Newly diagnosed,so what now

Posted , 11 users are following.

I went to my first appointment with a Rhumotologist & he put me on Prednisone for 2weeks & my next appointment is 2 weeks after my last dose of Prednisone. The Prednisone helped with the pain but I read that you shouldn't stay on Prednisone long term, but it really helps me & I have had absolutely no side effects from it yet, but i still have 3 days of 1 pill each day left to take!

When i go back to the dr in 2 weeks do you think he will have me keep taking Prednisone or try something else?

0 likes, 15 replies

15 Replies

  • Posted

    I am not sure why you were not given the usual RA drugs first. But I find prednisone is used widely and does help with pain. But I don't think its the way to go long term. I made the mistake of just taking it constantly until I realised it can cause damage to your body in many ways. None of the RA drugs were working and they just resort to steroids and I think they would let us take them all the time if it meant it kept us quiet! They do help a lot for pain but please don't get to rely on them like I did. He may give you RA drugs next time. He should.

    • Posted

      That's true about steroids, but at times it's about quality of life and some have a very severe form of RA TO where without it, they can't even get out of bed.  I'd rather be dead than live like that

    • Posted

      Hi Lynn

      I understand what you say. I have severe RA and after being on all the regular drugs and now injecting highest dose of MXT with no relief, I finally refused steroids and got given a biological drug which if I had not finally refused steroids I doubt I would have been referred for bio drug. I have done my bones much damage from so many years on and off steroids. I fear steroids are over used and probably cheaper than giving bios which are very costly but effective if all else has failed.

    • Posted

      After a person fails MXT on either those increased doses or two different time periods, that has been the protocol that you can now go on the biologicals, but it shouldn't be that way.  It's changing in some locations.  Depends on the Doctor and if they care.

    • Posted

      It took me too long to realise it! So I try and warn others not to be fobbed off with steroids which docs are quite happy to do. They are great for stop gaps to help with pain but are lethal long term.
  • Posted

    Hi Sarah, Im doing exatly what you are doing now! Im unsure too what will happen next when i go back in November. What dose did he start you on of the steroid?40mg?20Mg? How was your arthritis before...do you think you have it quite bad?Were you in alot of pain?Keep me posted what your rheamy does next. take care x
  • Posted

    As Sherry has said, I'm not sure why you have not been put on the usual RA drugs like methotrexate straight away.

    I was diagnosed in may and was put on methotrexate and hydroxychloroquine straight away and a 40 day reducing dose of prednisone just to get me mobile whilst waiting for the other drugs to kick in, as they can take 3 months to get into your system properly.

    When you go back, you should query what their long term plan is for you.

    Good luck!

  • Posted

    Hi Sarah,

      Did you have more blood tests when you went th see the rheumatologist and perhaps that MD is waiting for further results?  If not it does seem odd that you were not started on one of the DMARD drugs.  I did have several rounds of having blood taken to check results/  also chest xray / hand xrays and MRI of hands which showed erosions

       Side effects of prednisone come with time--it is a very powerful med with lots of problems with long term use

       

  • Posted

    I have always been given Depo as a steroid injection, like sherry

    Said it can cause other problems to your pancreas and other

    major organs if used long term.

    The 1st port of call is Methotrexate and this can take 2/3 months to find the correct dose and to start working

    Usually supplemented with steroids and another Biological drug.

    It is not a quick process unfortunately but trial and error

    Good luck

  • Posted

    Has your rheumy given you a diagnosis of RA? 

    The only reason I can think of as to why you weren't given RA meds such as mxt is that your diagnosis isn't clear yet

    • Posted

      Some RA docs are not very good ones.  I've had two such.  Depends on where you live and if you have the liberty to find a different one.

    • Posted

      I m thinking polymyalgia rheumatica which is treated with prednisolone. I guess I ve been fortunate with my rheumatologist- I can hardly conceive of one not prescribing a dmard straight off unless there was a query about diagnosis. I had a depo shot first off while finding what would work. When it didn't last long the second time they reluctantly gave me prednisolone tablets as well as increasing other meds. It took a while to reduce and come off them.

  • Posted

    I think your Doc was probably ruling out PMR when prescribing prednisone.   Standard test is two weeks at 15mgs.  That aside, get off the prednisone - now.   It is very difficult to taper prednisone, I've been on it for 12 months now and have found even cutting down by 1/2 mg bringson immense pain.   Get of prednisone now, before it becomes too difficult.

  • Posted

    If your doctor is putting you on a declining dose to wean you off the prednisone, he is not thinking of putting you back on it unless you need it during a flare-up.

    Most likely he/she will re-evaluate you and start you on something like plaquenil to see how things go. And perhaps later add something else to the plaquenil.

    Take it one day at a time and one office visit at a time. Write down your symptoms, and dates, as they occur and any questions you may have. Take all this to your next visit. RA docs are good listeners and will respond.

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