Just diagnosed and feeling afraid
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Hi All! New to this group and actually I have never joined any group looking for support. I have been suffering with all over body pain for over a year and have had blood tests that showed I was incredibly healthy. Asked my doctor to recheck my labs since it was over a year ago. I received a call from his nurse that my levels were high and he suspects I have PMR and prescribed me Prednisone 20mg for 3 days then 6 days at 10mg and let him know if it helped! I'm on day 3 and have some relief and I'm afraid that means its not working or that its not PMR. Anyone wanting to share their experiences would be appreciated!
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Anhaga terri61898
Posted
Hi Terri. There are tests your doctor needs to run to rule out other conditions. It sounds like you've have a lot done and nothing found except some raised inflammatory markers. The next step is, indeed, what your doctor is doing, a moderate dose of pred. Rapid and eventually near complete remission of symptoms is considered the best way to diagnose PMR once all the other problems are ruled out.
HOWEVER I question your doctor telling you to stay at 20 for only three days then drop immediately to 10. As you have so far achieved only partial relief it would indicate to me that you need to stay at 20 for at least a week. The fact that you have been in pain for a long time may or may not have some bearing on how much inflammation your body has developed and how long it will take to clear it out. Have you been given enough pred to stay at 20 for the whole week? If not, check with your doctor again before tomorrow when you are supposed to drop by 50%. Under any circumstances a drop like that is likely to be at the very least unhelpful and at the worse cause more problems down the road for you as you work to control your symptoms.
Google HealthUnlocked for a different forum with many more participants, some of them extremely knowledgeable, who can give you good advice. You should look for the PMRGCAuk community in that forum. I'm sorry I'm not able to post a link here.
A mantra some of us longtimers repeat is, "It isn't slow if it works". Your doctor may have reasons for not wanting you to stay at 20 mg for long,but it is not, in the short term, a dangerous dose and it is one many people require at the beginning. Usually one stays at a starting dose for one month and then you begin a slow and careful taper to find the dose which best controls the symptoms until PMR decides to go into remission. Pred is not a cure but it is all we have to give us back our quality of life.