PMR, Prednisone, Bone Density Drugs

Bones, joints and muscles
1

I posted earlier about my bone density test, which was really good.

However, my rheumy agrees that my bone density is good after 2-1/2 years in prednisone, but he still wants me to take the drug.

i emailed him that I had decided not to do that....not because of the cost...$425 for 3 tablets of Actonel, taken once a month. Medicare will only pay for Aldonate which is taken once a week and is $26 for a 90 day supply. I know people, personally who have had real problems with the bone density drugs, which is not to say that some people have taken it and feel it has worked for them. Reading the pros and cons, I was more persuaded by the cons. I hope this decision will not negatively effect my relationship with my rheumy!

 

2

It was prescribed to me, but the side effects bothered me.  I stopped taking it.  This drug is way too over-prescribed.  They go by the book.

I never told my Rheumy.  It is up to us if we want to take a drug or not.  

3

If you are overweight as many of us are, you won't need the pills- being overweight leads to stronger bones because we have all this weight bearing exercise called walking around!!!  I was told this by a doctor.  It makes me laugh.

4

Laughing is always a good idea! Thank you!😄

5

Hi Kathy

Will you tell me how were you diagnosed? And what were the symptomps? I am having pain in my left side for years now.

. I've had an open brain MRI scan. That it showed some Flair hyperintesities on both of my frontal lobs. So radiologist mentioned different names for it.

Like vasculitis, infections, GCA, or inflammation.

My family dr ordered some blood test to roll out some inflammations such as ESR, C-Receptive test and many more.

Luckily all came back normal.

But my mind is not at ease.

Beacuse for years I've suffered from left side pain.

That began from the back of my left shoulder. That is radiate to my neck, back of my head, inner left ear, to the upper left jaw and teeth, then to my left eye, left temple and left chick then goes down to my left under arm, left breast, then down to my hand. Then it goes down to my left hip, leg and foot. So I had to massage my left side constantly. Specially there is a pain point behind my left shoulder that I have to put a ball and press on it. Then the pain gets little better. The pain is more like burning, itching, and burning.

When it goes to my upper left side of my head my hair hurts, it gets warm and painful that I have to grab and pull my hair on that area to help to release some of the pain.

About my left side pain he was telling me it might be due to anxiety. Yes I've suffered from anxiety for years and yes this pain begins from being nerves and tenses all the time.

But my Brain images made me more nerves. Beacuse when I research about the terms that the radiologist mentioned Vasculitis made little sense to me.

Ive learned that those with the pain in their shoulders and temples all have GCA problem. Now I don't know if I have MS, Vasculitis or anxiety and another nerve problem that mimics the GCA or MS.

This left side pain comes and stays for a while than leaves. I don't know if the GCA pain is like this or not. I am 37 years old and my ft says its atypical to have this problem at my age. But I still have many what ifs questions like what if they get late or misdiagnose me and I get blind. What I get stroke beacuse of the misdiagnosed GCA and many more questions. 😔

Will you tell me about your signs and symptoms and little more about the GCA.

Thank you

6

Kathy, I was prescribed AA prior to a dexa scan and I took them for 11 months. It was only when a post came up on this forum that got me thinking about the drug. I researched the drug and immediately decided that I didn't want to take it. I asked my rheumy if I could stop taking it and he said that he didn't understand why it had ever been prescribed for me, (52 year old). I stopped taking it and continue with my vit d, magnesium, vit k2 and sometimes calcium. I say sometimes because my calcium level was at one point high. I broke my foot last year so my rheumy ordered a dexa scan and it came back perfect!

i most certainly wouldn't take this drug if it wasn't required. Would you take an anti depressant just in case you ever suffered from depression? I doubt it. The trouble is these bone drugs are heavily pushed by the drug companies and over in GB they're handed out like sweets regardless of the consequences.

politely say that you would like to reserve the option on these drugs for when you need them. All the best, tina

 

7

Hi Kathy,

Confusion about what to do what a pain, I have severe bone density, at sixty four I had hysterectomy at forty and went downhill after that and was on Fosamax for several yrs but had to stop. My rheumy also gave me script for Fosamax a few weeks ago and I am very apprehensive about starting again but he's insisting that I should. Not sure I will listen. Not that I had problems when I took it but Ive read that it can cause problems and so I do take my 1200 mil of citracal every day & try to eat right but who knows whats right anymore. If I were told my bone density was good then I would not take anything and now that mine is so severe Im not sure what good the Fosamax will do at this stage.

Not sure either if the pred helps because my rheumy told me it makes it worse so you see everyone reacts so different.

I understand your concerns and wish you luck with your decisions.

Sharon

8

I was fortunate in that my doctor ordered blood work and I had extremely elevated ESR and C-Reactive protein, but not everybody with PMR has elevated markers. I was in a lot of pain, stiff, fatigued, had lost 18 pounds.after taking the prednisone I was better within the hour! You are young to have PMR, but anything is possible. Prednisone is the test of whether it is PMR or not, as it is the only drug that works. The real experts in this forum can give you better information. I wish you the best and hope you can find some solutions soon😊

9

Thanks for sharing your experience with the bone density drug. It is great to have reinforcement for my decision not to take the drug because you can read so much about the outcomes, but who do you believe??

it is an individual decision that you make for yourself. Since my bone density had increased by 3.3% I have to think it is the Calcium, D3, etc.

 

10

Well, you know I am not a fan of the bone density drugs after all I have read about how bone is replaced in our bodies on a regular basis and that it is the quality of the bone that matters. Vitamin D3 added to your Calcium might be a good idea, but I am not an expert. Most doctors, I believe, say that prednisone will eat away at your bones. It is something to look out for, but some people on this forum have not lost bone density after years on prednisone! 

11

I took an injected drug Forteo about 11 yrs ago after I broke my hip. It was increasing my bone density but it was only FDA approved for two years so I had to stop. I didn't notice any bad side effects. Seven years ago I had an infusion of Reclast. Three days later it acted as a catalyst for my GCA. I'm on Fosamax now.

12

I'm going to use this thought to make me feel better about how fat I am!!