Well finally saw new Rheumy today, the one that the Neuro Opthomologist referred me to and now both confirmed definite PMR and mild GCA. He said he's not going to do the biopsy just yet and told me to increase the pred starting tonight, so I will take 15mil early am and 10 with dinner. He wants me to space it out to start and see if I feel better & if I have a problem then to take the total 25 mil in the am. He said I was on to low a dose after the other Dr tapered me to fast which of course everyone here already had told me.
I was impressed with this Dr. as well, he repeated everything that I've read here and felt so much better. The only thing he couldnt confirm was as to whether the pred or the actual GCA was causing my eyes to be blurry so he's going to see me in a month or sooner if things get worse.
I'm anxious to see if the increase helps me or if I will stay the same so time should tell.
He also told me since I already had Osteoporosis that I must take Fosamax, even though I take a Calcium supplement and he said I need both. I'm kind of nervous about this but he said he prefers this to the injections and that they work the same.
He explained that the pred destroys the bones and mine are already so bad so I guess I have no choice. Anyone else here on this or anything for bone loss?
Thanks everyone,
Sharon
Sharon
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Taking prednisone will almost certainly lead to a negative biopsy.
Fosamax is a first line OP medication. It is certainly not the safest. Do a lot of research before agreeing to take any of the patent medications for OP. One thing you might consider is strontium citrate. It also comes with caveats, (doesn't everything?), but at least it is natural. I don't know anything about the dosage recommended. There are other nutritional supplements to take, beside calcium and D3, which will help rebuild your bones.
I'm definitely looking into this before I start. The Dr assured me that Fosamax is very safe and the best choice for OP, he said a few years back there were rumors about it being unsafe but it proved false so who really knows. Thanks for the article.
I had a good Dexascan result about eighteen months ago, however last week my doctor suddenly decided I should take Fosamax as I had been on pred for a while and he thought it would be a good idea! There was a short fight about whether I should take it or not and I won.
I'm going to are it since my tests were so bad and hope for the best. There used to be lots of bad reports about Fosamax but he assured me it is the best and safe..
I agree and thankfully my insurance covers the Fosamax. I've been taking 1600 mil of calcium with vitamin d but he claims that its just no where the amount needed. So I'll keep taking that with the Fosamax and will have to see the numbers next scan.
I believe the patent for Fosamax is about to or has already expired so it will be cheap. That doesn't mean it will be good for you. What other things have you done for your bones beside calcium and D3? Do you make sure you get enough magnesium, Vitamin K and K2, other micronutrients? Did you read the article I linked above?
Yes I read article and many others and get mixed reviews. Other than taking 1600 mil of Citracal with d, my d levels normal I try to eat right but Dr insisting not enough. My test results were horrible and he said I must take but am putting off for a bit because I'm looking into some natural products. Getting mixed reviews doesn't help for making a decision easier. I finally have the acid reflux under contro by taking 75 mil of Zantac and hate to upset that with any more meds. Also after taking the Fosamax way back for a few years and stopping it I hate starting again so just not sure what to do. This Rheumy is so set on it not sure how to proceed.
Check with your physician if you have any of the following:
Conditions:
Aseptic Necrosis of Jaw Bone, Invasive Dental Procedure, Stricture of Esophagus, Fracture of Femur Thigh Bone, Barrett's Esophagus, Atrial Fibrillation, Inflammation of the Tissues Surrounding a Tooth, Failure of Esophageal Sphincter to Relax, Inflammation of the Esophagus, Ulcers of Esophagus, Blockage of the Esophagus, Acute Peptic Ulcer, Burning Stomach, Serious Kidney Problems, Joint Pain, Difficulty Swallowing, Bedridden Patient or One Unable to Move Around Freely, Inflammation of Duodenum or Top Portion of Small Intestine, Problems with Food Passing Through the Esophagus, Vitamin D Deficiency, Low Amount of Calcium in the Blood"
If you have a history of acid reflux then I would certainly be requesting an assessment by a gastroenterologist before agreeing to start Fosamax again - there are other drugs that can be used, it is the first line on the basis of cost and time in general use.
However - he is wrong in saying the injections are no different. Apart from the fact they avoid the gastric problems, some have a different mechanism of action, and also different side effects.
Sharon I took Fosamax many years ago it worked well. I tried taking Actonel now and had some really bad side effects but I have Gerd and A hiatal hernia. I started the prolia shots once every six months. Took one about two weeks ago and I am having some muscle aches and fatigue as a side effect so far that's it. I hope that doesn't last too long it's a flu type feeling. Good luck with the new doctor and I hope you feel better on the prednisone. Marilyn
I also took Fosamax many years back with no problems. I do have acid reflux and stopped the Fosamax when thought it may cause more stomach problems but was on it for several years with good results. I'll give it a try and see what happens.
I'm just so apprehensive about starting it again especially since my acid reflux is under control. Rheumy so set on it convincing me it is a must. I had no problems when I took it about 8 yeRs ago but after three years went off due to all the negative talk but he says it's the best choice. He does not like the injections saying they work no different and are more costly so again I'm confused. Thankfully now the pred has gotten me back to a good place and waiting to see how long he goes to taper me.
Sharon if you have osteoporosis insurance pays for the injection so it shouldn't cost you anything but a small co-pay. I am on Medicare and have osteopenia so I pay for my injections I disagree with your doctor when you have reflux the Fosamax can really hurt your health. Give it a shot and see what happens you can always stop taking it
Fosomax is not the "safe" drug it's advertised as. Before you take it Google up law suits against Merck for causing so much damage on victims of this drug .read patients accounts of jaw rot , joint pain and femer breaks attributed to this drug . Then you will be making an informed choice .
Thank you Grace, I'm reading it all and Dr still says best drug of choice so just more confused, I was confused enough getting the pred all straightened out and now that that's all done I didn't need this. I'm looking into some natural alternatives before I start it.
Well..I've tried Fosamax...I ended up not being able to swallow..then my doctor wanted me to go on the annual Reclast infusion..forget it! Read that the side effects are horrible. I do not understand why the researchers can't do better for us regarding osteoporosis. I'm not taking anything for mine...just taking my chances. The "cure" is worse than the disease in my opinion.
As far as the developers of Fosamax are concerned it is a wonderful drug with few side effects! That's how it was marketed, what doctors believe and it is only now after a long time of many many patients being on it that the true rate of side effects is emerging. That's the way it always is.
HRT is also a wonderful way of avoiding osteoporosis - and the risks of that were grossly misrepresented the last time. Even I stopped taking it. But the downside there is that if you have an intact uterus you must have combined HRT and have periods for ever.
But Heron will describe the way to do it without drugs - it helps not to leave it too late and it requires commitment but it can be done.
Please don't just "take your chances". If you make sure you are getting all the right nutrients, including a few necessary supplements (the usual calcium plus D3, but also Vitamin K2 and a handful of others, like magnesium), plus a good diet high in dietary calcium from vegetable sources as well as dairy (preferably not too much liquid milk, but aged cheese, yoghurt, kefir) and appropriate exercise you should be able to do everything the bone drugs are supposed to do, without side effects. If you are at risk, say a poor DXA result for your spine, please get advice from an experienced physiotherapist about strategies to protect your spine, and exercises to strengthen the core, and muscles which support the spine. Weight bearing exercise (walking, Nordic walking), a weighted walking vest, tai chi, some kinds of yoga and pilates, all these things can help.
In my experience so far I would reckon that adding Vitamin K2 to my supplements plus Nordic walking, the weighted vest and tai chi, have been the most useful things which helped me improve my t-score without osteoporosis meds. My physiotherapist is impressed with my ability to keep my balance, given my advanced years, and she reckons it's the tai chi! Nordic walking strengthens the upper body, and along with physio exercises has helped to halt and even correct some kyphosis which I'd started to develop from a lifetime of slouching.
Merck has settled a class action lawsuit in Canada for over $6 million. Even as I write this lawyers have notified us that Canadians who took Fosamax and Fosavance and subsequently suffered osteonecrosis of the jaw or atypical femur fractures should submit their claims by July this year. Merck, the manufacturer of these drugs, says this agreement doesn't mean they admit liability.
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Any experience of having GCA and Actemra (TCZ) being discontinued while still trying to taper steroids
Anaemia anyone?
Why GCA went haywire?... Today I was diagnosed with Parkinson's Disease~
What my rheumy said yesterday - you may not like this!
