Zero Prednisone achieved - maybe spoke too soon??. . . .
Posted , 19 users are following.
In a previous discussion here, I speculated on whether continuing on a really low dose of Prednisone (as opposed to stopping completely) may have some protective effect re. preventing a recurrence of PMR. . . As far as I know there is no evidence to support this but maybe????
After 4 and a half years on Pred. and reducing very carefully and slowly, I decided to stop my 0.25mg. on alternative days and I felt confident to finally say goodbye to it altogether in Jan. Then followed a really savage Aussie flu' which took a few weeks to get over and left me pretty shattered but am now fine. However, just 2 weeks ago those familiar upper- arm aches started, just mild, but a cause for re-thinking . . . Could there be a link with the 'flu?
Can anyone advise me here? Should I wait and see if it gets worse OR should I start back on Pred. even at low dose? I'm not being precious about taking Pred. and I'm sure many of you would just love to be on a low dose, but my difficulty is that I also suffer from OP and Pred. is really not good for the bones. Would be grateful for any suggestions. Thanks.
J
0 likes, 24 replies
BettyE Juno-Irl-Dub
Posted
When I had a hip replacement op nearly five years ago I had been on Pred. for more than four and a half years and was down to 1mg. Part of the pre-op was an interview with a pharmacist ( not sure if that is offered to everyone or whether it was because of the pred. ) She said on no account o stop my 1 mg. until I was signed off by the surgeon six weeks after the op. and then to do it gradually. This I did and, nearly five years later, all still ok.
When the dreaded bug hit you, you had only very recently got to zero which rather backs up the advice I was given. Any added stress seems to be more than our bodies are ready to cope with.
Not qualified to advise re going back to pred. or at what dose but it probably isn't a good idea to let the symptoms get a hold. What does your doctor think?
Juno-Irl-Dub BettyE
Posted
Hi BettyE, Haven't discussed it yet with the doc. Have just had a blood profile test last week, which I suppose would include CRP (inflammation marker). This was advised a few weeks ago after the flu' and only last week got around to it. Your view about so recently having got to zero when the flu' struck makes perfect sense.
Thank you. J
Anhaga Juno-Irl-Dub
Posted
Juno-Irl-Dub Anhaga
Posted
Kind regards, J
pam48607 Anhaga
Posted
How did you improve your bone density while still on Prednisone? Was it with Vit. D and calcium alone? Were you taking any bone-building drug? Curious because I have OP pretty badly and my doctor wants me to do the Forteo injections (daily), but I am resisting. However, I did have a T8 compression fracture in December, which is why I am wondering about your journey with OP.
Thanks,
Pam
BettyE pam48607
Posted
I was on pred. for eight years altogether ( two bouts of PMR five years apart ). First time I was given Calceos ( calcium and Vit. D ), second time tried, but could not tolerate, Alendronic Acid and so back to Calceos.
When I had a hip replacement right at the end of the second dose of PMR the surgeon told me that, for my age, ( eighty at the time ), I had " amazing bone density"... his words. Obviously Calceos suited me but who knows? Perhaps it was even more amazing before taking steroids. Never was offered a Dexa. Just luck? Genes?.
I, too, have pretty bad OA and have had for more than twenty years.
Anhaga pam48607
Posted
Hi Pam. I took no bone drugs. A friend of mine who had improved her bone density (she started out with osteoporosis, improved to "osteopenia" and continues to improve without any drugs) told me about Vitamin K2 and suggested Nordic walking, among other things. I read up about Vitamin K2 and started taking it, and I also took up Tai chi and Nordic walking and I wear a weighted walking vest. I was eating a pretty healthy diet anyway, especially after the PMR diagnosis, but I added a lot of fermented foods (slowly, the gut has to adapt) and eat loads of leafy greens. I have to tell you that I started out with "low bone mass" which is also called osteopenia. I never had an osteoporosis diagnosis. But my friend did start out with an osteoporosis diagnosis.
I know there are some other people posting on the forums who have had vertebral fractures and still reject the drugs. I would never advise anyone one way or the other if they are in this situation. However, if one were to opt for the drugs I'd suggest taking them for only a couple of years, to gain the most benefit with least possibility of bad side effects, and also doing all the natural things. It does seem that although bones respond slowly when compared with medicines like prednisone or antibiotics, nevertheless bone density does improve (or, sadly, deteriorate) measureably within a few months to a year, so what ever you do will have results sooner than you'd expect. I know I hoped for a positive result but I was really happy that the improvement moved me out of the range where drugs were recommended. I'm not eligible for another scan for several years (the first two were a year apart) but I'm going to carry on and hope that all remains good!