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Not getting anywhere!

Posted , 13 users are following.

tony92243
tony92243

Hi everyone,

Well it’s been 2 1/2 years since first visiting my GP in screaming agony , he believed I had PMR and started me on predisolone as normal (40mg a day) which certainly did the trick.

Eventually got to see a Consultant Rheumatologist who said I had reactive arthritis and it would go after about 6 months. 

I have been trying to drop the pred. But cannot get below 3mg, having frequent very painful flare ups and Am now on a manageable dose of 5mg but it’s is not pain free. 

My appointments with my consultant are every 8 months and all he seems to do is mess with my meds’ which have no effect.

I am getting really hacked of on two fronts, the first is the diagnosis, I think PMR fits more with my condition, and secondly the apparent dithering by the consultant and the length of time between appointments.

Just wondered if anyone has had similar issues, it’s very hard to speak to a consultant outside your normal appointment so get nowhere.

Also unsure how long I can remain on pred.

thanks in anticipation,

Tony.

1 like, 32 replies

32 Replies

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  • lilian05079
    lilian05079 tony92243

    Posted

    Hi tony92243

    Wow!!..8 months between appointments that's absurd. I am off preds now tapered off them regardless of flare ups and pain and withdrawal symptoms..nearly 11 months on and feeling ok. I have since been diagnosed with osteosrthritis and bursitis both of which are under control. When i was on preds and seeing my rheumy i had 2 and 3 month appointments and if i needed to speak with either my doc or rheumy i rang doc surgery and was often triaged and saw my doc and my doc on occasion would write to my rheumy and ask him to expedite my appointment. I often emailed my rheumy or telephoned his secretary and always got a response from him usually via email...Perhaps you can use the methods i did to try and get in touch with your consultant or doc ....i do feel for you wanting to get off pred..i hope my reply can help you in some way....my very best wishes to you tony92243....

    • tony92243
      tony92243 lilian05079

      Posted

      Hi Lillian, many thanks, I will try these methods, I did try contacting the consultants secretary but basically get stonewalled and given the ‘things are all behind’ reason. Might try my GP.

      Tony

    • lilian05079
      lilian05079 tony92243

      Posted

      Hi tony92243

      I am sorry you got a negative response from your rheumy secretary. Don't stop pushing for an earlier appointment. Try your doc, if all else fails write to your rheumy at the hospital you attend. It will probably go to his sec but you should get a response. I have done this in the past....my very best wishes to you tony92243 for a speedy appointment....keep us posted

    • EileenH
      EileenH lilian05079

      Posted

      If you are in the UK - what you did in the past and what you can succeed with now are very different things I'm afraid. It also varies a LOT between hospitals, There is a tremendous shortage of rheumatologists which isn't going to be solved in the near future either. It isn't good or even right - but that is the state of affairs. If you want to see your consultant on demand - you have to be well-off enough to go privately and not all doctors do private work. Otherwise, you have be satisfied with being seen when it is essential or by your GP. And these days few consultants have their own secretary.

    • lilian05079
      lilian05079 EileenH

      Posted

      Hi EileenH

      At the hospital i attend most consultants have a secretary. I know this as i have had dealings with various consultants for various medical reasons over many years. At PRESENT i am a patient at two hospitals and have on many occasions spoken to both consultants secretaries. It is possible to speak to consultants secretaries even in the private hospitals. At appointments consultants tell patients if you have a problem telephone my secretary or email. So in my experience contact with rheumies through their secretaries is very accessable today..best wishes EileenH...

    • lilian05079
      lilian05079 EileenH

      Posted

      Hi EileenH

      I have proved this by me telephoning my rheumys secretary approx 4 weeks ago and i had an appointment letter a week later bringing my appointment forward. Otherwise i would have had to wait until the end of december. I see my rheumy tomorrow....my best wishes to you EileenH...

  • shawn99
    shawn99 tony92243

    Posted

    Hi Tony,

    I have had PMR for 4.5 years now and cannot get below 5mg of Prednisone (with slight pain).

    I made it down to 2 mg but after a flare-up had to go back to 5mg.

    Unless you reduce very, very slowly you will likely have flare-ups.

    If you haven't used the Dead Slow method shared here on this website, I suggest you give it a try.

    I have been told by many doctors that 5mg is not a high dose and not to be too concerned about staying on it.

    If you are having a hard time getting to see your doctor maybe a change is in order.

    Cheers,

    Shawn

  • shelley45866
    shelley45866 tony92243

    Posted

    Tony, my Rheumatologist told me that the human body normally creates about 5 mg per day, so probably not too dangerous, but best to get off Pred.  At about 3 mg, my Dr. recommended Low Dose Naltrexone (LDN) to help me get off of the Pred.  At 3 mg, I reduced .5 per month until off, while using LDN.  Pain is not totally gone, have been off Pred for 2 months, still using LDN, and pain is manageable.  It is gradually getting better. I feel better - much better - after workouts. A leg workout with fairly heavy weights helped me. Afterwards, I am usually pain free.  Thank you endorphins.

    ​If you are a male and over 50, you might research adding testosterone and a growth hormone stimulator.

  • Anhaga
    Anhaga tony92243

    Posted

    Remaining on low dose pred should not cause any problems, at least not ones to be concerned about.  Can you get to see another doctor?  Your current "care" leaves a lot to be desired.  

    • tony92243
      tony92243 Anhaga

      Posted

      Hi Anhaga,

      Yes I agree, I think I maywell speak to my GP re a second opinion

      Tony.

  • Anhaga
    Anhaga tony92243

    Posted

    I looked at your original post in which you say your symptoms were textbook for PMR.  What on earth made the rheumatologist think that diagnosis was wrong?  The mere fact that your symptoms have not disappeared over the past two years, or become minor, seems to indicate that reactive arthritis was a wrong suggestion, according to what I read on internet.  Moreover, only seeing you about every eight months means he cannot possibly have a true picture of whether your condition is improving or deteriorating.  Can you not be cared for by the physician who made the original diagnosis, and was even alert enough to consider the possibility of GCA?
    • tony92243
      tony92243 Anhaga

      Posted

      Hi Anhaga, 

      My GP made the original diagnosis which I agree fits perfectly with PMR, so was very surprised by the rhemy’s dx. , but he’s the consultant! That GP has since retired , but I am going to speak to my current GP to move things on!

      Tony.

  • christophe38948
    christophe38948 tony92243

    Posted

    Hi,

    When dropping down the Pred you find that pain is back, go back on higher dose of Pred and after month. Try again dropping down dose. If without return of pain try change the dose. If no repeat the trial until will be success.

    Good Luck

    CW

    • tony92243
      tony92243 christophe38948

      Posted

      Hi Cristophe,

      I’ve made several increases in my pred, but nothing major, ie from 3 to 5, but might increase to 10 to see what happens, I’ve been reluctant to increase large because it took nearly 18 months to reduce down to my current level of 5 mg. And feel Im going backwards if that makes sense?

      Tony.

    • EileenH
      EileenH tony92243

      Posted

      It may feel as if you are going backwards - but if you have reduced below the dose you need to manage your symptoms at the moment that is what is happening. You have overshot the mark and the PMR is showing itself. The pred cures nothing - you are using it to manage the symptoms until the cause of the PMR dies out and goes into remission. It is scooping up overflowing inflammation to prevent it getting to a level that causes symptoms. Stop scooping out of the bucket and the dripping tap eventually fills it and overflows. That is very probably where you are. 

      You can fight against taking more pred all you like - but only pred will sort the symptoms in PMR. 

    • Anhaga
      Anhaga tony92243

      Posted

      Tony I feel your pain, really I do.  I was at 1.5, hadn't really tested it long enough to see if it the right dose.  Possibly I would have returned to 2.  But my doctor, when she heard how low I was, suggested I use up my pills and see what happened, and didn't renew my prescription.  I  happened to have enough on hand to use DSNS to get to 0 via the four day version.  Half-believing I was in remission, having felt pretty well for quite a while, I thought I'd give it a try.  I tried the drop to 1 twice over the course of about three weeks.  The end of this sad tale is that an increase to 3 seemed to help the returning pain somewhat.  I tried to get back to 2.5.  No good.  Went to 4 for a while.  In there I had a flu shot and now I'm wondering if the timing was a bit unfortunate, because without attempting another taper my condition got steadily worse. The morning I found it painful to get out of bed I took myself in hand, gave myself 5 mg more than my last securely good dose (2) and have been on 7 mg for about five days.  All seems well now.  I'm going to cautiously try to step down a few mg, certainly not to my former nice low dose, but I'd like to get to 5 if I can as soon as possible.  I will not be dropping more than 1 mg at a time, even though we are told we can go directly back to our last best dose if only on an increased dose for a few days.  Just too nervous to risk it.  

      My previous tapering took me to 7 from 15 in six months.  It took about four more months to get to 4, about three or four to get to 3 and a whole year longer to reach 1.5.  So I'm extremely peeved to be back where I was six months after starting pred, back where I was nearly two years ago!

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