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Relapse

Posted , 13 users are following.

gail2910-US-MI
gail2910-US-MI

I was diagnosed with PMR in October 2013. Responded dramatically and well to Prednisone beginning at 10 mg. and slowly tapering over 18 mos. to 2 mg. My life was normal, including aerobics, walking, lifting weights etc. The s/e of pred were minimal and I was looking forward to being done with the meds although in no big rush. Returning from vacation to FL last month, where I had been very active and pain free, I had a couple of close connections in airports and "speedwalked" in sandals for long strenuous distances. The next morning I was in pain again, nearly as bad as the intital bout. [I have no pain in my upper body this time for which I am incredibly grateful but the pelvic girdle region is very bad and I am unable to walk more than 100 yds (on a good day)] I actually think I may have a bursitis type thing in my right hip + PMR, both triggered by this "injury." The pain in trochanter is being treated with ultrasound and rest by  my PT and is improving but the rest seems pretty variable from day to day.I felt like I was improving yesterday for example and then today woke up in misery. Rheumatologist put me on 2.5, then 5.0 and now 7.5 for a week each and only now am I showing any signs of improvement--and these are not breathtaking. I am also taking 7.5-15mg of Meloxicam, which I never needed with Pred the first go around. Naturally, I am devastated by this development; I didn't know you could relapse from PMR which I know see is not uncommon.  I am freaking out that I am not responding to the Pred like before and I am also worried about the higher dose and the time on the drug etc etc. My question is should I be considering an even higher dose or if I stay patient at 7.5 will it work just more slowly than before? Is the slower response to Pred predictable because I"ve been on it so long? Rheumatologist. seems quite casual with prescribing of Pred but doesn't offer much else. I feel like he is sort of letting me dictate the tx course and what I need here is some guidance/reasurance and help with discerning best practice. Access to doc is limited; I am really just communicating wtih a nurse weekly. These forum has been the most helpful resource I have found, frankly. I am trying to stick with the practical reality of my situation but the emotion and "the stories I'm telling myself" as well as the inability to move are really creating a secondary depression. Thank you for any thoughts that might be germane.

6 likes, 29 replies

29 Replies

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  • Mrs.Mac-Canada
    Mrs.Mac-Canada gail2910-US-MI

    Posted

    Hi Gail,

    i can relate to your fears and frustration because, like many of us here on this forum, I have experienced flares when I was beginning to think I had beat this thing because decreasing my dose was going so well. I was pretty much back to my usual activity level (although not as strenuous as yours😕) and out of nowhere I had a flare. I was at 4mg going to 3mg and had to go back to 10mg to get the inflammation under control.  I'm now decreasing to 9mg and going very slowly and will go even slower once I get to 8mg.  

    We all would like to get off the pred. but  must realize that our goal is to get to the dose that manages the inflammation and not necessarily to zero.  When it's ready the PMR will go into remission and until then it is the boss.

    I hope you find the dose that works for you and are in less pain soon.

    Hugs, Diana🌸

    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      Your post has just reminded me - one lady believes her PMR returned after she was trying to do too much and, having got rid of the second lot, is determined to look after herself this time.

      Autoimmune disorders are NEVER cured. They go into remission - whatever it was that triggered it first time round can do it again so it really does pay to be careful.

      What I should have said in my first post is that even WITH PMR it is possible to have a fairly decent quality of life. I do - but I also am very dilignt about NOT doing anything that overtires me. It's worked thus far.

    • gail2910-US-MI
      gail2910-US-MI Mrs.Mac-Canada

      Posted

      Thank you, Diana, I see now that I should have known relapse was possible-- although how knowing that would have served me, I'm not sure! I am buoyed up by this forum and the knowledge that I will not feel this way forever. Wondering if people have any ideas of what triggers their flares. I had been active in Florida, although mostly swimming and snorkeling. I suspect if injury is causative, it was the fast walking w/o good shoes on--which I didn't anticipate. Then the cold plane and return to cold Michigan. Cold seems to make it worse. Glad we are heading into summer. Thanks again.
    • Mrs.Mac-Canada
      Mrs.Mac-Canada gail2910-US-MI

      Posted

      Hi Gail,

      This  is is my pre flare story.  - in Oct 2014 I had decreased to 4mg using the DSAS method which had been working great for me.  I had  no real pain and could walk a fair distance, cycle and go for short hikes with no problems. Did get tired if I did to much but I could rest for a day and all was well.    

      In the last week of Oct. we travelled to Mexico, I had arthoscopic surgery on my ankle and on crutches for 2+ weeks. I went to Physio every day for 2+ weeks until we return home on Dec. 15th then off again to our daughters, (a 6 hr drive from our home), for Christmas my son in law gave me a cold but I recovered quickly from that. All seemed "normal" and still at 4mg so I thought. Yeah!!!  I can start my next decrease.

      I January I tried to decrease to 3.5mg still using the DSAS method.  I made it to the 3rd week and had my worst flare yet.  I was stiff and in pain and got pretty angry about it.  I increased back to 4mgs - that didn't work so increased to 5mg for 4 or 5 days and that didn't work so decided to blast it with 10mg (on the advice of our wise women).  And here I am as I said in my last post working my way to 9mg.

      I know now that even when I seemed to be good at the 4mg, I didn't take into account in my mind that I had been doing way to much. Physically my body must have waiting for a final straw and when it came along it quickly responded with a vengeance.  Another lesson learned😋.

      Sorry for the lengthy scenario but I find all the experiences of people here have helped me make more informed decisions while living with this crazy disorder so thought I'd share.

      Hugs, Diana🌸

    • gail2910-US-MI
      gail2910-US-MI Mrs.Mac-Canada

      Posted

      This is really helpful,Diana. If there were signals that things were about to go south in my case, they were pretty subtle ones. What I did NOT see coming was the possibility of serious (as in prolonged) relapse because my "recovery" from first hideous bout was pretty smooth. I guess I should have educated myself better. Anyway.....what I did "wrong" post-flare up was continue to try and push through it thinking in a day or two it would subside. Well. You know how well that works. So here I am. Living and learning.
  • noninoni
    noninoni gail2910-US-MI

    Posted

    Gail, do you have a reasonable rheumy?  I live in SE michigan and I am looking for one.  The univ. of mich rheumies seem to all be into lupus and could care less about PMR. I live just out side AnnArbor.  Otherwise i plan to go to the Mayo Clinic whenever I can get an appointment.

    I also am undegoing a flare, and my primary does not want me to go up to 10mg unless I am under the care of a rheumy.  This is most unfortunate because 7.5 mg pred is not enough to stop the pain in my shoulders and upper back, which hurt pretty much all the time.

    • Mrs.Mac-Canada
      Mrs.Mac-Canada noninoni

      Posted

      Hi Noninoni,

      I really don't get the doctors!  I'm not a medical person but from my experience, unless you are experiencing withdrawal pain which should  get better over a few days, you need to be at a dose that will manage the inflammation.  If you can't get in to see your Rhuemy for weeks the PMR will settle back in and it's harder to get back to the dose that previously managed it.

      I hope you can see the rheumy soon and are feeling better.  

      Hugs, Diana🌸

    • EileenH
      EileenH noninoni

      Posted

      Like Diana - I don't get some medics either! There is really no need for a PMR patient to be under the care of a rheumy for day to day things after the diagnosis has been made. And 10mg of pred is not what you would call a massive dose! 
    • gail2910-US-MI
      gail2910-US-MI noninoni

      Posted

      Hi noninoni,

      I have a well-respected rheumatologist. I like him. He is amiable and kind and takes his time with me. He is not accessible meaning it was a long wait to get in and I have only seen him a handful of times in 2 years. I believe other doctor in practice is easier/newer.My doctor has a P.A. I refuse to work with. (calls me little lady, etc and is totally offensive) I agree with you that they seem to regard PMR as small potatoes. He said to me the first time we met, "we love to see PMR; people get better from PMR"  Looking back, I believe he gave me very good guidance. The part I didn't hear was the possibility of relapse, nor was i prepared to deal with it before it settled in. I believe he will endorse my decision to go up to 10mg again (when I call to let them know I've done so) He also offered trochanteric injection which I might do as well since after 3 days at 10 I"m not feeling much better. I feel he's pretty laisez-faire about tx. I could have used a bit more direction. He is adament about slow reduction and urged me to stay at each lower dose longer than I would have on my own. If you would like the name of the practice et me know and I'll message you. It would be about a 90 minute drive for you. Maybe 2 hrs.

  • gail2910-US-MI
    gail2910-US-MI

    Posted

    Well, it’s been a week or so since I posted. I saw my rheumatologist last Wednesday for some blood work and eval. I had increased Pred from 2-10 mg with no improvement in what we believed to be a relapse in my PMR sx.

    Upon examination, he said, I think you have may have more of a mechanical issue from your fast runs through the airports at end of April. I know you have bursitis. He gave me a big cortisone shot to fix that (it helped SO much). The rest, he thinks is tendonitis of the groins, adductors, hip flexors, etc. He put me-- for 5 days only-- on big NSAID to try and knock out the inflammation.  Along with Prilosec. Apparently, Pred is lousy at treating tendonitis.

    SO. What I noticed right away was a big improvement.  Trochanter nearly 80% better, the other more like 50%. Blood levels were relatively low (15) which he anticipated. Sed rate was soaring with PMR.

    So maybe we’ve been treating this as PMR flare and it isn’t. The present dilemma is that I am not back at 10 mg of Pred! AND I have to take NSAIDs for a while although not this mega one. He believes it’s ok for me to taper from 10-5mg “relatively fast” ( I inferred he meant a couple of months) but said we got very slow from 5 down.

    How is this going through everyone’s filters? Any red flags? I think I just wrote to myself here. A bit confusing on protocol. Really grateful for all opinions. It occurs to me that it is easy to assume once you have dx that anything you hav that feels similiar may be PMR--which it may, but also other things to rule out.

    I regret that I didn't get better assessment before going back up to 10 Pred. I was relaying sx to nurse on the phone. I maybe could have pressed to be seen sooner. I don't know. It's all discouraging to sort out. At this point, I want to spend my energy looking forward to take the right steps. Thanks all.

    • EileenH
      EileenH gail2910-US-MI

      Posted

      You've only been on 10mg for a couple of weeks haven't you? That should allow you to taper back to 5mg where you knew you were OK within a week or so - maybe a few days at 7.5mg on the way down. If it isn't a flare you don't need that much so you can go back to where you were and your body won't have got totally used to lots of pred so big sized steps aren't risky. In a normal pred taper you may drop 5mg at a time over a short period - and the problem arises in PMR when you try to do that because you miss your end point. You know what your end point is.

      And yes - you can't assume EVERYTHING is pred or PMR. We get other problems too. What a shame your rheumy didnt just say 10mg to start with instead of creeping up - then it would have been more obvious that the increase hadn't done anything for the "PMR" so it probably wasn't PMR after all.

    • gail2910-US-MI
      gail2910-US-MI EileenH

      Posted

      Thank you Eileen, That is exactly what I needed to know. I thought that was what I had read but good to have it confirmed.

       And, i agree with you that the treatment management could have been better. It is hard to go through an intermediary via phone (nurse, P.A.,whatever) but that seems to be the way of medicine in the States. I am trying not to focus on this grumbling point but you're right about his incremental protocol, and access is part of the challenge. Thanks. Gail

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