Prednisone to Kevzara back to Prednisone. ( Hope not )

Posted by tadatada1 @tadatada1, Jun 13 3:08pm

PMR diagnosed High SED Rate I have been on prednisone for about two years starting at 15 mg and eventually figured out that my break even was 10 mg. I tried lowering my dose a few times and my pain severely increased especially below 7 mg : I have gained weight ( 20 lbs ) I started on Kevzara three months ago I complained to the doctor that my legs are very weak before I started kevzara . My thighs are very weak I need support to get up from the floor . She said I had prednisone myalgia . I am now down to 1 1/2 mg prednisone. I have pain in my knees ( never ever had knee pain ) weakness in my legs and neck pain ( I previously had neck pain and don’t know if it is related to being off prednisone and not related to PMR )
My sed rate is still one but my WBC is now 2.5 Down from 5.7 before Kevzara. It was 3.4 After 6 weeks on kevzara Doctor wants me to skip my next dose of Kevzara and take a blood test before the due date next Friday and one a week after the due date. My big fear is without prednisone and Kevzara I might have very severe pain.
It took a long time to lower my prednisone
What should I do next. Don’t want severe pain
By the way I have noticed anal leakage due to prednisone as commented on other summaries and think my slight incontinence has increased

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

@tuckerp

Good Bio. I enjoyed getting to know you. thanks for sharing. I am 72. Not getting any easier. When I was getting diagnosed I made 3 different visits to orthopedic Dr. thinking they were missing something. The last one was pretty good. He ordered the MRI and told me he thought I had an auto immune disease to see a Rheumatologist. He gave me a cortisone shot in both shoulders and it did help for about 2 weeks. But he told me that he would only give me one shot. He said the shots can deteriorate the joint. I had a small slap tear in the right shoulder. He said that he would do the stem cell injections for $400 shot but no more cortisone. Just FYI. I got a laugh out of taking care of your body when younger. We came out of the 60's. My wife got hepatitis B from smoking a joint with her girlfriends. I had to get the shots. I never caught it. I wasnt much of pot smoker. But I did my fair share of drinking. I dont do anything anymore.

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My pleasure. Live to share and help others. Hep B is transmitted by another infected person, or fruit that has been handled by too many people. There’s no way you could get Hep B by smoking a joint. I’ve been indulging for 45 years. Never had an issue with smoking as I ALWAYS used my own. Never smoked off something that was in another’s mouth. I got hep C in
1970, busing heroin, stupid choice, married a pervert ( not knowing) lol. Back then hep C was considered “ non A “ non B” as there was no cure. Hubby or 2 kiddos never got it from me. It’s only passed by needles from one to another. Not a sexual transmission, ONLY BLOOD TO BLOOD. Hep B is much easier to get as it’s from mishandled pre-cut foods as in a restaurant. As for my issues now, one needs to take at least 1200 mg of Calcium, vitamin D daily to keep your bones strong. My Cortisone shits June 13 are still holding up. Awesome. My hips are next as my only exercise is walking, and oh boy do they hurt. I have tingling from feet up legs to hands. PMR & Rheumatoid Arthritis are pretty much the same. BUT ~ I have no joint pain !! Inflammation is running along my muscles from Cervical, down shoulders, arms to hips and on down. In the middle of the night, 12:00 am to 4:00 am your body is repairing itself. When this first started 2 years ago it was excruciating burning pain all over my body ! My POS Dr., didn’t listen to my issues, didn’t care, did freezing nothing. Sent me to a Rheumatologist, who I couldn’t even understand as his broken English was so bad. It’s Dr took so much blood and couldn’t come up with an answer. So I searched on my own. I should have done what another person in here did, @ Gi to the Endrgebcy Hisputal” as they take do as much if not more blood work that “ the Primary Dr”. No desire to take Prednisone at this time as the Cortisone Shots in Shoulders helped and since I will not be seeing my new FEMALE INTERNEST until November. If the PMR is not treated it could lead to JIANT CELL ~ which clogs your blood arteries, etc. The problem with the BIG PHARNA INDUSTRY IS : If you cure the patient, they will have no business! Plain and simple. Sane with the Dr’s. I’m very savy at 72 refuse to take any more BS from a lazy Dr who is burnt out with his practice. I have great Medicare, and a great supplemental. I can go wherever I want. I search Mayo Clinic as I know they are the best. My Hep C Treatment was through Loma Linda University in SO. CAL. The only reason I go to CA anymore. Burn and raised there and gut the heck out in 1998, relocated to Northern, NV. This whole mess was created by trying to help our “ Millennial Daughter” who became a moms, didn’t want to give up her life !!! REALLY? Then had another son 18 months later. Get and get Narcissistic hubby “ used and abused me”, had a mild Heart Attack the end of February 2024. 3 Dr’s told me, “your 70 and chasing 2 toddlers around, you’re going to kill yourself, get out if that house” lol ~ that I did. Now I’m the bad grandma ~ because both hubby and I worked 50 years, to retire and enjoy life. But become a babysitter. We’ll visit 3 times a year. My health is #1, and if I’m not proactive, I’m sunk ! You take care.

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I went to lots of parties in college and after college where everyone passed a joint or a pipe or a bong. I wasnt much into smoking. My wifes sister had hepb. She had the lunch party. They were smoking and passing. could have been touching hands or hugs and kisses. Who knows. Two others at the party got it as well. Her sister was a waitress. Her whole family got it. My wife gave it to two of techs at the Dr office. They made us wait in the car after that for her appointment. For whatever reason my daughter and I did not catch it. We got the vaccine but we had to have been exposed. I have been going to Mayo. Been getting great care. They are a little busy. Good Luck.

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@leenee72

Very excellent that you took this route. I should have done exactly that !!! I was in Vegas at the time helping daughter with Grandkids. 2 toddlers. Dr wouldn’t do the proper blood work ! Very poor treatment to a 72 year young patient of 8 years. I just made an appt., with Orthopedic Surgeon to take X-Rays of hips down to feet. Get the Steroid shots in both hips and be done with until I see new Dr in November. Thank you for your reply to me.

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Also my Thyrous was very low in 2022. Dr missed it. Just as he has missed everything. That’s when I noticed hair falling out like crazy. Kept complaining ~ saw De’s retired OA 10 months later. He caught the low Thyroid, put me on Levothyroxin. Few months later the burning pain in the middle of night, cervical, shoulders, down to hips, now feet tingle at night up legs to hands. That’s whennI started searching in my Jen. Dr told me “ all in your head, brain fig@ … maybe a but if PTSD from kids if 23 year young son in 2011. The UNTHINKABLE 😭. At 70 daughter was abusing me to care for her toddlers. All day !!!!! Have all the symptoms of Polymalsia Rhumatic, Dr refused to listen to me. I was using a CBD oil for the pain. Finally, June 13, 2024 ( we live in motorhome, head to WA & OR Coast for the summer. Made appointment with Orthopedic Syrgein. He took X-rays, immediately gave me a Cortisone Steroid shot in each shoulder. Immediately relief. Still working. Bios will be done late August. Have new Female Internest set up, can’t see her until middle November in So. CA, hopefully she will have compassion, listen to me, empathy. I was tested for Lupus, nope. Could also be Rhumatoid Arthritis. Had mild Heart Attack February, 2024, helping daughter with Toddkers. 3 Dr!s told me “you are 72 and you are chasing 2 toddlers all day…get out if that house or you will kill yourself.”I did. Now daughter resents me not “helping her with her boys”
What dies she not understand that I am too old ?” !!! She doesn’t care one but if my health. No words. I have Prednisone which I am taking sparingly as needed. Can’t wait for proper Blood Work ! To disquingish the true medical issue

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@leenee72

Also my Thyrous was very low in 2022. Dr missed it. Just as he has missed everything. That’s when I noticed hair falling out like crazy. Kept complaining ~ saw De’s retired OA 10 months later. He caught the low Thyroid, put me on Levothyroxin. Few months later the burning pain in the middle of night, cervical, shoulders, down to hips, now feet tingle at night up legs to hands. That’s whennI started searching in my Jen. Dr told me “ all in your head, brain fig@ … maybe a but if PTSD from kids if 23 year young son in 2011. The UNTHINKABLE 😭. At 70 daughter was abusing me to care for her toddlers. All day !!!!! Have all the symptoms of Polymalsia Rhumatic, Dr refused to listen to me. I was using a CBD oil for the pain. Finally, June 13, 2024 ( we live in motorhome, head to WA & OR Coast for the summer. Made appointment with Orthopedic Syrgein. He took X-rays, immediately gave me a Cortisone Steroid shot in each shoulder. Immediately relief. Still working. Bios will be done late August. Have new Female Internest set up, can’t see her until middle November in So. CA, hopefully she will have compassion, listen to me, empathy. I was tested for Lupus, nope. Could also be Rhumatoid Arthritis. Had mild Heart Attack February, 2024, helping daughter with Toddkers. 3 Dr!s told me “you are 72 and you are chasing 2 toddlers all day…get out if that house or you will kill yourself.”I did. Now daughter resents me not “helping her with her boys”
What dies she not understand that I am too old ?” !!! She doesn’t care one but if my health. No words. I have Prednisone which I am taking sparingly as needed. Can’t wait for proper Blood Work ! To disquingish the true medical issue

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I cant wait for you to either. You deserve it. Be strong and live your life with less stress. When you die everything moves right along. So let things go and enjoy what you have left.

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@tuckerp

I cant wait for you to either. You deserve it. Be strong and live your life with less stress. When you die everything moves right along. So let things go and enjoy what you have left.

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Thank you ! Exactly why we live as we do, and will continue.
I was so stressed expected to care for grandkids, Narcissistic husband she has. Also on Linisprol BP, 10 mg, 2x daily after “
Minor ”heart attack”! Enjoy life every step of the way !

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@leenee72

My pleasure. Live to share and help others. Hep B is transmitted by another infected person, or fruit that has been handled by too many people. There’s no way you could get Hep B by smoking a joint. I’ve been indulging for 45 years. Never had an issue with smoking as I ALWAYS used my own. Never smoked off something that was in another’s mouth. I got hep C in
1970, busing heroin, stupid choice, married a pervert ( not knowing) lol. Back then hep C was considered “ non A “ non B” as there was no cure. Hubby or 2 kiddos never got it from me. It’s only passed by needles from one to another. Not a sexual transmission, ONLY BLOOD TO BLOOD. Hep B is much easier to get as it’s from mishandled pre-cut foods as in a restaurant. As for my issues now, one needs to take at least 1200 mg of Calcium, vitamin D daily to keep your bones strong. My Cortisone shits June 13 are still holding up. Awesome. My hips are next as my only exercise is walking, and oh boy do they hurt. I have tingling from feet up legs to hands. PMR & Rheumatoid Arthritis are pretty much the same. BUT ~ I have no joint pain !! Inflammation is running along my muscles from Cervical, down shoulders, arms to hips and on down. In the middle of the night, 12:00 am to 4:00 am your body is repairing itself. When this first started 2 years ago it was excruciating burning pain all over my body ! My POS Dr., didn’t listen to my issues, didn’t care, did freezing nothing. Sent me to a Rheumatologist, who I couldn’t even understand as his broken English was so bad. It’s Dr took so much blood and couldn’t come up with an answer. So I searched on my own. I should have done what another person in here did, @ Gi to the Endrgebcy Hisputal” as they take do as much if not more blood work that “ the Primary Dr”. No desire to take Prednisone at this time as the Cortisone Shots in Shoulders helped and since I will not be seeing my new FEMALE INTERNEST until November. If the PMR is not treated it could lead to JIANT CELL ~ which clogs your blood arteries, etc. The problem with the BIG PHARNA INDUSTRY IS : If you cure the patient, they will have no business! Plain and simple. Sane with the Dr’s. I’m very savy at 72 refuse to take any more BS from a lazy Dr who is burnt out with his practice. I have great Medicare, and a great supplemental. I can go wherever I want. I search Mayo Clinic as I know they are the best. My Hep C Treatment was through Loma Linda University in SO. CAL. The only reason I go to CA anymore. Burn and raised there and gut the heck out in 1998, relocated to Northern, NV. This whole mess was created by trying to help our “ Millennial Daughter” who became a moms, didn’t want to give up her life !!! REALLY? Then had another son 18 months later. Get and get Narcissistic hubby “ used and abused me”, had a mild Heart Attack the end of February 2024. 3 Dr’s told me, “your 70 and chasing 2 toddlers around, you’re going to kill yourself, get out if that house” lol ~ that I did. Now I’m the bad grandma ~ because both hubby and I worked 50 years, to retire and enjoy life. But become a babysitter. We’ll visit 3 times a year. My health is #1, and if I’m not proactive, I’m sunk ! You take care.

Jump to this post

Goodness Leenee, please take care of yourself! You are the important one. I know it’s difficult for others to understand our situation but she sounds selfish. Try to tell her if you can. Throw that doctor away and good luck with your new person. Become proactive. There are healthcare people out there that do care.

It’s interesting the hepatitis information I see here. I worked in the medical field and had all the vaccines so 2 of my tests are still reactive but rheumatologist says I’m ok for a Kevsara. Interesting as is West Nile testing which I have not had.
Karo

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@karo89135

Goodness Leenee, please take care of yourself! You are the important one. I know it’s difficult for others to understand our situation but she sounds selfish. Try to tell her if you can. Throw that doctor away and good luck with your new person. Become proactive. There are healthcare people out there that do care.

It’s interesting the hepatitis information I see here. I worked in the medical field and had all the vaccines so 2 of my tests are still reactive but rheumatologist says I’m ok for a Kevsara. Interesting as is West Nile testing which I have not had.
Karo

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Karo89135 - What is Keversa ?

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Hi leenee,
Kevzara is a recent drug approved for PMR.
Karo

REPLY
@leenee72

Karo89135 - What is Keversa ?

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Kevzara is a drug approved for poly myalgia rheumatica,
PMR as we refer to it.
Karo

REPLY
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