Almost 4 weeks ago, my rheumatologist started me back on Actemra weekly. I felt better without it, but he feels I need it as we will start tapering down from 12mg prednisolone, which I'm sure my body will appreciate (I hope). The same week I started the Actemra, my GP had also had me try just 20 mg of Lasix 3 times a week, but when I had lab work, it affected my kidney numbers negatively. I will be taking the support hose route and no more Lasix. Thankfully, I don't have many beauty contests coming up.
All at the same time, I developed dizziness...dizzy or vertigo or middle-ear?? Another thing to toss into the mix was that a week or so after I started the Actemra, I not only developed bleeding under the site of the injection but on other places on my body...not serious, just that superficial stuff, capillaries I am told.
I've had no bleeding at the site of last week's injection, which I did two days late because I was waiting for a call from the rheumatologist's office. The dizziness is not nearly as bad...no more hitting the walls.
I did see an ophthalmologist that was much more thorough than the first, and he will examine my right eye every two months, or when I need him, as I taper my steroids. My visual field test of the right eye had improved slightly from last August when I went from 8mg to 12; I'll cheer for that! I use several eyeglasses...script, 275 and 300, depending on what I am doing.
I guess I feel pretty good for all that my body is experiencing ...and I hope the heck I'm not repeating myself. Is there a way for me to look up my posts so I can check that? Does anyone want to help a friendly senior citizen? Right now, I feel a bit beat up. Last week my husband was diagnosed with early dementia and will start some medication.
All of you are my rock...especially in these sad times....👩🏼🤝👩🏻👩🏻🤝👩🏻👩🏻🤝👩🏻👩🏼🤝👩🏻👩🏼🤝👩🏻👩🏽🤝👩🏻👩🏼🤝👩🏻👭
THE FORUM RULES💖
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Grammy80
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I’m here any time you post. Even if I don’t have info on what’s going on, I’ll be someone you can lean on. I think starting the Actemra is a good thing. After four years of never being able to get below 15mg of Prednisone, I’m finally at3.5. DadCue has done even better. Wishing you strength and better health. You are an inspiration.❤️
Oh sweetheart! I am sorry that life is presenting challenge after challenge to you. I know that your natural state is very upbeat, I have regarded you as a beacon before now. The news about Dementia research has been quite positive recently.I am sort of putting up with Actemra for the long term benefit, it doesn’t feel great. The poor souls with long COVID are getting it because it is good at damping down harmful inflammation. if you tap on your own name, I think you can get back to your old posts - a complete surprise if you are dotty like me. Can I be part of your rock? It would be an honour. 💖
I think you have quite a few people on here who wish the best for you. Your humour shines through even the dark times. Sorry to read about your husband 💐
Hi again Grammy80, I'm not in a place where I can comment on medication etc as I've not had to go down that route, yet anyway. Compared to many I'm still a newbie here. You are amazingly upbeat for the number of challenges thrown at you. Like others I'm usually online around 02:00 when I take my Pred, and there is nearly always someone around for a chat/whinge/moan/celebration.
😃Well, hi there ~! Today was a good day. It is 10:18 in the evening now, and I am just getting ready to get into bed!
I'm thankful I sleep like a rock these days and set my alarm to wake for a morning Zoom group. There are seven ladies and myself (thinking of my wilder days) who Zoom every morning for 45 minutes. We started to gather when the virus had concerned seniors quarantining. I usually only make it twice a week. My need for sleep wins out.
Three cheers to you if you stay up~! Have a good day. Good Night from Indiana🥱😴😴
I can only agree with everything that's been voiced already. I've only been on here approx a year, but I've received so much help and support here myself that I I will always try and help or support anyone else I possibly can. Here for you Grammy80. ❤
I don’t know if a weighted blanket will help you - I was a member of the “ 3:00 a.m. club “ for so long I thought that would forever be my destiny. My husband gave me a weighted (15 pound) blanket for Christmas and although I was hesitant to try it, have been getting a sold 6-7 hours since. It’s been amazing.
I have considered one of those but as I get very hot really easily I don't know if this would suit me! Are they very warm? Just out of interest, where would I purchase one please? Thankyou for your suggestion.
Oh wow! Thankyou so much for that. Answered my question perfectly. I'm very tempted to try one...my only hesitation is that they're quite expensive and it's a lot of money to have spent if it doesn't work! I'll definitely do a bit more research on them though. Thankyou again.
Definitely do your research. You need to consider such things as how the weight beads are sewn in as you want them to remain fairly evenly distributed throughout the blanket. Also I understand there are two kinds of beads - plastic or glass - and that can be a significant difference for some. I have never used one myself but I bought one for my son when he was suffering from anxiety. He never gave me any direct feedback but I noted that he used it! I'd never even heard of them until someone mentioned them on this forum, perhaps about three years ago?
Do you think they meant fleece - which is usually not sheep fleece any more but made out of recycled tennis balls? 😀 Also I have just learned there is now something called micro flannel made of polyester.
It looks like HeronNS answered - good thing because I’m in Canada and wouldn’t know where to direct you to purchase one...maybe Amazon as another source. I’m always cold, so don’t know if they would be too hot for you. (I also have a duvet on top of the blanket which is perfect for me.) The suggested amount of weight for the blanket is 10% of your body weight. I literally don’t move the entire night and would heartily recommend this. I had tried every sleep supplement available, did everything to ensure I was relaxed before bed...nothing worked until now. I feel like I’m in a cocoon (or chrysalis!) ...so relaxed! 7 1/2 hours of sleep last night, recorded on my Apple Watch. I hope this information helps.
For those members who live in Canada and the US - mine was purchased at Home Depot - B and Q equivalent in UK. Home Depot’s price is under $50. Good luck in your search and hopefully this will help the sleep issue!
I'm in Canada too. That UK site was the site Google gave me. There is a Canadian company, Gravid, which disappointed me because their "Canadian" product is actually made in China, so after all my effort to support our economy I felt very let down.
That is awesome...in spite of the meds I take, I strap my CPAP on and I'm GONE for at least 8 hours. I'm thankful for that...if it is a busy week, I've been known to sleep for 12 hours!! I can recall those days when I would be lying in bed and my body felt like it was full of jumping beans...not any more. I'll put that in the blessing column~!
It's ok though. It's white over with frost outside and also quite a thick ground mist. -3⁰C!! I'm warm and toasty in bed with my hot water bottle, so just lying here looking out through bedroom window and trying to relax.
Sounds really snuggly that. Similar weather, little dusting of snow on the ground but temp above freezing I think. Contemplating going out at 06:00 this morning, too many people around for my liking yesterday. I'm beginning to think that I'm going to have a real difficulty with getting back to socialising when/if this is all over.
I went for my daily walk around the meadow and village yesterday and SO many people! All being responsible and respecting social distancing rules but I kept having to step out into the road to pass at times. Not ideal!I'm afraid I'm a bit of a wimp!.... too cold for me to be out at 6am and in the dark! Will you go onto the moor?
That's the way I am as well. Yup it will, 10 minutes and we are there, wellwrapped up, the dogs have flashing collars and I have a headlamp which I use where necessary, but even at that time I probably won't be alone.
Can't believe there'll be others out so early in the dark! Definitely in the summer, but not winter! You must all look like little fireflies scooting across the moors with your head lamps on!
There won't be many, but it is quite funny to see little flashing lights appearing on hills, it's the flashing lights on dog collars, heaven's knows what the wild life thinks of it. Won't take a coffee though in case I get arrested for having a picnic!!
I often say... considering everything that is going on I feel good, just some days 'not so great' and my patience level isn't where I'd like it. Everyone on here...carrying on every day and forging ahead...caring about others is an incredible source of strength for me. 💖💖
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