I keep relapsing when I try to get off prednisone

Thanks for the video! Very helpful and more information that I get from any of my three doctors☹️

I liked the video, This doctor raised more questions about statin induced myopathy than he answered.

I told my rheumatologist that I didn't think atorvastatin was causing any problems. Yes ... my CK level was elevated but is that conclusive evidence? When my last lipid panel and CK level were checked after 2 months of Zetia, everything looked good to me. I'm going to suggest they stop checking those labs and the problem is solved.

I don't care if I take Zetia or not. However, I must confess that I liked it when I wasn't taking anything for my cholesterol level. Since I tapered off prednisone, five medication dominoes have fallen. I go into my doctor's visits wondering what medication we will stop next. I forgot---my ophthalmologist told me to stop cosopt eye drops for my intraocular pressures. That makes six medications that have been discontinued

I have been on prednisone 4 years and at 6 mgs. Did you legs get weak from it. I am now walking with a cane. I too have osteoarthritis and will not take those meds they want to give me. I have enough issues already.
I will look up you toe exercises. I do try things like that but my legs are very weak.
Good luck, and thx 🤗

@sharon44r I have PMR and GCA as well as OA in my knees and shoulders. I get hyaluronic acid (the Jell advertised on TV) injections in my knees twice a year. Medicare covers this. I also get them in my shoulders as needed - 8-10 months apart. The shoulder injections are private pay because the US is the only country in the world that the hyaluronic acid is not approved for shoulders. Those are pricy but it avoids prednisone injections which insurance will cover.

@tuckerp I just got a helpful comment to my post from 2024, which prompted this conversation to come up. I ended up stopping my blood pressure medication and my statins because both were so incredibly under control and I wanted to see what I could do on my own without them. Well, I spent six months eating nothing I shouldn’t, drinking nothing that I shouldn’t, exercising and losing 30 pounds. I was definitely overweight but not extremely and I now weigh 145 pounds. The doctor thought for sure my numbers were gonna come back great. They did not. They skyrocketed right back to where they were before any medications were started. So back on 50 mg of Losartan and 5 mg of rosuvastatin I went. When I did my next blood panel six months later, all was back under control. I tried and I failed. Genetics clearly plays a big part in these numbers. I will be 75 soon and have resigned myself to these two medications. Now I’m moving on to other issues. Grade C esophagitis was just diagnosed. It just never ends. Good luck to all who read this!🙏🏻❤️

@sharon44r My legs are definitely weak from over a year on Prednisone for GCA. I also have neuropathy going up to my knees. I walk as much as I can, constantly move my toes while sitting but mine is not getting any better. Maybe I just need more time.

@carolinlv We are all different. Losartan would make me a little light headed. I switched to lisinopril and for the first 6 months gave me a slight dry cough. That has finally cleared up. I had my LPa checked and mine was 150. That apparently is the genetic test. I cannot take a statin. Within 3 days muscles aches and issues with my gut. I have tried everything that ends in a tin. Most everything else doesnt work. Dr put me on Repatha. A twice monthly injection. My cholesterol went from over 300 to 140. My LDL went from over 200 to 80. Dr wants me to try to get to 70. I have had no reaction to the injections. I just found out I have a hiatal hernia. I am taking 40mg famotadine that works a little. The 40mg are prescription . I take one at bedtime.

Yesterday I finished my taper, so today is the first day without it. I am delighted. I am anxious that my pmr will not like it and return. The prednisone was a horrible experience and negatively impacted my life for 6 months. I had all the side affects the most bothersome is the significant fatigue and brain fog. I pray that pmr stays away.

Has your rheumatologist also prescribed Methotrexate? From my understanding it is the "best" first "remedy" after prednisone. I was prescribed Methotrexate a month ago and was told that it could take some time to work.
I was taking both hydroxychoroquin and methotrexate, but developed large itchy rashes across my body. Was told to stop both, was given another 4 weeks of tapering dosage of prednisone. After one week and a doctor's appointment, Doc wanted to see if I was allergic to the methotrexate. I was not, but was off prednisone for 5 days with the methotrexate. Minimal pain and stiffness. BUT day 6, stiffness and pain returned, in ankles, elbows, wrists and right knee. Decided to continue the prednisone taper. Seems like I read that methotrexate can take up to 8-12 weeks to fully "kick in." Is this about right? I'm hoping that when I finish this latest taper (my doc has me doing 20mg first week, 15, 10 and 5mg) the methotrexate will have had a chance to work full force.

@tuckerp I had an endoscopy with bravo capsule insertion four days ago and will get the results in a few weeks. I found out my esophagitis went from grade A to grade C over the last 9 months. I was taking famotidine for six months and then changed to lansoprazole 15 mg twice a day for almost 3 months. All of these supposed helpers for Gerd and acid did nothing. I’m so distressed. I hope the famotidine works for you. I have a lot of trouble with acid reflux meds as most are not tolerated by my stomach. I have silent Gerd, but the acid from that causes stomach pain daily. I guess that’s not normal. I have tried pantoprazole, omeprazole, prescription famotidine (only one generic store brand doesn’t make me sick🤷‍♀️) and even Voquezna. I couldn’t handle any of those so hoping my doctor will have some fabulous idea that doesn’t involve surgery. Good luck to you!