Thank you all for the support. Those virtual hugs feel great!!! It is Tuesday night in Indiana.
Yesterday was such a full day: rheumy in the am, vote in our election, and primary care physician in the pm as a follow-up from the hospital. Finally, today, I am at the computer a bit. When we got home, sleep was all I could think of.
When I went to the rheumatologist yesterday, Monday, I was determined to taper by no more than 10mg. Well, so much for that! After he looked at my wet and red ankle, which wasn't worse than on Saturday, he said he felt it necessary to cut by 20mg, and he wanted to see me in a week. If I have any headache or other issues, I am to add 10mg and stay on that. Stop the Actemra. He also extended the antibiotic for another week. Hopefully, I'll be more comfortable with this taper when I've been on it for 3-4 days.
I thought a lot about it the day and night before and decided that if I had to jeopardize my vision to beat the cellulitis, I would do it. How do you fight infection when you're filling your body with immunosuppressants plus Actemra? This morning I took just 40mg...never thought I would say just 40mg! I can only describe how I feel as a bit strange...tired and a bit spacey. After eating breakfast, I slept in a chair for two hours. Today, I had a home helper for four hours to prepare and freeze meals that are Parkinson's friendly and foods I know my husband likes. She'll be back on Friday.
My husband marked the red area on my ankle with a permanent marker so I could see if it went over today's line or began to shrink. That is the main reason I followed up with my primary care; can't beat confirmation that all is well!! With Parkinson's, you don't blink as much, and my dry eyes were getting like the Sahara! Also, my two Rx eye drops have been neglected, so today, I developed a system to hold me accountable. I see the neuro-opthalmologist on November 4 and look forward to that.
Then I'll be ready to coast for a while....that would work for me. All the support is SO appreciated, 🧑🏼🤝🧑🧑🏼🤝🧑🧑🏼🤝🧑🧑🏼🤝🧑🧑🏼🤝🧑🧑🏼🤝🧑🧑🏼🤝🧑🧑🏼🤝🧑🧑🏼🤝🧑 You are the best~!💞💞
Written by
Grammy80
To view profiles and participate in discussions please or .
Oh, Sondya.....I am very nervous, very. The race is so close and will have worldwide ramifications. I've lived long enough to remember when this country did represent the Constitution, imperfect,yes, but always a dependable ally. I'll be on the edge of my seat💞
So good to hear from you, Grammy. I love the way you always have a plan for both health and home affairs - that is keeping you positive. Your home help for meals sounds a gem. Thank you for keeping us informed. 💕🥰
,..... best-laid plans etc. My vision is sharper today -20mg, and that is exciting. So far, so good, and I know if I'm good on the fourth to fifth day, the new dosage should settle in. I'm no worse, though the leg leaked a lot last night. I can remember years ago, my ankles looked like an elephant's. Now, they remind me of another famous Marilyn...deceased movie star. 😅🤣Similarity ends at the ankle, they are so thin. Go figure? x💞
Thanks PMRpro, I'll keep my eye on it..and it seems contained although it leaks a lot...between the loo and the leg...I should look like a prune in no time. I hope you are doing well. x💞
Hi Grammy, I hope this taper is successful so the antibiotics can do their thing and beat the cellulitis! I’m happy to see that you have some help with meal preparation. Your positivity is an inspiration. I hope you get to coast very soon. Here’s to you!!🫶🤗
I'll bet the price is better in the UK. I had this agency when I had shoulder replacement surgery last year. Most of our health insurance in the States will not pay for home health assistance of any kind. The minimum is three hours at $26.00 per hour, this is one of the least expensive. I've had good fortune with the girls. Right now I have her eight hours a week. Who knows, in time, it may be more or less. Some choices are made for us.
Medicare for seniors here will not pay them unless they meet specific guidelines and the agencies don't want to meet them. Some folks qualify for state assistance based on income; most agencies are paid by state welfare ( I'm happy they get the help). The agencies want those clients and bill the state $40 - $50 per hour. Our system is broken for middle-income and poor. I'm not a cynic, just a realist...$$$ talks...and it isn't like we have an endless supply. It is sad.💞
Actually it’s not so very different in the UK Grammy, I’m sorry to say. It would be difficult to find someone to actually cook, and the private cost would be in the area you quote. Most state services, such as they are, only warm up food or make toast etc. They’re timed in quarter of an hour slots, so do whatever’s quickest. I know, I used to manage a state agency team, and also employed a private one to help with my mum while I did so!
For context, I’ve just got a new cleaner. She’s really excellent but costs £20 an hour (in the relatively affluent south of England) xx
The woman who cleans is $100 USD ~~she comes in with the vacuum suction and tank strapped to her back and is waving good-bye in almost three hours; great job. I'd say it works out pretty much the same.💞
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
DSNS Taper
Worried about a hastened taper ...
Opinions re Taper from 10mg downwards as per Rheumatology Nurse advice please
