A low place tonight

Posted by paulagcl @paulagcl, Jul 7, 2023

It finally hit tonight, that my life has completely changed. I am considering redoing my financial plan and spending much more to live where I want to for the next couple of years and then enough is enough. I'm lucky that I have done almost all I wanted to in my life.
I had a wonderful husband, have a wonderful son and family, and followed my interests and abilities in art and music both as a profession and as a center of my life. People keep telling me I am strong, but I feel exhausted now, three months into this diagnosis.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Sadly most of the great men I knew have also left this earth too early. But there may be some left, I found my man online on Match.com. There are many other sites and some are free.

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Sadly most of the great men I knew have also left this earth too early. But there may be some left, I found my man online on Match.com. There are many other sites and some are free. We've been together for 12 years now.

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I was kidding, actually. I'm too old for that now.

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My PCP has just prescribed Cymbalta to try to deal with the depression and pain of PMR. I have been on methotrexate for 3 months but it has not helped to prevent flare-ups or to reduce the prednisone. Has anyone else tried Cymbalta?

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No, haven't taken it but I hear it's good and is the one that can help with pain as well as depression.

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@paulagcl

I was kidding, actually. I'm too old for that now.

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Though not too old to dream about it!

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@maggie14

My PCP has just prescribed Cymbalta to try to deal with the depression and pain of PMR. I have been on methotrexate for 3 months but it has not helped to prevent flare-ups or to reduce the prednisone. Has anyone else tried Cymbalta?

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I haven't tried Cymbalta. I have fibromyalgia and it's FDA approved for fibromyaliga; it might help chronic pain because it affects how the nerves process pain. It's also shown to help with depression, so it can be a two-fer, for people who are responders. That said, anecdotally it seems to me like people either respond really well to it, or really poorly (I'm in some chronic pain forums and know others with chronic pain). Because it's an SNRI (a neruomodulator or anti-depressant), it has all the potential side effects: Nausea, dry mouth, drowsiness, etc. Some people have a very difficult time getting off it too (discontinuation syndrome). I'm not trying to scare anyone off taking it, but I just bring it up because I have a medical condition that makes me very sensitive to medication, and my Neurology NP specifically warned me she had a fair number of patients who had a very difficult time with side effects or discontinuing Cymbalta. She said for people who are older or have the same sensitivity to medication I have, it can be a little more difficult to tolerate.

But it's really about quality of life. There are lots of different neuromodulators if Cymbalta ends up not working as well. Or do you think you'd want to try any of the other medications some have shared about using to help them reduce their prednisone (Kevzara, Actemra)? They've both been shown to help people get off prednisone. But I think you might need a rheumatologist for that, and I see you mentioned a PCP.

My dad is the one with PMR (my mom & I are his caregivers after he had a stroke), and the three of us together decided we weren't comfortable with the risks...because he also has extreme sensitivity to medication (probably where I got it from--for almost any anticholinergic, even Zyrtec for allergies, he gets really, really sick). He takes LDN (low dose naltrexone) for fatigue (we both do), and he takes a teeny tiny dose of Prozac (2.5 mg). It's helped. It's prescribed off-label from compounding pharmacies for chronic pain and autoimmune conditions, now including long COVID. It's harder to obtain because some physicians aren't aware of it, there's not much "high quality" research on it, but it's very low risk of side effects. There's really interesting research going on for its effects on chronic pain.

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Sorry you feel so blue. I had reached that point just before I was diagnosed with PMR and started treatment with prednisone. It was like a miracle for me. Suddenly I went from feeling hopeless despair to my old, pre PMR self. Yes, I understand there are side effects but so far I haven’t experienced any and am being proactive taking supplements as needed to help prevent bone loss, hair loss etc. There’s a new biologic out too for PMR. Maybe talk to your PCP about it if you don’t want to take pred. Best of luck, hang in there.

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Do what makes you happy and it will get better. Think of all that you have experienced in life and all those that love you. They want and need you to be well. I came through the other side of PMR and prednisone and am so thankful I hung in there with all of the treatments and through all of the side effects. My hope for you is that you will have the same progression. It is worth it!

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@bohobama

Sorry you feel so blue. I had reached that point just before I was diagnosed with PMR and started treatment with prednisone. It was like a miracle for me. Suddenly I went from feeling hopeless despair to my old, pre PMR self. Yes, I understand there are side effects but so far I haven’t experienced any and am being proactive taking supplements as needed to help prevent bone loss, hair loss etc. There’s a new biologic out too for PMR. Maybe talk to your PCP about it if you don’t want to take pred. Best of luck, hang in there.

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I'm taking a biologic along with the prednisone, the hope being to wean me off the prednisone eventually. What supplement do you take for hair loss?

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