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jwb357
New Member


Date Joined Jun 2017
Total Posts : 1
   Posted 6/22/2017 11:07 AM (GMT -7)   
Looks like a great website. I thought I would share my story here as it has been an interesting decade. I'll try not to be too verbose and keep it as short as possible.

My most noticeable and serious joint pain began in 2001. I was clueless and 49-50 years old. I have always been somewhat athletic but the fireplug style of athlete as opposed to a tall and lanky person. I always seemed to have some chronic knee issues but nothing ever debilitating. Suddenly I started to have the type of pain that I couldn't get out of bed without rolling over and sliding to the edge and having a battle to sit up. I couldn't do something as simple as put on a coat as my weakness (more so than pain) prevented me from doing it. To wash my hair I had to push my elbow up with my opposite hand.
I was referred to an older Rheumy who happened to have treated my Grandmother's on both sides of my family for RA. Of course he ran all kinds of blood tests, x-rays and MRI's but the key thing he found was a tremendously high C-Reactive Protein level in my blood. The Rheumatoid factor was negative and Sed Rate was normal. His diagnosis was something he named Polymyalgia. I had never heard of this illness and at first confused it with Fibromyalgia. (This will come back later.) He explained it was extremely rare for a 50 year old to be diagnosed with this but what the heck, I've had other auto immune issues so assumed here's another battle. There was no treatment per se other than a HIGH dose of prednisone. He felt his diagnosis was confirmed since 72 hours later I was feeling miraculously better. I remained on the same does for a year and slowly weaned off of the prednisone during year 2. It was not pleasant during year 2 as I developed the moon face and gained 30 pounds but life was pretty much pain free. I has a few minor "flares" during my 50's but always had them under control using standard NSAIDS. Sadly as I approached 60, my fingers started to deform with osteoarthritis which was unrelated but super painful which I have learned to live with. But that is a separate issue.

Around 2 years ago, I started to develop a similar but unfamiliar overall body pain which impacted sleep and my golf game was suffering. It was an overall ache that impacted my knees, shoulders and arms and seemed to sap strength from them. I continued using machines in the gym but it was agonizing.

I of course first called my Rheumatologist back and he tested me for every type of joint disease there was. Lupus, Lyme, RA, etc. Because the tests all came back negative he told me I had fibromyalgia this time and that I needed to begin Cymbalta. So begins the next chapter. I understand what fibromyalgia is and it just didn't fit the bill for me. I am one of the happiest and chipper people I know and always make lemonade out of lemons. I always find and focus on positives and have never been diagnosed with depression or anxiety. Quite the opposite in fact. My successful career (started on bottom and worked my way up) has been that way in part due to my willingness to accept change and focus on the good things even when common sense suggested the opposite. But I took his diagnosis in stride and started on the Cymbalta. I started on 30Mg a day with a jump to 60mg on the 3rd week. I became a different human being. I became non-responsive in my conversations and felt like I was in limbo land all of the time. I then started to experience very scary out of body sensations where I felt like I was outside my body and lacked control of my senses. It would end with a tingling sensation across my body. All the time the pain in my body continued getting worse and worse. I was afraid to drive as those sensations I described were occurring randomly and one actually hit me while driving on I-95. I barely made it to the side of the road. This went on from June until November 2015.
I was so fed up dealing with the chronic pain and feeling of being drugged that I reached out to a new younger (my primary Rheumy was a nice guy but in his 70's) Rheumy (45 years) who was aggressive and known in my area as an expert. After a 30 minutes interview he said "we need to get you off the Cymbalta ASAP as you don't have fibromyalgia". It took me 2-3 weeks to get off of it and as I withdrew, the flashing episodes increased again. We never figured out why I had that side effect but the bland feeling I had while on it was bad enough by itself. He started me on a lighter dose of prednisone and started me on 25 mg of methotrexate right away. By Christmas my pain was 90% gone and I was off the prednisone completely. All was great for a year. I eventually felt like I was 35 again despite being 63. Golf came back except for my battle with osteo in my fingers. No more pain in the AM and I was back. I also was prescribed Folic Acid while taking methotrexate. I had none of the side effects I have read here.
I had a sit down with my new Rheumy who explained that RA is still at times a mysterious broad disease and there is a type (which he said was mine) he referred to as "non presenting" RA which which does not always show itself in blood tests. He explained that in those cases verification of the disease is borne out by effectiveness of the treatment. Since I was doing so well it was determined this was my treatment going forward.
End Chapter 2....

All was well until November 2016. At that point my liver enzymes were increasing at an alarming rate. My ALT and AST were now both well over 150 and he felt it was time to stop methotrexate as my liver could not tolerate it. I was at first devastated. He told me he felt Enbrel was a good substitute choice for me to use. At first I was concerned when I saw the price of the drug and knew I could not afford it. But then I found by calling them since I am still working and on company insurance they would provide a card for me which has resulted TO DATE in ZERO $$ copay for me. WOW! Methotrexate was also zero by the way by default. Cigna is my insurer. I have now been injecting (using the SureClick injector) once a week since December of 2016 and have NEVER felt better. NO PAIN, I am walking 3-4 miles a day at lunchtime and 3 days a week doing a complete machine workout in the gym. Since January I have lost 18 pounds and that is helping even more.
Finally, I kept taking Folic Acid for a month after stopping methotrexate and also started the supplement known as milk thistle and my liver numbers are now well within the normal range again.

So that is where I am at with my 65th birthday just 3 days away!!! My only concern is what happens when I retire from my current employment. My plan is June 2019. SO I have two years to plan but I found out that once on Medicare Part B or B/C, I can no longer get the support of the company who makes Enbrel. The annual cost of Enbrel if paid out of pocket is $12,000 a year which I cannot afford. So I'm not sure what will happen at that point or should I be let go. But I guess I will cross that bridge then. I am glad I found this forum as a similar forum helped me with my sleep apnea. I could not get used to the CPAP machine and battled using it for years. A forum group gave me incredible support and tons of ideas which eventually got me to successfully adopt it's full use. I could not have done it without the Forum. I now look forward to putting on the mask and going to sleep. I never thought that day would have occurred.

So that is my story. Thought I would share as there are many personal victories in there and the one thing I discovered in this history is being your own patient advocate is critical to success these days. Not that doctors which you anything bad but the medical community just overall seems to have lost compassion and understanding of their patients. You need to insist on investigation and options.

I learned the hard way when my original Rheumy got furious with me for seeking a second opinion. He still insists I had (or have) fibromyalgia which if I do then I am thankful because I feel wonderful!!! He basically blew me off.

I hope others have the chance to eventually find the physical peace I have discovered. Not I can focus on somehow beating this horrible osteo in my fingers. I can no longer make a fist and on certain days the pain is tough but I continue to do hand exercises in hopes retaining the use I do have. I am lucky in that onlythe middle finger, ring finger and pinky are involved. I don't have it in my thumbs yet. The space between my finger joints no longer has any dark area as the cartilage is mostly gone.

I'll find a way to golf no matter what however. If people who lose limbs can do it then I can do it with crippled fingers.

Thanks for reading.

Reezi
New Member


Date Joined Jan 2017
Total Posts : 9
   Posted 6/22/2017 11:25 AM (GMT -7)   
Hey newbie

Welcome to the forum this site has been a god send. you will not be disappointed you came here. There is a vast amount of information here that could be useful for someone with your condition. I have learnt so much from this site. Again welcome

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15294
   Posted 6/23/2017 7:54 AM (GMT -7)   
Hello jwb & welcome to Healing Well. Wow, what a journey you have been on to get a proper diagnosis & treatment that was very much needed. I am a firm believer in listening to my gut feeling in just about everything. I totally agree with you about having younger drs on board. The younger ones are more uptodate on treatments & do not have problems incorporating this in their treatment programs. The older ones get set in their ways & are not interested in learning newer things. My pulmonary dr is young, his dad is a cardiologist & he even told me one day my dad is set in his way with older treatments & has no desire to learn the newer things!!

Here is a couple of things to consider when you are approaching the Medicare days. I have regular Medicare with a supplemental plan. I am not interested in one of their HMO/Managed Care plans they are too restrictive for my taste. Now, not all states offer obtaining a supplemental policy to Medicare but this will be easy for you to find out. If your state does you can ask about obtaining script coverage & they can tell whether your medication will be covered. I went through AARP for my supplemental policy, however you can go through an insurance broker in your area. Allow yourself plenty of time to check out all of your options. And yes, the discount cards do not apply to us on Medicare which I feel is a rip off for us seniors. Most seniors needs all of the assistance they can get with anything medical related.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums
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