Today I got a definitive diagnosis, RA not PMR. I would love to find the community for RA now and I was uncertain how to find it! Also finding this community and reading here daily as well as posting my questions has contributed to keeping my sanity intact on this journey! Thank you all for responding to my questions and to all of you that share your stories.
Stephanie
It's NRAS
You don't HAVE to leave - some things about living with RA and PMR are the same and there are people here with an inflammatory arthritis.
Maybe either of these - but there are others, just tap my hub above and then tap “my communities” - changes to “find a community” - type in RA , maybe in full to get all -
Everyone will agree that you are welcome to stay. There are a lot of crossovers with the two conditions. Good luck ( I won’t repeat how to get to the RA site) I hope they are as nice as we are.
Hello dear! I also started with PMR, but at 51 at the time, the doctors would not accept PMR as diagnosis. I test negative for RA antibodies, so on my third doctor and after three years, I got diagnosed with Seronegative RA. I absolutely don’t have any pain in hands or feet. Just a little on my knees and hips, very PMR like.... so four months ago I started Biologics treatment with Humira ... against my will, LOL!!! I think I’m better but I also have Fibromyalgia so it’s very hard to differentiate between them most of the time. Hugs ! Hope you feel better!PS... are you from Salt Lake City??? I just moved from Florida three weeks ago to SLC and am loving it!!! ❤️❤️❤️
Thank you for responding! All my pain is shoulders and a little in my hips and knees, nothing in my hands or feet. I have what I call my “costochondroitis” pain that arrived with my shoulder pain. For me the pain at night and the stiffness was about to destroy me. My doctor thought PMR but only put me on a “trial” period of prednisone 20 mg per day. My life was restored on that trial period, within 3 hours of 20mg of prednisone I was 75% better! Then she had me stop it!!! I thought I was going to die! I’m not sure how I kept going until my appointment. I could barely move, stiffness and pain, but I muscled through and she ordered blood work, positive for Rheumatoid Factor, ANA positive. Now I’m on a higher dose of prednisone tapering down to a daily 10mg until I get into see the Rheumatologist. My doctor says I’m textbook RA at age 58. I started on 80mg of prednisone 2 days ago, I’ll do 80, 70, 60 etc then stay at 10 til RA doctor. She said they will want to use Humira or a biologic. I’m a little shocked and a tiny bit scared but it could be worse. I’m feeling 100% healed and comfortable on this prednisone, but I know that’s temporary. My Sed Rate was 41 so I think she was worried about me. I’m hopeful for the Humira or something to give me my life back! I live in Ohio now and thankfully work from home or I would have not been at work, couldn’t even get dressed for a while just soft clothes and dirty hair 😞but I’m hopeful now! I told my husband within the next 2 years we are relocating to Florida full time. I can’t take the cold anymore!!! Sorry this was so long, I just poured it out there! I’m curious how the Humira is for you and if it helps? With just my shoulders and neck involved and no small joints I was just shocked about the RA. Thanks again for responding.Stephanie
Hi! It’s funny how similar cases we have... for me Prednisone also was a miracle drug, but I started at 15 mg three and a half years ago and today I’m in 2 mg. I was also shocked with RA diagnosis, it’s like I told my Cardiologist, devastating. Apart from the disease per se, all the treatments and avoidances that we have to endure... you know, it’s life changing for sure, I would, to be honest, prefer that it would just be PMR, since there’s a light at the end of the tunnel, in theory... hehe! My SED rate is also lower 40s, with Humira the markers went down to close to normal, which in my book, is my diagnosis confirmation. I also have some bouts of costochondritis from time to time mostly depending on a bad move or something. I’m 55 and I honestly couldn’t be working, mostly because of my fatigue. As I mentioned, I have Fibromyalgia and I won the double wham of pain ! Lol! I decided to start painting 6 years ago, and that’s my purpose in life, I found a way to identify myself with the world, but in my own terms. Thank goodness for my husband, who understands what I’ve been through. He was offered a VERY good job in SLC, so we jumped on and here we are. It’s different for sure and the people are very nice. I have lived in Atlanta, Iowa, Maryland, FL and now Utah! Florida to me is extremely hot. I feel much much better in cold weather, strange I am! I lived around Palm Beach Gardens area, and it is very nice and safe. You should check it up when you move. So nice talking to you! Take care and feel better!
Let’s keep in touch so we can share our treatments as I’m curious to see how is gonna be your drs approach.
Hugs xo🌹
Interesting about your Humira and your markers to near normal! I’m optimistic that they will choose the right medication to start with. I am lucky that I don’t suffer from fibromyalgia or any other afflictions at the moment because working keeps me sane for now! I’m glad you found painting. I’m a secret writer so if my work becomes too much at any point I would love to give writing a bigger place. My friends tell me that the story of my childhood would be on the best seller list, but that’s another story! Curious about your costochondroitis too? I think it must be related to the RA in some regard. The pain from that costochondroitis can be miserable at times and I dread having a bout. My husband and I recently lived in Phoenix for 5 years and I loved the heat! I didn’t have the RA then but I jogged outside daily and never got sick! Miss that. Thank you again for your posts here to me and take care.Stephanie
Very interesting that you mentioned your childhood story... I also have a devastating childhood story. Lost two little brothers of the same illness when I was 9 and 17. That had an everlasting impact in my life. It could be another one of your books💓 Actually, I started writing a few years ago but it was during an “episode “ so I haven’t continued. I suffer episodes of intense fear of illness. Strangely I don’t fear RA or Fibro!? The human brain works in strange ways, I guess. Well, take care you too and let me know of your medication protocols! 🌹
PS, precisely today, I had the chest pain. I was in Costco and I usually take Motrin but Costco doesn’t carry it so I bought Aleve. I took two pills in the car and I am surprised that it has helped me tremendously with this pain. Thought I could share it with you, in case you haven’t tried Aleve.
Thank you so much for sharing your journey. Whenever I start to feel a bit sorry for myself I remind myself of folks with much bigger challenges. Thank you again for the information! Stephanie
So happy with this community!
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