11 months on PMR journey...started at 25 mg Pred now tapering from 8 to 7 mg. I have stress fractures in both feet (sever steoporosis on Reclast). Sunday I will have completed 2 weeks using Dorset Lady’s method starting at week 3. I have discomfort and stiffness in my wrist and fingers which causes the dropsies. I feel better after TaiChi and exercise. Monday I returned from a spa vacation in San Antonio. The steam room really helped PMR niggles as did the massage. My 95 year old mother is requiring more care. She has live in help. I will visit Tuesday. My Dr. said to get blood work and if normal to keep decreasing. I don’t think that is the answer,
Suggestions appreciated.
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Sandy1947
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No - I don't think keeping on decreasing, especially at this stage, is the answer either. I'd want to stick there for a while to see if the wrist pain gets worse (suggesting it might be the PMR escaping) or stays the same/improves (suggesting it is something else or withdrawal).
What do you mean PMR escaping? I think wrist and hand discomfort is my body dealing with a lower dose of Pred. I’ve had this before and it went away with adjustment to new dose which took 2-3 weeks.
I mean that the higher doses of pred kept the PMR symptoms under control - and possibly the lower dose is not quite enough to keep it there. That's also what I said - it could be too low a dose OR it could be your body adjusting. And so you need to stay where you are for a few weeks at least to be sure. If you keep reducing and it was the dose being too low you won't know where it went pear-shaped.
Agree with PMRpro, no more reducing for the time being. I know that you are very susceptible to reduction which is what you’ve been following my taper, but think you might have come to your limit at the moment.
Throw in your mother’s situation and the adrenal glands thinking about working and you’re expecting a lot from your body just now.
If I were you, I’d just stick at the week you’re on until you get bloods done, and see if the discomfort goes away.
Then depending on results - of both- you either carry on taper or go back to 8mg.
Hey Sandy.. so sorry you are feeling poorly. UGH> (you look great in the photo however!) Of course I have no suggestion.. but travel..and worry about your mom cannot help. AND I think humidity makes the aches worse... was it humid in Texas? Also you've been steadily heading down..and isn't this dose about the time adrenals start working again? maybe it's all connected. I'd stop lowering for a month then start again! I'm coming down with you. at 9.5. Feel better!
also! WHAT double stress fractures.. ?? are you wearing Boots on both feet?? what a pain that is. Husband had foot stress fracture and was in a boot for 5 months. I should have sent him the HEALING energy I'm sending you NOW! so you heal faster than that!!
Thanks for the healing energy. I feel better already! Exercise helps my wrists, hands and mental state. . Did weights and just a little movement. I can never jump again. I refuse to lug around the big boot so I wear the soft blue one. It helps. Bare foot hurts. One foot is ok after 3 weeks. I only wear a sneaker on good foot.
I love following your trip! How much longer do you have? It seems to be going fast. Texas was 100 degrees the first day. The humidity wasn’t terrible. My PMR is better in warm weather. Going to NY for the holiday.
Nice to hear from you again but sorry for the reason. Your level is a very tricky one which usually requires a lengthier stay. Adrenals picking up again. I only tapered by .5 mg at this stage, although I could still achieve a 1 mg drop in six weeks. Later it was only .5 in six weeks or even longer. I'm now attempting to taper from 2.5 to 2 and it's been a journey! Who would think it!.
Thanks for your response. I think .5 is a consideration after I linger at 7 for a while. 2.5 to 2 is amazing! Journey is an understatement! I was finally able to finish a book this week. Before that I had the attention span of a 2 year old. I still don’t think my mental state or thinking is up to pre PMR. Illness plus aging is a bear! Grateful it’s not worse.
Phew! A lot going on. Poor you. I’m 7 months in now but at exactly the same Pred level. Alternating 8mg one day 7 next. An all day trip to London for a Board meeting earlier this week set me back a bit. 😟
Agree that exercise really seems to help, but I have to restrain myself from doing too much. Missed yoga this week, but off for a bike ride today. No sun in the Cotswolds this morning, though.
I’m so excited that you are in the Cotswalds! My sister and 2 friends are there now and I went twice after my divorce. It was a healing experience. Hiking with the cows and sheep was the highlight.
How do you restrain yourself from doing too much? I’m fine when I’m in a class. I stay for 30-40 minutes. When I’m in NYC and walking everywhere the mileage seems to add up quickly. It’s hard to determine what is too much. I’m taking an art tour of art galleries in Chelsea. I’ll leave after I clock 3 miles allowing for walk from subway to apartment!
I did not do well alternating my Pred dose. Switched to Lady Dorset’s method. I experience fatigue around 4:00 when I take a rest on my bed. Day is done at that point.
Hi Sandy, am glad you posted. You and I started this journey at around the same time last year so I have been particularly interested in seeing how you are progressing. You have always amazed me how active and positive you have been. Your taper has been quicker than mine as I started on 15mgs and am now at 8.5mgs. I am sorry to hear that you are experiencing discomfort at present, plus the worry of Mum is undoubtedly causing some angst. (I lost my mum aged 92 a couple of months before PMR diagnosis).
It is interesting that for about the last four weeks I too have had stiff fingers and wrists, leading to the ‘dropsies’. Bit of a worry as I play the piano when teaching my choirs. (Though I think the exercise of playing is helping at present to loosen the stiffness). I had assumed this might be arthritis setting in but, having read your post, now wonder whether it is PMR or pred level related since we at similar stage and levels?????
I do hope that your current status improves soon. Best wishes to you.I am confident you will overcome and ‘bounce’ back. Perhaps try to exercise your fingers by ‘playing’ an imaginary piano on the kitchen table whilst listening to a favourite piece of classical music. I’m sure a table top piano equates to an air guitar!!!
Thanks for your encouraging reply! It def helped my wrists and fingers at 4:00 am. as I play my imaginary piano. My Doc has me taking Pred at 5. She says it minimizes side effects. I also have a 13 yr old blind, arthritic Coton who is at death’s door. I feel she is on hospice care at the moment. I feel the grieving process already. Joey goes out early since I go to sleep at 8:30. I could be a baby nurse with my schedule!
8.5 is a great spot considering you were at 15. Only the Dr. is in a rush! Let me know how I can hearthe choir or recommend some good classical music. Now that I retired I want to focus on learning. No clue about music except what they play at Zumba and my R & B radio station. I figure Hip Hop keeps me young. I did an African dance class last week but had to walk the steps with broken bones in my feet. Love the drums! You have inspired me to walk into a church on 5th Ave. tomorrow to listen to a choir. I have churches on every block near my apartment in NYC.
Thanks! I was on my way to the dog park at 8:30 am when I ran out of gas! Transitioning from NJ to NY, packing and unpacking (not that much stuff) tires me out! I cook and do food shopping for my son and his family because prices of organic are way lower in NJ. I find that relaxing! It is also mentally challenging to remember everything! Today I forgot organic cheese.
I assume “pluck” is a good thing! Not familiar with the word. How are you feeling?
I am glad to see your post. Wondered if you were feeling poorly as I hadn't seen you post lately. Glad you are enjoying retirement. I have just two days till I am done and then go back one morning a week as a consultant till Xmas. Hurrah! With all you have going on emotionally not surprised you are a bit down. Pmr can make it difficult to cope as we once had. Blessings to you ❤️
Nice to see you on here. We spoke st the beginning of your journey. You are fortunate to be able to travel. I’m sure you will get full recovery. I’m dealing with the GCA also snd misdiagnosed for so long is contributing to my difficulty. 💜
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Yes, I have started about 2 weeks ago. I take 1 capsule 1000mg at night with my evening meal. I haven’t slept so well in years. Also my IBS improved immediately. I am still using the slow tapering between 9 and 9.5 but I am hoping that the flares , which I have been getting with monotonous regularity will abate .
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