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Post by Delta Dawn on Dec 11, 2018 18:22:58 GMT
Does anyone have this? How bad is it? My dad’s GP suspects he has it. The only treatment for it seems to be prednisone and NSAIDS. How do you treat it? He is in a lot of pain and every second word is “oh sh!t” and he limps along. Thoughts?
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miyooper2b
Full Member
Posts: 330
Location: Central Indiana
Jun 27, 2014 15:38:05 GMT
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Post by miyooper2b on Dec 11, 2018 21:45:27 GMT
Yes, I have it. I was diagnosed with it about a year ago. And you are correct the only treatment is prednisone. My doctor told me not to take NSAIDS but I can take regular aspirin. I am currently on 9mg per day. I started at 20mg per day and have slowly reduced. Usually after being on prednisone for a couple of days people feel much, much better. If he doesn't he may need to take the dose up until the pain is under control. There are a couple of excellent PMR forums at Healthunlocked.com and Patient.info with some very knowledgeable people. I've gotten most of my information from those forums.
People with PMR need to be prepared for a long journey. Most are on steroids for 4 - 5 years before it goes into remission. Some are on steroids for life. Flares are common and you have to start all over with the meds.
One more thing, if he starts to get headaches and jaw pain get him to a doctor or ER ASAP. This could be a sign of Giant Cell Arteritis (GCA). GCA can cause blindness if not treated right away. GCA and PMR commonly happen together so watch for it.
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Post by 5peanutsnana on Dec 11, 2018 21:52:33 GMT
My mom, who is 92, has been dealing with it for about 2 years. It's frequent blood tests and adjusting prednisone accordingly.
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Post by Delta Dawn on Dec 11, 2018 22:10:18 GMT
Yes, I have it. I was diagnosed with it about a year ago. And you are correct the only treatment is prednisone. My doctor told me not to take NSAIDS but I can take regular aspirin. I am currently on 9mg per day. I started at 20mg per day and have slowly reduced. Usually after being on prednisone for a couple of days people feel much, much better. If he doesn't he may need to take the dose up until the pain is under control. There are a couple of excellent PMR forums at Healthunlocked.com and Patient.info with some very knowledgeable people. I've gotten most of my information from those forums. People with PMR need to be prepared for a long journey. Most are on steroids for 4 - 5 years before it goes into remission. Some are on steroids for life. Flares are common and you have to start all over with the meds. One more thing, if he starts to get headaches and jaw pain get him to a doctor or ER ASAP. This could be a sign of Giant Cell Arteritis (GCA). GCA can cause blindness if not treated right away. GCA and PMR commonly happen together so watch for it. Thank you this is way more helpful information than I was getting elsewhere!!! It’s going to suck I take it. We are waiting for his doctor to call this afternoon hopefully. Are you able to walk fairly well? His pain is in his thighs and hips. He is limping a lot. And every second word is “oh sh!t” so he’s in a lot of pain. I will tell him what you told me after we get a diagnosis and take it from there. Thank you so much! ❤️❤️❤️
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miyooper2b
Full Member
Posts: 330
Location: Central Indiana
Jun 27, 2014 15:38:05 GMT
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Post by miyooper2b on Dec 11, 2018 22:32:33 GMT
I was in a lot of pain in the beginning and my shoulders and hips were affected the most. I could hardly bend over or raise my arms above shoulder level until the steroids kicked in. My hubby had to help me in and out bed and chairs. If I dropped something, oh well, too bad, it stayed on the floor. PMR affects everyone differently. Some have more pain in different joints than others. I was able to do most of my daily routine within a week of starting the steroids. Now I find the fatigue the worst part of PMR. If your dad has PMR the steroids should start with help with 24 - 48 hours.
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Post by Delta Dawn on Dec 12, 2018 0:46:57 GMT
I was in a lot of pain in the beginning and my shoulders and hips were affected the most. I could hardly bend over or raise my arms above shoulder level until the steroids kicked in. My hubby had to help me in and out bed and chairs. If I dropped something, oh well, too bad, it stayed on the floor. PMR affects everyone differently. Some have more pain in different joints than others. I was able to do most of my daily routine within a week of starting the steroids. Now I find the fatigue the worst part of PMR. If your dad has PMR the steroids should start with help with 24 - 48 hours. That is pretty quick turnaround for the steroids to work. He is using Naprosyn which is Rx strength naproxen that has been buffered. It’s not doing anything but I suspect he will need the steroids regardless. He has seen every doctor and physio in town to fix this. He is getting cortisone shots in his legs next week. The physiatrist wants to try that as well. I am wanting him to advocate for himself better. He doesn’t want me involved in his healthcare other than to tell me what he is doing. We still haven’t heard from his GP. I am holding my breath we hear tonight. His doctor will talk to me so that’s good. He could call in an Rx for pred and I could go get it for him tonight for first thing tomorrow. How much pred did you take initially? Something decent like 50 mg and then tapered down to maintenance?
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Post by mrsp on Dec 12, 2018 0:49:36 GMT
Talk about timing—my dad just told me his brother has been diagnosed with PMR and mentioned it to my dad because my dad is having problems with his shoulders (frozen shoulder). Does anyone know if PMR runs in families? My dad is going to talk to his doctor next week about the blood test.
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Post by alsomsknit on Dec 12, 2018 1:05:07 GMT
Be careful with the NSAIDs. I damaged my liver with Tylenol when first dealing with the Fibro pain.
Advil works on the kidneys.
Chronic pain SUCKS!
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Post by Delta Dawn on Dec 12, 2018 1:10:17 GMT
Talk about timing—my dad just told me his brother has been diagnosed with PMR and mentioned it to my dad because my dad is having problems with his shoulders (frozen shoulder). Does anyone know if PMR runs in families? My dad is going to talk to his doctor next week about the blood test. This special blood test is particularly indicative of the condition. I want him to check his test results online as we can do that and are encouraged to do so. He is not as worried as I am apparently. He is playing his anti-dementia game right now.
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Post by jemmls4 on Dec 12, 2018 1:19:10 GMT
I’d never heard of this before. I’m glad I clicked on this link and read about this. A lot of the symptoms and sounds like what I’ve been dealing with for the last six weeks. I have a really messed up immune system and I thought I just was having a cycle of bad arthritis, but it’s lasted for a long time.
I kind of have been putting off making an appointment with my rheumatologist since he’s 50 miles away. I need to make a call in the morning.
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Post by compeateropeator on Dec 12, 2018 1:28:20 GMT
My father had this. They say it can sometimes take a couple of years to kick. My father was on Prednisone. Luckily he was feeling better in 6 to 8 months and was off the prednisone and pretty much symptom free within one year.
My Dad has a pretty high tolerance to pain and this kicked his butt. We had never really heard of it when he was first diagnosed, but since then we have found quite a few people who have had it or knew someone that was diagnosed with it...a surprising number of people.
Good Luck to your father, I wish him the best and hope that he is feeling better soon.
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