12/2016 PMR. Delayed release Pred taken at 10 PM. Markers stable since 04/2017. Day 28 of 38 day taper 6-5.
I have two topics I'd love some help with. For all I know they are related.
#1DOWN I have been struggling a bit going from 6-5. I do not feel a flare. I am just feeling down. Partly, I'm a bit upset that my carb and sugar restriction are no longer holding my 25 pound weight loss I achieved almost miraculously over the first five -six months of PMR. I've gained a few pounds back, despite getting my will power back under control. I'm not complaining at this point but don't know what this portends. The other day I read here from several others struggling with weight gain at around this level of taper. I'm wondering if there are any people out there who have been able to reverse that trend as they continue to taper. Any idea why this should be happening now? I wonder if I've now switched from metabolism dominated by the effects of Pred to metabolism dominated by my own cortisol and that I have to feed my own cortisol differently from how I been feeding Pred. (If that makes sense to anyone.) At higher levels of Pred I seemed to be able to eat as much as I wanted as long as I stayed away from carbs and sugars. I can't count on that these days.
Other reasons for feeling down just seem physiological. I'm more sensitive. I'm finding life decisions, like financial planning, car buying, vacation planning, and the decision to continue working or to retire if I can't renew my office lease. Should I even be undertaking these decisions in this state of mood? Leaving them to linger will not help, but I know it's not necessarily wise to trust one's instincts when one feels down.
#2 WEAK VS. STIFF. I've also been struggling of late with my physical body. I've been feeling weak, as in having difficulty standing up straight, holding my shoulders back and down, and my head up. My posture which I've been working on very hard, and which had been a problem I'd largely resolved over the years, has really been suffering. I've been bent. I thought the weakness was due to lower levels of Pred and my adrenals not having comeback onboard though I do think my adrenals are actually getting their act together. The late afternoon lows are definitely much better.
OnTuesday I went to my osteopath and she really worked me over: myofascial release, untrapping lots of different muscles in my back and chest, and working on my frozen traps. I wasn't aware that all that had gone wrong over the last month. When she was done, I could breath better and it was no effort to stand straight. Another one of those miracles she performs on a regular basis. I'd really been thinking that this was just my "old" pre Pred body coming back to haunt me. It has been a great relief. I was afraid I'd lost all the progress I'd made and that I was settling back into my old pre pre Pred body. A reason to feel a bit down I suppose.
How could I have been so "off" about what was going on with my body? And more importantly, has anyone else had this happen? On higher doses of Pred. I reported that my body/bones felt like it was barely hanging together. My loosely ligamented body felt like those skeletons that hang in biology labs. Now I'm a lot less loose but no better for it I fear. BTW, my energy is much much better the last few days and I'm back to exercising more.
Hoping my mood turns around if my energy holds.
Thanks for "listening".
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Hindags
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I would suspect 1) DOWN may well be due to your body struggling to catch up with cortisol production. The weight gain at low pred is a mystery to me. There is no reason I know of why "own" steroid and eating low carb should make a difference - most people using low carb diets are on "own" cortisol and they lose weight if they eat too little carbohydrate. Could it be fluid retention as the mineralocorticoid secretion by the adrenal glands is being affected by swings in the HPA axis function? I don't know enough about that aspect of returning adrenal function.
And to be honest - 2) may also be due to the same underlying problem.
I know what you mean about feeling so much better after a good osteopath workout!! Wish I had one here...
About the weight gain. I'm mystified too. I took the 23&me gene testing a while back and was told that I have genes that make me more susceptible to gaining weight from fats. I never tested that genetic finding and never tried to change my diet though I would have been better off having lost some weight years ago. After my PMR diagnosis I did change my diet but went up on fats when I lowered my carbs and sugars. I lost weight so I thought that the genetic finding didn't hold for me.
Since dipping to about 7 mgs, noticing a slight bump up in weight, I'd been thinking that maybe the 23&me information was correc after all, but that Pred had somehow changed my fat metabolism so that I didn't put weight on eating more fat. Nevertheless I will stay on a low carb diet diet and give my adrenals a chance to sort themselves out before making any changes.
About the myofascial release work, etc., this is the third day and my energy and fluidity of motion are so much better. I feel like she got my body out of jail.
About my mood. It is still too low. It feels a bit premenstrual of all things. Teary at the slightest whiff of sentimental mush.
I can't really comment on the weight issues. I like you am following low-carb HF at the moment and still on 8mg (17days). Lost a bit of weight in past 12mths but it's slowing.
I find myself to be tired and emotional when I have deep tissues massage etc. Fatigue can make me like a weepy baby too.
Hope you feel better soon. It sounds like your spoons are plastic at the moment like mine. 🌻🌻
I read a book recently on DNA history and it seems that the people offering DNA info have not actually got a full DNA database, although they are improving as more people give their info. The guy who wrote the book tried three places which all came up with something different. However the more people who subscribe the better the databases, the only thing is we are paying for them to improve!
Gosh - I can't get a handle on the weight at all. I'm at 4/5mg now and I just cant shift it. And I'm absolutely starving!!!!! Very depressing altogether.
I know what you mean by weak! As I tapered from original 40mg, when I got below 10 it seemed like my muscles would alternate between jelly and tight balls of spasm. I’ve had to both build strength with gradual exercise and work with physio to remove/prevent the kinks. It’s taken a lot of self discipline to do the exercises every day, but it is paying off. Are you able to exercise regularly? I find that helps with my mood.
I have been exercising from the beginning. As I got lower, around 7 and below I found it harder. I became what was called "exercise intolerant". Much of what I'd been doing as routine had to be changed because I was hurting myself doing the same stuff that I'd been doing, especially shoulders. I think I caused myself some permanent damage (rotator cuff or bursitis) .
But I am back at it, doing a new routine and yes yes yes helps my ambient mood, but not so effective at managing the tendency to dip down in reaction to thoughts or feelings.
What surprised me most this week was how much stronger I felt after the osteopathic adjustments and myofascial release. My oesteopath said I was in "lockdown". Whatever "lockdown" is, it is powerful. It constricted my movements and breathing so that I was working against strong forces keeping my muscles from working fluidly. It is also insidious. I wasn't aware of it. All I knew is that I felt stiff or weak and couldn't tell which. I guess it was both and neither directly to do with Pred taper or PMR, but probably side effects given how my body reacts.
Did you have trouble with weight gain or cravings at higher Pred dosages?
I didn't. But then I seemed to be pretty lucky. I did have skin thinning and hair loss, but I actually slept better on Pred. than I had in a long time. And my stamina was pretty good. Not even very moody. A little irritability, but my OH deserved it. ;).
Oh yes, hair came out in handfuls and strangely lost it on my upper arms, legs, back etc. Now that I’m on lower dose it seems to be growing back in.
I do seem to have more food cravings at lower dose too. Isn’t it funny how it is so individual the way we are affected? I s’pose that’s true of the disease too! They say the pharmacy of the future will take into consideration our genetics and adjust accordingly. A lovely glass of Red or dish of ice cream would help my mood if only because it was such a treat! That and reading forum posts!
I find that a bit of whisky of a Manhattan cocktail in the early evening does work wonders for me. I measure it carefully because it is major source dietary carb on my diet these days. But worth it.
I've been playing more of my favorite music, and Outlander TV series always helps. Truly.
Being in the garden.
2) things that help me feel competent.
Work.
Reviewing finances.
Straightening up papers etc.
3) Being around people or pets who express joy at my being there.
This is my homemade list. I know I can't always count on all three, but usually I can find something from one of the three categories that helps.
I can't really comment on the weight issue. It's really always been a struggle in my adult life. Watching carbs and exercise help of course but I eat when stressed and I crave chocolate not fruit! I exercise in a warm therapy pool run by a physical therapist. It's building back my strength and I've stopped hurting myself. I'm walking again and even line dancing! I also get myofacial work done monthly to try to ward off those knots.
Your comment on feeling weepy struck me though. I had a horrible time with it early on when my doctor was having me drop my dose in too big a jump. I'm better now that I do a more sensible taper but I still get that way when I'm stressed and/or forgotten to pace myself. I need to remember resting is not being lazy!
Hang in there. Take some time to slow down and rest. Treat yourself to a lunch out or some flowers. Hopefully it will pass soon
I am sitting in my lounge 4am with cup of tea shoulders slightly tender hand joints stiff hot water bottle handy point is came of pred over 10 weeks ago but have lost a stone in weight since had an injection for carpal tunnel problems this seemed to relieve all my jointstiffnes now Seems to be wearing off is my pmr returning? It is only my shoulders that are affected 2codamol tablets when I get up after they kick in I am okay to the following morning
This condition is so confusing. And I really think that the physical toll it takes is under- reported. The Matteson study that reported on the long term effects of Pred being milder than thought at PMR doses, was a retrospective based on what was recorded in med ical charts. A prospective study including muscular skeletal issues, whether caused by PMR or Pred might lead to a more holistictrestment approach from the get go.
Typically the only thing that relieves PMR pain and stiffness is prednisone so if codamol is working it might not be PMR. Maybe start with assuming it's the carpal tunnel. Do you need surgery? If it's your shoulders though I'm not sure. A trip to the doctor may be in order.
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