Steroids: Tapering Off - Part 3

Well, November has been quite an eventful month for me. Not necessarily all bad. During this month, I have been on 30 mg of Prednisone all month. Each month when I reduce the dose by 10 mg, I am quite nervous that I will feel a difference in terms of side effects from tapering, but luckily I haven't. One thing we have determined is that my hip pain is not from the steroids which is from my standpoint, good news.

Finding a balance with medications

I finally had my meeting with my medical team a week ago and they had suggested that I remain off treatment unless we see progression in my scans. This terrified me since my diagnosis almost 6 years ago, I have never been off treatment. I asked if we could start Opdivo again since my hands have cleared up completely with the blisters and the cracking. My oncologist immediately said she was not comfortable with that for fear that my blisters would come back. I asked if I promised to call her on Day 1 if they reappear and she finally agreed. HOORAY!!

Her only reservation was that I had to be on 20 mg of Prednisone to start, so my appointment is on December 10th to begin Opdivo again.

My progressive hip pain

Now back to my hip pain. It has been getting progressively worse to the point that I am now using a walker to get around. Hip pain is an odd thing. While something may be wrong with your hip, sometimes there is no pain in your hip, but in your thigh. That is because hip pain is known to radiate as low as your knees. Mine has been both.

While I always feel the pain in my hip, I also feel it in my thigh and sometimes my knee. We did get an MRI scheduled which is for Monday so hopefully, I will know more at that time.

How can I manage my constant hip pain?

Vascular necrosis happens when blood flow to the hip bone slows and the bone tissue dies. Although it can affect other bones, avascular necrosis most often happens in the hip. It can be caused by a hip fracture or dislocation, or from the long-term use of high-dose steroids (such as Prednisone). This is the diagnosis that we think will come from my MRI. I didn't fall. I didn't have an accident. I just woke up with hip pain one day about a month ago and it has slowly and progressively gotten worse.

For anyone who is suffering from this, my advice is to stock up on Motrin. I have tried opioids with absolutely no relief. The only thing that has taken the edge off for me is round the clock Motrin. It reduces inflammation and helps a little.

Editor’s Note: We are extremely saddened to say that on January 28, 2020, Jennifer Toth passed away. Jennifer was a passionate advocate for the Lung Cancer community. She will be deeply missed.