My rheumy wants me to get RECLAST in ... - Scleroderma & Ray...
My rheumy wants me to get RECLAST in August for osteoporosis, I have read that folks with scleroderma have a lot of side effects,anyone??
About 3 years ago I had one infusion followed up by a further infusion 12 months later. A rather bad side effect (very common) was increased bone growth of my lower mandible. I had a procedure last year to have the growth removed.
As of today I have to have constant dental inspections as I no longer can have intrusive dental works such as extractions. Please google this infusion and side affects. I wish I had never heard of the stuff.
Hi. I just got on this website. I'm sorry to hear of the problems from the infusion you had a while back. Was it forteo? I am trying to decide whether and which osteoporosis medication to take (if any) for osteoporosis. and have scleroderma. They all seem daunting. But so is osteoporosis. It sounds like your experience has been very challenging, to say the least.
any thoughts would be deeply appreciate. Marlen
I'm having my bone scan this coming Tuesday & fully expect that it will show Osteoporosis since my mother had it and like her I have lost 3 inches in height, have Raynauds & LSS.
I Googled it and was horrified at what I read.
Thank you for giving the heads-up on this one. Wouldn't touch it with a barge pole!
If I'm offered anything else I'll let the site know. (I live in the UK so not sure if this treatment is even available here)
Hello Madge51, I also suffer from Reynauds and Lumbar Spinal Stenosis. I have loss of height. I had a Scan for Ostioporosis recently but all it showed was that I had been laying down more calcium that normal. That is probably because of the Stenosis which is narrowing of the bony spinal column. My loss of height is caused by degeneration of the intravertabal discs. I have several prolapsed discs and have been diagnosed with a degenerative spine. However thankfully it is not caused by Ostioporosis. I have also developed a scoliosis (a curvature in my spinal column) I hope your scan goes well and the you do not have Ostioporosis). My GP told me that there are several treatments for ostioporosis so if you do have a problem with it there may be choices of treatment. Let us know how you get on when you get your results. All the best for now Jessie122.
Sorry for the confusion: the LSS that I was referring to was Limited Systemic Sclerosis.
Like you Jessie I have damaged disc.
I have Limited Systemic Sclerosis (Scleroderma), Raynauds, Sjogrens, degenerative spine and now have recently fractured two spinal vertebrae with what it turns out is Osteoporosis. When putting me on a 'low-dose' of steroids almost two years ago to reduce inflammation in the sclero,, my rheumatologist also put me on calcium and vitamin-D to counteract the sometimes detrimental effects of steroids on the bones.
Since the fractures, which are taking a long time to heal, I am now also on an Alendronic Acid (I think also known as Fosamax) once weekly tablet but although I have asked to reduce the steroids, in view of how I am feeling after the spinal damage, my rheumy has decided to leave them as they are, to help me recover. Worried long-term though as I already have a host of other medication every day. Anyone else have similar thoughts? I feel slightly caught between a rock and a hard place!
Interesting! I have been on osteoporosis treatments for many years but non have showed any improvement in my bone density. I now have the annual infusions (next one in August). It is a bisphosphonate infusion. A few months ago I had a piece on bone protruding through my upper jaw. My dentists hadn't seen anything like it and has referred me to a dental surgeon at my local hospital. Then it suddenly occurred to me that I had read somewhere about the infusion causing dental problems so I contacted one the top dental consultants and asked for his advice. Below is his reply
"Happy to advise. You mention an osteoporosis infusion - is this a bisphosphonate - some of the names are alendronate, pamidronate etc. If it is then I wonder if this is Bisphosphonate related osseonecrosis of the jaws (BRONJ), which is now recognised as a possible oral complication of such therapy. It gives rise to low grade infection and death (necrosis) of small bits of the jaw, can occur following dental extractions but can also arise spontaneously. It gives rise to local pain, swelling and ulceration that is accompanied by small bits of often sharp bone coming out. If you have had infusions of bisphonates then the above diagnosis may be possible.
The treatment is to simply let the area heal spontaneously (it can take a long time) and to carefully remove any bits of bone that are sticking out and irritating the mouth. Certainly surgical removal of large sections of bone is not the way forward.
I then asked if I should opt out of the next infusion. His reply:
"No you should continue with the therapy and await what the surgeons think. The effects of bisphoponates are very long term. The drug remains in bones for many years thus stopping does not quickly help any necrosis - if this is what is happening".
AHM
I took the reclast for 4 years and developed the jaw bone rot, had to have a piece of bone removed from lower jaw. painful and after 2 years still a opened hole there.
I can't get dentures that fit right. Two oral surgeons said it is from the Reclast and to never get that again
carol
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