OK! I'm starting to prednisone taper again...

[Grammy80]

Yesterday I saw my rheumatologist after 4 months. I'd been doing really well on my tapering every three weeks and was at 3mg when I had the shoulder replacement surgery in July. We scheduled my follow-up for September since I was doing so well at my last visit in early June. I remained at the three milligrams to be on the safe side but had to discontinue my Actemra on two occasions and have only been back on it for 3 weeks. It was discontinued because of an ulcer I had developed from sitting in the recliner for 6 weeks and sleeping in the recliner. 💺 They were concerned about infection.

Well here we are back to normal, my rheumatologist said I really dodged a bullet with my low dose of pred, no injections, and the stress of that major surgery. I had my first physical therapy appointment on the 11th of September and was absolutely thrilled with what I could do. Now, I'm trying to find the happy place between overdoing and doing! Starting today I took 2 mg and will do so for 3 weeks, at that time I will drop to one and a half for 3 weeks and then to one mg and after that .5. My next visit is scheduled at the end of November and hopefully I will be off of it altogether and remain on the injections.

I'm to reach out to him if I have any more headaches... Like those, I experienced over the past 3 to 4 weeks. They were definitely what I call 'GCA crawls'! That coupled with some neck pain right along the occipital nerve did give me pause. I'm really hopeful that this may be my Swan Song on prednisone but if not I'm perfectly happy swallowing a few tablets a day.

I should get better organized shortly, but have three therapy appointments per week. The topper is I still am not sleeping properly and catching it now I hear an hour there and then about 5:00 to 6:00 a.m. 2- 3 hours. I don't have to get up in the morning but like to be up by at least 9:00. ( I wish everybody was a good sleeper but I was encouraged in reading the Forum tonight by how many peoplehave the same sleeping pattern as I do, compliments of prednisone. Although sometimes I'm so tired I think these new sleeping times have become a habit??) There's just so much daylight, energy and so many things to do. I have begun to do very small watercolor paintings again and put them on stationery for a church bazaar at the little church I used to attend in Maine.

It is 1:00 a.m. Here in Indiana and what better thing to do than visit with friends.💞💞 I know how much this forum means to me and when I read the postings and answers I can see what help it is to each of us. Have a great day in England and thereabouts.. Some of you may just be getting up, the early birds. Be well💞xo

[DorsetLady PMRGCAuk volunteer]

hi,

Lovely to hear from now you are well on the mend from your unscheduled surgery…. but as we are always saying no rush to reduce.

Do what you can - and what you want do - and all my best wishes. 🌸

[Grammy80 in reply to DorsetLady]

Thanks, DL~~you are so right...I'll spend my energy doing enjoyable things. xo 💞

[SheffieldJane]

Your progress is inspiring Grammy. 💖

[powerwalk]

🌷💐

[montebello]

Always so good to hear from you, Grammy. You bless us all.

[HeronNS]

Glad things are on the up and up!

A tip, you probably know already, is to be exposed to daylight early in the day. This is a key in resetting the internal clock and may help with restoring a more regular wake/sleep cycle. Wouldn't think pred at 3 mg would have an effect on sleep, so it's probably more likely to be a result of habit, as well as the disruption surgery, different sleeping position during recovery and medication changes will have caused over the past few months.

Best wishes for continued good news!

[Grammy80 in reply to HeronNS]

All good points! After writing last night it dawned on me that I might sleep better if I raise the head of my bed.. It worked. In another month or so I am going to just set my alarm and force myself to get up early.. 7:30 or so. I really do enjoy the day. Thank you💞

[Bcol]

Hi Grammy, good to hear things are looking up and getting back to "normal". Take care.

[Grammy80 in reply to Bcol]

Thanks!! It is refreshing, for sure.💞

[potterylady]

Thanks for updating us on your health journey Grammy. You amaze me. I love how you had said you feel like your brain is 38 years old. I hope that when you recover from this latest surgery, your body will be able to keep up with your 38 year old brain! You are always so encouraging. You are appreciated. Take it easy. xo

[Grammy80 in reply to potterylady]

💞 I accept the fact that the body is playing 'catch-up'....for me my mental attitude is 90% of the journey. My brain will drag my body along for the ride~!

[potterylady in reply to Grammy80]

I aim to live the same way as you. I'm pretty positive but as you know, this can push us down pretty hard. It's so good we all have each other to reach out to. Sending you love, joy, peace and strength! 💞

[Grammy80 in reply to potterylady]

The very same to you~💞 I'd be lost without this wonderful crew!!!

[Pixix]

Well done, good to hear you’re on the up again!