Saw GP today, better than a visit to Rheumie!
Posted , 12 users are following.
After seeing my useless rheumie in May, who wanted me to drop VERY quickly as usual. as is not evan sure if it`s PMR...I made an appointment with GP, and have just been....she said you drop as you want, as long as you want.....whatever works for you...yipee!......but then the bombshell, why have you never taken Alendronic Acid?.....because after 5 years, you will more than likely now get Osteoporosis, if you haven`t already got it!....(had dexa 2 years ago) was ok. Told her of friend who has taken it 5 years, with poor gums etc from taking it, she agreed that`s a possibility, but it`s nowhere near as bad as osteo.....so agreed to take for 1 month to see if I can tolerate it....thoughts please, as I don`t really want to take it, but doctor said I`m not due for another dexa scan yet....
Thanks for any thoughts or experience of this....
0 likes, 88 replies
Anhaga linda17563
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Yes, first thing is an up to date scan. I had a diagnosis of low bone mass early on in my pred journey (aka osteopenia) and dr urged me to take AA, particularly after she went to an osteoporosis workshop! I refused and in the course of one year improved my bone density from -2 to -1.6. Please note that I was on pred the entire time, more than half of the intervening year between scans at a level of 5mg or more, the level at which it's felt pred can have a detrimental effect on bone remodelling. I takethe usual supplements plus Vitamin K2, and do lots of appropriate exercise.
ricky23486 Anhaga
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Anhaga ricky23486
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ricky23486 Anhaga
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ptolemy linda17563
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Michdonn linda17563
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eddylynn36538 linda17563
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kathy67492 linda17563
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linda17563 kathy67492
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Michdonn linda17563
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Dexascan in the fall. Still walking every day hoping not to see any sign of
bone loss in the fall.
linda17563 Michdonn
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Michdonn linda17563
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Thanks hope we are both on a path to recovery.🙂🙂
jean12178 linda17563
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Rheumy is trying to lower my prednisone from 15 mg. She told me to go from 15mg to 10mg . I tried and was in pain...so I went to 12, then 13, and still in pain in the lower back and shoulders. This morning I took 15mg and by noon, I had no pain. I have an appointment with Rheumy this Wednseday and she expects me to be taking 10 mg......what do you suggest I tell or ask her ??? and what if she tells me to go to 10 regardles of blood work and pain? ( My CRP was near normal a month ago, so that is why she told me to lower pred dosage.)
Anhaga jean12178
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And, Jean, your experience is why we have to go by symptoms not bloodwork! Your CRP is normal because your pred is doing its job. You may be ready for a reduction, but if you are anything like me, 1 mg will be enough. Going to 10 from 15 was 33% reduction, and it's advised not to reduce by more than 10%. Have you looked at some of the resources available on the front page of this forum?
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
BettyE jean12178
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From 15 to 10 in one go is a big step down and your symptoms are surely telling you and hopefully yor doctor that it is too much. What Anhaga says is what many of us would agree with from our own experience.
Your doctor is there to advise not to bully you and I think I would feel inclined to quote the info you have from this forum. It's all very well for professionals to regard themselves as experts but, as they are dealing with live creatures, the enlightened among them will allow for individual variations.
Michdonn jean12178
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EileenH jean12178
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And while you are looking at the resources - scroll down to the replies to find the "Dead slow and nearly stop" reduction approach.
Of course your bloodwork is good - you are taking enough pred to manage the inflammation and so the body is not producing any of the proteins that increase the ESR and CRP readings. If the pain you experienced was immediate it is more likely to be steroid withdrawal than the PMR. Tell her what happened and also say you have heard of a slow reduction scheme being used in a clinical study in the UK which has been recommended to you by several people and ask if you may try using it. 1mg at a time is probably enough - but if she is insistent agree to trying 2.5mg but using the slow approach - it takes about a month to reduce the entire step, depending on where you start. It saves your body from the shock of the reduced does - which produces symptoms so like PMR you can't tell if it is a flare or withdrawal.
For many people with PMR the 5mg drops are far too much - even though they do work for many people in other illnesses. I don't know how long you had been on 15mg - but more than a couple of weeks and a 5mg drop is hard.
Anhaga Michdonn
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I'm soooo lucky my doctor told me 1 mg per week, which meant when I got to the point where pain started to return I didn't have far to go to find the sweet place again, and then adopt the dead slow taper, which she was quite happy for me to do. But it was this forum which told me I could in fact go back to the sweet place for a bit, then start the slow taper.
Anhaga EileenH
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And your motto: It isn't slow if it works!
Michdonn Anhaga
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jean12178 EileenH
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EileenH jean12178
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Part of the raised BP at lower doses of pred MAY be that the blood vessels are inflamed and, as a result, narrowed - and the fact the pain has returned adds to the suspicion. It is a not uncommon phenomenon for patients on their starting dose for any length of time to see previously raised BP fall.
That's why it makes sesne to get all parameters stable before starting to reduce at all and also reducing in small steps.