Wow am I confused and overwhelmed! Have had PMR for 3 1/2 yrs. On Pred but when tapering down inflammation markers go back up. It was discovered that I have an Aortic Aneurysm by my cardiologist but said not to worry, it was small. My Rheumy saw that and thought maybe I have GCA. I have no other GCA symptoms, however she thinks my problem with tapering down is a sign that it's more than PMR. She wants me to start on Methotrexate. I'm not convinced. Anyone taken that?
Also I have Swollen Clavicle Joints and that darn SOFT POUCH in between. I saw that others have that soft pouch as well... has anyone else had swollen clavicle joints? I have not gained weight so the neck thing is very noticeable. I recently tested positive for RA but again have no other symptoms other than swollen clavicle joints. Doctors can't seem to figure out what's going on. Seeing the cardiologist today to get his opinion on the GCA diagnosis.
My rheumy put me on Hydroxychloriquine back on Nov. 1, 2016. Supposed to start on Methotrexate (don't want to) and stop the Hydroxy, then taper down the Pred. I had gotten down to 2 mg around Aug/Sept but had a flair up. Also had been getting cortisone shots which I stopped. Now back up 15 mg and the Hydroxy and feeling ok, just tired.
Anyone have any input or similar problems? What other drugs have you all tried anyone try the Biologics out there?
Thank you. Sorry this is long, but it's complicated!
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PMRinsdca
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Depends on how big the aortic aneurysm is. They leave small ones because they are less risky than surgery (any operation poses a risk) and monitor them to see if they grow. Once they are approaching a particular size they will intervene - maybe by surgery but also maybe using a stent. But your cardiologist obviously thinks it is small enough not to worry about for now. Aortic aneurysm can be a late concequence of GCA which will be why it occurred to them - and PMR patients often do have GCA but they don't find it if the don't look for it.
I'm blowed if I can understand their desperation to say if you can't taper down it must be more than PMR - if it is it could well be GCA but even PMR can last up to 6 years for half of patients and 5% of us have it for life. And even more bewildering is the keenness to use methotrexate. There is some evidence that i it is used from the start it may help - but not when introduced at a late stage.
If you got to 2mg before a flare I'd suggest you HAVE been able to taper successfully - but you went a bit too far. Had you stopped at 5mg, perhaps even 4mg, you would have been fine. And that is what you are doing; tapering to find the lowest dose that gives the same symptoms control as the starting dose did. It may not be zero, in fact, it probably ISN'T going to be zero yet, but it will be a dose under the physiological dose (the amount your body makes naturally in the form of cortisol) which is equivalent to about 7.5mg of pred. You might not have needed to go back to 15mg - why do they do that too?
My collarbones were swollen for a long time - but it is much less noticeable now.
Thanks PMRpro. I was able to get down to 2 mg because previous rheumy was giving me cortisone shots about every 3 mo. His plan was to do the injections to taper the Pred. But every time the shots wore off (2 1/2 - 3mo) I was feeling the PMR again.
I bumped up the Pred little by little after stopping the injections. I tried 5mg, then 10mg. My doctor was telling me to go to 20mg but I went to 15mg and am doing ok other than some fatigue.
What a strange concept - pred is pred is a steroid! The return of the PMR as the steroid shot wore off is because the disease is still active - which he should have expected. You CAN manage PMR using depot methylprednisolone alone - and it is now mentioned in the guidelines - but you can only do it within the restraints of disease activity.
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