Hello everyone, I’m sorry I haven’t replied yet to everyone who responded to my earlier post about all the stress of the last months plus a move. Thank you for all your support. I know I whined quite a bit! We moved a month ago but are still getting settled. I did a lot of moaning about stresses, financial, family, worried about communicating with my doctor, a broken down car, and more. Since the move a lot of stress has been alleviated since my sister doesn’t pay our rent anymore, and I did get my car fixed, all be it temporarily.....it’s OK if i stay pretty close to home.
When all this started in April I had gotten down to 10mg and started tapering to 9., . from originally being at 40. when diagnosed in January 2018, but I starting to have pain and symptoms. Bloods had gone up, my rheumatologist suggested going up 1-3 mg. Thank goodness I finally found one who listens! They are out there if you don’t give up, this is my third one and I’m slowly beginning to trust her.
So May, June, and July I crept up until I was at 13 mg when the movers came on July 30. Had lots of pain for 2 weeks after the move. I think I posted about that. Had X-rays of hips, showed just mild arthritis. I think my weak muscles were just overwhelmed and protesting.
To get to the point! I want to start reducing again but I seem to be afraid and anxious to lower my dose.
I’ve gotten way off my low-carb eating plan and doing too much emotional eating and finding it hard to plan and cook meals. I just don’t want to!
Oh and we had a fire scare 2 Miles from us last week! They put it out pretty quickly but It really scared me. Everything is bone dry and there are at least 2 months left of fire season. We’re in Northern California in the foothills. We moved farther up and the forest is closer now.
Im pretty discouraged that I’m back at the dose where I was at the beginning of March.
Here are my lab results:
CRP:
4/22 2.9 mg/L. (0-9)
6/7. 24.3
6/25. 7.7. After raising pred
7/30. 2.9
Sed rate:
4/22. 8. (0-30)
6/7. 27
6/25. 12
7/30.
I’ve been at 13. Mg for 5 weeks and I fell OK if I pace myself and rest enough except for being anxious. I want to start my slow taper again, don’t know why I’m so afraid since the move is over and many of my stressors have eased.
What is your advice wise and knowledgeable ones?
Hope you excuse this long and disjointed post. 💖💖
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Mstiles
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What a lot you have been through & l’m glad you’ve found a Rheumatologist that fully understands & is prepared to give a little when necessary.
So your CRP is down & you’ve been on 13mg for 5weeks, so how about one more week on 13mg & then start a slow taper to 12mg?
That doesn’t sound too drastic & probably very doable. I’m currently on 12.5mg & looking to start to drop (again)
Don’t look back on what you’ve done, at least not the stress parts, you can marvel at what you’ve achieved, we managed to move house last year, out of area & went into a Rental Property for 3months as there was a delay at the top of the chain but we got there in the end it don’t relive it as it wastes our energies.
Just take it steady, start to relax & settle into your new home.
Never feel you must reply individually to everyone who comments - one general reply at the end of the thread covers everyone. Nor does it matter if a post gets long because of details and info about your problem.
Patience - stay where you are and be sure you are stable. THEN try 1/2mg or 1mg using a slow taper approach.
Thanks PMRpro. I have both of the slow taper plans printed out and was at 10 starting the slow taper when all the stress got so bad. Actually I think I was having some problems at 10. Maybe I should try dropping .5 instead of 1.mg. But wouldn’t I still be only reducing by 10% going from 13 to 12 to 11 to 10?
I am still worried about ending up at a higher dose when I see the rheumotologist next time in September.
Oh I see why it is so difficult at the lower doses. I guess you are reducing more than 10% once you get to 5 and below.
I’m “math challenged”, a visual artist. the highest math I took was high school algebra. I got through college without a math class by being in a program that let me substitute a philosophy course in Cosmology for the math requirement.
I feel for you. I too am living with a lot of stress, but for diffetent reasons. Tapering this year has been impossible and to deal with especially difficult events I have had to increace my pred to be able to cope. Yesterday I could barely walk after the stress of saturday. I knew today that I had to drive so last night I took an extra 0.5mg and I managed.
PMR does not make our lives easy when these times come.
Your life, like mine will settle down and we will be able to continue reducing but for the time being I use pred as I need to, I try to find quiet time to meditate and I lean very heavily on the friends I have made on the forum who understand better than anyone else.
Thank you scats. Yes thank goodness for this forum. It’s a lifeline when you feel all alone, even with family.
I do have my quiet time when I write down on a card some good things that appeared unexpectedly or happened, or just gratitude for things we often take for granted. It really helps.
I just hope my rheumy isn’t upset with me when I see her in September and might be still above my dose the last time I saw her. I must have faith, as she has been understanding so far. She’s my third one, finally beginning to to have some trust.
I faced the rheumy problem last month, and I was sure she'd say you can't use pred like this. Luckily she understood and gave me another year to sort things out. I was very luck to find someone understanding. We can not be in control of all that happens to us but we do have to live with the PMR fallout and manage the best we can.
Glad for you that you have someone who understands. It adds so much stress when you have to gird for battle before a visit to the doctor. I had two horrible rheumotologists before I found my current one.
I can really empathize with the difficulties and the accompanied sense of anxiety. Just a thought that may or may not help....I find that prednisone often gives me the physiological symptoms of an overexcited system like racing thoughts, rapid pulse, noticing shallow breathing and then that tiredness and overwhelm. It helps me to think of it as just effects of the drug rather than actual anxiety symptoms. Scheduling total rest breaks helps me too. Good luck.
Yes the pred does that to me too, thank you for reminding me of that.
Resting and getting out side helps me stop the racing thoughts etc. it’s been harder with a flare going on because of the pain, fatigue etc. I had also run out of my CBD oil drops, they are expensive! And that was a factor Making the anxiety worse.
Are these as short episodes? That i what I feel like during atrial fibrillation episodes - wide awake when it is at night, brain and heart going 16 to the dozen and next day absolutely exhausted and achy because of the tension. No a/f, no problem.
Interesting PMRpro. Hard to tell. I had some episodes of irregular heartbeat, pulse, before PMR/GCA because of hyperactive thyroid. I took medication for awhile, the thyroid calmed down and then PMR/GCA showed up.
I haven’t had irregular heartbeat that I’ve noticed, but definitely the mind going a mile a minute, and a feeling of dread, thinking of a million things I should be doing, etc. etc.
If you are not ready, you’re not ready. Let everything settle. Well done for coming through. One step at a time sweetheart. You will get there. Nothing bad is going to happen. Deep breaths. 🌸🌷❤️
After reading about all the stresses that you have endured (and continue to endure), one point in your post jumped out at me - 'I’ve gotten way off my low-carb eating plan and doing too much emotional eating and finding it hard to plan and cook meals. I just don’t want to!'
I am 10 months into my PMR journey but only within the last month have I finally persuaded myself to try to take the low-carb diet thing really seriously.
I was motivated more by the need to lose weight than reduce the contribution that too much 'sugar'/glucose makes to PMR and I have, indeed, lost a few pounds but the other good thing that has happened is an overall change in my mental and physical state - I just have a more positive take on 'things' and I have some more energy.
I suspect the change has been much easier for me as I live alone and am not having to resist the temptations offered by other people's carbohydrate delights, let alone having to cook them, which would have made the switch really, really difficult.
But, if you can begin again, little by little, to resist those temptations, (treating sugary/starchy/or glucose-creating thing resisted as a serious achievement) I'm convinced that you will feel, little by little, better, both physically and emotionally.
Yes it does make a big difference. I need to do more self-talk to get back on track again. I think I can now the move is over.
I agree it’s easier if u live alone. I live with my son who has Crohn’s disease plus gout that comes and goes and he also has dietary restrictions that make it a little more difficult. But I’ll get back on track. Thanks Hildalew.
I understand. I amat 5mg and want to go to 4.5. Even though I feel I am doing OK, I have a kind of under feeling of apprehension in taking the next step. Why are you not eating carbs? There are good natural carbs and bad processed carbs. Try eating a balanced diet, but watch intake amount If you have it available somewhere, check out the May Clinic diet. Beside food information, it has some great pointers on handling stress and other problems. I am keeping two daily logs, one on health, daily activity, pill taking etc. and the other on what I eat and drink. This seems to help me.
There is a good reason we talk on this forum about low carb eating: corticosteroids.
Yes the Mayo Clinic diet is good but a quick glance suggests there is a fair amount of carbohydrate in it. That's not bad for a healthy person but pred changes the way our body processes carbs and turns them to the fat deposits almost everyone complains about: moonface, midriff bulge and back of the neck. It also triggers the liver to release random spikes of glucose into the blood and that, in combination with a moderate to high carb diet may be enough to put you into the steroid-induced diabetes camp. Low carb eating reduces both risks considerably.
The Mayo diet encourages unlimited fruit and veg - and that is a problem for us. As they say in the last paragraph of the article about it: it isn't for everyone with existing health problems.
The problem is blood sugar levels. For the first year on prednisone I did low carb, cutting out all wheat, bread, most grains, just a little dark chocolate, etc. and my A1c remained at 5.6, just at the borderline of having to be concerned about type II diabetes. It’s risen to 5.6 and now 5.7 because of carbs and sugar.
Poor you ! One of my sons is/was a diabetic. I know how you have to be very food careful. When I was healthy and a competitive runner, it was the carbs, naturally, that increased my energy. But that was a time when eating 4,000 calories a day was insignificant.
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feeling really vulnerable and so fed up
Club Zero - I think...
Follow up from Feeling Low
Numbers going up on 25 mg of prednisone…🫤
