When I read the postings I get the feeling that the doctors give us all different prescripotions and sometimes not necessary medicines. I am male and 69 now.
I was diagnosed with PMR in June 2005 some day before I flew to the US to participate in a 50th jubilee for high school graduation in Minnesota. I was exchange student there 1954-55. I was given prescriptions for prednisone and for the side effects I was told that I might need a "falling asleep" pill as prednisone makes you "high" when you are at a high dose. I got Imovane (sometimes Zopiclone with the same active ingredient zopiclone). I donīt take it all the time, except the first couple of weeks. If I have a night when I have a problem falling asleep now, I take half a pill. I was also told that I needed Omeprazol to protect me from getting ulcer. I took it until last summer (2006) when my face got all red in the sun. The doctor told me that if I didnīt have any problems I could skip it. After a week in the US, July 2005, I read about the side effects of prednisone while having a break. I then saw about the need to take calcium and vitamin D, so I bought some. The doctor hadnīt told me about this, but I can read many postings about Osteoporosis When I got back to Sweden I contacted my doctor and got prescription for Calichew D3 which also contains vitamin D, which I understand is also very important.
It seems as if we donīt get all the medicine we need for the side effects. In my case I wasnīt prescribed Calcichew D3 at first and it seems as if many on this board donīt take it.
I am lucky not to have any pain and never had, so they took 2 months before I had the diagnose. Now I have just tapered down to 3.75 mg from 5 mg (I have 5 mg pills and split it in half and then once more). Each pill seems to cost about the same no matter if it is 1 mg, 2.5 mg or 5 mg. Thatīs why I do like I mentioned.
Have you also had the same thought about different medication?
Greetings from (now) snowy west Sweden
Ragnar
Good question. And...why are we not prescribed better meds by now? This disease has been around awhile.Hi Ragnar,
I agree that no one is keeping all of us very together on medication. It is certainly interesting to hear from you in Sweden, and many other members from all over this world. I guess our disease isn't geographically specific. I have been on prednisone for more than two years now, and my recent bone density scan showed me to be in complete osteoporosis. This has all occurred during my corisone treatment. Never once did my rheumatologist prescirbe anything as a preventitive. Now my GP wants me to take Fosomax. He says that I am too far along for calcium to do any good at all. I am curious if anyone has taken this, as I am almost afraid to begin. The one outstanding side effect my doctor warned me about was the disinegration of your lower jaw bone. It simply disapears taking your teeth with it. I am about at wits end with all this medication. I also have a question for you. By saying that you never had any pain, did this mean no pain after the steroids or no pain ever? Were you diagnosed based on your sed rate? This disease is so perplexing.
Oh my goodness that is scarey. The jaw bone? I've never heard that before! My jaw has been bothering me quite a bit. Yikes.Hi Susan,
I started on pred in mid- december, and my Dr started me on Fosomax as a preventative 2 weeks after that. I take one a week.,a nd I haven't had a problem with it. You have to take it in a morning on an empty stomach, with a full glass of water, and then sit upright, or stand for half an hour. This is to prevent the stomach contents, including the fosomax leaking back up the oesophagus and damaging it. After half an hour you can take your other medication and have breakfast. I find that I usually start burping after about 15 mins, and do have trouble with wind all day. (sorry about the detail!)
I have read on some websites that some people do have trouble with it, so I asume it's like lots of other drugs - side effects hit some worse than others. My Dr says it works by enabling the body to increase the uptake of calcium from the gut, as our bodies are not very good at absorbing calcium, even if we have plenty in the diet.
I've no idea if it's working for me or not - don't suppose I will until I either break something, have a bone scan, or perish the thought, my jaw dissolves.
I think fosomax is quite expensive, but as I'm in the UK I can choose to pay about Ģ7.00 for each time I'm prescribed something, or pay about Ģ90 for everything I need for a year. I'm on the annual payment, and grateful for it, with the amount I've had prescribed since November.
Hi Susan!
I didnīt even have pain before getting the diagnose, so I guess thatīs one reason it took so long to diagnose for me (2 months). On another forum someone thouight that I might have temporal arthritis but not PMR. I donīt know if thatīs possible. In any casy I feel lucky that I am not in pain, especially when reading all posts about pain. During the last half year I have had high blood pressure, so I have medication for that too (Cozaar comp). I am not sure what was the final clue to diagnos PMR for me.
Ragnar
Hi, All!