Hi, Has anyone been diagnosed with Osteoporosis with their Vasculitus? Particulary Churg Strauss?

5 weeks after my sister was diagnosed with Churg Stauss at 37, she has now just been diagnosed with osteoporosis, but they can't treat her for it until her preds are down to 5/10mg. Any insightsor answers much appreciated!! Thank you!!

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  • I was diagnosed with Churg Strauss in 2003 after a 'stroke type event'. I've been on prednisolone for much of the intervening time and a recent flare has put me back on 30mg daily.

    I've been taking allendronic acid weekly since I started on prednisolone. My most recent bone densiity scan showed that I am borderine osteoporotic. I'm not sure what else can be done to stop osteoprosis. I also have a strong family history of osteoprosis.

    I'd be interested to hear other folks' experiences of this....

  • I was diagnosed with osteoporosis before they diagnosed my Vasculitis (takayasu's arteritis). They think the TA caused my osteoporosis as my body was trying to cope with the inflammation and so gave up dealing with calcium correctly! I was put on calcium tablets straightaway and then once I was started on pred (30mg) they gave me alendronic acid. I've been on this combination of treatment for my bones regardless of what my Vasculitis treatment has been. DEXA Scans definitely showed that high doses of pred caused my bones to deteriorate. It maybe that they feel that high levels of pred will work against any osteoporosis treatments.

  • I have been on Prednisolone since February and I too have been taking allendronic acid weekly firstly when on the higher doses of Prednisolone and now on 5mg. My recent bone scan was good.

  • I have been on Prednisolone for 2, five year periods & also short term periods. I developed Osteoporosis of the lower spine well after my diagnosis of WG.

    I have been on allendronic acid & calcichew for about 12 years now.

  • I have been diagnosed osteoporosis after suffering from multiple spine fractures .I suffer from w.g. and have taken prednisolone since diagnosis in 2010 at varying doses .I have been taking 30mg for 12 months following a serious relapse . this is now reducing .I was prescribed alendronic acid initially for 6 months and recently started to take it again however it now does not agree with me .I also take calcichew x 2 daily .My understanding is that the higher doses of steriod require supporting with calcium protection as does long term steroid use at any dose .My consultant is to refer me to an osteoporosis specialist who I believe will offer alternative drug treatments re calcium .My dexa scan in july 2011 showed minor problems however this seems to have accelerated considerably over the last 12 months .Try to protect yourself re this condition R

    egards.

  • I was diagnosed with borderline Osteoporosis 5 years ago. I suffer from PAN (Polyarteritis Nodosa) and take Calcichew D3 twice a day. I also take Risedronate Sodium once a week (this was recommended by my Pharmacist). My Prednisolone is at the moment 15mg a day. My last Dexa showed that things had 'stabilised' (?) on the Osteoporosis.

    Hope this helps.

  • Hi Cloe,

    it seems odd that your sister cannot be treated for osteoporosis until her pred dose has been reducuced. As you will have seen, most people get prophylactic treatment with calcium/vitD or alendronic acid/sodium risedronate BECAUSE they are taking prednisolone.

    John

  • I can't add much to what has already been said however I don't have 'Osteoperosis' but am borderline for 'Rhumatiod' arthritis; so I'm in the same 'ball park' as your sister. I am on 6mg Prednisolone along whith axa. and a whole host of other medications; I have five strains of vasculitis overlapping. Hopefully your sister's medication, particularly the steriod, will be reduced, over time, mine was. Let me (us) know, will you?

    Wish her good luck anyway, will you?

    AndrewT

  • Thank you everyone for your responses. I think my sister was a unique case for the nurse that diagnosed her so I think mainly she wanted her rheumatolagist to prescribe her medication so it's waiting for one of them to come back to her. Thanks very much, it really helps to know what others are on so I can ask more informed questions and hopefully maximise her treatment and care if you get what I mean.

    Thank you :-)

  • Hi I've been on Prednisolone for nine years now and did put on 3st in weight over the years but have since lost it all through healthy eating and exercise. I've had two dexa scans and both came back as having a excellent bone density for a woman my age. I'm still on Pred daily and don't take anything in the way to prevent prevent osteoporosis but I do regular exercise such as Yogo and jogging and recently did the Balmoral 10k justgiving.com/Maureen-Mo-M...

    I work part-time as an occupational health nurse so am very much in to health and wellbeing plus we have two young kids and animals that all help to keep me very active. Hope this helps.

  • I have osteoporosis now which may have started after the cyclophosphamide and the steroids....my bone density was never great - interestingly since taking high dose calcium magnesium vit d and boron the last scan showed an improvement in the hips but deterioration in back....considering biphosphamites....sorry about spelling!

  • I would suggest helping the bones along by taking good daily dose (5,000 i.u.) of Vitamin D3 (cholecalciferol) get sunshine and eat lots n lots of greens. Milk and cheese not so good for you, as their protein content locks up the calcium. Also too easy to get the Pred Munchies!! I'm not vegan but beleive vegans don't get OP much.

    Rob

  • Yes, I did. I was already with osteoporosis and precocious menopause when I have diagnosed Churg Strauss. Thankfully I didn't have any broken bone until now, after 333 days taking prednisolone and 6 infusions of cyclophosphamide.

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