Hi, everyone! I went on 60 mg of prednisone today and heard taking Vit K was good for me. How much would be safe to take? I've already been taking Vit D 4, 1800mg of calcium w/ magnesium & zinc. I've also been taking Folic Acid and Omega 3 Fish Oil. It's only been 4 hours since I started, but tomorrow I want to get a real head start! It's almost tomorrow for most of you and almost bedtime for me. What a long, but very successful day! I'm on the road to wellness!
My pred regimen is 60 for 2 weeks, 40 for 2 weeks, then I taper 10 mg a week.
Thanks all!
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pollymarierose
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Pred is the treatment for both GCA and PMR, it just the dose that varies.
Your regimen is very quick! You will need to be be very careful you don’t go too low too quickly.
The idea is to use the large amount (60mg) to get the inflammation under control - and 2 weeks may be long enough, but 4 would be better. Then you taper to find the lowest amount that gives you the same level of relief that the initial dose did. If you go to quickly you are likely to go past that level without realising it.
Ideally you need to stay in each dose for a least 2 weeks, again preferably a month to ensure that dose is controlling symptoms.
You may be okay, but I fear you may have problems, so please keep a diary and if you get a return of symptoms you need to speak to doctor and tell him so.
It’s Vitamin K2 you need, and whatever the recommended daily dose is.
Just wanted to reinforce DorsetLady's comment - that is a very fast reduction and do be watchful for a return of symptoms. Research has shown that the underlying cause of the GCA inflammation is still active after 6 months of treatment with doses above 20mg. Most regimens would keep you at or above the 40mg level for a month for each dose.
If you drop below the level you need, it can take a week, maybe two for the symptoms to return.
However, if you feel a bit rough immediately it might be steroid withdrawal, that usually comes on next day and last 3 or 4 days until your body get used to new lower dose.
On very high doses I found all pain went! The idea is that it does, but some do have a little.
If you reduce too fast, in the sense of too big steps, then you are likely to suffer steroid withdrawal discomfort/pain which is often so similar to the illness for which you are taking the pred that you may not be able to tell which is which so, thinking it is a flare, you increase the dose again without needing to. If you reduce too often then you may miss the right dose for you now, and by the time the inflammation builds up enough to cause symptoms you have no idea exactly where it went wrong so don't know how far back to go.
Steroid withdrawal pain appears immediately you reduce the dose to the new level, it is your body protesting, and it should improve over the following week or so as your body gets used to it. Some people take weeks though and say they never feel really well if they are told to reduce in a relatively big step every month going from every day one dose to every day a new dose from one day to the next. Spreading the change over a few weeks, as you see with the slow approaches we talk about here, means you just have an odd day at a time where you feel bad and can still function in the meantime.
If you overshoot the dose you need then the symptoms will return because the inflammation is uncontrolled again - and generally you find that the disease activity is higher in the early days after diagnosis so you need a higher dose then than you will later on. Often the GCA symptoms will all go away at the starting high dose and if they do that is your guide - andy return of the symptoms as you reduce is a sign your have gone too far. But for some patients some aspects of the GCA never really settle, the same as with PMR, and you have to be aware of that. However, if you start on a moderately high dose (40 to 60mg for example) and the GCA symptoms don't reduce significantly within a few days at most then you must speak to your rheumatologist urgently about whether you require a bit more. If you develop any visual symptoms then you don't wait - that is an emergency and needs immediate medical attention.
But it is impossible to say how long it will take - if you drop to far too low a dose the symptoms will return more quickly than if you reduce to slightly too low. That's why you should stay at each dose for at least a couple of weeks before trying another reduction and be honest - don't deny that this headache could be the GCA resurfacing.
Remember, the pred does nothing to the actual autoimmune process disease process, all it does is mop up the inflammation created by it. The disease is going on in the background all the time, that is why you feel unwell, very often as if you have flu, all the pred is doing is managing the symptoms so you have a better quality of life AND, in the case of GCA, reducing the risk of you losing your sight. If you reduce the dose too far too early then that risk returns together with the other potential risks of stroke or other cardiovascular problems.
Thank you, PMRpro. I have no joint pain this morning, and finally no scarey GCA symptoms. I do think my body is going through an adjustment to the prednisone. I've got a headache, but it's a good old fashioned headache and my body aches like a good old fashioned flu.
After, I figure out how or if I can trust this new, textbook only, rheumy, I'll be knowledged on pred reduction. I'm also looking for a new rheumy. Mine was willing to gamble with my life all because my numbers didn't match my symptoms.
When my new rheumy ignored my symptoms, I went to emergency. It was such a blessing because the doctor new everything about pmr/gca and said she didn't need lab results to know I should have been on prednisone a long time ago. She sent the report to my rheumy on Saturday and he didn't even call me today. He's my fired rheumy now. I have an appt with a new one and my gp will handle my dosage as long as we work together on it. I cannot believe how much better I feel!
It took a lot of urging from my PMR friends. I think I was afraid of being ignored again, especially by a specialist in this field of medicine. Finally I realized my rheumy was gambling with my life, but I wasn't going to.
I live in the US in Oregon. A very green, very wet state.
I am assuming you have been diagnosed with GCA as you are on such a high dose. I have had it for five years and am still on steroids. It’s a long and often frustrating road so as DL and PMRpro say take your time and whatever you do reduce slowly.
You will get the best possible advice on this Forum, do keep in touch and let us know how you are getting on
I had PMR first for at least 4 months before GCA. My rheumy was slow in getting around to diagnosis (bloodwork and wait for results), meanwhile my life was in his hands. So, on-call rheumy yesterday said go to Emergency. An hour later I was on Prednisone. As an added bonus, 7 hours later, most of my PMR pain was gone! Hmmmm 🤔
Oh yes. I've been taking Calcium with magnesium & zinc (though I need to check if I 'm getting the proper dose of M). But I did start taking my Calcium separate from other supplements today.
and pollymarierose , I believe there's still no definitive proof one way or the other. The effective dosage for each is very different. MK-4 is found in animal products,like the grass-fed animals - meat, dairy, eggs, while MK-7 is in the fermented vegetables, included fermented soy, natto, the source of our supplements. Both are good for us, but I think the dose required of MK-4 is considerably higher. Vitamin K2 appears to be a very safe supplement, haven't heard about any issues with overdose as one does with other supplements like Vitamins A or E so any food sources should be fine, and I trust the supplement makers to provide a sensible dose. Only "official" recommendation I've heard of- someone said Australia suggests something like 180 mcg Vitamin K2-MK7 per day, so anything in that area should be fine.
I love Tokyo. I love Japan... but Natto... not so much! Ha. If you have been to Sweden and tried surstömming you might have an idea about Natto... not sure which is worse! haha. NO offense to you Japanese and Swedish lovers of your native foods!! Just my overly sensitive tastes! KYOTO is the best place of all! although everywhere is wonderful.
My father was fond of a kind of cheese called Limburger. It stank so horribly I could never get it close enough to my face to try it! He used to take it out onto the balcony of the place where they were living then, saying he was going to "unleash the Limburger".
I've been to Japan before - the meeting has been there some years ago. OH has been twice. Was a bit disappointed at the meeting as they had 2 evening things that were French food! The Sapporo brewery evening was good though (I don't do beer, I do do sushi )
It seems that Vitamin K2-MK-4 is very important, the body actually converts MK-7 to MK-4, but this study indicates that MK-7 is a better supplier of MK-4 than MK-4 itself! So we are safe to take only MK-7 in supplement form, but also confident that a good supply of MK-4 through animal products (and only grass fed animals will give it to us, grain fed animals can't) is also going to be helpful.
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