Anyone successfully treating PMR without Prednisone?

I have been on Actemra Infusion
For almost 1 yr. It has helped. No Predisone. Theresa

I was prescribed 15mg/day for my PMR. Even though I only took 10mg/day prednisone considering my 105LB body weight, I could not sleep for the first three days. So I had to reduced it to 5mg/day in order to get a few hours sleep every night. It took me 18 month to get out of prednisone. During those days, I always feel some discomfort, especially in the morning. I took some anti inflammatory supplements and always be mindful about what I eat.

I’m down to 12.5 prednisone and also methotrexate. Will soon be trying KEVZARA. We’ll see? Anyone try it to get off Prednisone and
Methotrexate?

I’m sorry that I don’t know how to edit my last comment. So, is anyone on KEVZARA and are there any issues trying to come off of it?

It was a long 12 year journey but now PMR is being treated without prednisone. I started out with Prednisone when PMR was first diagnosed. After 12 years of Prednisone with many relapses, I have been off Prednisone for almost 5 years. Prednisone was coupled with various conventional DMARDs but I still had relapses.

I am now being treated without Prednisone. I took a multifaceted approach to get off Prednisone. I had to realize that not all pain was PMR even though Prednisone helped me cope with a wide variety of pain.

First I decided to have my knees replaced because knee pain was originally a sports injury in high school. I was told my knees had advanced osteoarthritis before the age of 30.

A more difficult problem was trigeminal neuralgia. That face pain had nothing to do with GCA even though Prednisone did a decent job controlling the pain. I gave up on tegretal, gabapentin and all those other medications for nerve pain. The neurologist was right all along because Prednisone wasn't the best solution either. The trigeminal neuralgia pain became incapacitating to the extent that I couldn't even speak while my face was being electrocuted for hours at a time. After a couple of emergency room visits, a sophisticated MRI scan was warranted. The MRI scan revealed what might be causing the trigeminal neuralgia pain. It wasn't completely clear what the problem was but a neurosurgeon went in to take a look and found the problem. The neurosurgeon said prednisone was probably helping the swelling and inflammation in the area near my brain stem. The neurosurgeon was able to stop the electricity to my face.

After surgery for trigeminal neuralgia, I had another setback. It was the lower back pain that I had felt hundreds of times. That pain was always relieved with Prednisone except this time it included neurological changes that were hard to ignore. Another MRI revealed the cause was severe spinal stenosis. The spine surgeon wanted to do emergency spine surgery except for the 60 mg of Prednisone I took to relieve the pain. I didn't think I would have survived a lumbar fusion after having knee replacements and a craniotomy for trigeminal neuralgia in the same year.

The surgeries I had allowed me to reduce my Prednisone dose substantially but only down to 10 mg. That was when I contemplated taking prednisone for the rest of my life. Fortunately, I became virtual friends with a person on the internet who had an adrenal crisis. She had no reason to help me except for saying she was in a coma for 6 months and was "sent back." She wanted to spare me her fate with an adrenal crisis after I told her how long I had taken Prednisone. She said I needed to preserve whatever adrenal function I had left.

I mentioned things about adrenal insufficiency to my rheumatologist who didn't take it too seriously at first. However, at a subsequent visit an option was presented to me as my best chance of ever getting off Prednisone. The option was Actemra (tocilizumab) for relapsing and refractory PMR. Within a couple of months, I was down to 3 mg but I was ordered to remain 3 mg when my cortisol level was too low. I was then diagnosed with prednisone induced adrenal insufficiency and referred to an endocrinologist.

An endocrinologist helped me overcome adrenal insufficiency. Within one year, I was off Prednisone except I subsequently had a flare of uveitis which necessitated 60 mg of Prednisone again. A different biologic was used to prevent uveitis flares while Actemra was stopped.

Uveitis was soon in remission again except that PMR relapsed. My rheumatologist said it would be impossible to adequately treat everything so I was asked what I wanted to do. I wanted to be off Prednisone so Actemra was restarted.

I have now been successfully treated with Actemra with no Prednisone for almost 5 years with no relapses of PMR or anything else. Sorry for such a long story.

I’m starting kevzara Aug 6
I’m at 2mg pred . I would love to hear more about kevzara

I was diagnosed with PMR in Dec2020, tested negative for Covid, but then got sicker and had Covid about two weeks after initial symptoms. I took prednisone for Covid an immediately thought a miracle happened. I had to stay on prednisone, it was tapered gradually but after about 2.5years see rheumatologist again, he lowered prednisone to 5mg daily with Methotrexate 15mg per week. It didn't control my symptoms but it was better. I continued for another 18months. I tore a ligament in my foot, and had to walk with a moon boot for 6weeks. I decided to get a second opinion, as I constantly had knee and shoulder pain, as well as tenderness to pressure everywhere my tendons attached to bone. I realised that my tendons might become thinner due to the prednisone and so were my bone density. I was diagnosed with osteoporosis as well. Whilst on the immune supressing medications I had Herpes Zoster intensely and suffered from neuralgia, a month after that I contracted the Omicron variant of Covid again, after have 2 Covid vaccines in between, as well as a bacterial cyst in my uterus which had to be removed. I consulted the "new" rheumatologist who suspected AS, as I had lower back pain as well. A PET CT showed no AS. I asked the rheumatologist if I can stop the prednisone, but she said that I must take more MTX. I then asked if I can treat my symptoms only as I am not aware of permanent damage to joints because of PMR. So I suggested Vimovo 500/20 twice daily, with Amytryptaline 25mg at night, as well as metokarbamol 1500mg at night for the muscle spasms and 750mg in the morning. I also took calcium, vitD , Omega-3 and magnesium at night, with collagen in the hope that this recipe will help with bone density and tendon repair. I did quite well, but then woke up with a oinched nerve in my neck and had to go for neck surgery. Everybody tried to tell me that PMR does not last longer than two years, and I got the feeling that they suspected Fibromyalgia. The physician that I saw for my pre-surgery checkup suggested that I start takinf Duloxetine 60mg at night after surgery. 6weeks post surgery, no signs of bone forming were detected, so I was told to stop all anti-inflammatory drugs as it supresses bone repair and the natural healing process. Somebody then told me about the Anti-inflammatory diet. I downloaded that from Harvard's website as well as the book about Chronic inflammation. My physio also showed me a lot of stretching exercises as well as for strengthening my knee and leg muscles for the knee pain and improving balance. The time in bed after surgery left me very weak, and I fell whilst walking the dog, and hardly could get up myself. This was an eye opener and I started eating better and doing some exercises. In about 3 months I lost 15kg and looked and felt better. The diet definitely helps, but stress plays also a big role. I now subscribed to Autoimmune Reset course of Dr Nicola Schmitz. Implementing those also helped. Only problem was that I developed trigger fingers x 4, when I ate better, it subsided, there was a definite correlation with added sugar intake especially. I recently read about the BRIDGE-PMR trial where patients received Rituximab 1000mg and tapering prednisone, and 50% patients went into remussion even one year after administration. I had my infusion today, no side-effects so far. Will let you know how I am doing. I live in a country where Actemra is very expensive due to our weak currency, and Kevsara is not yet registered.
I also wat to add that I received a flu shot about 4 months ago, and that aggrevated my symptoms. It was definitely a flare of the PMR. I suspect that Covid and - vaccines as well as the other viral infections that I had caused a constant relapse of PMR. I have had no infections since stopping prednisone and MTX. Everyone's body react differently, but so far I am coping, one year after stopping the immune suppressive medication. I'll keep you posted!
M

I was diagnosed with PMR in Dec2020, tested negative for Covid, but then got sicker and had Covid about two weeks after initial symptoms. I took prednisone for Covid an immediately thought a miracle happened. I had to stay on prednisone, it was tapered gradually but after about 2.5years see rheumatologist again, he lowered prednisone to 5mg daily with Methotrexate 15mg per week. It didn't control my symptoms but it was better. I continued for another 18months. I tore a ligament in my foot, and had to walk with a moon boot for 6weeks. I decided to get a second opinion, as I constantly had knee and shoulder pain, as well as tenderness to pressure everywhere my tendons attached to bone. I realised that my tendons might become thinner due to the prednisone and so were my bone density. I was diagnosed with osteoporosis as well. Whilst on the immune supressing medications I had Herpes Zoster intensely and suffered from neuralgia, a month after that I contracted the Omicron variant of Covid again, after have 2 Covid vaccines in between, as well as a bacterial cyst in my uterus which had to be removed. I consulted the "new" rheumatologist who suspected AS, as I had lower back pain as well. A PET CT showed no AS. I asked the rheumatologist if I can stop the prednisone, but she said that I must take more MTX. I then asked if I can treat my symptoms only as I am not aware of permanent damage to joints because of PMR. So I suggested Vimovo 500/20 twice daily, with Amytryptaline 25mg at night, as well as metokarbamol 1500mg at night for the muscle spasms and 750mg in the morning. I also took calcium, vitD , Omega-3 and magnesium at night, with collagen in the hope that this recipe will help with bone density and tendon repair. I did quite well, but then woke up with a oinched nerve in my neck and had to go for neck surgery. Everybody tried to tell me that PMR does not last longer than two years, and I got the feeling that they suspected Fibromyalgia. The physician that I saw for my pre-surgery checkup suggested that I start takinf Duloxetine 60mg at night after surgery. 6weeks post surgery, no signs of bone forming were detected, so I was told to stop all anti-inflammatory drugs as it supresses bone repair and the natural healing process. Somebody then told me about the Anti-inflammatory diet. I downloaded that from Harvard's website as well as the book about Chronic inflammation. My physio also showed me a lot of stretching exercises as well as for strengthening my knee and leg muscles for the knee pain and improving balance. The time in bed after surgery left me very weak, and I fell whilst walking the dog, and hardly could get up myself. This was an eye opener and I started eating better and doing some exercises. In about 3 months I lost 15kg and looked and felt better. The diet definitely helps, but stress plays also a big role. I now subscribed to Autoimmune Reset course of Dr Nicola Schmitz. Implementing those also helped. Only problem was that I developed trigger fingers x 4, when I ate better, it subsided, there was a definite correlation with added sugar intake especially. I recently read about the BRIDGE-PMR trial where patients received Rituximab 1000mg and tapering prednisone, and 50% patients went into remussion even one year after administration. I had my infusion today, no side-effects so far. Will let you know how I am doing. I live in a country where Actemra is very expensive due to our weak currency, and Kevsara is not yet registered.
I also wat to add that I received a flu shot about 4 months ago, and that aggrevated my symptoms. It was definitely a flare of the PMR. I suspect that Covid and - vaccines as well as the other viral infections that I had caused a constant relapse of PMR. I have had no infections since stopping prednisone and MTX. Everyone's body react differently, but so far I am coping, one year after stopping the immune suppressive medication. I'll keep you posted!
M