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Just today diagnosed with PMR

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TCroll
TCroll

have had a diagnosis of Fibromyalgia for years, and months ago felt I needed to go see my arthritis doctor and share with him symptoms I've been experiencing that are above and beyond my.fibro pain. I saw him back in Feb., and just today had my follow up appointment to learn the results of blood tests, xrays, etc.

I was sure I was going to go in there and he would tell me I have RA, however that was not the case. He diagnosed me with PMR. This is the first I have heard of this. I am being put on low dose prednisone, taken at night. He said that it is possible I will get almost immediate relief. I am 54. I've had 3 surgeries on my left shoulder, last 2 having to do with a total shoulder replacement. My orthopedic surgeon I am to see next week says my right shoulder now needs replaced. I've not been pain free from my left shoulder replacement, and to think of going through the same surgery for my right shoulder with the possibility of no pain relief is daunting. I don't know what to believe. My arthritis doctor says no more surgeries till we see if the prednisone treatment works. Oh HAPPY DAYS if it does, but why am I just now being diagnosed with PMR? I've had this pain in/across my shoulders, neck and down my arms for years, suffering much discomfort and limiting my ability to do normal daily routine things without pain and discomfort. I am anxious to take my first dose of prednisone tonight. I pray this works. My one MAJOR complaint, my insurance does not cover this drug. What the hell?!? I'm not asking for oxycontin for jeeps sake. I don't even like the thought of taking those king of narcotic drugs, and I never have. But people get prescient them all the time for pain less invasive than what I deal with EVERY SINGLE DAY. Does this upset anyone else that you have to pay out of pocket for prednisone?

0 likes, 33 replies

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  • linda38899
    linda38899 TCroll

    Posted

    Hello- I am a pharmacist and so disgusted with the insurance and how they make it so difficult to get the drugs that you need. Prednisone is very cheap but the problem is the insurance industrys require a PA ( prior authorizaton) for prednisone because they are assuming that the only people who use prednisone are people who have transplants and then the product would be covered under Medicare part B. IT is all a game and until we can get the legislators to act and fight for us against big pharma and the insurance industry we will have to suffer.

    • karenjaninaz
      karenjaninaz linda38899

      Posted

      Linda, I found that each Medicare part D formulary can vary from one insurance company to another and one year to another... Every year I check on the Medicare web site to see whether the meds I need are still covered. Last year my insurance stopped covering Qvar and a form of albuterol. No problem with regular prednisone- never used Ramos. I put my pred into gelatin capsules and divide the doses. I am pain free most of the time and tapering down slowly.
  • karenjaninaz
    karenjaninaz TCroll

    Posted

    Hello TCroll, surprised about prednisone not being covered. It's a very cheap drug. Maybe you are in your drug plan deductible? If not I would have the doctor apply for authorization for drug coverage. This means the doctor tells the insurance company that is the only drug that will help and please pay for it. That usually works.

    • TCroll
      TCroll karenjaninaz

      Posted

      I know. Wonder if it's new - RAYOS DELAYED RELEASE 5MG PREDNISONE ?? I am going to check with my insurance company.

  • erika59785
    erika59785 TCroll

    Posted

    This is surprising - Prednisone is not expensive and usually Health Insurance pays part of it.  Where are you located?
  • veronica81435
    veronica81435 TCroll

    Posted

    My advice to you is just try them , their not a narcotic pain killer drug at all, they work by a means of suppressing the imune system as your imune system is attacking its self with PMR i too was wrongly digonised with fibo and have had shoulder and neck problems with operations on my shoulders too. It was not until I started complaining about my hip After a virus that it clicked to them. You should know within hours if the steroids work or not, mines worked amazingly the fisrt day. If you just had fibo you would still be in a lot of pain after taking prednisone . Their not as costly as strong pain killers either. Try them and see what happens . All the very best . 
    • TCroll
      TCroll veronica81435

      Posted

      I am going to try them with great hopes they work wonders. I have never been on any narcotic for the chronic pain I've been in. I don't want to ever be dependent on a narcotic pain medication. My mother who has passed took hydrocodone for her arthritis problems and now both my sisters take this drug. Not for me. You become addicted to it.

  • rocketman42
    rocketman42 TCroll

    Posted

    I'd be a lot more upset over the fact that you probably had three unnecessary surgeries on your left shoulder and now they are suggesting you have it on your right shoulder.

    Please don't have any more surgery until you see how you respond to the prednisone. In all likelihood your symptoms will improve thus eliminating the need. Amazing how the surgeons rush into doing surgery prior to ruling out other possible etiologies. Maybe you should consider changing doctors too. Best of luck !

    • TCroll
      TCroll rocketman42

      Posted

      Thank you. I am very upset about the 3 surgeries. And scared that it may come to having surgery on my right shoulder. I am bone on bone right now. Not sure if the prednisone can help with that issue. I do know that this implant in my body not only is foreign, it feels foreign. Something is not right. Two years post surgery and he wants me to take celebrex for inflammation because xrays shows everything is okie dokie with the shoulder implant. Most days it hurts worse than before the implant. Everday it feels like someone used me as a punching bag. So sore, deep throbbing inflamed muscle pain that's always ever present. Never pain free. But how do you explain that to people when they can't see it. They think you're just the town crier looking for attention. Far from the truth, I want to be anything but the center of attention. But when I'm too drained to go to work a day or so here and there, then what. ???

    • Anhaga
      Anhaga TCroll

      Posted

      Don't go near celebrex if you can help it.  Prednisone is preferable if you have PMR.  Celebrex is the only one left of a group of drugs which were removed from the market because of their side effects.  I had a doctor who kept prescribing it to me, and I would keep looking it up, and wonder why it was still on the market, and not fill the prescription.  After a year I got a proper diagnosis from a different doctor and with pred have never looked back!

  • Anhaga
    Anhaga TCroll

    Posted

    Why are you taking it at night?  Usually we're advised to take it first thing in the morning, with food.  Yes, you must have it with something to eat, even if just a few spoonsful of yoghurt.  

    • TCroll
      TCroll Anhaga

      Posted

      On my orders today, pt given med samples 5mg RAYOS - recommended RAYOS 5mg 1 tab in the evening, take prior to 10pm. Nothing said about taking with food. ??

      Could it be that I take it in the evening because it is prednisone delayed release?? Not sure.

    • EileenH
      EileenH Anhaga

      Posted

      Because Rayos/Lodotra is the pred formulation you take at 10pm and it releases 4 hours later to achieve minimal morning stiffness next day.
    • EileenH
      EileenH TCroll

      Posted

      Yes it is a delayed release form - but you are supposed to take it at 10pm exactly and either within 3 hours of your evening meal OR together with a substantial snack, they suggest bread with ham/cheese (it is a German company, that is a normal sort of evening supper snack in Germany). The stomach environment is important for the breakdown of the coating at the right time.

      I think it is extremely unlikely that 5mg of pred even in the form of Rayos will achieve a good result if what you have really is PMR. The normal starting dose of 15mg is more usual - and then you titrate down to find the lowest dose that manages your symptoms as well as that starting dose. It is a different matter in RA which is what Rayos/Lodotra was developed for originally - it is being used to improve morning stiffness problems. It think you do need lower doses of Rayos/Lodotra than plain prednisone but not that much lower. I haven't achieved 5mg again after a flare last year. I was intending trying going up from 5 to 10mg but my doctor said use 15mg - and she was right, it took me a few months to be able to get down to 12mg. After a year I was at 8mg and now at 7mg.

    • Anhaga
      Anhaga TCroll

      Posted

      Sorry, TCroll, missed that you were taking rayos.
    • Anhaga
      Anhaga TCroll

      Posted

      I didn't know it was rayos or wouldn't have said anything!

       

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