Fostepor once weekly 70mg

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Happy new year to all of us.

I'm a 59 year old male, started prednisolone on Dec 16th, 20 mg now on 25mg and still have very sore shoulders and arms but able to walk, did 3 and a half miles yesterday. Woo hoo.

my rhuemy prescribed Fostepor (alendronic acid) and after reading the warnings and side effects got a bit worried. Very common side effect was severe joint, muscle and bone pain. I've just started taking Pred prescisly because of that sort of pain. Has anyone got any advice or reasurance before I start taking this. I, like most people I'm sure, have always shied away from taking drugs unless nessasary so would like to hear as much as I can before I start popping pills.

 

Peace

Ron

1 like, 37 replies

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  • Posted

    As the others say don't take Alendronic Acid until you have had a Dexascan and it is proved that you need it. However do take vitamin D and calcium supplement if your doctor has not already mentioned it. Did the pred act like a miracle? You may find that you are overdoing things PMR is very unforgiving and if you feel fine it can come back and bite you for being too active. It is life changing in how you live day to day. Although men often seem to be better off than women, so you may be lucky.
    • Posted

      I'm pretty much not going to take it until I have some new information. I am taking a calcichew and am more aware of my diet.

      Yes the Pred did work like a miricle but I don't think I have been overdoing  it. I'm walking about three miles a day which is fine for the moment. I was fit before running and cycling so have always been fairly body aware. I'm on 25 mg but my shoulders and arms are still a bit of a problem. I'm wondering if increasing to 30mg for a couple of weeks to see if they improve would be benificiial or whether I have a "tandem" problem similar to my bad back.

    • Posted

      The trouble is you often do not know you have overdone it until after you have! 30mg sounds quite a high dose as PMR tends to improve things at fairly low doses unlike other ailments. The normal starting dose is 15mg and sometimes 20mg. Improvement at higher doses can mean it is possibly something else.
    • Posted

      I would like to say that we all have different chemical body make ups.  I started at 40, am now 30, doing well.  The dose has to be individualized

      accodring to my knowledge.

    • Posted

      I agree the dose can vary, but normally people are given 15mg and sometimes 20mg for PMR, if you start on a higher dose it may improve the symptoms but you may not have PMR. The thing about PMR is that it does react miraculously at a lower dose while other things do not. Of course GCA is started at a high dose.
    • Posted

      When my MD suspected PMR he put me on the prednisone deceasing  dose pack, 24mg  ths first day gradually down to 2 mg. the 6th day.  Thke first day did wonders, the 6th day I could feel more stiffness.  That seemd to clinch the dx of PMR,
    • Posted

      That sounds good. Another method is to give people vit C for a week, then pred for a week, then vit C and see the results. I think your doctor's system is better though.
    • Posted

      I was on 15 mg for one week.  When this worked I was kept at that dose (no break) for a month before starting a relatively slow taper of 1 mg per week.  
    • Posted

      YOU may not think you have overdone it - the PMR may think otherwise! 

      The pred does not "cure" anything - it manages the inflammation that is the cause of the symptoms until the inderlying cause, an autoimmune disorder, burns out and goes into remission. Pred is only part of the story - your muscles remain intolerant of acute exercise and the other part of the management of PMR is to pace yourself and avoid or modify the activities that make things worse. 

      It is possible however that you also have myofascial pain syndrome - it is common alongside PMR and is caused by the same inflammatory substances, cytokines, except instead of being systemic, all over the body, they are localised in what can be felt as hard knots in the muscle groups, typically in pairs aongside the spine. One pair is found in the shoulders, one pair about rib level and one pair in the low back, They can lead to the surrounding muscles becoming tense and hard and even going into spasm to protect themselves from further damage/pain. When they do that they can pinch or irritate nerves and that gives rise to referred pain - typically in shoulders and upper arms, into the ribs or into the buttocks and upper legs depending on which area is affected.

    • Posted

      Should myofascial pain respond to pred. I am trying to reduce slowly but after lab work my rheumy phoned me to increase my pred by 2.5 as my sed rate had gone up. Problem was I had just started a lower dose of 10 mg so I didn't get relief from the 12.5. I have had the usual hip and shoulder pain for 6 weeks now with a sharp pain on left back around shoulder blades. Limits so many things such as getting dressed. So when my family left after holidays I was in so much agony (doc offices closed over holidays) I added 10mg of pred when I went to bed.  Just the once. I didn't get the miraculous relief I was hoping for but some days it's not quite as severe. Going without struggling to put the dreaded bra on helps a bit. Doc appt soon so hope lab results are good.  Thanks Eileen for all your informative info. 
    • Posted

      Perfect description of everythings.   Excercising is difficult and for 2 years I looked at a wall.   the myofascial pain is so real and can be worked on by a good  physical therapist. Surrounding uscles for sure!  I am going to copy your description for future reference.  Thanks again Eileen.Wish wise doctor would speak such sense.
    • Posted

      It sometimes does improve at higher doses of oral pred - and then returns as you reduce the dose. It often responds well to local steroid injections which give a higher concentration where it is needed. The trigger points can also be mobilised manually by a good sports massage therapist or physiotherapist - but not using exercises until the problem is sorted, trying to do repetitive exercises just overtaxes the spasmed muscles initially. I and quite a few others on the forums have found great benefit from Bowen therapy - a complementary therapy which is also used by mainstream pain clinics to help manage chronic pain. Google bowen4life for information including a video  - and "bowen therapy therapists list" to find someone near you. It may look as if such a apparently simple and innocuous therapy can't possibly achieve anything - it is surprising. It doesn't help the PMR itself but it does seem to help at least some with the "add-ons" and removing even some of the pain is always a positive. If you haven't experienced at least some benefit in 3 sessions you probably won't so it isn't an open-ended commitment although one lady said she went back and had weekly sessions, then every 2 weeks and then monthly and the problems did improve slowly after not doing much in the first 3 sessions.
  • Posted

    Hi Ron,

    I contracted PMR the same age as you and now into year three and finally made it to 10mgs of Pred, albeit with a little pain still. Much like you, I took Alendronic as prescribed by my doctor and had the same side effects. I always felt ill after taking it, so I stopped. I am very diligent in taking a daily dose of Calcium (1200) and Vitamin D (800) and my bone density is holding up very well. If that were to change then I would likely try Alendronic once again. 

    Good luck with whatever you decide,

    Shawn

  • Posted

    No idea at all as to the a acid.  The Prednisone should have been miraculous at first. I remember that pain. I had to go to 40 and more a couple of times. Good luck
  • Posted

    Hi ron

    Been on prednisone since end of September 20mg now 17.5mg.

    My rumi put me on a once a month bone pill and before I took it I to looked up all the sideeffects and it scared the be jesius out of me. I read that it came in a weekly dose and you may have less side effects which my pharmacist concurred.

    I had a GP appointment the same week and discussed it with him and he said "no one will win a nobel prize over this" un quote but he gave me a script for weekly. I filled it and took it and was sick with flue like symptoms. That was the first and last.

    I eat lots of calcium rich foods, cheese till the cows come home and exercise. My bone scan at the onset is vg, so we will monitor.

    I love my gp and respect him more than my rumi and believe him in saying it's not worth it, at least for me.

    Good luck

    Mariane

    • Posted

      Kind of shocked that if your bones were very good at onset you were still put on a "bone pill".
    • Posted

      I agree. I am appalled at the way doctors give people "bone pills" without checking their bone density first. It seems they think you are taking steroids, steroids can cause osteoporosis, therefore you should take a pill.
    • Posted

      That's what they were taught at a critical point of their training: all post-menopausal women are likely to have reduced bone density and if anyone is on steroids that makes it all worse. What they learnt then is difficult to "unlearn" - and we meet with the result. No-one ever told them that only half of patients on pred develop osteoporosis. There is some thought that the figures of what is osteopenia and what is osteoporosis were just sort of pulled out of thin air - that there weren't any real studies that showed it one way or the other. Patients who are "osteoporitic" don't break bones, patients with "normal" bone density do. The incidence of hip fractures has been falling for the last decade anyway - and not entirely because of Fosomax and friends making lots of money for their manufacturers. It is far more complex than taking a pill - but they don't see it that way.

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