills.

https://www.niams.nih.gov/health-topics/polymyalgia-rheumatica-giant-cell-arteritis

Polymyalgia rheumatica and giant cell arteritis are closely linked inflammatory disorders that almost always occur in people older than age 50. Polymyalgia rheumatica causes muscle pain and stiffness in the shoulders, upper arms, hip area, and sometimes the neck. The ache and stiffness are usually worse in the morning or when you have not been moving for a while. They can sometimes be very debilitating and tend to improve with activity. 

People with polymyalgia rheumatica sometimes have another disorder called giant cell arteritis, which is associated with inflammation of arteries, especially those located on each side of the head, scalp, and the aorta (the large artery that carries blood from the heart) and its main branches. Headaches, scalp tenderness, and jaw pain are common features of giant cell arteritis. If the blood vessels that nourish the eyes are affected, there may be visual problems such as fleeting or permanent vision loss or double vision. It is important to seek treatment right away if you have visual symptoms, because if left untreated they may potentially lead to permanent blindness. Giant cell arteritis is also known as temporal arteritis and Horton disease.

Both disorders generally respond well to treatment, although it is common for symptoms to recur after decreasing or stopping therapy.

Additionally, my PSA number spiked and I now have an appointment with a specialist to discuss a prostate biopsy.

Tell me all of your biopsy horror stories, please.

 

11 minutes ago, Shoxthemonkey said:

The doctor never sent the script to the pharmacy because the sed rate came back slightly elevated but not to the clinical standard. Her office also didn't get back to me until this morning. The Mayo Clinic link from my earlier post (that she directed me to) says this:

Blood tests. Besides checking your complete blood counts, your doctor will look for two indicators of inflammation — erythrocyte sedimentation rate (sed rate) and C-reactive protein. However, in some people with polymyalgia rheumatica, these tests are normal or only slightly high.

A little digging found this:

https://www.ncbi.nlm.nih.gov/corehtml/pmc/pmcgifs/wm-reumatol.gif

According to Step 3 it would be OK to go ahead with the Prednisone and see what happens.

Any Surly Docs want to chime in? I'm making another appointment with another Doctor this afternoon.

In the meantime, I'm hurting like a motherfucker.

 

PMC full text:

Reumatologia. 2018; 56(1): 1–2.

Published online 2018 Feb 28. doi: 10.5114/reum.2018.74740

Copyright/LicenseRequest permission to reuse

Table I

A four-point guidance on how to investigate PMR when normal ESR and CRP coexist

1. In an older person complaining of chronic bilateral shoulder and hip girdle pain associated with inflammatory morning stiffness, a possible PMR can be considered (even if ESR and CRP are both normal) if the proposed therapies do not improve pain and self care

2. An ultrasound examination of shoulder and hip girdle as well as the measurement of other biomarkers in adjunct to ESR and CRP can give additional information

3. A fast and significant improvement after a few days (seven days, on average) of low-dosed prednisone can confirm the first diagnostic suspicion, but it should be kept in mind that a watchful follow-up is mandatory

4. Several diseases can mimic PMR in some clinical features and in positive response to low-dose prednisone. They must be carefully excluded (not only at the beginning but also after follow-ups). The possibility of occult GCA should be investigated

Any advice?

[wild_turkey 3,159]

Sorry to hear about your situation. What is your question? Whether or not prednisone treatment is advisable?

Prednisone can help a lot of autoimmune and inflammatory conditions, but it also has side effects and risk. You mentioned having diabetes and one risk of prednisone is worsening blood sugar control. It would be up to your doctor to determine if the potential benefits of treatment justify the risks in your specific case.

You mentioned having significant pain. Did your doctor offer any treatment recommendations for this?

[Shoxthemonkey 1,976]

17 minutes ago, wild_turkey said:

Sorry to hear about your situation. What is your question? Whether or not prednisone treatment is advisable?

Prednisone can help a lot of autoimmune and inflammatory conditions, but it also has side effects and risk. You mentioned having diabetes and one risk of prednisone is worsening blood sugar control. It would be up to your doctor to determine if the potential benefits of treatment justify the risks in your specific case.

You mentioned having significant pain. Did your doctor offer any treatment recommendations for this?

No, she didn't offer any other treatment but I was only talking to her nurse. The nurse made it sound like they were looking for some other malady. Before the Doc had the results from the blood work we discussed prednisone and the side effects. Several years back I had carpal tunnel surgery on both wrists. Prior to each surgery, the surgeon prescribed prednisone for a short time. We discussed the diabetes ramifications at that time and he didn't think it was enough to not do it.

I have another meeting with the Doc this afternoon. I'll see what she thinks. This was a miserable weekend.

[Vegas64 673]

As someone who has been on Prednisone, at a very high dosage (40-60mg), daily for over a year, I cannot wait to be off it.

That said, it is a miracle drug for combatting inflation. I had CK numbers in the 9000's before steroids. Got them down sub-500 (normal range is 0-235).

From what I understand, long-term use sucks the life out of your bones and leaves you with brittle, weak bones and a risk for osteoarthritis and bone disease.

Edited May 1, 2023 by Vegas64

[Shoxthemonkey 1,976]

@wild_turkey Just got back from the Doctor. Will be starting a well monitored Prednisone treatment this evening. I'm also being referred to a rheumatologist for further study.  There was some misunderstanding between the nurse and I but the Doctor laid out a steroid plan as soon as we got together. Thanks for responding. I really wasn't clear at all what I was asking advice about. Typical of me typing and thinking concurrently.

[wild_turkey 3,159]

Good deal. Didn’t realize you hadn’t seen a rheumatologist yet. That’s pretty critical for confirming the diagnosis and determining the best long term treatment. Hopefully the prednisone helps in the meantime.

[chikin23 384]

In May of 2018 my legs started hurting. It was a dull aching pain that felt like they were just sore (I had played basketball several times that week) but the pain kept getting worse and worse. A few days later I was in a meeting and my hands, arms, and legs felt like they were on fire. I had no strength in my hands or extremities. I was sitting in a meeting and tried to pick up s pencil and couldn’t grip it. My boss sent me home and I had to loop my arm through the steering wheel and pull myself into my truck. I vividly remember getting home and an Amazon package being delivered. I went to open the door and couldn’t even turn the door knob (we had childproof locks on them).

My wife came home and I was curled up in the fetal position on the floor. She drove me to the doctor, he did all kinds of tests and I was diagnosed with polymyositis. My arms and legs ache for the most part nonstop and I’ll occasionally get a tingling/burning sensation in my hands and feet. I take medicine for it has stayed under control for the most part. I’ve never felt the pain I did in 2018 and still don’t have any idea what brought it on or caused it.

[Judge Roybeanbag 11,819]

So when I was like 14, I started vomiting and having this whole thing, getting put into the hospital because has to be food poisoning. Nope.   It’s this thing called Heriditary Angioedema. There’s a drug that can fix that.  Costs $40k per month.  Haha. 

[Vegas64 673]

2 hours ago, chikin23 said:

In May of 2018 my legs started hurting. It was a dull aching pain that felt like they were just sore (I had played basketball several times that week) but the pain kept getting worse and worse. A few days later I was in a meeting and my hands, arms, and legs felt like they were on fire. I had no strength in my hands or extremities. I was sitting in a meeting and tried to pick up s pencil and couldn’t grip it. My boss sent me home and I had to loop my arm through the steering wheel and pull myself into my truck. I vividly remember getting home and an Amazon package being delivered. I went to open the door and couldn’t even turn the door knob (we had childproof locks on them).

My wife came home and I was curled up in the fetal position on the floor. She drove me to the doctor, he did all kinds of tests and I was diagnosed with polymyositis. My arms and legs ache for the most part nonstop and I’ll occasionally get a tingling/burning sensation in my hands and feet. I take medicine for it has stayed under control for the most part. I’ve never felt the pain I did in 2018 and still don’t have any idea what brought it on or caused it.

Same. Except the usual meds didn't work for me and I had to stair step to the most aggressive and expensive one and the jury is still out (though I'm stair stepping down from prednisone these days, too, slowly but surely).

[Vegas64 673]

On 5/10/2023 at 8:20 PM, Judge Roybeanbag said:

So when I was like 14, I started vomiting and having this whole thing, getting put into the hospital because has to be food poisoning. Nope.   It’s this thing called Heriditary Angioedema. There’s a drug that can fix that.  Costs $40k per month.  Haha. 

I can beat that. I have to take a drug 2x a year that costs $60k a pop, so $120k a year, according to my insurance EOB.

Oops you said $40k a month or $480k a year. You win.

Edited May 12, 2023 by Vegas64

[Vegas64 673]

On 5/10/2023 at 8:06 PM, chikin23 said:

In May of 2018 my legs started hurting. It was a dull aching pain that felt like they were just sore (I had played basketball several times that week) but the pain kept getting worse and worse. A few days later I was in a meeting and my hands, arms, and legs felt like they were on fire. I had no strength in my hands or extremities. I was sitting in a meeting and tried to pick up s pencil and couldn’t grip it. My boss sent me home and I had to loop my arm through the steering wheel and pull myself into my truck. I vividly remember getting home and an Amazon package being delivered. I went to open the door and couldn’t even turn the door knob (we had childproof locks on them).

My wife came home and I was curled up in the fetal position on the floor. She drove me to the doctor, he did all kinds of tests and I was diagnosed with polymyositis. My arms and legs ache for the most part nonstop and I’ll occasionally get a tingling/burning sensation in my hands and feet. I take medicine for it has stayed under control for the most part. I’ve never felt the pain I did in 2018 and still don’t have any idea what brought it on or caused it.

I just saw on my newsfeed that Peter Frampton has myositis 

 

 

Peter Frampton is on his final tour after ‘troubling’ diagnosis of incurable disease

PETER FRAMPTON, 72, has been on his live performance finale The Farewell Tour years after being diagnosed with a devastating disease that causes muscles to waste away.

 https://www.hopkinsmyositis.org/gift/peter-frampton-myositis-research-fund/#:~:text=The Peter Frampton Myositis Research,to ultimately find a cure.

[Sbbruin 21,829]

4 minutes ago, Vegas64 said:

I can beat that. I have to take a drug 2x a year that costs $60k a pop, so $120k a year, according to my insurance EOB.

I take Remicade for my auto-immune issues (ankylosing spondylitis and UC) which runs about $9k each 7 weeks, but the immunotherapy drug Opdivo run $25k every 2 weeks.  Oof.  Thanks Anthem Blue Cross. 

Edited May 12, 2023 by Sbbruin

[Vegas64 673]

5 minutes ago, Sbbruin said:

I take Remicade for my auto-immune issues (ankylosing spondylitis and UC) which runs about $9k each 7 weeks, but the immunotherapy drug Opdivo run $25k every 2 weeks.  Oof.  Thanks Anthem Blue Cross. 

Brother? I'm Anthem Blue Cross too.

[Sbbruin 21,829]

6 minutes ago, Vegas64 said:

Brother? I'm Anthem Blue Cross too.

'm into those suckers for over a million this past year with cancer treatments/surgery.  I think I'm out of pocket about $5,000.  I'll take it.

[beer 3,220]

I know for certain that having an autoimmune illness makes people recall long detailed personal facts on message boards. 

[Shoxthemonkey 1,976]

On 5/1/2023 at 5:16 PM, wild_turkey said:

Good deal. Didn’t realize you hadn’t seen a rheumatologist yet. That’s pretty critical for confirming the diagnosis and determining the best long term treatment. Hopefully the prednisone helps in the meantime.

I had a temporal artery biopsy Tuesday and I'm scheduled to see a rheumatologist mid-July. I've been on prednisone again since the 5th of June. I am supposed to get the biopsy results next Tuesday. The biopsy was done because I  had a couple of blurred vision episodes. Overall, I'm functioning pretty well. We traveled to the Keys for our Anniversary and another wedding in JAX without too much discomfort. So far so good.

[HonkeyVape 107]

2 hours ago, Shoxthemonkey said:

I had a temporal artery biopsy Tuesday and I'm scheduled to see a rheumatologist mid-July. I've been on prednisone again since the 5th of June. I am supposed to get the biopsy results next Tuesday. The biopsy was done because I  had a couple of blurred vision episodes. Overall, I'm functioning pretty well. We traveled to the Keys for our Anniversary and another wedding in JAX without too much discomfort. So far so good.

How many mgs of prednisone?

[joe dirt 285]

On 5/12/2023 at 11:37 AM, Vegas64 said:

I can beat that. I have to take a drug 2x a year that costs $60k a pop, so $120k a year, according to my insurance EOB.

Oops you said $40k a month or $480k a year. You win.

 

On 5/12/2023 at 11:40 AM, Sbbruin said:

I take Remicade for my auto-immune issues (ankylosing spondylitis and UC) which runs about $9k each 7 weeks, but the immunotherapy drug Opdivo run $25k every 2 weeks.  Oof.  Thanks Anthem Blue Cross. 

 

said this on the prescription thread, but we were running neck and neck with bruin for a while. my 16 yr old has crohn’s and was taking $30k dose of stelara every two weeks for over a year. we’ve recently moved on to 1x stelara ($30k) and 1x entyvio ($10k) per month. you’re welcome, united healthcare. 

she’ll be doing yet another scope next month ahead of changing out entyvio for rinvoq. one of these days we’ll get this poor child into remission. 

 

keep soldiering on my dudes. 

[Sbbruin 21,829]

Bump.  I was on an immunotherapy drug (Opdivo) the first half of '23, and it quite literally ripped me a new asshole, or at least plenty of holes in my colon.  Had to stop the Opdivo, but the uclerative colitis, which had always been held in check with Remicade, has been fucking me up to no end for months and months.  Tried all manner of steroids with little relief.  So after chasing various solutions, the next step is to drop the remicade (which I've been taking for almost 2 decades and which works wonders on my ankylosing spondylitis) in favor of Rinvoq, which treats both AS and UC.  But it does lead to clotting, and having been diagnosed with having had a stroke sometime in June, there is a concern there.  God I'm a fucking mess.  Even though it appears the cancer is in remission, the fallout has been brutal.  And although it's only January, I think I have the shart thread all locked up for '24.  In no way do I document all my misgivings, but suffice it to say numerous underwear have been tossed, at work and otherwise.  FML.

[Shoxthemonkey 1,976]

Good luck, Bruin. I’m sending all the mojo I can spare your way. 

[Basil 754]

 
said this on the prescription thread, but we were running neck and neck with bruin for a while. my 16 yr old has crohn’s and was taking $30k dose of stelara every two weeks for over a year. we’ve recently moved on to 1x stelara ($30k) and 1x entyvio ($10k) per month. you’re welcome, united healthcare. 
she’ll be doing yet another scope next month ahead of changing out entyvio for rinvoq. one of these days we’ll get this poor child into remission. 
 
keep soldiering on my dudes. 

Sorry to just butt into your business but my wife has Crohn’s and fought it like a Mfer from age 20 to about 35. She ended up with 2 resections, Remicade and all that and was still flaring up. She ended up controlling it with diet. She popped up allergic to all sorts of common food - gluten, dairy, etc. She cut that out and has been pretty good ever since. No more drugs or flare ups.