Several variables and unknowns~

[Grammy80]

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💖

[Blackcatlover]

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.❤️

[Grammy80 in reply to Blackcatlover]

That is awesome....thanks!!💖

[SheffieldJane]

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. 💖

[Grammy80 in reply to SheffieldJane]

Indeed....you are already an employee💖

[SuZuS]

Happy New Year Grammy80 !!! Just saying hello, you are always a joy and an inspiration to follow.

I don’t have many answers,

but I will always care about you and your journey. 🙏🙏🙏❤️

[Grammy80 in reply to SuZuS]

And a Happy New Year to you...💖💖

[Hollyseden]

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 💐

[Grammy80 in reply to Hollyseden]

Thanks so much, Hollyseden~! I think we all draw strength from each other...and humor or as my Canadian grandson would enlighten me...humour~!💖

[Hollyseden in reply to Grammy80]

Yes it is humour in Scotland too. We all need that in these trying times 🙄

[Bcol]

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.

[Grammy80 in reply to Bcol]

Is that 2:00 am in England? If so I am probably putting my pajamas on...but I know where to find you. Be well😉💖

[Bcol in reply to Grammy80]

Morning Grammy80 about 0415 here, for me at any rate. Hope you are feeling a little more relaxed today.

[Grammy80 in reply to Bcol]

😃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🥱😴😴

[Bcol in reply to Grammy80]

Glad you've had a good day, night night and sleep tight.

[Kendrew]

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. ❤

[Bcol in reply to Kendrew]

Morning Kendrew, you having another sleepless night?

[Kendrew in reply to Bcol]

Hi Bcol. Could say. Slept till about 3.00am and can't get back to sleep.

[GratefulBailey in reply to Kendrew]

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.

[Kendrew in reply to GratefulBailey]

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.

[HeronNS in reply to Kendrew]

Asked Google your question and the answer came in an article from UK based company! A sign? melacomfort.co.uk/blogs/the....

[Kendrew in reply to HeronNS]

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.

[HeronNS in reply to Kendrew]

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?

[HeronNS in reply to HeronNS]

this: healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to HeronNS]

Wonder why they say flannel isn't a natural fibre product? It is wool or cotton - they are natural enough!

[HeronNS in reply to PMRpro]

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.

[PMRpro Ambassador in reply to HeronNS]

It says flannel and fleece - fleece is plastic bottle these days,

[GratefulBailey in reply to Kendrew]

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.

[Kendrew in reply to GratefulBailey]

Thankyou for all that info. It does sound like it would be worth a go and I'm definitely going to look into it more. Appreciate your help.

[GratefulBailey in reply to Kendrew]

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!

[HeronNS in reply to GratefulBailey]

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.

[GratefulBailey in reply to HeronNS]

Me too...

[Grammy80 in reply to GratefulBailey]

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~!

[Kendrew in reply to Bcol]

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.

[Bcol in reply to Kendrew]

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.

[Kendrew in reply to Bcol]

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?

[Bcol in reply to Kendrew]

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.

[Kendrew in reply to Bcol]

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!

[Bcol in reply to Kendrew]

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!!

[Kendrew in reply to Bcol]

Hahaha! No....better not. No coffee at the moment! Enjoy your walk and get wrapped up warm.

[Bcol in reply to Kendrew]

I will thank you, hope you get some more sleep and have a good day.

[Kendrew in reply to Bcol]

Yes....I'm going to try for a little more sleep now. Thankyou. You have a good day too and stay safe.

[Bcol in reply to Kendrew]

🙂

[herdysheep in reply to Bcol]

Someone in the village who walks in the dark has 3 dogs with different coloured flashing lights plus her headtorch. Quite pretty to see.

[Grammy80 in reply to Kendrew]

💖

[Bcol]

That's a shame, you seemed to have cracked it for a few nights as well.

[Kendrew in reply to Bcol]

I always get a bad night every so often. I just accept it now as part of my life.

[Bcol in reply to Kendrew]

Indeed, no point in worrying about it.

[Coffeebeans]

Oh you do have a plateful to deal with at the moment. I do hope everything continues in the right direction and you begin to feel better on actemra

CB

[Grammy80 in reply to Coffeebeans]

💖

[MrsNails]

Oh Grammy

You are having a tough time at the moment, sending you Hugs 🤗 & Good Wishes 🌸

Remember there is always someone around on here who can offer support or a chat.

Take Care & Keep Safe & Well

MrsN 🌸

[Grammy80 in reply to MrsNails]

Thanks, Mrs. N~! This will be a busy week, rheumy for me and brain scan for my OH. I don't foresee any shockers... today was a good day.💖

[MrsNails in reply to Grammy80]

Good Luck with your Rheumatologist, l have a Phone Consultation tomorrow with mine & Xray today. Hope Brain Scan is satisfactory for you husband.

Best Wishes to you both

Angela ❤️

[GratefulBailey]

I am joining the long list of people who are wishing you strength and hope. I am also inspired to “keep on keeping on” when I read your posts!

[Grammy80 in reply to GratefulBailey]

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. 💖💖