Wait 4 flare to happen B4 starting Kevzara or ?
My Rheumatologist wants me to start Kevzara. She's concerned I'll have problems with flares as I taper off Prednisone because I had to increase from 15mg to 20, to 25mg to get full relief, and my PMR pain and symptoms were really brutal and incessant from Mid-March until I was finally diagnosed 7/31/26. The pain woke me up every single night. I had to get out of bed and sit upright on couch with pillows under each arm to try to sleep.
It would start every night around 1-3am, and the pain/symtoms lasted all AM and into the early afternoon before they'd start to wane and then do it again every night. So, it was very severe for many months before I got diagnosed and treated. So that's a reality I sure don't want to repeat if I can help it. I've just tapered from 25mg to 22.5, to 20mg last Saturday. Have a lot of my old chronic pain back and can "feel" some of the PMR areas but no PMR pain or symptoms.
Before you can start Kevzara, you need to rule out multiple diseases.
I already did the TB,HIV,HEP B & C blood tests, all negative. Waiting for prior authz from my insurance. Also, I'm scheduled for Endoscopy (but not until Nov, to be sure I don't have any ulcer, GI bleed, or Celiac disease). I'm going see if I can get in sooner than November, so I'll know if I can take Kevzara or not.
Another reason for Endoscopy is my Iron Saturation had gone down to 9. Need to know if there is bleed causing that. Had to get 5 a iron IVs. Or was it from all the inflammation?
Also, Kevzara is very expensive, even though I know it'll be whatever my RX deductible is for the year then everything is free. It's just hard to think of it as OK to spend a lot of money if no flares yet. I don't want any flares, ever, of course, but need your feedback if you would. Would you wait to see if you actually get a flare first before starting Kevzara? There's possible side effects for it too. Thank you all so much for all your help and input. I've learned so much from you. Blessings.
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@kjoed53
I'm sorry to hear about your knee pain. I have bad knees too. Osteo also. I don't know the severity of your pain, but I keep seeing someone post about Tylenol Arthritis. I've never tried it. I have tried Arthritis pain cream and the little pellets made by a Homeopathic company called Boiron. They aren't strong enough for me, but might be something to look into. The pellets have different natural plants that help. I've used their Arnica gel (topical) and Arnica 30C pellets for years for swelling/bruises.
Everytime I know I'm having a surgery or blood test I take the pellets 3 days before and use the gel topically afterwards. Like the spot where they drew blood. It prevents (or can reduce afterwards) the big ugly bruises I get nowadays. The pellets help a bit with pain if it's not too bad. The pellets 3 days before kept me from getting bad bruising on my face from a dental gum graft. It really worked.
Due to all my chronic pain I've been seeing a pain specialist many years. He's a "physical medicine and rehabilitation Doctor." RX pain med helps. Have you asked your PCP re pain medication? If it's bad enough. Constant pain, as we all know, is totally detrimental to so many aspects of our body, life, health.
If you can't sleep, your body can't repair, so whether it's the PMR pain or other severe pain, we need relief. Not just for sleep obviously, but it is a huge problem when constant pain is present. I hope you find some relief in any form. I still live with some pain and don't take it if I don't need it. It was nice not to feel all of it while it lasted :-), but alas, reality calls! But I'll take this pain any day over the PMR pain.
Blessings.
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1 Reaction@boomermeg
I'm leary of taking many of the natural remedies because I'm on meds for AFib, PVCs and PACs and I find more than a few things affect me negatively. I do use bio freeze, and have been using it for many years with no ill effects. I also take 3mg LDN at night. I started taking it as a bridge from prednisone to kevzara but it helps me sleep better so I will probably continue taking it even after the kevzara takes full effect.
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3 Reactions@petermccarville Good for you that you didn't have to do the kevzara! Substituting one poison for another is a terrible part of this condition.
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1 Reaction@stonewheel
Thanks for your reply and sharing your experience. It all helps. For me it was shoulder and upper body pain that woke me up every night. The hips/thighs were involved too but didn't wake me up.
I hope I don't have any ulcer too. It's possible, even likely that the critically low iron saturation was from the inflammation bringing on hepcedin which blocks available stored Iron from being used by the body. The GI Dr. also wants to rule out Celiac disease (which causes iron issues too) and rule out ulcer etc. It was my PCP NP who was initially concerned it might be a GI bleed, but that was also prior to PMR diagnosis. So, unfortunately, the only way to rule out ulcer is Endoscopy and the celiac disease blood tests were negative, but one gave her enough to say a biopsy is only sure way.
I agree about less medications is always better. It's been OK so far tapering from 25 to 20mg, but as some others have mentioned, I'm still on high doses yet. It seems it's the lower dose area (10mg or so) where it can get trickier re flares. With what input I'm getting so far, and my own, I'm getting the Kevzara Rx lined up because I hear Insurance often fights authorization and it can take time. They also might require trying another medication first and failing that prior to allowing it.
Mine is a Medicare advantage plan and any government insurance isn't eligible for a manufacturer discount from what I've read, so that won't help, but thanks for the suggestion.
So, for now, I am just taking Prednisone. I've only been on it since 7/31, so it's early in terms of getting adverse side effects and can still happen but hopefully not.
Thanks again. Blessings.
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1 Reaction@kjoed53
It's better to be leery of anything when you're not sure if it'll interact. That's funny! I'm a Biofreeze stock owner :-). I should be!! I swear by it too, and have the roll-on type handy, including my purse. It's only temporary but it does work for me too. I just started taking .5mg melatonin along with magnesium glycinate 1 hour before bed and it's really improving the quality of my sleep. I think it'll take a few weeks for the full benefits of melatonin. I just read an article re melatonin can help pain issues (not severe surgical, but musculoskeletal type) because improving sleep helps break the pain cycle.
I think the 5mg reduction in Prednisone probably helps too. I just looked up LDN. Sounds like it can be very helpful. It mentioned vivid dreams possible, same with melatonin. That happened to me the 1st night I took melatonin. Dream so vivid I knew it was the melatonin. I searched about it and found out you should take melatonin at least 1 hour before going to bed to avoid the vivid dreams. It works. I'm glad you've got Biofreeze. It's a great product. I prefer the "green" one for potency. Wish it wasn't green but for some reason the clear colored one doesn't work as well for me. Go figure! Blessings.
@boomermeg
I had some very vivid dreams the first week on LDN. Now it's only occasionally but I can't say for sure that it's from LDN. Be careful with the melatonin. New studies are finding a possible link between long term use of melatonin and heart failure. Studies are like statistics though. They can be distorted to fit the agenda.
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1 Reaction@kjoed53
Yes to studies to fit agendas.
I only take .5mg, 1/2 of a 1mg tablet. Don't want or need more.
Guess I'm a lightweight:-).
Thanks for mentioning it. Blessings.
@stonewheel
Just a short addition to your post... I have Cigna insurance through my wife who is still working, and I had to apply through the manufacturer for their copay card. Cigna uses an online pharmacy for kevzara and they have a go between that works as a patient advocate to the pharmacy. I was told not to put any payment information on the pharmacy site and if I ever received a bill to let them know.
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3 Reactions@kjoed53
Thanks so much for posting this. While my insurance is Medicare Advantage, not private like Cigna, it's still good to know about for anyone with private insurance trying to get the manufacturer discount. I appreciate it. Every bit of information can help someone here. Blessings.
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1 Reaction@boomermeg
I think most people here don't have private insurance but if it helps one other person, it's helpful. The one thing that is relevant to everyone is that if you save a payment option on the pharmacy site, you run the risk of them charging you without your knowledge or approval.
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2 Reactions