Monthly Archives: June 2014

RA and Shoulder Pain

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Does your shoulder hurt all the time? If you have RA or other autoimmune diseases don’t think it’s just wear and tear of old age. Rheumatoid Arthritis attacks the cartilage in the shoulder joint and can also attack the ends of the tendons which are all lined with synovial type tissue which RA likes to gnaw on like microscopic versions of the old arcade Pac Man.

My left shoulder was the first of the larger joints that began hurting consistently. My right hand is primary so it was surprising that my left shoulder would begin hurting overnight without any type of injury. The pain has been consistent in this shoulder for about two years now. The right shoulder is involved also, but compared to the pain in the left it doesn’t rank on my radar most days. (By the way it’s a myth that RA is symmetrical. Mine loves the left side of my body.)

The rheumatologist that properly diagnosed me use to give me steroid shots in the top of the shoulder or in the scapula (shoulder blades) depending on the area that hurt worse, but the shots would only last a month (they are supposed to last for three months) and the pain might have diminished but never went away. The steroid shots wrecked my blood glucose levels as I am a diabetic on insulin. It finally got to the point my endocrinologist told me that if I was going to continue to get steroid injections, to call him so he could put me in the hospital overnight on an insulin drip. “No. Thank you very much,” was my response and I stopped the steroid injections. Here we are now, two years later, and I’ve got what they call a “frozen shoulder”. The tendonitis and deterioration in my shoulder has become severe enough to impact my range of motion. At 47 years of age, I cannot lift my lift hand over the level of my head and I cannot reach back further than my hip.

A MRI of my shoulder showed tendonitis with degenerative changes yet my new Rheumatologist insists it must have been some injury. He wanted to inject steroids, but my blood sugar levels are not stable with the amount of inflammation I carry in my body and I can’t afford a hospital stay on IV insulin to sort it all out.  He wants me to see an Orthopedic Surgeon about my shoulder and that is when my Primary Care Physician drew the line and said I was not undergoing a shoulder scope to satisfy his curiosity when this is typical of RA symptoms associated with the shoulder. I’m not sure what my rheumatologist will think of this kink in the care plan because he wanted the ortho to go in and take a sample of the cartilage in my shoulder for biopsy to prove or disprove my RA status and repair any damage. Sigh. I don’t know what I’m going to do. The merry-go-round of pain, inflammation, and resulting high blood sugars has caused permanent damage to my heart. I find myself wanting to lock all my doctors in a room so bad to make them talk to each other because while they quiz me about what this one said vs. what that one said, nothing is getting done.

I found little information about frozen shoulder and how it relates to RA on the web, but what I did find, I’ve shared below. I thought was very informative and actually does link RA as a cause to the condition. Don’t let your doctor tell you that it’s always caused by an injury of some sort. As we have all experienced, RA likes to beat you up in your sleep and a joint that was fine when you went to bed might not be functional when you wake up. Learn a lesson from my experience and don’t let them start physical therapy on your shoulder unless that therapist knows as much about RA as you do or they are most likely going to push that joint too far which will cause inflammation and more damage.

From the link: http://www.frozenshoulder.com/arthritis,  in regard to symptoms: “If you have a stiff and painful shoulder, and it hurts to move it, you may have shoulder arthritis in one form or another. Sufferers complain that it becomes more painful the more they move, and also that the pain wakes them up at night. Some people report feeling a “catching” and “grinding” or “clicking” sensation when they move. Some also say that the pain intensifies following a change in the weather.”

In addition, the website lists causes of frozen shoulder: “It used to be thought of as inevitable “rustiness” of getting older, simply “wear and tear” on the joints. Now experts believe it’s a lot more complicated than that, so much so that the absolute cause remains something of a mystery. We do know that there are certain factors that play a part in developing shoulder arthritis. These are: previous shoulder surgery, a car accident or similar trauma that dislocated the shoulder, inflammation of the shoulder (primarily due to rheumatoid arthritis), overuse of the shoulder, being over 50 – most sufferers of osteoarthritis are in the over-50 group, the auto-immune disease rheumatoid arthritis – this causes the body to attack and destroy its own cartilage. It wreaks havoc in different parts of the body, and can occur in the shoulder joint too.”

Currently, my PCP who is a Internal Medicine doctor has me doing pendulum exercises at home for the shoulder to help ease the problems with the tendonitis. More than likely, the course of action is going to have to include some disease modifying drugs to work with the methotrexate I’m taking. My rheumatologist has mailed me literature to review for Actemra, Symponi, and Remicade before my July appointment. Should the shoulder exercise not improve the condition, I may be adding Othropedics to my growing list of specialists.

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Methotrexate – My Full Circle Journey

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It has been 5 years since my first RA symptoms showed up. My first Rheumatologist (who I only saw twice because he scared me) wanted to start me on Methotrexate injections right away. He freaked me out! Being a nurse who gave chemotherapy grade Methotrexate (MTX) infusions for leukemia patients I wasn’t going to start injecting it myself without a second opinion.

The second opinion doctor rejected MTX as a therapy for me because my liver enzyme lab reading and subsequent ultrasound of my liver showed I  was not a candidate for MTX. I had elevated liver enzymes and a fatty liver brought on by years of poor diabetic control. My new rheumatologist felt the toxic risks to my liver were not worth the benefit of therapy compared to other treatments we could try. Fast-forward to the present and I’m now on MTX injections. In many ways I feel like I’m starting over at square one. 🙂

Last fall, my primary care physician (PCP) was so frustrated with the type of rheumatology care I had received, he put me on MTX himself asking, “what do you have to lose?” My liver enzymes had been within normal limits for over a year. I’m diabetic so those lab values are drawn every 3 months religiously to make sure that the diabetes and the treatment for diabetes isn’t causing liver failure. I completely trust my PCP. He is a MD Internal Medicine doctor with vast knowledge of my disease processes. He was right. What did I have to lose? I’d plowed through a slew of disease modifying drugs and biological agents with poor results over the last five years. I submitted to treatment and while we searched for a new rheumatologist, He started me on three 2.5mg tabs once a week on Saturdays.

The nerves I’d had in starting MTX five years ago were gone. I figured I had faced more significant fears by injecting biological agents that can cause lymphoma. (Sometimes it’s not good to be a nurse when you get sick yourself. You know too much!) I started my MTX with a good attitude. I always took my weekly dose with a meal to try to avoid any gastrointestinal (GI) upset. It did not make me sick to my stomach in the beginning, but a few hours after I took my oral dose I would hit an invisible brick wall with my energy level which resulted in a feeling that I HAD TO lay down. If you have ever had a Benadryl for allergies, you might recognize that feeling that you just have to lay your head down. It was fairly common for me to sleep 4-6 hours on MTX day and through the night. This fatigue superseded the fatigue that comes with autoimmune disorders to the nth degree. I recognized this was a type of chemo fatigue I’d seen in my oncology nursing career. Some patients refer to it as “the MTX hangover” Almost immediately after starting MTX, my left hand (my worse RA area) started to improve significantly. For the first time in years I could actually see the bony structures of my knuckles and the trigger finger in the fifth digit (pinky) subsided. Because I wear a insulin pump for my diabetes I’m not allowed to use steroid therapy with MTX because steroids can greatly increase blood sugar in non-diabetics.  MTX was the only treatment I was taking for RA other than prescribed NSAIDs. I had come full circle, back to where I started treatment five years ago. MTX alone was not putting a major dent in my symptoms, but it was helping with the number of hours I had morning stiffness and the degree of stiffness present in the smaller joints.

My doctors gradually boosted my dose of MTX from three tablets to four then six over a 6 month period, checking lab work closely with every increase trying to get to a therapeutic dose range for RA without raising my liver enzymes. Once I hit six tabs I began having nausea that came on so suddenly about 45-60min after a dose that I could not control it. After a fit of violent vomiting, I would then have to lay down for my MTX hangover nap. I started having harsh flares because I wasn’t getting the full benefit of the MTX due to the vomiting. Symptoms came roaring back. Unfortunately this was happening in the recovery period of having two stents put in my heart with complications brought on by RA. My new rheumatologist discontinued the oral MTX and started me on injections that are equivalent to the oral dose I was taking. There has been no pain with the injections and I’ve not experienced any nausea or vomiting. In addition, the severe fatigue I had on the tablets has lessened significantly.

The MTX injection prescribed is preservative free and comes in a multi-dose vial.  In researching this, I discovered that preservative free vials are less likely to cause an allergic reaction. The vial is stored at room temperature. The medication is injected with a very small needle in the fatty tissue. I can’t even feel it go in which is a pleasant change from some of the biologic agent injections I’ve had before that burned like a bee sting when auto-injected with a pen. I’m very careful to use proper aseptic technique in using my vial, drawing the medication up and injecting it. Since I’m a retired nurse and a diabetic use to self injecting, I did not have to go through the in-office nurse-patient training on giving an injection. Don’t let that worry you if you have been prescribed injections of MTX or considering it. It’s a very simple process that is very similar to a diabetic injection of insulin.

Someone close to me asked me recently if I wished I’d started with injection of MTX as the first doctor prescribed. It is only human to wonder what might have happened, but I don’t allow myself to dwell in the past. I have to trust that things worked out the way they were intended. It’s okay to wonder, but I don’t allow myself to linger in that thought pattern. I know that RA has taught me a lot about what is important in life and has helped me grow as a Christian. I feel I made the decision that was right for me at the time. It was only through additional testing during my second opinion appointment that we found out my body could not have handled the MTX injections at that time due to poor liver function. Had I blindly went forward with MTX injections then, I could have permanent liver damage now. The liver can heal itself to some degree and while I was exploring other therapies that is exactly what happened. My liver is healthier now than it was in the past. God’s timing is perfect.

I’d urge anyone starting a new medication therapy to do your homework in researching the medication, side effects, and know if ongoing testing is needed to monitor your health while on drug therapy. Don’t let a medical professional force you into a choice. You know your body best of all and if you feel uncomfortable about a proposed therapy then discuss it with a trusted doctor or pharmacist. Also, don’t dismiss trying a therapy you’ve tried before or passed over when it comes to RA.  You might find yourself in a situation like me where it is the right time for a therapy previously ignored.

What you need to know about Methotrexate as a therapy for Rheumatoid Arthritis:

  • MTX is technically classified as chemotherapy but it is given in very low doses for rheumatoid arthritis.
  • Take the time to learn about this medication from your doctor and pharmacist and discuss the pros and cons of taking the medication by mouth or by injection. Be sure you are comfortable giving your injections using proper technique before you attempt home injection if that route has been prescribed.
  • Make sure that your doctor checks your liver enzymes at least every 3-4 months while on therapy to make adjustments to your dosing according to your lab values. MTX can become toxic to the liver and you may or may not have physical symptoms of toxicity. Some rheumatologists may ask for a ultrasound of the liver and may require a negative pregnancy test before prescribing therapy and randomly during the therapy.
  • Responsibly secure your medication. A dose of MTX could be very dangerous for a child or older person if taken accidentally. In addition, the medication may have specific storage and disposal instructions for oral and injection dosing. For example: Know what to do if you accidentally broke a vial.
  • MTX can lower your immunity so take the proper precautions as you would when on any other immunosuppressive drug.
  • Have realistic expectations about your drug therapy. Treatment for RA often involves a trail and error period of trying therapies for up to nine months. Get your pain under control first before you decide if a therapy is not working for you.
  • Keep the lines of communication open between you and your rheumatologist. Your doctors should be working with you collaboratively to come up with the best treatment plan for you.

Additional Information: http://www.drugs.com/methotrexate.html