How does Kevzara help with PMR symptoms and pain? I am being weaned
I have had Pmr for 15 months now. It took forever to get diagnosed. I have been on 20 - 5 - 1 mg prednisone. My rheumatologist wants me to try kevzara. Is it worth it? I have been this way so long now I have forgotten what normal feels like.
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@dadcue exactly, all true.
I’ll add in the emotional “love/hate” relationship that I (and many others) also have with Prednisone, to create that “perfect storm” leading to more of a “snowball effect” of what you mentioned above.
But, the human mind and body are capable of change, adaptation, recovery, and healing. Willing manifestation of a focused outcome is what I force myself to do 24/7.
While I haven’t healed a broken bone by PMA (positive mental attitude,) my body has adapted to medications and also I’ve weaned myself off of them in the past, successfully.
I thought Prednisone would a simple take it and stop it. My body had been adaptable in the past, no need to think differently now. Ha, boy did I get a wake up call.
I am doing quite well though. Reading about the success of others, and yourself, here in this group, keep me inspired. I’m still chainsawing trees. Mowing a couple of acres a week, weed whacking, blowing, raking, shredding, gardening, driving where and when I want, baby sitting grandkids, walking or bicycling with them to the park, swinging, playing catch, doing housework, volunteering in the neighborhood, working out daily, and my private parts work wonderfully. People see me moving about and have no idea. All in all, I’m fortunate. I know it. I just have a few obstacles to overcome, or learn workarounds to deal with them. Hopefully the list won’t keep growing.
I have a list of things to do today, so I’d better get after it.
Best of wishes and luck to you and all of us.
Randy
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2 Reactions@jabrown0407
I understand this way of thinking too. Nothing wrong with it! The grace part is something to strive for. Having grace when you are in so much pain is hard though.
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1 Reaction@dadcue
In my opinion, statistics can be made to look like nearly anything that you want it to. In the medical world, statistics identify commonalities that are basically guidance for diagnosis, treatment and outcome with the real world individual outliers being the wild card.
@kjoed53 do what you feel you can do. I exercise daily and physically move a lot. I push myself (within reason) because I believe that if I can more rapidly get fresh blood (oxygenated and medicated) to every cell in my body, then every cell, tissue, organ and system will recover, heal, and regenerate, if necessary, better and faster. Along with that is 8 hours of sleep, starting before midnight, because that is when our bodies heal.
Best wishes.
Randy
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2 Reactions@stonewheel
I haven't had 8 hours sleep in almost two weeks. I fall asleep quickly but I wake up during the night and have a hard time getting back to sleep. That's been the pattern since I've been on prednisone. I'm retired and my wife is still working, so I stay busy with the chores without overdoing it. We also have a 6 year old so she keeps me moving too.
@dadcue What side effects did you experience?
@dadcue That was so informative. Really appreciate your comments.
@prettypatti76
My Prednisone side effects were numerous but I didn't always realize they were prednisone side effects. My prednisone side effects were somewhat insidious and I slowly accepted how I felt as my new normal. I forgot about how I felt when I didn't take Prednisone. I didn't realize how bad I was getting until I tried to convince someone that I felt "more normal" on prednisone. That person needed to convince me that "normal people" don't take prednisone. She said I was in dangerous territory taking prednisone like I was. She had the insight that I lacked because she had an adrenal crisis while taking prednisone.
I don't seem to have too many side effects from Actemra. My rheumatologist tells me when some lab values are little off but I can't say that I feel any different. What I really like about Actemra is that I no longer have to worry about how much prednisone I need to take every day. I still have some pain but that is tolerable.
My rheumatologist understands why I have the pain. It isn't all autoimmune pain and certainly not much of it is being caused by PMR anymore.
My biggest mistake was thinking prednisone was good for all kinds of pain. It is true that Prednisone works for a wide variety of painful conditions but prednisone isn't the best treatment for every kind of pain. I'm looking forward to the time when prednisone isn't a good treatment option for PMR. I think there are better alternatives already.
I have had five "good years" being completely off prednisone. I would not trade any of my five years after I got off prednisone while being treated with Actemra alone. My life isn't "pain free" but that isn't what I strive for anymore. There are some days when prednisone seems to be calling me but I don't listen to it. I still have a prescription for Prednisone "as needed" but I'm supposed to tell someone when I need it. I should tell my rheumatologist because I think that prescription has probably expired.
Thanks so much for your reply. I sincerely appreciate it!
@kjoed53 I’m retired and my wife still works so I’m accustomed to the gig. She’s finally retiring in June.
I told my PCP about Prednisone not allowing me to sleep so he prescribed me Temazapam 30mg for sleep. He said they were less addictive that alternatives.
I take one every night. I’ll worry about that addiction if it happens. Right now I’m addicted to Prednisone, (4 months) and am slowly working (tapering safely and as rapidly as I can) at ending the addiction to it (started at 40mg and now 7.5mg. Like you, I weigh benefits to risks and lol, I’m stopping one addiction at a time. I’ll worry about sleeping pills after I’m off Prednisone, if I’m addicted to them.
Sleep is a must with this. Tell your doctor you need something to assure to get sleep.
One thing I did early on, was tell my PCP that I need him to be my “Chief” doctor. I let him know what the specialists recommend, but he’s in charge. He understands my situation and he has already helped me change a dosage and frequency prescribed by a specialist. I told the specialist and she was real good with his recommendation.
All of my doctors are in the same”group” or “system.” I’ve made that happen so they can see everything all that is going on and don’t have to ask me.