Connect
Prednisone to Kevzara
I am 69 and very active. I loved to play golf but have been unable since onset of PmR. My PMR was diagnosed a year ago after suffering joint pain that started 1-2 weeks after Covid vaccination (booster). Sudden onset. 2 Rheumatologists later, I took Prednisone 20mg for a nasty sinus infection and pain went away, so PMR diagnosis. Started on 20 mg and have tried for a year to taper off. Unsuccessful. Now Dr says I have to get off Prednisone and wants me to try Kevzara. While waiting for Rx approval. I cut Prednisone to 15 and so far have had less pain. Plan to drop again and see what happens. I have a couple of questions for you guys. 1. Does anyone else suffer with bowel incontinence as well (sudden uncontrollable poops-). 2. Is Kevzara a good idea. Trying to retire and concerned about cost and duration. Would appreciate any input.
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
I just applied for financial help. Thanks again for the number.
-
Like -
Helpful -
Hug
1 ReactionI don't want to equate GBM with trigeminal neuralgia but I understand how any inflammation causes your wife to go into a coma and have more seizures. I had a small problem in the area of my brain stem. Classical trigeminal neuralgia is caused by pressure on the trigeminal nerve close to where it enters the brain stem. The brain stem is the lowest part of the brain that merges with the spinal cord. In most cases the pressure is caused by an artery or vein compressing the trigeminal nerve.
For many years before PMR was diagnosed, I took prednisone for trigeminal neuralgia in spite of a neurologist saying prednisone wasn't used to treat trigeminal neuralgia. I referred to trigeminal neuralgia pain as my "inflammation alarm" because the electricity was worse whenever my inflammation markers were too high. Eventually, I needed microvascular decompression (MVD) surgery.
https://www.neurosurgicalatlas.com/volumes/cranial-nerve-compression-syndromes/trigeminal-neuralgia/microvascular-decompression-for-trigeminal-neuralgia
I felt vindicated when the neurosurgeon said prednisone was probably helping the swelling and inflammation in the area where he did the MVD surgery.
I took a step by step approach to solving my problem of long term prednisone use. First I had bilateral knee replacements which helped me decrease my Prednisone dose.
After MVD surgery, I was able to decrease my prednisone dose some more. The facial electricity was one thing but the stress from it was something else. I was fearful of the wind and brushing my teeth. There was no fight or flight response. When my face was electrified, there was absolutely nothing I could do until the electricity stopped.
Just for context ... when I posted that message looking for alternatives to prednisone, the person who responded to me said she was in a coma for 6 months after having an adrenal crisis. She was the one that figured it all out. She said she didn't want me to suffer her fate.
When I started telling my doctors about adrenal insufficiency --- Actemra was offered to me.
-
Like -
Helpful -
Hug
1 ReactionWas the financial help approved? I think the process of getting financial help would be interesting to many people.
I have to fill out paperwork they will be sending in the mail. I got all my account numbers for their card. So it's a waiting game now. They were very nice to deal with.
-
Like -
Helpful -
Hug
1 ReactionI downloaded the application, printed it out, filled in my insurance info and took the form to my doctor's office to speed things up. The doctor faxed it in that day with chart notes. The approval came in less than a week. They were very nice people. All the ones I dealt with had southern accents and exuded that hospitality. Good PR for Big Pharma!
-
Like -
Helpful -
Hug
3 ReactionsI forgot to add that I asked if there was an income requirement for assistance. I was told that the program I was applying for is designed for people with incomes between 3 and 5 times the poverty level ( approx. 45K to 75K). If someone makes less than that they may be eligible for government help. I was not asked to provide proof of income.
-
Like -
Helpful -
Hug
1 ReactionI got approved for the no copay. I will start it tomorrow. How are you feeling? Thanks, again!
-
Like -
Helpful -
Hug
1 ReactionGreat! I've been on the Kevzara nearly a month. I was out all day in the mountains yesterday doing short hikes. Just a little shoulder soreness this morning. I'm doing all my yard work and enjoying the summer weather immensely. There are hurdles to get over. In 2 weeks I restart tapering off the prednisone and in 2 months I get labs done. So far, so good.
In the consent forms you signed to apply for the Co Pay card (section 5-6 on my form) you give permission for them to do a soft credit check I called them to ask why they didn’t want any income verification like Humira does. That is what I was told. I am currently waiting for approval and praying it comes through. Through my insurance it will cost me $5000 a year in co-pays.
That makes sense. I'm sure they can find out a lot about income through a credit check. I'm not on the co-pay assistance program since I have straight Medicare and part D for drugs. They have another program called patient assistance which is what I am on. The last time I checked the Kevzara would have cost around $4000 a year in copays through part D. I got a letter from my insurance provider for part D telling me that I was approved for the Kevzara so I guess they are paying part of it.