I have had ups and downs with prednisone in the 31/2 years since I started with PMR and then GCA. The doctor put me on Methotexrate about 2 years ago and tried to take me off of prednison entirely. It was a disaster, but she said that the Methotextrate was less damaging than prednisone. I had headaches, blurry vison, exhaustion and shakiness and felt it was the Methotextrate (although I have since found out how much stress can affect both these diseases and have been under tremendous family stresses). This summer my rheumy started me on Actemra and took me off of the methotextrate and increased by prednisone to 10mg. I can't say that I feel much better, but for the first time in 3 1/2 years, my tests are coming back normal. I am hesitating on the Actemra because it was just approved by the FDA for use for GCA and there hasn't been much testing done. Maybe I don't feel much better yet, but it is good to know that my sediment rate is normal finally.
Actemra Use: I have had ups and downs with... - PMRGCAuk
Actemra Use
Hello, more expert opinion will come soon, but I have to say I love your dog.
In an odd way, at least the suffering you thought was Methotrexate wasn't and it wasn't a waste of feeling better time, if you get my warped reasoning. Actemra has been used a lot for other conditions, so although it is a relatively new drug, it isn't an unknown.
Actemra has been in use for rheumatoid arthritis for about 10 years altogether including the clinical trials - it isn't a new drug, just new to GCA.
I'm appalled at the number of doctor who put their patients on methotrexate believing it REPLACES pred. It doesn't. It MAY help them manage on a lower dose of pred but that is all - and it isn't guaranteed.
PRO I didn’t see your reply so I wrote my own lengthy saying something very similar. It does make me very angry that doctors do this to their patients. I am now back in Florida. Took my drugs with me and managed to freeze the Actemra. So today Fed Ex is coming to pick up the old and bring new. My rheumatologist is in New Jersey. The trip down stressful and I am scheduled for removal of BCC on my nose. The scarring with the steroids will be very bad. Have had cancer removed from my chest before. Will just add that to the hair loss, the bruising, skin tags and my various other skin issues which has totally changed the shape of my face I forgot the moon face. But I am still here to talk about it and absolutely feeling better. My rheumatologist bless him is treating me long distance by phone and text and I will find someone down here just for the hell of it. My blood tests will go Back to New Jersey.
So happy to have you to report to and to lean on. I plan on being here for a while since I just fixed up a condo on a lake and renovated all of it at the Jersey shore.
The more who say it the merrier - one day they'll hear and listen!!
Sorry to hear of your stressful trip. Hope you find a rheumy you like in Florida. I will be leaving for Florida next week and will be carrying Actemra injectables in my special carry-on bag for the first time....the bag that holds the two frozen gel packs. How did your Actemra happen to freeze on your trip down to Florida? I am not sure how I would check on the syringes that are in individual boxes. Any information appreciated😊
You could't have a better mate than in your photo. Wonderful. All the best with your pains.
Whew you have been on quite a journey. I am always pondering, is this me ? Or the drugs? Or PMR? Or GCA?
I am interested in your experiences with Actemra, and anyone else's out there. I suspect it might be where I am headed.
I am glad your tests are coming back normal but you need to feel the wellness or it's just numbers. Let's hope you do when your body settles down to the new regime.
I sincerely hope that there has been a let up in family stress. It was that , that put me here in the first place I think - dreadful!
What a nice dog! They are with you no matter what!
I guess my body has settled down to the new regime, but I am facing the fact that with PMR and GCA at the age of 70,that all day tiredness is a fact of life no matter which of the 3 medicines I am on. i am now planning my life around it and have changed my volunteering activities to late afternoon and evening.
Actemra was approved in 2011: See history: drugs.com/history/actemra.html
When I was in my thirties and forties how long a drug had been used and tested and what the long term effect might be was very important to me. Now at 76 long term isn't so long term anymore.
Dear dawnsgca,
I am starting Actemra for GCA for the third time. I have had a struggle with some GI problems while on the Actemra. My rheumatologist and I were concerned these symptoms were caused or increased by the Actemra. So, I returned to high doses of Prednisone because of 3 GCA flares. I am now trying the Actemra infusions as my rheumatologist says, “The Prednisone is now causing more harm than good.” I will have my second monthly infusion this Friday. Already, my ESR is back in the normal range for the first time in a year. Time will tell. I am so hoping this will help you.
I love your dog. What a beautiful face. We have two dogs. They are my greatest comfort during these difficult days. I pray you will be feeling better soon.
We have just survived the severe wildfires here in Sonoma, CA. Our home is safe, but so many friends and others lost their homes. It has been a very tragic time in our part of the world.
Take good care of yourself. ❤️😍🦋
So sorry to hear of your troubles. i have a former student who lives in San Obesto or something like that. i have not heard from her. you were blessed. have you been on infusions all 3 times? if not, is there a difference?
Thank you for very kind words. We are settled back in our home. The aftermath of the fires continues. Life is very difficult for those who lost their homes in the fires.
I have only the Actemra infusions. Noticed you are taking the injections. I take them once a month, so have only had two so far in series. Hoping to be able to continue with the infusions.
Have a wonderful visit with your son and family.
My personal opinion after being on prednisone for a total of 5 1/2years 3 for.PMR and then another 2 1/2 for GCA and at least nine rheumatologist is that some of them know nothing. Yours taking you off prednisone and putting you on methotrexate seems to be one of those that know nothing. Methotrexate has not proven to help PMR or GCA. And it infuriates me that doctors don’t read. I started Actemta 10 weeks ago and the difference is amazing my CRP and ESR are normal. My body is starting to feel better but lowering the prednisones does give you pain and fatigue and I can now feel my osteoarthritis on 10 mg. I am writing because I feel very bad that you went through this horrible withdrawal from the steroids I did too at some point with a very important doctor who thought he was doing the right thing. I hope you do better on the new drug along with the prednisone and you might do even better with a new rheumatologist. Be well.
thank you for all of the encouraging comments. i now have been on Actemra injections for 5 months. I don't have another blood test scheduled until January. i feel exactly the same as when I wrote last. As long as I take an hour nap daily, life is more manageable. In the evening I have no symptoms at all, so i do much of my housework at night. i am visiting my son in Virginia now, where that lovely dog is laying on my lap making it difficult to type this. i visit here for more than a month at a time because my daughter-in-law has chronic illness. the insurance company is good about FED-EXing the Actemra here.
hi..your name was first in line as far as closeness to where i live..first, your dog is adorable...i live in elmira ny and was diagnosed with PMR dec 11 2014...ive been on prendisone since..im currently on twelve mg..when i tapered to six mg a few months ago i went into adrenal crisis and had to do a 60 mg taper..my SED rate was 112...ive had both hips replaced since PMR with no issues of infection but healing seems to be rather slow but im six weeks post-op now and starting to feel some pain relief..on oct 31 i had my second hip surgery..i thought i would be home in less than two days like the other hip but my dr wanted to keep me one more night so my daughter went to my home to check on my cat..he was curled up on the living room floor and was gone...when my daughter came to the hospital to tell me i fell apart with grief..ive buried a son years ago and lost my husband of 38 years a year and a half ago and my cat was a very large part of my life.i loved him so much..his name was little ed...i didnt think i would ever stop crying..my mom was so worried about me and i think losing my cat slowed my hip recovery..it was one of the worst heartaches i ever experienced but i had people from Pa to NC to AZ praying for me and im feeling better..little ed had a wonderful life with me and he didnt suffer and im grateful for that..
on a better note, i gained so much weight from the prednisone..i went all the way to 298 lbs..ive lost 29 lbs and plan on losing another fifty pounds...i tell everyone its a slow weight loss because my body runs on turtle juice...im not very active right now but my goal is to walk without any assistive walker or cane..i just want to walk like a normal 66 year old..i know its going to happen although i have to be patient with the progress..i have faith in Christ and i know he helps me in everything i do...not knowing if you are a Christian or not i will just leave it alone and not tell how wonderful God has been to me..
i have tried every medication available and cant tolerate any of them..i just have to take the prednisone and try to taper it back down again...the last three years have been hard but here i am..still going forward one day at a time..
i did adopt a cat from the shelter a few days ago because i didnt like living alone..his name was harry but i changed it to Teddy..we r getting used to each other and he is very sweet..hes about one and loves to play, eat and sleep..exactly what cats do..he isnt a replacement..just an addition to this chapter in my life...
i think the hardest part of PMR is how quickly i get tired...i hate the fatigue and then there is the pain in shoulders and my back..everything i do is so hard to do and takes me so long to accomplish..but i just rest and keep going..i hope you are doing better then when first diagnosed..this crappy disease has a way of changing our whole lifestyle..a lot of adjustments along the way for sure..
well this is way too long i know so ill close...i hope you are having a good day...we do get some good days here and there..lol..maybe you will feel like writing back since we share PMR and live less than 100 miles apart....thanks for reading..sharon and teddy..elmira ny
Hi Sharon,
I don't get on the site too often because of the illnesses (PMR nd GCA) and lack of time for everything. So sorry that I have not gotten back to you sooner. I live near Batavia. My aunt lived in Elmira and my sister and I used to go visit her. Also my sister's best friend not lives there. When you get off the expressway, there is a big hill to the left and you take a bridge to it. She lives up that road.
The tired part of the disease is the worst part for me. I retired in 2012 and was active until 2014 when I got PMR. I have had to take naps since then to make it through the day. It has gotten worse after I got GCA, but I don't know if that is from the GCA, almost 4 years of prednisone, or just aging. About 1 - 11/2 hours before my nap, I start getting a headache, blurry vision, shakiness, sometimes stomach aches and sweating. Then after my nap it takes about an hour before I feel like doing anything. It really takes a huge chunk from my day. I am trying hard now to make a realistic schedule, admitting to myself, and others, that I must take a nap. I have found the first hour of the day I have energy to do housework and in the evenings, I basically feel like the "old me" and do more housework, sew, or read, or even things where I have to think.
I think that, for me anyway, admitting that this is now my everyday existance is helping. I used to fight it for many reasons. One of the reasons is because I don't "look sick", so I was always afraid people would think that I was just being lazy. This website has helped a lot.
Oh, and the dog is my son's. He lives in Virginia and I spend a lot of time there because is wife is chronically ill, and I go to help take care of the children and support my son. I have a lovely little cat named Maggie Mae. I have had her a little less than a year and she was a bit wild when I adopted her. She is getting to be a love now. Before her, I had the love of my life, a cat named Lexie who I had to put down because of heart disease. Oh, and in case you couldn't tell, my name is Dawn.
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