I was happy with the Rheumy's December 12th plan to "taper down" from 60 mg of Pred to 30 mg, (dropping 5 mg a week) and then slowing down and re-evaluating at 30 mg. 60 to 55, no problem. 55 to 50, no problem. 50 to 45... but throw in Christmas, seasonal stress, too much red wine, increased activity, non-routine sleeping schedule and WHAM, apparently a big freaking problem.
This past week has seen the return of a mild headache, a tiny tinge of pain in my temple, a slight band of tightness and achy, tension across my shoulders, neck, upper back and collar bones, and an annoying migratory pain that moves from the right hip, to the left hip, down the leg and back up again.
Hmmmm? "Hey Doc..." Let's talk.
31 Replies
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Good stress bad stress just the same for me..i am sure you have worked out to stop taper...perhaps even go.back to where things were a bit better. Hard when dose of pred high. Taper smaper indeed. Where did you find my Xmas photo??😉
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Hahahahahaha! I LOVE your Christmas photo!!!! It's a KEEPER! And yes, I will call Rheumy today and let her know I don't think dropping to 40mg tomorrow, as planned, is the best course of action! : (
I know they like to get us down especially those with GCA on high dose but it's only about 1 month from dx is it? Make sure you rest a bit too.
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Yup... officially diagnosed in early December by GP, confirmed by Rheumy on Dec 12. I have no choice but to rest! : )
Hello. Sorry that you have hit stony ground. I’m not surprised and I suspect you are not really. So many of us hope that somehow we will buck the trend and be able to push it both in activity and reducing. I really do understand that yearning to get off high doses.
In my own experience with GCA a week is too short a time to know if I’ve got away with it after a reduction. It’s more like week 2-3 and after any withdrawal in the first week has gone and there are NO GCA niggles. I’ve also done the bargaining thing where I say to my self that I’ll go fast to point A and then I’ll go more slowly. No to that as well for me. It’s like jumping off a cliff and hoping there’s a ledge half way down.
5mg was too much really even higher up the dose ladder. I was on 40mg for six weeks before on docs instructions, then two lots of 5mg over two weeks each. Then I did 2.5mg drops to 20 every two weeks, then 1mg to 18. Due to a big holiday I sat at 18mg for 5 weeks which though disappointing felt I had time for my body just to take stock. Since then have done 0.5mg a week but no more than 2mg a month. So, 9 months down the line I’m at 11.5mg. The Rheumy told me off for not being in single figures by Sept, but I said it was better then having flare and to keep going back up. After a load of scare tactics, he ended with telling me to carry on with my plan. None of this was how I was led to believe it would go and how I thought it would be. The lack of precision and predictability still irks me sometimes.
I’m not telling you to go against your Rheumy’s advice, just that your body my well have it’s own ideas and it is a case of discovering what they are.
I hear you and I agree... I'm only 6 weeks into this "journey to hell" and had nothing to compare her recommendations to. It sounded like a good plan, if not a little aggressive. And "yes," I had hoped I'd be the anomaly! Thank you for sharing your experience.
Please don’t take this as a slap on the wrist, we all know what it’s like. Those early weeks were hell for all sorts of reasons. It gets much much easier when one finally lets go and embraces having to slow down and not being in control. Higher doses of Pred don’t lend themselves to being all Zen and at one with everything, so it is a bit of a tall order at first.
I have thought more about what you said and you are 100% RIGHT! I am still fighting this with every fibre of my being. I am constantly raging against these hideous diseases 24/7, mentally, physically, and emotionally. I am subconsciously denying their very existence, which is giving them more power over me because they are so very real. Thank you for your insight!
Fighting against them just makes it worse. Acceptance is the key to having a half-decent life with PMR/GCA. Once you stop expending all that energy you can devote it towards learning how to accommodate their demands - and eventually you can anticipate them and head them off at the pass...
PMRpro is right, you do suddenly feel much better when you let go. Trouble is with raging against IT is that IT is your poor body gone a bit wrong not some external invader. It’s doing its best so pour your energy into nurturing it and I don’t mean in a controlling way either, another easy pitfall. All sounds so easy, but surprisingly not but you are early days, honestly.
It's also a reason you need ENOUGH pred at later stages. Even if it is just niggles, when you hurt all the time it pulls you down and makes you even more sensitive to the pain.
I hear you and I am acutely aware that this may very well be a "life lesson." I will either accept, submit and learn the lesson... or I'll be presented with it next time around.
As a post GCA guru, would say 5mg per week is much too fast! It doesn’t give you chance to ascertain whether each taper is enough to control your inflammation - so you go past your level required.
You may have felt alright at 55, 50 and 45, but unfortunately you can’t say which level was really okay because you flew past those levels like an express train!
Throw in Christmas and it’s a disaster waiting to happen. 🚂 As you’ve discovered you end up hitting the buffers.
Oh dear, mamaicie, you've have just learned one of the hardest lessons where PMR and/or GCA can sadly come back to bite if we don't give it the respect it unfortunately commands. As Poopadoop has already said, any stress, whether good or bad, can have such repercussions.
As Dorsetlady has alluded to, your reductions, though small, have been very close together, not giving your body chance to really see if one reduction has worked before embarking on another. This approach might work for some but not for everyone, especially in these early days of treatment
The hip and leg pain you are experiencing sounds like sciatica - if you can find a good Bowen therapist in your area, a few sessions can help to relieve the pain. It worked for a couple of members of my support group when they had similar pain.
You might find that simply resting for the next week or two may be all that you need to get back on an even keel with your other returning pain - certainly don't consider any further reductions at this stage, and if you have any problems with your vision don't hesitate to go immediately to A&E/Emergency Room. Good luck and I do hope you feel better soon.
Thanks for your advice. I'm a "newbie" at this and trusted the GP and Rheumy about the tapering frequency and dosage... "Fool me once," as they say. Nope, definitely not sciatica, for sure. Been there, done that, got the tee shirt!
It is somehow related to the PMR/GCA, because in the first two weeks of my initial diagnoses both my hips and fronts of my thighs were extremely painful; I could barley sit or lay down for more than a few minutes. The only relief I got was from standing or walking… but right after I started the steroids it went away. Haven’t had it at all, until past week where I get tinges every now and then.
Ahhhhh, well… this too shall pass and I will learn to be the master of my destiny, and learn my limits! : )
Tapering reminds me of the Lucy and Ethel chocolate factory episode.
We can’t see what the (inflammation) production team is doing. We can only hope we are putting enough workers (Pred) on the line to handle the demand. If we don’t put enough workers on the line or pay careful attention, we can get into trouble.
Wouldn't it be nice if drs actually read this. Think how much stress could be avoided for newly diagnosed with GCA. It's bad enough doing quick reduction with PmR but consequences could be so much worse for GCA.
Five 5mg A WEEK is far too fast even with high doses in GCA - 5mg every 2 weeks maybe. I think it is more likely that this is steroid withdrawal than PMR as you are still on well above the PMR dose.
The wise ones's have had their say and I heartily agree with the sentiment that dropping five milligrams every week is far too fast. I only have GCA but my reductions when I started on 60mgs were 20mgs off after the first month, then 10mgs off after every subsequent month. A couple of blips in the period meant that after seven months I was down 10mgs then the yo-yo effect started and I've been bouncing around up and down ever since. I've been on 8.5mg for the past 2 months and have just started my fifth year of GCA. I'm a bit different but I won't bore you with all my other conditions, suffice to say that I developed Osteoporosis again on a high dose of steroids after I thought I'd waved it goodbye with Testosterone Replacement Therapy. A Dexa Scan with Osteoporosis is horrible and my bi-annual one is approaching now we are in 2018. Hey Ho anyway its my opportunity to wish everyone a happy and healthy New Year and recommend Mark B's sensational book "Write Me Funny" as a jolly good read. I don't think I've stopped laughing since I first read it.
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