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carley
@carley

Posts: 11
Joined: Nov 14, 2018

Still no diagnosis

Posted by @carley, Mon, Dec 3 6:00pm

I am continuing on my journey. I went to a new physician today, an internal medicine doctor. I only had one 10 mg Pred left until another doctor appt in 1 week. I felt I needed to at least get some more Pred since what I have been reading has me a little spooked if I stopped cold turkey after 50 days. While I felt he listened to me, I don’t think he heard me. He somewhat agrees with me that it could be PMR, but he thinks I should have had no pain after taking a dose of 40 mg for 5 days. I have taken 2 separate 20 day regimens starting with 40mg, 30 mg, 20 mg, 10 mg. It appears to me my pain and stiffness symptoms decreased with the 40 and 30 mg doses. With the 20 and 10 mg doses, the pain and stiffness increased. I argued that perhaps if I took 40 mg for a longer duration maybe the pain would have decreased. Long story short, he gave me a 30 day script for 20 mg a day. He also is trying to fast track me to see a rheumatologist so will see what happens.
While I was happy to see he was at least aware of PMR and GCA, he said it usually lasts a year or so and if it’s PMR the Pred should take the pain away. I tried to explain to him how the pain never goes away completely, talked to him how emotional I have become and asked about doing blood tests. From what I have been reading I think I should have follow up blood work, but he did not order any. He ordered Alendorate (generic for Fosomax) to help with bone density.
So my question to all of you, when you take the Pred, does all of your pain go away? I guess, I am at his mercy to try the 20 mg. He also thought it was maybe rotator cuff on left side since both sides are affected, but my left is worse. I don’t know how that explains my butt, hip pain though. Any thoughts?

REPLY

Hi Carley, each of us can be a little different in how PMR affects us if that is indeed your diagnosis. I hope you are able to see a rheumatologist soon. In both of my two occurrences of PMR I was started on 20 mg prednisone daily. The first occurrence it took my over 3 years to taper off of the drug. As I was tapering off for both occurrences I still had a little pain and stiffness in the mornings but it was nothing like the pain before I started taking the prednisone. Most of my pain was in the arms, shoulders, legs and joints. I also found that it was important to do some sort of exercise (not strenuous) to keep flexible. In some people they also prescribe Methotrexate along with the prednisone to treat the pain but I have no experience with it. Mayo Clinic has some good information on PMR here:

Polymyalgia rheumatica
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545

John

@johnbishop

Hi Carley, each of us can be a little different in how PMR affects us if that is indeed your diagnosis. I hope you are able to see a rheumatologist soon. In both of my two occurrences of PMR I was started on 20 mg prednisone daily. The first occurrence it took my over 3 years to taper off of the drug. As I was tapering off for both occurrences I still had a little pain and stiffness in the mornings but it was nothing like the pain before I started taking the prednisone. Most of my pain was in the arms, shoulders, legs and joints. I also found that it was important to do some sort of exercise (not strenuous) to keep flexible. In some people they also prescribe Methotrexate along with the prednisone to treat the pain but I have no experience with it. Mayo Clinic has some good information on PMR here:

Polymyalgia rheumatica
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545

John

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I forgot to mention he also prescribed me Alendronate. I think it is generic for fosamax. Anyone have any thoughts? I am hesitant to take it. He was not concerned enough to order a bone density test. He said maybe in a couple of years. Then I wonder why do you want me to take this.

@carley

I forgot to mention he also prescribed me Alendronate. I think it is generic for fosamax. Anyone have any thoughts? I am hesitant to take it. He was not concerned enough to order a bone density test. He said maybe in a couple of years. Then I wonder why do you want me to take this.

Jump to this post

@carley some of your symptoms sound like they could also be a side effect of the Alendronate (Fosamax). I would talk to your doctor about the possibility of your pain being due to the side effects of the drug.

Fosamax Patient Information Including Side Effects
https://www.rxlist.com/fosamax-drug/patient-images-side-effects.htm

@johnbishop

@carley some of your symptoms sound like they could also be a side effect of the Alendronate (Fosamax). I would talk to your doctor about the possibility of your pain being due to the side effects of the drug.

Fosamax Patient Information Including Side Effects
https://www.rxlist.com/fosamax-drug/patient-images-side-effects.htm

Jump to this post

I have not started taking it, nor do I intend to until someone proves to me I should.

@carley

I forgot to mention he also prescribed me Alendronate. I think it is generic for fosamax. Anyone have any thoughts? I am hesitant to take it. He was not concerned enough to order a bone density test. He said maybe in a couple of years. Then I wonder why do you want me to take this.

Jump to this post

Yes! Take alendonate. It wasn’t mentioned to me when I was on prednisone and now I have serious osteoporosis!

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