So I started tapering in Sept. from 15 mg 1 mg at a time until I hit 10 mg. It went well and I took 2 months for that phase. After a month at 10 I started down again at 1/2 mg every 3 weeks. Down to 9.5 went fine, but a few days after starting 9 I got the old ache in my left jaw, not real bad, just kinda reminding me of where I WAS in the beginning. After a few days it went away. But...now at 8.5 and the jaw is worse, sometimes it really aches plus my upper arms are a bit achy, and weaker and my neck is aching again. Not bad, just a reminder, again. Not sure at this point if I should stay at 8.5 and see if it goes away again, or go back up to 9. Withdrawal symptoms or PMR pain?
And I am sooooo tired. I go in for blood work tomorrow. Would love to just lie about but my hubby insists I help with my honey do list. LOL He knows how picky I am. If I don't move, he doesn't either. LOL
My Rheumy is pretty flexible. He wants me to come down to zero fairly quickly and I told him I wanted to take my time. He said OK.
I am so blessed to have found this group. I read all the posts and don't feel so alone in my struggle. Some I can relate to and get lots of good info to help me through.
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Dydee
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“Withdrawal symptoms or PMR pain?”....very often difficult to tell.
Usual advice is is pains come on straight away last up to 5 days max, then steroid withdrawal.....if they come anywhere between 5-10 days then probably too low a dose. But tge can overlap - hence the difficulty!
Note - steroid withdrawal can be almost pre Pred like, but might just be feeling off colour, irritable etc.
Just a reminder? You shouldn’t be getting that if you are on the correct level of Pred for your illness - you are not reducing come what may, you are trying to find the lowest dose that gives you same relief as initial dose.
Personally I would try 10mg initially, but it may not be enough - you’ll need to try and see....9mg was borderline from what you say.
Below 10mg is always more difficult than you realise - so 1/2mg every 4 weeks, but only if no issues.
Your ‘honey do’ list needs amending to accommodate your illness, not your hubby!
Thank you DorsetLady. OK, so I should be staying on the 1/2 mg taper dose for 4 weeks instead of 3. I have noticed my jaw thing usually hits around day 4 -5 then increases for a few days then goes away. Like I told the others, yesterday, day 10, was the worst now today it is like the first day it hit me so on it's way down. I can wait until I have been discomfort free for a longer period before tapering again. Maybe 4 weeks after symptoms disappear again? Not racing to get to zero, but at 78 want to get to my minimum before permanent damage is done.
I always think 4 weeks is better than 3, it gives an extra week to make sure current dose is really enough before you reduce.
What permanent damage are you thinking about in regard to steroids?
Highly unlikely at the doses you’ve been on...many of us with GCA have been on much higher doses over the years and have come through with no “permanent ” damage from the drugs. Ok we may have temporarily had higher blood pressure readings or blood sugars readings along the way, but they usually return to normal once on lower doses.
That makes sense. More time between tapers is my new goal.
I was thinking in terms of bone loss mostly. I do have increased blood pressure, increased eye pressure and of course the weight gain and puffy face. LOL I know, low carb diet! 😀
Yes, I have been on drops for a few years now but the Pred. drove the pressure higher than what my regular drops could handle so doc switched me to more expensive drops. LOL They worked. Last visit to him pressure was great. I think because of the tapering though because I was horrible at remembering the morning drops. 🙃
But you can only get down to zero when the underlying autoimmune cause of the symptoms has burned out and gone into remission. You are not heading relentlessly to zero but for the lowest effective dose and I'd say that for the moment, 9mg is it. It doesn't mean you won't get lower - just not yet.
If it improves after a week that is fine - but if it doesn't or is getting worse with time don't wait longer. Go back or it will be much harder to get under control.
Thank you for the reminder. LOL Yesterday was the worst day with jaw and neck pain this leg of the taper and today it was quite a bit better. Day 11 of the taper from 9 to 8.5. Even my shoulders feel better today. I guess I will stick with the 8.5 until symptoms tell me otherwise. And yes, while zero sounds wonderful, I realize that may or may not happen. I'm really hoping that the fact that the stress that took a hit on my immune system is now gone, will allow my PMR to go into remission.
Yes, I drop .5 mg drop straight out. Never thought about staggering the dose. I'll try that right away. Plus, I started taking my Pred. at bedtime, about 11:00 PM Been trying that for a few days now and helps me move better in the morning. Sure feel it at bedtime though but easier since I can crawl into bed and forget it.
OK, I'm going to start staggering my reductions instead of going a full 4 weeks at the same lowered dose. Especially going down from 10. My jaw ache is still there, just a dull ache but annoying, LOL and I have had a dull headache for about 4 days now too. Just enough to cause me to think about it. Went back up to 10mg last night from 8.5 and will stay there a few days and see what happens.
I got my bloodwork results back today and the only thing that seems to have gone up inflammation wise is my WBCount went from 8.6 to 9.0 and Absolute Neutrophils from 4.63 to 6.12. My inflammation markers actually went down a tiny bit in the low normal range but my potassium is up quite a bit at 5.6. Otherwise everything looks pretty good.
That is pretty high - I hope they are checking the potassium asap? There are all sorts of reasons for it to be a technical problem - but you can't assume that.
He felt that our diet attributed most of the slightly high reading but also perhaps the fact that I hadn't had anything to drink for 24 hrs before my blood draw. Our orange trees are rich with fruit and we have fresh orange juice every morning, the tomato vines are loaded with winter tomatoes (an experiment I am shocked worked) so eating plenty of those and we are big banana eaters. Checked all supplements and none contain potassium. He will keep an eye on it he said.
No, I have not been diagnose with GCA. Not sure what the symptoms are but my docs don't really seem to be pro active in questioning me about symptoms. At my very worst my symptoms included the aching in the left side of my neck and left jaw, so bad that my bite would be off. It felt like I had a bad molar that was swollen in the jaw and I had a hard time chewing. Of course that went along with the shoulder, upper arm, low back, hips and upper leg pain all on both sides.
What is funny is that it seems to build, starting mild, next day a little worse, etc. Yesterday was my worst day this time around and today it was much milder. Still there but didn't bother me so much to chew. Day 11 of my taper from 9 to 8.5 mg.
Thank you so much!! I never considered GCA but now that I read the symptoms I wonder..... At the worst with PMR I had major neck and jaw pain but it never affected my eye site nor did I have headaches. In fact, I just don't get headaches normally. But the last 3 days I have had an aching neck, dull headache, especially in my temples and the ache in my left jaw which has improved since it peeked a couple days ago. I have to call my Rheumy tomorrow and will mention all this. Will be curious to see what my blood work from yesterday shows.
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