Hi, I’m newly diagnosed with PMR and GCA. Live in Texas, USA. Learning to live the joy of 60 mg prednisone as of 12 days ago.
Never heard of this condition and in complete disarray for the first 10 days. I found this site after spending time on YouTube listening to medical conference presentations to understand the science.
In short, I extend my deepest appreciation for all of you. After the initial panic, when I get on this site, I now feel someone is holding my hand on this journey.
Best.
Exactly why we are here xxxxx
Hi and welcome.
When you feel strong enough - have a read through this - it’s actually not as bad as you think first off!
healthunlocked.com/pmrgcauk...
Thank you! This was very helpful to put it all in perspective. I read it when I woke up at 4am this morning. I’m thinking an afternoon nap is in my future.
Good idea - I think early days most find it a great help - even a necessity!
Definitely, I have to take a nap most afternoon’s just to recharge my battery.
Where are you located?
Austin.
I’m in the hill country with you- Hunt / Kerrville
KellyInTexas, I occasionally get to Fredericksburg. Perhaps we could enjoy a nice lunch together someday.
That would be great! I’m working in Fredericksburg off and on - and will be for the long haul.
I’m glad you have a good Rheumatoligist.
My brother in law is one of my GP’s- In Austin- so was going to offer him up if you needed anything auto immune.
He’s very good with all things cardiology - and does a deeper dive than most GP’s/ family medicine, -he pairs with Boston heart Lab.
Dr Richard Berry
631 West 38th - ( one block off Guadalupe.)
Can't beat an afternoon nap. 😴😴😴😴
Me and an ambassador are usually nocturnal so are around at silly oclock if you just need to talk.
Welcome. ❤️ This forum really is a lifeline!
Hi and welcome. It’s good to know that it feels like that to someone new. I have wondered if it feels a bit like jumping onto a moving train. I feel a bit like that when I’ve been away for a while but there are always people like DorsetLady and PMRPro to keep it grounded.
Welcome and don't be afraid. We've all been where you are and this site is a source of great advice and support. You really are not alone. There is always, always someone to advise. Sending you a big hug across the pond.
What a wonderful city to live in. So very sorry you have joined us but you will find the help you need here. I'm in Minnesota (now in Sweden) and cannot imagine you are not napping on those HOT Texas afternoons in summer already. The naps help and be sure and read about the Spoon Theory. *You can search it in the upper right hand box..(also for you stress check out my relaxation link listed on my profile page or you can also search relaxation.) Best of luck to you and Keep Austin Weird!
I felt just the same. Diagnosed 7 weeks ago.,So pleased I found this site by accident. I spend ages looking at the questions and replies. PMRpro is so helpful as well as everyone else. Can't wait to start my slow taper as recommended here. Might be a few weeks yet and fingers crossed it will go well
Poor you, 60mg prednisolone is horrible. I started on 60mg two years ago and couldn't sleep and felt like a bloated zombie who just couldn't get going in the morning.
Two years down the line I am now on 2mg and nearly back to where I was although perhaps more tired but I am two years older!
I just have some steroid related side effects, ostopaenia and steroid induced cataracts but could be lots worse.
Just stick in there and it will get better and this site is amazingly helpful.
Welcome to the best advice site you can find, we all have the same conditions, and you will get all the help you need. X
Hi. I got 'rid' of GCA after 18 months and now 'managing' PMR. I got a lot of advice from this forum and keep returning - it's like being part of a family.
Cheers - from New Zealand
Hello, rom another Texan diagnosed last December 12th. I started on 40mg. and now down to 4.5mg. There is hope and life after diagnosis. Have a wonderful week !!!!!!
Thank you, everyone. I’m especially cheered up with the stories of 12 and 18 month tapers. Sounds like heaven while I’m on this 60 mg dose. I’m seeing a rheumatologist soon, but he requires a biopsy prior to the visit, so hoping that gets scheduled in the next day or so. I think it’s a waste of time since I’ve been on 60 mg for 2 weeks now, but maybe he’s covering his bases. I really just want to speak with him about his experience with Actemra.
Hello from Illinois. You'll find this place a godsend as you'll have many questions going forward. As well as medical support there is much emotional support which can be lacking as we walk along on this journey ❤️
PMR 3years 8 months 6mg
Sort to hear that you have had to join the PMR orlwide community, only that you have gotten this terrible illness. I too was on 60 mg Prednison to commence my journey after being poisoned, and itbtriggered the auto immune desease. Life does get better, as we cope and the GPS are terrific as well as specialist who will.monitor you all the way. Good luck with it all.and the members of the group will support you when needed.
Welcome to you from from the midwest. This forum has made me laugh and tear up. It is my saving grace for all my questions. It's like a big hug especially on hard days. I too, started at 65 mg pred and never thought I would see the day that I would be tapered down to 7 mg. I started Actemra in March and the only side effect that I have experienced is tiredness. It is my understanding that it helps me to stay on a small dose without experiencing any yo-yo effects that you can have when you taper down to a smaller amount. My goal is 5 mg. At first, I thought is was too lofty of a goal, but now I see it on the horizon.
Regarding the Actemra, are you planning on administering it yourself? I thought I would never be able to do it, but truly, it is not as bad as you might think. The needle is small and thin, so that helps. Best of luck to you on this journey. You are never alone here.
Gratitude 
12 months on. A gratitude post
So much to learn
SYMPTOMS OF REDUCING STEROIDS? 
thank you so much for advice on methotexate.
