Latest message from the doctor

[therock]

Just wanted to update you all on what our rheumatologist dr has or has not done now for us now.

I had posted earlier about the trouble my husband was having reducing from the initial 60 mg of pred to 20. He is still now at 30 and wakes with muscles burning in his arms and legs, but it is tolerable and it subsides after he takes his pred in the morning and walks around a bit. When he had his initial bout of pain with the first reduction, he called the doctor and that was when he ordered the 4 days at 40 , followed by 3 at 30 and then down to 20. 30 is currently where we are at because he could not drop to 20, all of that I have posted before. The doctor also at that time ordered a bone scan, the ESR, and C-reactive proteins. My husband says there was also an "antibody" test. I was unable to go with him at the time, so I don't know what that exactly was. I have been monitoring the results of the tests online through his patient portal and that was where I saw that the latest C-reactive protein was 52 (down from an original 76) and his ESR was 20. As I interpret the bone scan, there was nothing showing any major problems. That was just completed two days ago online. I can find no results for the "antibody" test online. The doctor's nurse called and left a message and said that my husband's labs showed "abnormal blood protein" and he was referring us to a hematologist and was sending my husbands' results there. We tried to call them back when we got home and could not get a hold of anyone. The doctor has discussed none of the results of the labs with us, just sent us on. I am scared as to what this means, we will try to call again, but the hematologist has called and scheduled an appointment next week. I know that PMR has the same symptoms as cancer, but could this just be a really bad doctor that doesn't want to deal with us? I don't know it just seems a bad way to handle this.

On a positive note, my husband's visit to the eye doctor went well, just a small change in his prescription and no changes in his eyes.

Thanks for allowing me to air this, hopefully we can get a hold of someone today.

[PMRpro Ambassador]

Wonder what protein they mean - I wouldn't have thought the CRP would merit a haematologist. However - much the best thing to do, it rules other causes of the symptoms in or out and having the right diagnosis is important. All the best and let us know what transpires.

[therock in reply to PMRpro]

Thank you, it is a scary time right now and we appreciate the support.

[SheffieldJane]

I agree that this was handled badly. We need our doctors to be open and honest with us. I hope everything goes well for you both, you are having quite a journey! Let us know please.

[therock in reply to SheffieldJane]

Thank you, we still cannot get in touch with the doctor to find out specifics as to exactly why we are being referred to a hematologist. They will not return my husbands calls, but we did a call confirming the appointment with the hematologist next week.