I'm asking my forum friends that, because I'm asking myself the same question.
I had an incredibly uplifting trip to Maine for nine days and returned on August 27. My level of activity was high and I didn't seem to tire. I visited/or they came to my hotel...all my old friends and my family even drove down from Canada for four days. Yes, it was an absolute high. Lots of love.
I'd been on 7 mg for a month before I flew from Chicago. Three days after I returned I cut to 6mg. After a few days I couldn't get out of my own way I was so tired and it hasn't passed. I'm beginning to think it may not be the taper and may be that I miss my family and friends so much. Maybe it is time for me to just be thankful for what I had.
When I see my rheumy on Wednesday I am going to tell him that from now on I'm going to taper by just .5mg about every three weeks. We've talked about this before and I know he'll agree.
I have developed something new ....my left shoulder is very sore (since about 8/30) to the touch and I cannot put my arm backward without discomfort all the way down my arm. At first I couldn't raise it without pain but have been working on that. Massage therapy helped but it hasn't cured it~there is lots of discomfort in the upper arm muscle. I didn't lift anything~? I've never been diagnosed with PMR and other than some stiffness in my neck....nothing major. We all have lots of little niggles...but the shoulder is changing what I do and how I do it. Pretty soon Grammy80 will be 82 and that's a long way from 30, 40, or even 45!💕🧑🏻🤝🧑🏾🧑🏻🤝🧑🏿🧑🏼🤝🧑🏻🧑🏼🤝🧑🏼🧑🏼🤝🧑🏽🧑🏼🤝🧑🏾🧑🏻🤝🧑🏻🧑🤝🧑🧑🏻🤝🧑🏼💕
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Grammy80
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I've had shoulder issues off and on for a couple of years. Seems to be related to whatever osteoarthritis is doing to my cervical (neck) spine. Additionally, the pain makes it hard to exercise or even use the arm properly, which causes muscles to become weaker, which makes the whole situation worse. I'm getting better after many months, thanks to physio, and the exercises I do. My pred taper (only PMR not GCA) continues at excruciatingly slow pace and I'm now fairly confident that 2 mg will be enough, but not proceeding further for a bit, just to make sure.
Keep at your exercises, but carefully, and don't overdo them. Once again we get to use our patience muscles. Good luck!
Thanks so much, yes topical gel and Tylenol give some relief as well. I'll run, walk, my shoulder by my rheumy Wednesday. He loved your plan. I'm so lucky to have him after a rough start; he is knowledgeable but wise enough to listen.
Pro said the same thing about waiting before reducing but the horse was out of the barn by then....ah! hindsight. All I have to do is ask you two first!!💕💕
😂🤣Well, I just ordered something purported to be Flexi...I'll let you know what a get. I double checked to make sure I wasn't on Amazon.ca because I do order for my family; sometimes cheaper than shipping to Canada. You can be the Amazon Queen, but I'm the sleuth, they don't call me Sherlock for nothing.💕💕
My son buys my Flexiseq for me, I asked him to as ongoing Christmas and birthday gifts, the extra strength for OA, and in Canada we have to get it through Amazon. I only buy anything through Amazon if no alternative, and there isn't in North America. it has really helped my knees.
It was just just $18 through through Amazon us.. probablyprobably more expensive expensive through Amazon CA??? I think Voltaren Voltaren was about about $30.
My son buys me four to six tubes at a time (they are sold in a bundle) and I tell him not to give me anything else for the festivals. I don't know what that costs him, but he was in the UK earlier this year and we found through Google that it was cheaper through A___ than the price listed for Boots pharmacy! You can't order directly from the company, one is directed to A. Btw I tried Voltaren, not knowing much about it and it gave me a gut bleed, so apparently that kind of medication is contraindicated for me. Reading the literature Voltaren is discouraged for use in over 60s! There's no actual medicine in Flexiseq, but it appears to contain substances which ease the operation of a joint and in that way can majorly or entirely eliminate pain.
Even pleasurable and joyful stress is still stress. Like DL, I'd have waited longer before trying to reduce at all, And certainly not 1mg at a time at this stage. Yes you have Actemra for the inflammation - but it doesn't substitute for the lack of cortisol as the pred is reduced.
Thanks, I never thought of 'joyful activity' as a stressor...but you are right once again. I feel like I've been beat up but this time I WANT to go in the corner.💕
If what Dorset Lady suggests does not help try Flexiseq - now helps my shoulder and it also does my knees and hands and now they have pictures to show you exactly where to use it.
The pictures were asked for by users and the manufacturers agreed.
It's soft tissue which absorbs the Flexiseq and it travels through to the the joint and helps with lubricating the joint, important as OA is damaging our cartilage.
Have you considered increasing again for a three days until you get over your holiday Fatigue flare up?
It might be an idea to return to the dose you were on before the reduction you did when you got home and do that dose for a week after the temporary increase, then try the 0.5 mg reduction after that as long as you feel ready to start again and fully recouperated.
Rule of thumb is , never reduce just before, during or just after a big event or trip that involves a lot of mental or physical activity.
Stress is not just a bad thing. It's any activity , good and fun , or bad and sad , that is too much for your body or brain to cope with at its current health level.
Unfortunately, we often forget the good stuff takes as hard a toll on us , and often forget to pace ourselves when we are enjoying ourselves , and when we finally relax it hits us like a spiky brick .
Don't think of the temporary rescue dose as a failing. Its just sensible and essential Self Care and will help you get back on track quicker.
I'd ask the Rheumy to do a thorough examination of your shoulder and see if you can get some xrays on it on the day. He should be able to assess if it is an injury, an osteo problem , or even delayed onset muscle pain on a weak spot from the extra activity on your holiday.
Give yourself some time to rest and relax after the appointment with just some gentle exercise , it sounds like you've earned it. I'm sure it won't be long before you feel more yourself again and you start planning your next adventure, Bee
Thanks for all that goodness~! UPDATE! Today I had an appointment with neuro-ophthalmologist. He does a visual field each month and during it my shoulder pain was so bad...trying to get comfortable, stay still, head shaking, eyes watering mess!! He ordered two MRIs for Thursday the 15th; one of the cervical spine and one of my left shoulder. I love this guy...he notices everything but ACTS. My GP is reluctant to order MRIs because he says he'll have to fight with the insurance company (good old USA). So, I'll know pretty soon just what is going on. 💕
It must be something about Neuro Opthalmologists worldwide , it was while seeing one for my Uvietis that my NO Consultant realised I could have GCA and sent me out of area to be checked within 48 hours (completely unheard of behaviour in the NHS , especially in Wales).
Good luck with the results.
Have you found that the pain improves more with an ice pack , warm pad or have you tried alternating the two?
Keep your fluid levels up and if you don't take one already have a full vitamin and mineral supplement , it helps reduce the pain which can be made worse by dehydration ( internal) and vitamin deficiencies from using up your nutrients on the continuous healing.
Try laying more upright at night with your shoulders cushioned by one pillow and others holding your head and neck comfortably . It will loosen the shoulder area and keep it relaxed , its particularly helpful if you are suffering from a trapped nerve or nerve pain in the area as well as inflammation.
Thanks so much Bee!!! So much good advice. I haven't tried heat or ice because I don't know where to put it. Right now, the pain is going down to the elbow, in the upper arm muscle and across my clavicle. BUT, I'm prone to rolling to my side while sleeping and then waking. Tonight it is the recliner for me with a little down comforter!! I think it is enough computer too....although it is my connection to the world. 💺💕
Good luck for tomorrow. @It sounds very like my rotator cuff syndrome. It was diagnosed by ultrasound, which must be much cheaper than an MRI. Maybe your GP would consider that in future?
Quite honestly, Sharitone....I keep reconsidering my GP. Sometimes I feel he just isn't into 'fixing' if you are over 80! In the states, there are benefits to having all your physicians in the same network...at the same hospital. He's the only 'squishy' apple in the basket. I may leave him yet.💕
well finding finding out got got delayed my my insurance requested requested medical records records from the the doctor to to justify the the MRI..... rescheduled rescheduled for week. But But look what what the Amazon truck just just delivered....
Your trip sounds really wonderful. What a popular lady you are. Remember a happy time is just as energy consuming as anything else. I also think your 1mg taper was too much. I would only be reducing by 0.5mg from now on. I think your returning symptoms are trying to tell you something Grammy. Take it easy now and reflect on your wonderful trip to see family and friends. 🌺
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