Polymyalgia Rheumatica Treatment - Starting To Reduce Prednisolone
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- Опубліковано 12 вер 2024
- After being diagnosed with polymyalgia rheumatica, the treatment now is to gradually reduce Prednisolone slowly over a period of a couple of years, to the lowest dose I can tolerate and stay pain free or as close to pain free as I can. In this video I share how that is going, as well as sharing some additional issues I have discovered I have with the discs in my neck. I also discuss having to advocate for yourself when GP's dont know enough about PMR and give the wrong advice, and how I have once again been experiencing issues with my mental health and transgender history getting in the ways of GP's clearly and correctly addressing my symptoms of PMR.
PMR website: pmrgca.org.uk/
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You’re doing so well darling and I can see the difference from February when you were struggling so much with your arms to now. Look at the floofball sleeping 😍xxxx
Thanks sweets
Ah yes, the 'coming off meds' rollercoaster - it's not a fun one is it. Well done for advocating for yourself! It's never fun, and it's even worse when you feel rough. Doctors who don't listen are incredibly frustrating, and medical gaslighting is so upsetting. Sending you massive hugs as always dear brother. Thank you for being so honest in your vids about your struggles xx
Thanks lovely. We need better seatbelts on these rollercoasters!
Omg Finn!! We have so much in common now! 😂 I just went thru PT so my spine surgeon can do a neck steroid injection, that I was so looking forward to! Insurance denied it. 😭
Hearing how they helped you, made me so disappointed yours have to stop and mine never start. 😅
I have severe spinal stenosis. Guess what? I saw a neurosurgeon too! And that was a nope for me too! We have been thru enough surgery to last a lifetime bro!
I am so glad you updated us. It pains me that you have to advocate so hard for you need, all of us!! Love you brother!!
Yeah Ive just spoken with the surgeon, he agrees with me that its just not bad enough with everything else going on, to risk surgery. Im going to have a nerve conductor test as I may have bilateral carpal tunnel too, and if I have, sorting that out may well help the pain and numbness in my hands, and itll be far easier to sort and manage than neck surgery!
Hey, just wanted you to know thank you for your videos. I care for someone with CFS/ME and your videos really help me to understand what they’re going through. I obviously see the struggle everyday but listening to you explain things I feel makes me a better carer. My mum also has Polymyalgia and wants to decrease her steroids because of the weight gain but seems to struggle when she puts them down so the doc has put her methotrexate up. Anyway, thanks again 😊
Hello hello! Welcome.to the FinnFam! I'm so glad you are finding my vlogs helpful, that makes me happy!
And your poor mum, I understand. I want off these steroids, they are awful but they also help so much so it's hard.
This latest drop has caused a flare for me that hasn't yet subsided so I might have to increase again.
I wish they'd hurry up and find another way to treat PMR!
Thanks for sharing your experiences with all these issues as always Finn, very educational for people like me who luckily don't have it and I'm sure it's helpful for people who do
Thanks so much for this lovely comment 🙏
Hi Finn, Thank you for making your videos. I am new to finding your channel. I find it wonderful to watch. I am very appreciative of the years of recording. Thank you
Hello and welcome to the FinnFam! Thank you so much for watching and for your lovely comment!
Hello there Finn!
Watching Pip sleep and dream was just adorable 😍
I have to say, one thing that really gets under my skin is when doctors find one thing, and they blame everything else on it without even giving me the benefit of the doubt that something else might be going on! I've been having heart problems bad enough to go to the ER (A&E I think you call it over there?) And my doctors did the heart attack blood tests on me, it wasn't that thankfully! Referred me to PT, but when I stand up, l almost pass out. My heart races over 100 sometimes when I'm trying to lay down and sleep, and it's been skipping beats/chest pain/making me very dizzy and dripping cold sweat. I told them I wasn't going to PT until they looked at my heart to see what was going on for sure.
I finally got in to get a stress test with some sort of dye injection to see how my heart is using my blood at the end of this month. I don't know what they'll find (or not find) but at least I get to finally see a cardiologist because this has been going on since January this year.
As for the pain, numbness and tingling in your fingers/hands, mine was carpal tunnel syndrome, they cut the tendons in my thumb trigger finger and in my wrists, and all the pain/tingling went away, but now I deal with mild to moderate weakness in them (no heavy dishes to wash, no thick eating utensils or heavy glasses/cups/mugs) which is way more bearable than the numbness and tingling! I don't know how POTS would play into recovery for that, but I really liked not having to do anything for at least 2 weeks after surgery until I started doing really mild hand stretching so my hands were still usable/didn't stiffen up.
Wow, that doctor was awful to you! I've had the same as well, "It must be the testosterone!" blah blah blah. "No, this was going on way before I started testosterone, that isn't the cause." They still put it in my notes! What the heck!?
They only put me on one week of prednisone at a time here in the states for my myofacial pain syndrome and autoimmune disease. No more than once a year. I would love to try it long term but it's not "acceptable" at my level of crappiness yet I guess 😳
Loved your prednisone "moon face" hehe
Love you all! 🫶🥰 Hugs from Minnesota as always!
just thought i would pop in Finn and wish both you and Chris well as ive not been on your channel for a while god bless my friend
Hello my friend it's lovely to find a message from you!
Ack. My friend has had most of these issues including spinal stenosis in the neck. The stenosis actually was causing a lot of other random issues like temperature spikes. Don't wait too long for surgery if the stenosis is growing fast. You want to go into the surgery in a strong state before it starts affecting too many systems. Sorry to add more to think about. Love you so much! 💖💖💖💖💖
Thanks so much lovely. I've just had my consultation, thankfully, it reads worse than it is. The fact that my pain has improved greatly since being on the steroids' is a god sign, so most of the pain might be PMR . The remaining hand pain and numbness/pins and needles could be caused by bilateral carpel tunnel, so im going to have a nerve conductor test done and see what that returns as that could be easier and less invasive t fix. Onwards and upwards! Loads of love to you!
@@FinnTheInfinncible That would be awesome if it's caused by fixable conditions! Praying for ease and grace in your healing 🙏💖💕✨
I totally agree with you sticking with the doctor who's actually knowledgeable! It's such a complex puzzle of medical conditions. I remember when my granddad was on prednisone for his lungs, it always gave him a very puffy face.
Yep. I'm sticking to this GP like glue! It's hard enough dealing with these conditions without having to fight with medical professionals too! The puffy red round face is not pleasant, I've just discovered that using a cold face mask helps a lot though!
❤ OMG just got to the bit your doctor wrote 🤦♀️
I know right!!!
❤
These autoimmune diseases/conditions are so mysterious!! But they are becoming more known now. Helps when there are little things that are niggling at you, and you see things like this. Great Pip can sleep soundly now when you are filming. Keep on swimming and plodding along with that infectious smile. Love yas. 🏳⚧🏳🌈
They are indeed mysterious! But yes lots of folks sharing about them helps a lot! Isn't Pip cute just sleeping through this! That's how boring l am to him now 🤣. Much love fella
@@FinnTheInfinncible 🤣🤣 Nah he clearly likes resting and recovering with you :)