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Dr had me crying today!

Posted , 19 users are following.

sharon35553
sharon35553

So I go to my Rheumatologist today, getting ready for him to give me my Prolia injection and he informs me that he will no longer treat me if I do not go off the prednisone. He has wanted me to taper by 2&1/2 mil every week and when I got down to 7&1/2 mil I had a terrible flare and went back up to 10 mil without asking him. Today he said that he wants me to taper by the 2&1/2 every three days until Im down to zero and  told him why, Im in alot of pain in the groin and shoulders and when I get to below the 7&1/2 my scalp begins to hurt. He said all of your blood work is normal therefore you dont need the pred any longer. I then explained to him that the Neur Opthomologist thinks I do need to be on it and he then tells me to have him take over my treatments, he was so rude and uncaring and now I dont know what to do. he thinks a year on the red is long enough and even went so far as to say  was addicted to a fake pain reliever. I am so upset and beyond knowing what to do. Needless to say I did not let him give me the injection, I was so angry to be treated like this that I just left. Now what do I do, find another Dr?

0 likes, 71 replies

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  • Juno-Irl-Dub
    Juno-Irl-Dub sharon35553

    Posted

    H sharon, I'm really sorry that you had to experience the total lack of a caring attitude from a member of the so-called caring profession. There you were telling him what YOU, THE PATIENT,are experiencing when you reduce your Pred. - and he doesn't want to know . . .  Any doctor that reduces a patient to tears and doesn't try to rectify it doesn't, in my mind deserve the title ot doctor at all . Your encounter reminds me of the joke (here it is ) - " What's the difference between  God and a connsultant ? "  (Answer)  "God doesn't think he's a consultant" !!!

    Seriously though, I presume you have PMR and also have been diagnosed with Osteoporosis (OP). Obviously if the doc is telling you that you need to take meds for your OP you should consider it and be able to talk over the various options with him  - including taking no meds at all . . Now if this doc can't or won't do this with you then I agree with the others - you should find another one who will. 

    I was diagnosed with PMR in 2013 and just a few months later with OP also. My rheumatologist prescribed Pred. for the PMR and ALONG WITH THIS an OP medication called Forteo. There are a number of OP meds that can be used with Pred. (Actonel, Fosamax and, I think, Prolia). In this way they reduce the further effect of the Pred. (which you HAVE to take) on the bones. I reduced the Pred. over the years since and am now at a dose or 1.25mg. - and even though I was taking the Pred. my bones have improved significantly over that time . . .  J

     

    • sharon35553
      sharon35553 Juno-Irl-Dub

      Posted

      Hi there and thank you so much for the reply. I was diagnosed with OP several years back from an early hysterectomy at 40, Im now 64 and was told last bone density last month as worse as can get, was on Fosamax and now getting ready for the Prolia, which also comes with side effects but hopefully I wont get them or at least get minimum.

      As I stated in earlier replies Im currently at 10mil of pred and not feeling well at all, severe shoulder and groin pain but afraid to taper any lowr at this time. I may try to taper a mil lower in a week or so but nervous to do so. Thank goodness no scalp pain but that does return when I go below the 10 mil. Time will tell so good luck to us all!

    • susan29426
      susan29426 Juno-Irl-Dub

      Posted

      Thanks for the chuckle. Reminds me of one of my favorite jokes:

      A doctor dies, and when he arrives at the pearly gates, there is a long line of people waiting to get in. He goes to the front and elbows his way up to St. Peter. "Excuse me, St. Peter, I'm a doctor. Can I just go in?" St. Peter tells him he must go to the end of the line like everyone else. He does so, but not happily. As he stands there grumbling, a man in hospital whites with a stethescope comes bounding by, goes straight to the front and walks into heaven. This is too much for our doctor. He pushes his way to the front again. "Saint Peter, I'm a doctor, just like that guy. Can't I go in now?"

      "Oh no," says St. Peter. "That's God. He just THINKS he's a doctor."

    • Juno-Irl-Dub
      Juno-Irl-Dub sharon35553

      Posted

      Sharon, my scores were pretty woeful also  (-4.5),  had no fractures, and was 61 when diagnosed. . . . 

      Another thing to add - though my bones (spine) were bad and yet I had to take Pred. for the PMR, my rheumatologist saw no difficulty in allowing me slowly reduce Pred. I actually brought her a copy of Eileen's DSNS reduction method and she left it up to me to implement it,  to call her with any queries and initailly get 3 month blood tests (ESR, CRP etc.) then 6 monthly. . . 

      If it doesn't suit you to change doctor, maybe you could  adopt a " can- we -start- again? "  approach,  show him a copy of the slow reduction method and also discuss the med./no meds./what meds. resolution to your bone situation. It's possible he may feel regretful about his treatment of you and be williing to try again and be a bit more humane in his attitude this time???

      (I say this because a couple of years ago I completely lost it with a car showroom manager when I was buying a new car. He had been slow in sorting out registration details etc. and I found his attitude to be quite haughty and dismissive. We had a huge row in front of loads of customers where I left nothing unsaid - or, rather, 'un-shouted' -  while he spoke quietly.  

      Now, I'm a very patient person who usually finds excuses for everyone's poor behaviour and may only 'loose it' once every few years, if then.  Afterwards, I was mortified, really sorry, and couldn't believe I'd treated anyone like I did.  I could see how stressed he was while I was shouting yet I couldn't stop. ( The day before all this I had to have my gorgeous old dog put to sleep and I was really uspet). So ater a few days I  bought him a really good bottle of wine and went back and apologised. Now, we're good buddies, he always helps me out with any car issue  - and every Christmas he gets a bottle of wine and a hug!!  Just saying . . . .  x

       

    • JanSP
      JanSP Juno-Irl-Dub

      Posted

      You mentioned being prescribed Forteo for OP. I took it for two years after I broke my hip in an ice skating fall. It helped my OP and I don't remember any side effects. I had to stop taking it after the two years because that was all the FDA recommended at the time. That was about 12 years ago. Seven years ago is when I was put on Reclast and three days later the GCA started.

    • Juno-Irl-Dub
      Juno-Irl-Dub JanSP

      Posted

      Hi,  It is recommended that 2 years on Forteo is the max. time though I've heard of patients who were prescribed it for a second 'course' some years after their initial two years. The 2-year period is recommended because that is the period for which it was tested  on humans by Lilly - therefore the FDA recommended this.  More recent research also has pointed to possible benefits of taking it for some months, then a break for a few months, and then continuing on. This can extend the treatment for a few years.

      Forteo, it seems, has most reported benefit in the spine area and a reduced benefit to the hips so it was good that your OP improved overall. 

      Finally, I don't know if there could be any relationship between starting Reclast and GCA appearing but of course that doesn't mean there isn't any!!

      Kind regards,  J

  • hindags
    hindags sharon35553

    Posted

    Oh I am so sorry to hear of your treatment by that "doctor".  Is there any way to lodge a formal complaint?  

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