A DOZEN RESOLUTIONS FOR 2020

1. Work hard in Physical Therapy and Pain Management to be able to stand or sit for over 1 hour w/o pain.

2. Fight depression even though travel, many family gatherings, outings with friends and many other joys of retirement are now out of the question. 

3. Let friends and family know why there has been this drastic change in my ability to participate in these events, so they know I'm not just avoiding them! 

4. Keep urging Amgen to give needed warnings about Prolia. I understand they recently added the word "delay" -- October 21, 2019 is what I was told -- but I can only find that in their "patient information," and I do not see it in any of their professional  "product labeling."   And it certainly is not highlighted anywhere! 

5. Try to ignore the pain of a toothache (from a broken root) that cannot be treated for many months (if then) because of Prolia.

6. Share with my health care providers what happened to me so they can see first hand how Prolia can ruin a life. 

7. Demand that my prescribers of Prolia 1. INSTRUCT SUPPORT STAFF of the importance of patients receiving Prolia ON TIME and 2. Set up office systems to assure this. 

8. Extend friendship to the many people on medical social media writing about their own lives ruined by Prolia.

9. Appreciate the health care professionals who are helping me during a slow and painful rehabilitative process when the Prolia prescribers essentially abandoned me, and Prolia’s “information” line, (800) 772-6436, had nothing practical to offer.  

10. Channel that angry energy to stop Prolia from claiming still more victims!

11. Keep on trying to end this nightmare, by finding a SAFE way off Prolia.  The only advice Amgen has offered me so far is to "get on another drug" (without specifying which one!)   This is a bit like asking someone to jump into a safety net when the last safety net had big holes in it!   

12. Try not to throw a brick through the TV when they show Amgen's ads for Prolia!  And now Amgen is advertising newer osteoporosis drugs. So I ask you: Would you buy a used car from this dealer? 

My Resolutions for New Year 2020

1. Work hard in Physical Therapy and Pain Management to be able to sit or stand > 1 hour w/o pain.

2. Fight depression as travel, family gatherings and other joys of retirement are out of the question. 

3. Warn friends and family to avoid Prolia like plague.

4. Keep urging Amgen to give needed warnings about Prolia. (They recently added the word "DELAY" to some patient info but I still don’t see it in their official product labeling).

5. Try to ignore the pain of a toothache (from a broken root) that cannot be treated for many months (if then)  because of Prolia.

6. Share with my health care providers what happened to me so they can see first hand how Prolia can ruin a life! 

7. Demand that prescribers INSTRUCT SUPPORT STAFF to warn patients unfortunately on Prolia to get their shots ON TIME. 

8. Offer friendship to the many people on medical social media whose lives have also been ruined by Prolia.

9. Appreciate those who helped when the Prolia prescribers essentially abandoned me and Prolia’s “information” line, 

(800) 772-6436, offered nothing but “ask your doctor.”

10. Channel that angry energy to stop Prolia from claiming more victims!

AMGEN FINALLY ADDS THE WORD "DELAY" TO THEIR PROLIA "MEDICATION GUIDE"

I call Amgen every week or two: 

1. To tell them how I'm doing after this Prolia disaster; 

2. To ask for any advice they might offer for restoring a workable, pain free body;

3. To urge these friendly reps never to go near that drug or let any of their dear ones go near it! (They all sound very nice).

4. To suggest they add the word "DELAY" to their product information instead of just words like "discontinuation" or "stopping." 

As to (1), (2) and (3) I usually get nothing useful. 

But as to (4) there was a recent change.  

The Amgen rep I spoke with today (handle "Aaron") told me that the word "delay" had been added to their information on October 2, 2019.   I asked him to send me this and he did so today, 12/30/19, via e-mail.  

While the word "delay" still does not appear in the main product labeling, it did appear appear in an attached document called "Medication Guide,"  where the text in the Warning and Precautions section includes the following: (bold italics mine) 

 Increased risk of broken bones, including broken bones in the spine, after stopping, skipping or delaying Prolia.

Talk with your doctor before starting Prolia treatment. 

After your treatment with Prolia is stopped, or if you skip or delay taking a dose, your risk for breaking bones, including bones in your spine, is increased. 

Your risk for having more than 1 broken bone in your spine is increased if you have already had a broken bone in your spine. 

Do not stop, skip or delay taking Prolia without first talking with your doctor. If your Prolia treatment is stopped, talk to your doctor about other medicine that you can take.

This included information I did not know - such as that having broken some vertebrae I am now at INCREASED risk for additional such fractures. 

I am also learning learning that length of time I've been on Prolia could also subject me to more problems, but there seems no way to escape the clutches of this medical monstrosity.  

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A CRUEL PROLIA-RELATED CHOICE: MUST I CHOOSE BETWEEN A TOOTHACHE OR A BACKACHE?

I had a toothache - bad enough to ask my dentist to have a look.

After taking X-rays he referred me to an endodontist who took pictures with highly specialized equipment I had never seen before.   

Forty minutes and $385 later I emerged with a CD requiring an oral surgeon's special equipment to read, and got the news the the root of my upper left second molar (known in the trade as #15) was fractured. 

The ideal solution: extracting the tooth and replacing it with an implant. 

I've had this done before by the same oral surgeon since 2012 when I first went on Prolia and they have all worked quite well.

So why is this posted in JoansBackboneDisaster?"

BECAUSE (and I'm shouting right now) NOW SINCE I'M ON PROLIA THE ORAL SURGEON DOES NOT WANT TO DO THIS EXTRACTION OR IMPLANT!  

I'm not sure why this cannot be done now, but I asked him to discuss this with the osteoporosis endocrinologist (fortunately both are at Northwestern) to discuss this. 

Could the likelihood of jaw fracture be worse than it seemed to be a few years ago?

Right now my tooth is hurting and I can see no good end in sight for this.   Will I have to choose between a painful broken tooth or a painful broken back? 

So there you have it: 

One more HIT from the 

AMGEN HIT PARADE!

UPDATE: January 14, 2020.  I just discussed this with my bone endocrinologist at Northwestern.   She confirms that she knows of no SAFE way off of Prolia.  We're figuring out how to have this tooth extracted sometime in March or April right before my next Prolia shot when it is least likely to cause damage.   Until then I live with a toothache. Just one more example of daily life as I serve my life sentence in in "Prolia Penitentiary!"

http://www.joansbackbonedisaster.com/2019/04/serving-life-sentence-in-prolia.html 

UPDATE: March 10, 2020.   Oral surgeon removed the painful fractured tooth today.  Many months of toothache pain finally relieved.    I get next Prolia shot in a few weeks.  Will I be able to have an implant to replace the missing tooth?  Watch this space!  (Literally!)

UPDATE: March 14, 2020.  Site around extracted tooth reasonably calm.  But my whole bite is off. Other teeth banging against each other.  It could be many weeks before this can be addressed, and I have no idea whether I will be able to have an implanted tooth in the extraction site because of being on Prolia.   

Itchy skin continues and not much to do about that. 

I'm reading many more online accounts now about Prolia-related disasters.  I'll compile a list of these shortly.  So watch this space (not the space where my tooth should have been!)

IT'S TIME TO PLAY "THE PRICE IS RIGHT" WITH PROLIA!

Remember that quiz show "The Price is Right?"  where consumers guessed retail prices for prizes?  

Well, Amgen plays that game too with their BONEBUSTER -- uh-oh did I say that? --  I meant BLOCKBUSTER drug Prolia (r)  

Because of my vertebral fractures associated with the medical mismanagement of Prolia (r) doctors suggested I might consider getting my shots a bit sooner than the 6 months (plus the 5 days required for Medicare reimbursement).  

So I started checking prices.  The variance was HUGE!  (And I am just talking about cost of the drug itself, not the cost of having it administered by a doctor or nurse).   

I went to the Amgen website to see what their wholesale price might be, and to get an idea of how much markup there was, but could find nothing.  

So I called the Amgen "hotline" (800-772-6436) which transferred me to a line called "Amgen Assist" where I spoke with "Judy."  

Judy basically gave me the same info: I would have to run around and find the wholesalers used by each institution and find out what their prices were.  But she would not give me any information about the price from Amgen.   

Since these calls are recorded, I asked her to let me send a message for the people "upstairs" at Amgen about how confusing and unfair this policy is for patients.

Judy's response was "I'm terminating this call."   
So I gave my message to a dead phone and then proceeded to write, once again, to Mr. Robert Bradway, CEO of Amgen Corporation with these questions.  

His business address is:

Mr. Robert A. Bradway
Amgen Corporation
1 Amgen Center Drive
Thousand Oaks, CA 91320

If you are having trouble with this or any Amgen products he might want to hear from you too!

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PROLIA AND COGNITION

Now that my capacity for physical activity has been pretty well ruined by Prolia, I must rely on my cognitive ability to a great extent.  

I find myself much more forgetful now and I need to write down EVERYTHING I used to keep in my head or I will miss appointments, forget what I have done earlier in the day or week, or have a hard time concentrating on what I read.

Of course this can be related to unrelenting pain whenever I am sitting or standing, which means that my physically body is less active, perhaps affecting my mental acuity.  

But hearing reports of reduced mental capacity associated with Prolia, as well as reports of people who found their "brain fog" had lifted when they were no longer on the drug, I did a quick online search.

Here is one review of this topic that may be of interest.  
https://www.ehealthme.com/ds/prolia/cognitive-disorder/

The URL above speaks for itself.  I urge readers of this blog to have a  look.

And another in the journal Frontiers in Behavioral Neuroscience on how chronic pain (which I am experiencing because of my Prolia disaster) may affect cognitive function:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6085997/  

I'm still managing, but I'm definitely slower at tasks requiring memory and cognition.

Is this a product of age?   After all, I'm 83 years old now.

But this has not been slow gradual change -- and it has been increasingly noticeable in the last year when I have been SO dependent upon my cognitive abilities, having lost much of my physical ability following my Prolia-related fractures.

This is especially frightening for me because it is my ability to negotiate my needs via phone or internet that have allowed me to live at home and do the research needed as I try to answer my questions and gain physical strength.

A HELPFUL PAIN CLINIC M.D.

I’ve gotten some practical guidance from Dr. Maunak Rana at the University of Chicago Pain Clinic.   I've mentioned him before in this blog, and he's given me good counsel.  I see him at the U of C branch at Roosevelt and Canal.  It's hard for me to get there and back but worth it.

Dr. Rana is the only doc who, to my knowledge, carefully reviewed my MRI, and also the only one who took some more X-rays, and poked me up and down my spine and ribs, one by one, etc. to see if I would actually be a good candidate for corrective surgery.  

Although he does at least three kinds of "vertebral augmentation" surgery, he determined that these would not help me because my pain was not located directly in the spine.  This was actually a huge relief because I don't like many of the things I have been reading about these surgeries.

He is familiar with the things I'm doing with my physical therapists and alternative practitioners to build my core and help with inflammation and pain generally, especially what I experience as painful internal bruising (for lack of a better description) etc.

I first saw him as soon as I was able to get to his clinic, and now, about a year later, about every 2 months, having been for all practical purposes pretty much abandoned by Amgen -- the manufacturer of Prolia -- as well as by the other U. of C. docs who haven't much to offer for the damage I've sustained.

Like the other docs, he offers no prognosis, nor can anyone else it seems.  I only hope that I can get a little better a bit at a time so that I can live out my life with less pain and more ability to do the simple things I enjoy that involve sitting, standing or walking.

A PHARMACEUTICAL TANTALUS

Tantalus (Ancient Greek: Τάνταλος Tántalos) was a Greek mythological figure, most famous for his eternal punishment in Tartarus. 

As punishment for defying the gods at Olympus, Tantalus was made to stand in a pool of water beneath a fruit tree with low branches, with the fruit ever eluding his grasp, and the water always receding before he could take a drink.

The word "tantalize" comes from this horrific story!

Here is a picture of an item used to hold different kinds of wine and spirits.  It is called a "tantalus" after the above mythological character.  The decanters are placed rather loosely in this special tray, and it looks as if you could easily remove them.   But when you try, it is impossible unless you have a key or know the secret method required.  Otherwise, no matter how much you would like to have a sip from one of these bottles, you are out of luck. And if you try too hard to remove the bottles without knowing how, they may break!

Prolia is something like this.  Once you are on it you may be more or less "hooked."  If your shot is delayed for any reason your bones may break as mine did.  To get off of it, you may have to go to even more dangerous methods such as have been proposed to me.  And even if you do get off, it may leave behind still other problems, as have been reported in links on these pages.  

There are countless times over the past year when I have felt like Tantalus in the picture above, able to get around a little but winding up in breathtaking pain, still desperate to get off Prolia but afraid to incur the fractures such as I had during that medical disaster a year ago when my Prolia shot was delayed because of a medical center personnel change.

The drug Prolia that was presented to me in 2012 as having so many advantages turned out to be a cruel pharmacological joke, leaving me feeling much like poor Tantalus must have felt with relief always just beyond his grasp.   

I should have known better than to ever have agreed to this drug so soon after FDA approval. This was a dreadful mistake on my part.  It may be the physician's job to prescribe, but it may also be the patient's job to resist.  I fell down on that job and now I am paying for it.

Like Tantalus above, I still do not know if I will reach my goal of a reasonably pain free life.  But I continue to work hard in physical therapy and other modalities requiring much time, effort and considerable expense.  

And I will continue to share my experience with Prolia and its painful and disabling aftermath in hopes that it might spare others what I am dealing with now!