Hello all! It’s been a while since I’ve written so I thought I’d say hello and wish everyone the happiest of holidays.
My beloved St. Bernard Wolfgang, passed in May of this year. A little more than a month ago we rescued Samson, pictured here waiting for his favorite blanket to come out of the dryer. He’s just a total zen puppy and the biggest lovey baby ever. I don’t care how badly I hurt, I always feel better if I am cuddled up to him.
After my reaction to Actemra I went off everything except prednisone and I am happy to report I’m still doing really well. I’m down to 10 on the prednisone which is the lowest I’ve been in quite sometime. It took a long time to get from 15 to 10 but the wisdom of going slow proved correct as usual and paid off. My labs look good. My ESR is 7 and my red and white counts are finally normal. The only bad lab is a CRP of 28 which admittedly frightens me. I’m still very stiff and sore in the mornings but it gets better. The temps have been sub zero with the wind chill factor so that doesn’t help but it’s only temporary thankfully 😊
Again, wishing every one a happy and healthy new year!
Love to all ~
Written by
Nitrobunny
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But it does lighten things up. Think I’ll try and avoid Actermera. Pred as been nothing but a friend to me.
But coming off a booger. Your dog looks gorgeous.
All the best and happy Christmas
🍀🍀🍀🍀🌹🌹🌹👻
How lovely for you to have a lovely bundle of fur in the shape of Samson to cuddle up to. You have obviously had more than most to contend with on your PMR journey but you appear to be on the right track now and wish you every success in the future and hope that 2018 is much better for you'.
One thing you may help me with: the picture of Samson looks great, I uploaded a picture to my profile but it must have come out much bigger than intended as it only shows the tops of the heads and I can't find how to delete it. Any help appreciated.
Seasons Greetings to all and a Happy and Healthy New Year. 😀😀
Admittedly I’m no ace in the photo/profile area. I know I had better luck on my laptop versus trying to do things on my phone or with the app and I made the photo smaller to get the website to show the entire photo. Perhaps resize it and give it a go. Sorry I can’t be of more help.
Thank you Nitrobunny. I will try on my PC. I am usually quite savvy with uploading/downloading etc but I can't even delete this picture to reload . I may have to put it as a separate post to get more suggestions.
Good for you, rescuing Samson❣️❣️ He gives you love and you love him back.
In June, I adopted two 11 year old doxies. Their funny dog antics crack me up, and I love to have them cuddle on my lap whenever i sit down. One is here now😊
Hello Nitrobunny, long time no see. So sorry you lost your dear old friend Wolfgang. I am glad the universe provided you and Samson with each other. What a dear old baby waiting for his blanket.
You do seem to be doing remarkably well. More points in favour of keeping the toxins simple.
Wishing you a happy season and a new year that goes completely the way you want it too.
Oh my what a gorgeous boy is Samson and how wonderful you rescued him. Are you training him to get his own blanket out of the washer and into the dryer! One of the jobs I find hard with the bending. Often thought I 'd like a dog who could help me out, don't think my cat would be very happy though
Nitrobunny. I just read your post from 2 weeks ago. Hope your holiday was good. I did want to ask about Actemra. I’ve had about 13 shots and finally Got my ESR down to 4 and CRP to 0.29. However I need several surgeries and I was just wondering when you stopped the Actemra what happened to your numbers and did you have to go up on prednisone. Got me down to 7.5 and I was never able to get past 12. We are going on 3 years now on the high doses. So I am very nervous about stopping the drug. In Florida now and New Jersey rheumatologist Would be very happy if I didn’t have the knee replacement and the eye surgery I have needed for two years. He is the one who basically has saved my life. He is treating me down here by telephone. He is afraid that if I stop the Actemra I will have to increase the prednisone. So I would like to know what happened to you why you stopped the drug. Did your dose of prednisone have to increase. How are you feeling now in comparison to when you were on Actemra? I have had no reaction to Actemra yet. I am very tired and my muscles hurt from lack of use. The knee keeps me from exercising. Samson looks cuddly in a large way. Hope your new year is healthy and happy. I look forward to your response. Marilyn. Just a PS ...when I had PMR they never took a CRP it was always the ESR. Now with GCA they take both.
All in all Actemra was a great help. I did have to increase the pred dose temporarily but was able to continue to wean down to 10 which is great when you consider I was at 80 at the time I started Actemra. I’m feeling pretty good over all. The major thing giving me fits right now is an old ACL knee injury that is making its presence known. I also was in the hospital for five days over Christmas with colitis and a C Diff infection from antibiotic use. I came home on the 26th. The great news is only being on the prednisone I have less infections and seem to bounce back more quickly. I still have morning stiffness and aches but it goes away within an hour or so. I think so much of it has to do with where your body is at with the disease. In my case I got incredibly lucky because I feared I’d have to make a huge jump up and when I have a flare I do jump up for a couple of days, go back to where I was and continue the super slow wean. Actemra made me fairly tired. I definitely have more energy now but as I said it depends on where you are in the process. After quitting Actemra it took me a good six weeks to get my immune system to start coming back.
I’m glad you reached out, I’ve been hoping and praying you’re well. Best for a happy and healthy new year!
Hi nitro bunny I’m just going to say this and Not correct because I am trying to get ready for an early New Year’s eve dinner since my body won’t let me stay up late. I was waiting patiently for your response since we have tracked each other. I’m glad that you only had to go up to 10. I don’t know what will happen with me. So far there have been no infections and I am very lucky. But I am very tired and my muscles don’t want to move at all. I need a knee replacement due to two tears in my meniscus. They will not heal and I can I go for physical therapy for lack of energy. I will try to stay on the drug as long as possible but I will have to stop at for my eye surgery on 2/1/18. A birthday present that I would have preferred not having but I have put the surgery off for a very long time. Good to hear that you are doing well. I now know what to expect, although we are all different. When I relapsed before Actemra I usually had to go up to 30. Last time I was at 20 and I still had high CRP and ESR. I didn’t drop until the injections and then just was wonderful. This is very tiring after 3 1/2 years with GCA and three years prior with PMR. Usually my significant other took charge and last year we bought a little condo in New Jersey so we go back-and-forth fromFL. However he just had surgery which was supposed to be same day and ended up in the hospital for eight days and discharged with oxygen etc. is still nowhere near what he was before. So it’s a little rough getting around on this knee and the fatigue but we forge ahead because the alternative is even worse. Are you still going to California I do remember the trips from Michigan to California. I would like for you, if you don’t mind to email me at Marilyn redder@gmail.com
That was all one word. Keep in touch have a wonderful new year. I will think of you at midnight and say a wish for us for good health. Marilyn
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Could this be only prednisone withdrawal?
Tenosynovitis or bursitis vs PMR flare
Just saying hello
Pains but also in heart!!
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