Extreme Joint Pains ({[Strange]}) - Advanced Prostate...

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Extreme Joint Pains ({[Strange]})

Jimhoy profile image
80 Replies

I learned a long time ago to believe that anything strange that is happening to me is related to ADT!!! Right or Wrong but, I’ve been mostly right after feedback from my brothers (and a couple sisters) here more or less confirmed it but at least justified it!!! This while mostly doubted by the professionals!!

So here it is!! A while ago, I developed a severe pain in my left hip. Had it checked....arthritis. Right! All of a sudden! Fine. A few months ago, I developed a severe pain in my left knee. Been living with it!!! If I get it checked, I already know the answer!!! Now recently, my left shoulder is all of a sudden, freaking KILLING me!!!! These are not injuries..... otherwise I would not mention them!!!

ALL on LEFT?!!! I find that strange!!! No sign of any pains on the right side!!!

I have a follow up appointments with my Urologist and Rad Oncologist next week and my Primary Care the week after and will present this to them but in the mean time, I’d like the real answers from the real experts here!

Does anyone here have any experience with a symptom like this?!!!

Jc

Lets keep this bus rolling. In the past year, I gotten trigger finger on one finger and Dupuytren's contracture on an adjacent finger on, wait for it, my left hand!!!!

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Jimhoy
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LearnAll profile image
LearnAll

One simple rule is...if the joint pain is of acute onset, most likely it is because of inflammation. Osteoarthritis does not develop overnight because its a chronic wear and tear event.

But arthritic joints can get inflamed easily.

If it is inflammatory pain...anti inflammatory meds (NSAIDS) and/ or supplements (ginger, turmeric garlic boswellia etc) can reduce it

Nothing abnormal is seen on x rays if joints are simply inflamed. In osteoarthritis, bone spurs and narrowing of joint space can be seen on x ray.

Its true that one of the side effect of ADT is joint pains but it may not occur in everyone on ADT.

Jimhoy profile image
Jimhoy in reply to LearnAll

Please excuse me!!! Severe cognitive impairment really slows me down.

Your response really sparked something in what’s left of my mind!!!

Over the past year or so, I have been plagued with joint pain all over. Understood that to be somewhat normal for ADT!!! Well, then I had what I thought to be a gout flair up and took some left over Indomethacin (I get gout when I misbehave with rich diet). I was amazed that ALL my pains went away!!! It remained that way as I continued to take them after the gout went away, but my PcP would not renew my script for fear of liver damage?!!! Slowly, the pains were coming back so I convinced her to prescribe Celebrex which I am still on!! This transition is about when the knee started up!!! The hip pain was restricting my motion but not the pain I had prior nor the pain now!!!

Thanks for sparking that memory. Very valuable omission on my part!!!

That being said it makes it stranger to me that all pain is on the left when now I recall pain was global!! I have to add that although global, it was no where as bad as it is now!!

Jc

Jimhoy profile image
Jimhoy in reply to Jimhoy

Lets keep this bus rolling. In the past year, I gotten trigger finger on one finger and Dupuytren's contracture on an adjacent finger on, wait for it, my left hand!!!!

LearnAll profile image
LearnAll in reply to Jimhoy

you would like to keep a close eye on your electrolytes and serum calcium levels. also, check your parathyroid hormone levels.

oldgrumps profile image
oldgrumps in reply to Jimhoy

I have had 6 operations for Dupuytren’ s contracture all very successful. I was first told you have to wait for them to ripen before an op! The last 3, I insisted on early ops and was far better, interesting though, last year I had another, so I lanced it with a syringe and it disappeared over 6 months! Always get them sorted or you could end up having fingers removed!

Jimhoy profile image
Jimhoy in reply to oldgrumps

I have trigger finger on an adjacent finger which is a little more annoying than the DC. She said if to get to the point where it is intolerable, she would do both but as is, BC/ BS won’t cover it!!

Jc

LearnAll profile image
LearnAll in reply to Jimhoy

You have history of GOUT which is a severely inflammatory condition. This tells that you might have stronger tendency for joint inflammation

Eating anti inflammatory food, anti inflammatory supplements every day might reduce your need for strong pain meds ..thus saving you from unnecessary side effects they cause.

Jimhoy profile image
Jimhoy in reply to LearnAll

The gout medication issue reminded me of the inflammation issues. I believe I posted something about it but my CRS syndromes (can’t remember shit) prevents me from locating!!! I looked into the diet and that will take a shit load of work on my part. Going to work on it but I keep in mind that this condition is paralleling my ADT!! Never an issue prior!! There has to be something to that!!! As far as all the pains on the left now, just thought it to strange!!! Sort of like pains in the legs because it furthest from the heart, thought there might be some logic to it!!!

Pain med are not in the equation! I have a decent pain threshold and when it gets close, I’ll take a few Alieve to get over it!! Although some heavy stuff has been offered by Dr’s, I’m not going down the pain killer slippery slope in the foreseeable future!!!

Thanks

Jc

Jimhoy profile image
Jimhoy in reply to LearnAll

With what is left of my mind, memories come at will!!! Sitting here, I just recalled that I came down with an inflamed appendix 6 mo’s ago. I had to have an emergency appendectomy. I was lead to understand that appendicitis is also due to excess inflammation!!!

In researching your anti inflammatory diet, I bumped into articles referencing inflammation in the brain. If it’s excessive in my joints and organs, why not there too!! This could be contributing to my severe cognitive issues!!

Thanks for the lead. This may be helpful to me on many levels!!!

I don’t know if there are test for this but will surely run it by my Dr’s in the next couple weeks!!!

Jc

LearnAll profile image
LearnAll in reply to Jimhoy

Scientists are finding more and more evidence that inflammation is key to many illnesses such as cancers and autoimmune diseases like colitis etc.

Before a cancer fully blossoms and diagnosed there was inflammation of that organ

Some examples are gastritis before stomach cancer, endometritis before uterus cancer, pancreatitis before pancreatic cancer, prostatitis before prostate cancer and so on.

ITIS which means inflammation and that causes changes in normal cells and turn them into cancerous cells. Long standing inflammation leads to cancer.

Inflamed brain changes memory cells and make them less functional. High fat especially animal fats lead to blockages of tine blood vessels in the memory cortex where memories are stored. Accumulation of fat inside these vessels cause dysfunction and death of memory cells leading to forgetfulness. Anti oxidants and anti inflammatory things slow memory loss.

Currumpaw profile image
Currumpaw in reply to Jimhoy

Hey Jimhoy!

About 10 years ago while in the market, in the canned fruit section, a short woman asked if I would please reach some of the cans of black cherries in liquid. Black cherries in liquid, not syrup? What were these for I wondered? I handed her two cans as she had used the plural form and she asked for more and then more! My curiosity was piqued! "Are you making a pie?" I asked as I was thinking that the bright red cherries in syrup would be a better choice. "No" she said. "He has the gout and he eats these instead of taking the medicine because of the side effects." She told me that the cherries worked as well without side effects. I figured that info might be worth a few brain cells and tucked it away.

There are tart cherry supps. A friend, one of the brothers who own a deli said one day that his foot was very painful, his gout was bothering him. I picked up a bottle of tart cherry extract from the Vitamin Shoppe for him. He has never complained again. I guess it does work.

Imagine what one can learn in the canned fruit section of a supermarket!

Jimhoy profile image
Jimhoy in reply to Currumpaw

There is something to that!!! I would get gout if I had a clam bake with lobster, washed it down with red wine and had the same for leftovers that night. Wayyyyy too much rich food and wake up with a random joint (usually toe or knee ( they say because most away from the heart)) feeling like a ice pic was stuck in it!!!

My mother (now 94yo) would always said “you need to eat cherries” when I had it!!

Jc

Currumpaw profile image
Currumpaw in reply to Jimhoy

Hey Jimhoy!

Your Mother too? She deserves the capital "M"!

Currumpaw

Jimhoy profile image
Jimhoy in reply to Currumpaw

A very wise woman....still!!!

monte1111 profile image
monte1111 in reply to Jimhoy

I had a gout attack once. Worse than a root canal.

Jimhoy profile image
Jimhoy in reply to monte1111

Mine, only when I tried to move it or some one touched it!! Just sitting there, nothing. But even think about moving it and HOLY SHIT!!!!!!

Jc

tom67inMA profile image
tom67inMA

All your pain is on your left side? Well you sound "all right" to me :-) (sorry I couldn't resist)

Every time somebody injects me with something (Xgeva, Docetaxel, Lupron, Shingrix, Flu shot) my joints ache and I need to take a few extra naps. But, generally the aches come and go and once I get moving and loosened up they don't limit me at all. In fact, my range of motion has been gradually improving.

As for weird pains, when I run I get one joint in one finger that hurts. WTF is that about?

p.s. Celebrex has been fantastic for me.

Jimhoy profile image
Jimhoy in reply to tom67inMA

Good job!!! I hate disappointment!!! Somebody had to say it but I expected it from J-O-H-N but.... he’s tough to beat, good job!!!

You’re not dragging your finger down a picket fence are you?!!!

Card in the spokes thing!!!

The jury is still out with Celebrex with me!! The Indomethacin worked like a dream!!!

Jc

Jimhoy profile image
Jimhoy in reply to tom67inMA

Reminds me of a joke;

I went to the Dr and said I hurt on my left side.

I touched my left ankle and said “it hurts here”.

I touched my left knee and said “it hurts here”.

I touched my left hip and said “it hurts here”.

I touched my left shoulder and said “it hurts here”.

Dr told me he knew what was wrong with me.

My finger was broken!!!

Jc

2dee profile image
2dee

This sounds somewhat like my experience prior to my fully metastasized Stage4 PCa Dx. Pain just jumped around my whole body spending a few days or so at each region. From ribs on one side to a knee to a shoulder to a shin back to the other shoulder ribs again and on and on...

This I believe was PCa chewing randomally on my bones.

2Dee

Jimhoy profile image
Jimhoy in reply to 2dee

Well now I don’t want to hear that!!!!! But you hit my gut feeling on the head!!!! I read a lot about bone pain and you can’t “not” think about it!!!

Initial test at time of Dx did not indicate that but, you know Murphy’s Law “what can happen will happen”!!!!! F$&*ing Murphy is waiting around ever corner with me!!

PSA was not detectable at 6mo’s after my last 3mo injection so it was decided to wait another 6mo’s which is next week. Pains really kicked in the past couple of months!!! Not sure how fast it progresses but, I’ll ask Murphy!!!!

Picked the wrong month to quit drinking!!!!

Thanks

Jc

Attitude67 profile image
Attitude67

You need to have a blood sugar panel drawn as well as a renal panel. If you take statins, steroids, lupron, or several other ADT drugs there is an increased risk that you may become diabetic. This increases with your age. If you have gout, hives, rashes, or joint pains diabetes needs to be eliminated. If you are pre-diabetic, or have diabetes II those are the side effects of the disease. You need to have a renal panel because diabetes even at its onset damages the kidneys causing neuropathy and serious pains that are often diagnosed as something else. Most of the joint pain, itching, and swelling is the result of one of several different types of urine crystallization occurring in different tissues. They are all similar to and include gout.

Jimhoy profile image
Jimhoy in reply to Attitude67

Although I haven’t needed it in many years, I maintain my CDL (commercial drivers license) which requires being tested for diabetes every two years.

I also have a full physical yearly (DMV won’t accept this, must be separate) so I’m really checked 3 times in every 2 years!!!

I do have neuropathy in my feet and I find it funny that you mention that!!! Though, that has been ongoing before ADT and long before the pains that I reference here!!

Got blood work due next week for that annual physical in two weeks!! There are 6 things listed so I’m sure thats one only in its scientific name!! All greek to me!!!

Thanks for your observation!!!

Jc

Jimhoy profile image
Jimhoy in reply to Attitude67

Please see my message!!

EdinBmore profile image
EdinBmore

I feel your pain ...sorry, couldn't resist. ADT here (Firmagon and Lupron..the devil's brew).

Yes, it's weird to have pain on one side more than the other. As of now, I attribute almost everything that makes no sense to ADT side effects. The side effects often come and go, regardless of what I do. For example, I had severe Charlie Horse for a week in one calf each morning (and, yes, left side). Go figure. Most recent is join pain. Was severe for several weeks and included trigger finger (both hands, ring fingers). Pain in feet, knees, hands, shoulders. I tired NSAIDs, turmeric, and other lotions and potions (a shot of liquor seemed to help as much as anything, btw). Symptoms worse in early morning. Getting out of bed has been a real knee slapper; thank god no one is watching. LOL

I've told the docs and they smile and nod but offer little else. Btw, had every frickin' blood test there is - from testing for Lyme's disease to RA panels to tests for other "system diagnostics." Nothin' And, yes, blood work out of wack. A1C and glucose up and down. Anemia. Borderline diabetes. Higher BP. Triglycerides high. And, so on.

Meanwhile, wt gain, fatigue, zip, zero, zilch sex drive, smaller genitals...it's been a real hoot.

Hope you find some solace in the group's comments, empathy, and suggestions. If you find things that work for you, please share. This is a club that no one wants to be a member of.

Oh, btw, join pain seems to be subsiding on its own.

Hang in there.

EdinBaltimore

Jimhoy profile image
Jimhoy in reply to EdinBmore

I admittedly “WAS” a tough guy!!! In the past 2 1/2 years, my mussels mass is mostly gone, I’m as fat as a well fed tick and dumb as a stump. I can still handle the trailer hitch to the shins type pain with just a few swears!!! And these are pains!!! No injuries, no swelling, no discoloring......just pain.

After the hip fiasco ( PcP visit, X-rays, orthopedic visit, Dx and treatment) with ZERO IMPROVEMENTS, I no longer complain to my Dr’s knowing I’ll just reopen Pandora’s box!!! Test test test $$$$$$$$$! I try not to complain to my wife but that “old man noise” while getting up prompts her to ask!! To which she’ll always say “ you need to get that checked” EVERY WAKING MOMENT!!!! God bless her but, not going to happen!!!

Eligard should be out of my system by now (according to the professionals) but side effects are still unrelenting. If I come out of next weeks follow up appointments with no bad news, I hope in time, this will be one of the side effects that go away!!!

We’ll see

Jc

Ps: the fat and the genitals thing sure proves that god has a sense of humor! Not a good one but...! The cancer is on the inside but how can I show the world?!!!! Lets, see.... how can I make this a little more humiliating?!!!

Lupronzytiga profile image
Lupronzytiga in reply to Jimhoy

So true, I quit discussing side effects with my wife.

They are hard for my wife to understand and the Doc's just say to tolorate.

People on this board understand fatigue. Most people have no idea. Rest does not cure fatigue. Every day is a choice. Get up an push thru is the choose that I made.

My Oncologist has said many times. What's the best choice? You want to cure your cancer, don't u?

Fortunately, I am coming off Lupron/Zytiga/Prednisone on 11/15.

Praise God.

2.5 years of hell but I am at the finish line and cancer free.

PSA<0.06 for the last 18 months.

Jimhoy profile image
Jimhoy in reply to Lupronzytiga

Great news!!!! You’re truly blessed!!! I want to be like you when I grow up!!!

Sort of made it through hell before the devil knew you were there!!

Goes without say to keep an eye on that sneaky little prick though!!!

I never really bitched to my wife but she aaallllwwwwaaaayyyysssss asks!! She was with me when I was Dx’ed and heard the boilerplate from the Dr saying “it’s just hot flashes / night sweets and no libido”! Sort of like her menopause!!! So anything above and beyond that was the husband with the flu stereotype!! Suck it up Nancy, it’s not that bad!!! I plowed the lower 40, clean the whole house then go to work with the flu!!!!

That put her on even a more “need to know” status!!!

Jc

EdinBmore profile image
EdinBmore

Your sense of humor and the absurdity of all of this..good for you!

Btw, my last Lupron injection was in early May; 3 mo duration. BUT, it's still has a hold on me. The gift that just keeps giving!

I exercise. Machines and elliptical but the muscle mass? Poof. Gone. Sigh. I'm cute as an overweight, 70 yr old with small dick and grape size balls. Got the image? LOL

Good to chat!

Ed

Jimhoy profile image
Jimhoy in reply to EdinBmore

An image that will haunt me.....oh look, a mirror....shit, never mind!!!!

Best of luck!!

Jc

Muffin2019 profile image
Muffin2019

I have heard that one side is stronger but not sure how medically true. I found out that I have arthritis in my ankle, knees and right shoulder at last scan. I take the joint supplement every day and work part time to keep limber. My mom had the same thing so it is heredity , she used to say if you sit you rust. I also take the stronger Tylenol when I overdue which happens alot.

Jimhoy profile image
Jimhoy in reply to Muffin2019

I’m no stranger to joint pain!!! A lifetime as a mechanic and in heavy construction has resulted in either banging and bruising everything!!! The wear and tear on my joints from banging with hammers, prying with bars, lifting, bending, and injuries for sooooo many years resulted in my needing multiple cortisone shots each year, at various locations / joints.

After trying many, I found a joint supplement 20 years ago that eliminated the need for shots!!!

Didn’t seem to work at all on the new ADT joint pains though!!!

Jc

in reply to Muffin2019

Sitting is killer on the hips .😩

Jimhoy profile image
Jimhoy in reply to

My point exactly......hip(s). I would not question plural!!! But just left struck me as strange!!! Plus, (truth be told) I have too much time on my hands 🤣😂😅😁!!!!!!

Jc

2dee profile image
2dee

I see an image of a frightened baby turtle trying to hatch a couple of old raisins...

2Dee

Jimhoy profile image
Jimhoy in reply to 2dee

They say a snapper’s head / neck can reach its tail!!! I’m not a snapper!!!!

Jc

Currumpaw profile image
Currumpaw

Hey Jimhoy!

How many times have you been given fluoroquinolones as a prophylactic to prevent sepsis for biopsies?

The common drugs used by the uros are Cipro and Levaquin.

Do you know how dangerous these drugs are? Not only the Achilles tendon but any older injuries healed years before are susceptible. These drugs considered my old, long forgotten injuries the "low hanging fruit"! The fluoroquinolones can also cause aortic aneurysms. Nice huh? At our age I can hear it now. "That happens to them when they get old". How many men have died because of the fluoroquinolones and their death is attributed to their age and physical condition?

Currumpaw

Jimhoy profile image
Jimhoy in reply to Currumpaw

A whaaaaaat?!!!!

Currumpaw profile image
Currumpaw in reply to Jimhoy

Hey Jimhoy!

How many fluoroquinolones have you had? Read this.

The report from my first bone scan.

_____________________________________________________________________________________________

Narrative

Date/Exam: 08/16/2013 2:07PM BONE SCAN WHOLE BODY CPT: 78306

HISTORY: PROSTATE CA, EVAL METS

FULL RESULT: HISTORY: Prostate cancer. Evaluate for osseous metastatic

disease.

TECHNIQUE: Total body bone scan was performed following the intravenous

administration of 20.0 mCi of Tc-99m MDP.

COMPARISON: There is no prior study available for comparison.

FINDINGS:

There is moderate focal uptake in the region of the left L4-L5 facet

joint which is favored to be inflammatory, related to degenerative

change. There is moderate focal periarticular uptake in the left ankle

and right first MTP joint. The distribution of radiopharmaceutical is

otherwise physiologic.

___________________________________________________________________________________________

At this time I had taken six, 500 mg Cipro pills and likely had an intramuscular shot of Levaquin just prior to my first biopsy, a TRUS biopsy in July of 2013. No mention whatsoever of shoulder injury.

After that I had the Cipro and Levaquin combo again in September of 2013 for a 27 core Artemis biopsy and again in October of 2013 for an ablation. A week after the ablation an oral prescription for Levaquin.

The total--18, 500 mg. Cipro pills, 3 intramuscular shots of Levaquin I believe. I was "sleeping" when one would happened. A week's prescription of Levaquin orally.

I had an adverse reaction to the fluoros in August of 2014 as diagnosed by my chiropractor. She has decades of experience and has seen this happen to patients that have been given fluoros. I took quite a few ultrasound treatments from her staff to promote healing. I was told to tell my uro immediately. I called. My right shoulder had audibly shredded as I was incline benching my warm up weight, 145. I let the bar hit my chest. It was only 145. The shoulder was an old injury from 1981. A hip and my right triceps were tender earlier in the year. Old injuries again. In December of 2014 a 32 core Artemis biopsy as a follow up. The flouro combo AGAIN even when I questioned it. In February of 2015 as I got out of bed a ligament or tendon in my back that had ripped in 1988 once again ripped. Progress with the shoulder injury regressed. At the same time my left shoulder was falling apart but not as dramatically as my right shoulder had.

January of 2017 - I tell my uro I am afraid of the fluoros. He tells me he will only use Levaquin not the Cipro! I finally relent and have a 20 core Artemis biopsy that I don't want but he does. The large, intramuscular shot of Levaquin is injected into my butt. He had never prescribed the Cipro as in the past. Pathology results-- No cancer. One HgPin.

My uro calls me from an airport. Tells me to get tests. I really don't have a primary doc. I want the best around. I go to what is now Brown Urology. A name change from University Urology but they have always been associated with Brown University--teaching. I ask for my records to be forwarded. I am given a bone scan. This is the harm that fluoroquinolones do to a patient when they are continued to be used after the patient reports an adverse reaction. Many uros rely on the fluoros. The fluoros work but can damage your life and the quality of it--or an aortic aneurysm might just solve all your concerns!

Here is the report.

____________________________________________________________________________________________

DOS:2/28/2017 10:00 AM Exam:IMG401 NM BONE SCAN WHOLE BODY

Narrative

HISTORY: prostate cancer; -C61-Malignant neoplasm of prostate

TECHNIQUE: Total body bone scan was performed following the intravenous administration of 22.0 mCi of Tc-99m MDP.

COMPARISON: Bone scan dated August 16, 2013

FINDINGS:

Axial skeleton:

There is mild radiotracer uptake within the cervicothoracic junction bilateral acromioclavicular joints, likely related to degenerative change. There is mild heterogeneity of the thoracolumbar spine likely on the basis of degenerative change.

Appendicular skeleton:

Interval improvement in the mid and hindfoot radiotracer uptake. Otherwise a normal radiotracer distribution within the appendicular skeleton without evidence of osseous metastatic disease.

Component Results

_______________________________________________________________________________________________

Degenerative change is a "little" different than a little inflammation! I asked my oncologist when I could expect my shoulders and back to heal. He downloaded these reports on my file and told me to read them when I got home. I guess I can't expect much! I still try without success.

At the time of the February 28, 2017 bone scan I had lost both shoulders which I didn't think were that bad. I had improvement in both my shoulders and back. No more! That shot of Levaquin in January 2017 has been brutal. My back and both shoulders are in pain all the time.

I'm lucky that I was extremely athletic and fit. As I try to work now I wonder if the day will come when I will have an aortic aneurysm from all the fluoros that have been put into me. after I reported an adverse reaction.

I was going to start a one on one personal training business. I'll just say that I weighed about 220 lbs., had a 32' waist with abs, stood 5'6" tall, benched in the mid 300's, real iron and raw, could do 12 full range dips with a 45 lb. plate on a dip belt and 14 pull ups with a 25 lb. plate on the belt.

After the fluoros there was a time when I couldn't support even my body weight on the dip bars.

Alternatives to the fluoroquinolones are Rocephin and Cefdinir.

Currumpaw

Jimhoy profile image
Jimhoy in reply to Currumpaw

I will assume that this is the treatment / pills that I took before (?) / after (?) my biopsy? I don’t recall if I took them when they put the markers in!!

You got my attention because I remember questioning the warning I had to sign, but it was shrugged off as so rare don’t worry about it!!! That the infection was more dangerous than the prevention!! That was when I was very naive and trusted EVERYTHING the Dr’s said!!!

I am very interested in this topic but chasing the facts is painful for me!! I would ask that you simplify / summarize your data. I was once a very smart man but now this simply spinning my head!!!

Jc

Currumpaw profile image
Currumpaw in reply to Jimhoy

Hey Jimhoy!

The consent form!

Use the links to the articles I supplied. It will take you to other articles.

My best to you.

Currumpaw

in reply to Currumpaw

Every year after 5 years old until I was 20 I got strep throat at least twice a year and thus took antbiotics.... I blame a year of constant Uti’s treated with Cipro and all other heavy antis for UTI’s for random pains and neuropathy.. Bactrim was the only one in the end that worked for me . I was immune to the rest My stints were colonized 4 days after they were changed out . Tubes in kindneys always infected . I’m lucky to have escaped that hell . Flash back 10 years ago I got a staff infection in my knee joint and used levaquinn for two months solid . After I got dxed I Saw a class action suite against them for neuropathy. Without these powerful antibiotics most of us would be dead now . However they do take a toll on us .... I refuse levaquinn ...

Currumpaw profile image
Currumpaw in reply to

Hey Lulu700!

In 1986 when the fluoroquinolones were a new drug, a friend who was in his late 40's came down with a cold. His doctor prescribed one of the early fluoroquinolones. In a day or so the cold was insignificant to what the drug was doing to him. I came upon him as he was shaking and holding onto something for support! I went right to him and put my arm around his back as it seemed as if he might collapse. When I asked him what was wrong he said it was the medicine his doctor had given him! I told him not to take it again and get another type.

You mentioned neuropathy. My friend soon began losing feeling in his hands and his vision! He was no longer able to do his job. He was a physical guy in a physical job. He had been a good employee and the company moved him to a job he could do. He was well liked and the others helped him when necessary. He was unable to drive. His wife drove him to work.

At first it was thought he had MS--nope! Then this and that. Testing at a well known Boston hospital was inconclusive. I haven't seen him since 1990. I have no idea if he is still alive.

There are many fluoroquinolones. The FDA in recent years have required much stronger warnings about their use. Pharmaceutical company reps often give out "free samples" of a new drug to doctors saying that it is the latest and greatest. The fluoroquinolones certainly do work but their side effects can be life changing and have destroyed some people's lives, ability to earn a living and leaving them in constant pain and disabled to some extent.

As I mentioned yesterday, my chiropractor with decades of practice diagnosed my hip, triceps and shoulder literally shredding--it was audible!--as the result of all the fluoros I had been given, having been an athlete with old, healed injuries. She was right on.

A link:

___________________________________________________________________________________

Risk Factors for Fluoroquinolone Damage - Fluoroquinolone ...

fqresearch.org/risk-factors...

Jun 04, 2019

__________________________________________________________________________________________

An excerpt!

___________________________________________________________________________________________

Athletes tend to be at extra risk because of at many different factors:

Magnesium Deficiency

Oxidative stress

Inflammation

Connective tissue damage

Iron Deficiency is a risk factor for Fluoroquinolone damage

________________________________________________________________________________________________

Note that previous connective damage places one at a higher risk. Had my uro not ignored my chiropractor's diagnosis and used the fluoros twice more for biopsies after my first adverse reaction I might have healed. My chiropractor had said that my old injuries were low hanging fruit for fluoro damage. She has seen it before and it is common. Athletes use chiropractors to keep them together and functioning at a high level.

I found this article about warnings printed in the are you ready--2005 Physician's Desk Reference! It warns that the fluoroquinolones can result in neuropathy, musculoskeletal and cardiovascular systems--the now acknowledged aortic aneurysm resulting from the fluoroquinolones! 2005!!

The link and heading of the article:

_______________________________________________________________________________________________

New Warnings for Cipro, Levaquin, and other Quinolone ...

medicationsense.com/article...

You can find this warning regarding Cipro on page 823 of the 2005 Physicians’ Desk Reference (PDR). However, you will not find this warning in the write-ups of Levaquin, Floxin, or Tequin in the 2005 PDR (I did not check the other quinolones). You can find the warnings elsewhere.

_______________________________________________________________________________________________

Currumpaw

Jimhoy profile image
Jimhoy in reply to Currumpaw

I don’t know why but I recall something about ligaments?!!!

Am I close?!!!

Jc

in reply to Currumpaw

Amazing wealth of info Currumpaw.. I got very bad pains after using Cipro until it failed me. So powerful. Says right in the bottle that it causes joint damage .. everything is a trade off .. take care ..

Currumpaw profile image
Currumpaw in reply to

Hey Lulu700!

Thanks!

It isn't just joints.

FDA warns about increased risk of ruptures or tears in the ...

fda.gov/drugs/drug-safety-a......

I just read your bio. Do know about Dr. Klotz speaking at a urologist's conference on YouTube? He projects on the screen a history of a patient's PSA who was hormone resistant. The patient stabilized his PSA with --HOT SAUCE!--when all the ADT drugs failed. His PSA did not decrease but didn't increase either until his primary doc or whatever felt that being--on the sauce-- was interfering with his blood pressure meds. So he quit the sauce--went on the wagon! Dr. Klotz points to the chart. The patient's PSA began rising on the same trajectory it had been on prior to dosing himself 3X daily with hot sauce.

Go figure?

Currumpaw

in reply to Currumpaw

Got to get me some of that hot sauce ! Hahaha ...let’s face it , adt is a real SOB ... But so is an aggressive pc....

Jimhoy profile image
Jimhoy in reply to

Can you simplify as well?

Jc

Currumpaw profile image
Currumpaw in reply to Jimhoy

Hey Jimhoy!

Simplify? The info is there in the articles I supplied links to.

If you were living with the pain and reduced quality of life that I live with daily it would be understandable.

Currumpaw

Jimhoy profile image
Jimhoy in reply to Currumpaw

I‘ve read it time and time again and every time, more sinks in!!! I’ll fight through it!!

I’ll bet we have the same Urologists!!!!

Summit, Dudley or Collier St.? I fired one from each location!!!

I chased my original guy who left Brown and went to South County. He listens to my complaints of the many side effects. Sometimes, apathetically but he realizes I do see something wrong / different and offers advice where others would not!!! and I trust him!!!

He would have been the one that prescribed the Fluora..... you mentioned and offered the explanation of their side effects that I mentioned!

I’ll discuss this with my PcP but she has proven to be out of her league when it comes to virtually anything aPC! Its treatment and side effects!!! Sounds like we’re in the same state so (if you don’t mind) who is the chiropractor with the expertise and what are the tests to prove or deny joint / ligament damage from Fluora.....’s?

Jc

Currumpaw profile image
Currumpaw in reply to Jimhoy

Hey Jimhoy!

Nope!! Insist on Rocephin or Cefdinir in the future rather than Cipro and Levaquin or ANY fluoroquinolones.

I was with four other men. We are mostly in the same age range and I thought it important that I mention the dangers of fluoroquinolones since almost all of us had been biopsied because of high PSA results. I have had my bad experiences. Imagine when another man was diagnosed by his primary care Doc as having an adverse reaction to the flouros he had been given--joint, ligament, tendon damage. Another had an aortic aneurysm and fortunately survived! I sat there and was taken back at the percentage. Three out of five men! Wow huh?

Currumpaw

Jimhoy profile image
Jimhoy in reply to Currumpaw

From what I can gather, your warning is moot unless or until I am prescribed fluoroquinolones again and in that case I should request the alternates listed!!

Moot meaning that it’s not applicable to the pains that I am currently experiencing due to the fact that my biopsy was in April 2017 and targets placed In June 2017. This would be the only time I took fluoroquinolones and its been two years before these pains appeared!!

Am I close?!!!

Jc

Currumpaw profile image
Currumpaw in reply to Jimhoy

Hey Jimhoy!

The warning that did accompany fluoroquinolones stated that damage could happen as long as 6 months after using the drugs. Not so. My shoulder shredded 10 months after. These drugs literally eat connective tissue. How long does it take for tissue to be replaced? The articles clearly state that damage can be permanent.

Please note that "requesting" that a different drug be used than one that is proven to be the cause of aortic aneurysms is okay as long as you are okay with an aortic aneurysm. How about losing some of your vision? Neuropathy?

It is your choice as to whether or not you insist on a drug that doesn't have these side effects.

Look at reports on the net and the latest warnings the FDA has issued. Use your search bar.

Out of five men, talking about these drugs, three of us had adverse reactions to these drugs. Two of us diagnosed by doctors as having adverse reactions caused by these drugs. The other man was surprised. Just like I said. At our age if a guy has an aortic aneurysm it is said that "When they get older that can happen". I wonder how many deaths from aortic aneurysms have occurred due to fluoroquinolones. I believe you will find that the odds of having an aortic aneurysm doubles if you are given fluoroquinolones. Do you feel lucky?

The call is yours to make.

Currumpaw

Jimhoy profile image
Jimhoy in reply to Currumpaw

I just made an appointment to get these pains checked out. I know it’s opening Pandora’s box and will prompt x-rays, test, appointments...... but you can bet I’ll bring this up!!

Thanks

Jc

Currumpaw profile image
Currumpaw in reply to Jimhoy

Hey Jimhoy!

More bad news.

Possible Link Found Between X-rays And Prostate Cancer ...

sciencedaily.com/releases/2...

Those are the ex-rays that use the highest radiation to obtain images. Seems like those in medical research don't want to be at odds with those who practice.

Dental ex-rays are said to use the lowest amount of radiation.

Does radiation from dental X-rays cause thyroid cancer?

dailymedicaldiscoveries.com...

The prostate and thyroid tissues are both glands--one of the most sensitive tissues.

Never stop learning!

Good night!

Currumpaw

Jimhoy profile image
Jimhoy in reply to Currumpaw

Dammed if you do, dammed if you don’t

Good night!!

Jc

in reply to Currumpaw

I do understand Currumpaw.😂

Jim, my advice to you while it may seem antidotal, is to have a basic understanding of physiological changes in your body and then deal with it. Yes, we all have a bastard of a disease which it and it’s treatment affects all of us differently.

I started but journey sixteen years ago. This is what I have learned; and after reading your previous posts, I decided to comment.

Penile size and erections. In almost all cases they are related to the vascular system and blood flow. Capillaries are destroyed by traumatic injury whether through surgery or radiation. Restrictions elsewhere in the vascular system affects how much blood flows to your penis. Damaged capillaries do regenerate. My fix, 12 mg of Viagra every two days. Result: stuffable erections even when on Lupron/Eligard, Brachytherapy, and IMRT. No one really cares if you have a little willie......

Joint pain. Aside from wear an tear as we get older....... and, for example, hobbled athletes at age 45, there are reasons why the padding and fluid in joints dissipate. I never really blamed Lupron/Eligard. I did view changes from 24 nuclear bone scans take place in a seven year period. The major change happened during nine infusions of Taxotere and nine infusions of Adrimyacin over a six month period. Known fact: chemo does damage the padding between joints. For me especially the thumb joint of my dominate hand. There is no padding period.

Known fact: one can only test for Gout during a full blown attack. However, I note that if I eat brisket, hamburgers, etc, I am hobbled for three days. If I eat tuna fish and chicken, then I feel no pain in my feet.

As far as knees and ankles, I am paying for my past activities. A knee replacement cured my right knee (immediate pain relief), I am recommended for a left ankle replacement, but choose not it. Left knee gets an injection to replace synovial fluid. One day I’ll have to decide on replacement v. Pain.

I routinely take Tramadol, Tylenol 3, or Hydrocodone for pain depending on the level of pain during activity. I always wear knee pads when I must get on my knees. I have found that $300 shoes are better for my feet than $60 shoes.......

At 72, I am so glad that I aggressively treated metastatic prostate cancer, even if the treatment has caused later life problems. I know that if I dwell on the positives of life rather than the negatives, my life is richer and fuller than being six feet under.

Find the best medical minds available and then listen to them, read, ask questions and live life to the fullest. Understand your limitations. Make some changes in your lifestyle and adapt. When I get right down to it, I know that I can no longer jump out of helicopters, bowl, duck and goose hunt, wade fish, play fast pitch softball, or carry a 25 pound pack on my back over hill and over dell as I once did. Moderation is my watchword.

Best of luck,

GD

in reply to

Bravo👏🏼

Jimhoy profile image
Jimhoy in reply to

One of my favorite jokes;

If I knew the difference between antidote and anecdote, my friend Tommy Johnson would still be alive today!

I appreciate your input and with all due respect and with absolutely no malice intended, I offer some criticism.

I am about 14 years behind you in this journey, less in age than treatment. I’m virtually still at the starting line and you’ve been traversing the rough aPC roads for years. Kudos for your perseverance!!

I was going to take exception to a lot of your comments but deleted it and will just summarize all by asking “would have taken a knee 14 years ago”?

Don’t worry, I know the answer. Accepting and “just deal with it” and “understand your limitations.....change your lifestyle and adapt...” is not in my cards right now!!!

You’ve used you 16 years wisely and found answers to many of your questions. You write that you can justify many of your symptoms. I emulate you by attempting the same!!

Some of my posts might not offer a direct question but there is always a root question to them. I tend to use levity as a crutch!!! It’s kind of amazing how men, with similar concerns, see the obvious or sometimes the subliminal message and comment. Some return the levity but most with factual comments and experiences!! But however, they all mean something to the writer! As with yours, I appreciate and read them ALL and (with whats left of my brain (yes, another ADT side effect) I’ll either have justification or I’ll make a conscious decision to pursue the issue with my Dr’s (the best medical minds (that can’t hold a candle to the experts here on HU)).

Thank you again and I hope I didn’t come across as an A$$, not my intent!! Taking a knee is simply not the antidote for my poison at this juncture!

Keep up the fight.

Jc

j-o-h-n profile image
j-o-h-n

So Jimhoy... tell us, how's your day going?...Don't hold back....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/07/2019 12:31 PM EST

Jimhoy profile image
Jimhoy in reply to j-o-h-n

How much time you got?!!!

I was born a poor white boy. It was a snowy night and ..................

j-o-h-n profile image
j-o-h-n in reply to Jimhoy

your story continued: ........ my Mom and Dad thought it very strange since they were living in the Sahara Desert.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/07/2019 7:54 PM EST

Jimhoy profile image
Jimhoy in reply to j-o-h-n

I can honestly say, “ I got nothing” after that!

Just remember, if you smoke too much, you don’t get higher, you just have less pot!!!

Jc

Jimhoy profile image
Jimhoy in reply to j-o-h-n

At least all my back problems are behind me now!!! He he!!

tom67inMA profile image
tom67inMA in reply to Jimhoy

Good one!

Garbonzeaux profile image
Garbonzeaux

I wouldn't read too much into the fact that all 3 pains are on the same side. By random chance, this would be expected to happen one time out of four, the same probability as having 3 kids all the same sex. Happens all the time. Hope your pains subside soon.

Jimhoy profile image
Jimhoy in reply to Garbonzeaux

It’s funny, my 3 kids are a pain in one spot!!!

Kidding!!

Thanks

Jc

Garbonzeaux profile image
Garbonzeaux in reply to Jimhoy

Hey, watch it Jim. 30 years from now, when you're old and feeble, you'll need those kids to take care of you!

Jimhoy profile image
Jimhoy in reply to Garbonzeaux

30 years?!!!!! Found my bathroom light bulb unscrewed and the plunger in the toilet!!! Not funny kids!!!! I send the wife in first now!!!

monte1111 profile image
monte1111

Didn't learn much from this post, but laughed all the way through it! Enjoy.

j-o-h-n profile image
j-o-h-n

"ALL on LEFT?!!! I find that strange!!! No sign of any pains on the right side!!!"

I guess you suffering from rightprivilege....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 11/07/2019 6:36 PM EST

Jimhoy profile image
Jimhoy in reply to j-o-h-n

You hear a lot about that!!! I guess I have a special purpose!!!

Wooo hooo. The new phone book is here!!!

Jimhoy profile image
Jimhoy

In all honesty, I was concerned about the development of met in the bones. Never thought about bone density!!! I’ve been taking vit D religiously and the blood levels were good at last test 12mo’s ago.

My cancer was limited to the prostrate and there were no signs of mets in adjacent glands nor bones!!

I hear (read) guys talking about “bone pain” and like I said elsewhere, you can’t “not” think about it!!!

Bloodwork today so we’ll see next week on 13th and 14th.

Jc

in reply to Jimhoy

TG I don’t have bone mets either. But treatments Adt ,RT and no t have started osteopenia.. I’ve taken vit-d also. I started only four months ago strontium, Boron, calcium, & magnesium ... my blood work is great , still my muscles are gone and my bones are going . Think about bone health..🌎

Jimhoy profile image
Jimhoy in reply to

Got bloodwork back this am and vit D is 37 and calcium is 9.6.... both good!!! PSA 0.1 but “T” is still @ 100.....so I’d say ADT is still somewhat in play!!! Anyway, I’ll sleep a little easier tonight with (in my mind(right!!!)) less indication of bone met issues!!! The Dr’s will go over these and the rest of the battery next week. We’ll see!!!

I assume that s,b,c & m are supplements? I might look into that as well!!!

Thanks

Jc

in reply to Jimhoy

Yes bone nutrients are called for with long term Adt or castration . Good luck at the docs.😎

monte1111 profile image
monte1111

This is the post that just keeps on giving. What does anyone do with a phone book? Plunger in the toilet! That's on a par with Kaliber's bananas and mayonnaise. Enjoy? I don't think so.

Break60 profile image
Break60

That’s one reason I stopped Lupron and switched to estradiol patches. No side effects except gynecomastia.

Jimhoy profile image
Jimhoy in reply to Break60

Estradiol patches are in my plan now if ADT is in order!!! Already got pretty intense gynecomastia from Eligard so no matter!!!

I can live with most of the side effects..... I just want my brain back!!!!

Jc

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