Connect
Kevzara side effects
Hello! I finally decided to try Kevzara, for my PMR. I’ve been trying to taper for almost 4 years, and can’t get below 4mg, without a lot of pain. In the last 18 months, the pain spread to my clavicle and my Rheumatologist told me it wasn’t part of PMR. I did some research and found it is, though not common, there have been studies and even a paper was written about it. This group also has a few, that have chimed in about it. I work out 5 days a week week, and when the clavicle pain is present, it makes it so much worse, but being able to workout is my sanity! I can be pain free on 5mg of prednisone, but since I have osteoporosis, my Rheumatologist said she really advised trying the Kevzara and also a bone builder. I should mention, when my PMR began, I was also diagnosed with ON (Occipital Neuralgia) as they usually come together. Now being on Kevzara, I noticed a week after 1st injection, my ON is flaring. Along with that, the clavicle pain is back with a vengeance! After I took my second injector pen, the next morning the clavicle pain was as severe as I have ever had. I asked my doctor about it being related, and she said no. Yet I was able to see on a list of possible side effects for Kevzara, that it can exacerbate side effects from pre-existing auto immune disorders? So my question is, has anyone else had this happen?
Thank you all, for your information and support!🦋
Like
Helpful
HugInterested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
Connect
@stonewheel The itching on your scalp is part of ON…I have this too! Are you on Gabapentin? That is the only thing that works for me, but I only take it, when I’m in a flare up.
@stonewheel I’m sorry you can’t get relief! I took Gabapentin when I finally was diagnosed with ON. It took everything away and all was great! I now only get occasional flares, and then I take the Gabapentin for a week or so, until it subsides.
I too have osteoarthritis and it’s worst in my right hand. I get corticosteroid injections once a year and it helps.
Because I’ve had osteoporosis for many years, I’m now being told I need to get off the prednisone, that I take daily for my Polymayalgia Rheumatica. That’s where the problems came in…Kevzara injections made my ON flare up and it’s causing a lot neck pain…right side for me, as that’s where mine started 4 years ago.
I have a video chat soon, with my Rheumatologist, I’m wondering if she’ll take me off the Kevzara. I also have a terrible sore throat with it, which I guess is a very common side effect of Kevzara.
-
Like -
Helpful -
Hug
3 Reactions@lori62yb
Gabapentin ... tegretol ... dilantin ... all should help with occipital neuralgia. These anticonvulsants act as nerve stabilizers to reduce the intensity of neuropathic pain. How well each medication works depends on the person. How well they are tolerated depends on the person too. My tolerance for all of them wasn't very good. Lyrica works reasonably well and doesn't seem to cause me any problems.
The entire left side of my face and head is numb ... it is amazing how much I can feel when my face is numb but everything I feel is an abnormal sensation and "not real."
I take Lyrica at bedtime and it helps me sleep. Otherwise my brain focuses on all the strange sensations in my face that I feel from the nerve damage to my trigeminal nerve, Lyrica helps with the peripheral neuralgia in my feet too. Lyrica (pregabalin) is a common medication used to quiet overactive nerve signals. When a nerve is damaged or something interferes with the nerve impulses, the brain can't decipher what it is. The nerve signals to my brain are scrambled in such a way that my brain can't interpret them.
It is funny because I can feel a breeze on the right side of my face but the left side on my face only tingles or has some other sensation. I have a crazy face but it looks normal ... no facial drooping or paralysis anywhere.
-
Like -
Helpful -
Hug
3 Reactions@lori62yb
Gabapentin makes me stupid. I get brain fog and my OCD becomes so bad that even I notice it.
I still have a lot of it left over from a prescription after a shoulder replacement one year ago. I, with caution, will try it for a couple of days to see what effect it has on my scalp.
Thank you and I’ll let you know how it does.
-
Like -
Helpful -
Hug
1 Reaction@stonewheel
I gave neurontin (generic name gabapentin) to patients by the boatload when I was a nurse working on a neurology/neurosurgery inpatient unit of a university hospital. I thought neurontin was relatively benign because no patient ever complained about it very much.
It was a different story when I took neurontin for trigeminal neuralgia. I felt like I had turned into a zombie. I wasn't even taking a very high dose relative to what I gave the patients.
All I could think about when I took neurontin was that I was digging my own grave and I could not get out of the hole I was in. I went to bed and literally slept 24 hours and stayed in bed for 36 hours. When I finally got out of bed ... I felt like I wasn't in the hole anymore.
I stopped taking all those anticonvulsants and never went back to the neurologist for about 15 years. I treated trigeminal neuralgia myself with prednisone because the neurologist said that prednisone wasn't a good treatment for trigeminal neuralgia.
After 15 years of treating myself with prednisone, I showed up in the emergency room because the electricity in my face wouldn't stop. An emergency room doctor gave me Fosphenytoin that was an IV infusion. At the time, it was the gold standard and the most proven IV agent used to immediately break a TN pain cycle. The caution that was given to me was that IV Fosphenytoin would only stop the TN electricity for a couple of days.
I got an emergency high-resolution MRI because I only had a CT-scan up until then and it was read as "normal." A high-resolution MRI is now the gold standard for diagnosing TN. It can identify a blood vessel (artery or vein) that might be compressing the trigeminal nerve at the root entry zone—the exact point where the nerve exits the brainstem. The MRI confirmed compression of my trigeminal nerve but not exactly what was causing the compression. In any case, I was in the operating room a couple of days later.
In retrospect ... I regret that I didn't go back to a neurologist sooner. I thought I could manage TN with prednisone but I was wrong. This is one reason why I feel like prednisone is never the solution to any problem.
I also learned that I probably shouldn't be self medicating and treating myself!
-
Like -
Helpful -
Hug
1 Reaction@dadcue I have taken low dose prednisone for 4 years now, for my PMR, but it hasn’t helped my ON. I had no idea it could help ON. I need to try to get in with my Headache Neurologist, I just can never be seen, when I’m in a flare and end up cancelling when I feel better. I’ve heard Botox injections can help, I’d be interested in trying .
@lori62yb
I doubt "low dose Prednisone" would do much for ON and a low dose of prednisone didn't help with trigeminal neuralgia (TN) either.
I sometimes tell a story about how the TN electrical shocks to my face were increasing in number to the point that I had to do something. I messaged my primary care doctor and told him that I was having 1,000 electric shocks to my face in one day. I said that I was thinking about taking 100 mg of Prednisone to see if that helped. The problem was --- I didn't have 100 mg of Prednisone in my stockpile of Prednisone to take for more than a couple of days.
My primary care doctor didn't seem at all concerned about me taking 100 mg of Prednisone and he was willing to write a prescription for it. We had a brief conversation about the electrical shocks to my face and he asked me if 100 mg of prednisone would be enough!
TN is sometimes called the worst pain known to humanity or the "suicide disease" back when nothing could be done to stop the pain. I had surgery to stop my TN pain.
https://www.aans.org/patients/conditions-treatments/trigeminal-neuralgia/
-------------------------
I will only say you might have to take a lot of prednisone for it to help ON. Eventually, prednisone didn't help TN either but prednisone did provide some temporary relief.