Puzzled rheumatologist

Posted , 8 users are following.

Had my first Rheumatologist appointment and I think even he was puzzled: had come off steroids after 3 years and CPR blood test was fine (under 5 when I started at 77). But wake up with stiff and hurting shoulders, tops of arms and hands, and really stiff and slow when I first get up out of a chair.I don't want to go back on the steroids, but then IF there is inflamation I don't know if it is bad for you if left 'untreated'. Any ideas or similar experiences on both good blood test/still hurts and also if inflamation is 'bad' for one?

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9 Replies

  • Posted

    The experts will be along with good advice for you, but I can tell you what I've gleaned from following this forum for over a year:  yes you can have PMR without raised blood markers and yes, untreated inflammation is bad for you.  You may not need a particularly high dose once the inflammation is under control again, if you are concerned about pred side effects.  Untreated inflammation can, I understand, lead to cardio issues, and even cancer.  So on balance I'd say a maintenance dose of pred is not a bad option!  We can do a lot to mitigate the side effects of pred, mostly through our dietary choices and appropriate exercise, and I'd also add, in my case, active stress avoidance!

     

  • Posted

    After being on pred some people don't develop the "acute phase inflammatory response" at a later date. They don't know why, it just is. Some people NEVER develop it - I haven't in 12 years, even when I couldn't move. The symptoms are always king.

    I discussed the leaving inflammation unmanaged with a top German cancer expert a few years ago - he was definitely of the opinion it isn't good, long term low level systemic inflammation is felt to be a risk factor for developing certain cancers as well as cardiovascular disease - not just heart but also things like peripheral vascular disease. The other question is whether it remains at a reasonable level - or will it buld up like water from a dripping tap into a bucket. Eventually it fills up and overflows.

    The basic question is whether you are happy with this physical status - or would a low dose of pred, maybe even a couple of mg might be enough, allow a far more comfortable existence? I know which I'd choose - the first 5 years of PMR with no pred is not something I'm keen to revisit!

  • Posted

    I'm in a similar situation.  Had PMR 5 yrs. ago.  Took 20 mg., weaned off and felt fine except for headaches which started and I was diagnosed with GCA.  Weaned off 60. mg. over course of 3 years.  Almost immediately thereafter had weakness and aching in legs and then in arms and was fatigued.  My adrenal gland/cortisol level test was normal so rheumy and endo aren't sure what is going on, but I went back on 1 mg.  That got rid of the fatigue, but not the aching so I went up to 2 mgs. and was sick as a dog for that day. Couldn't stay awake and everything hurt.  Next day I went down to 1 mg. and was full of energy.  Today is 2nd day back to 1 mg.  Except for backache and some aching (including stiff neck) not feeling too badly but I'd like to know what this is and get off even the 1 mg. because even that causes bloating.  I have appt. with GP Tues.  Will let you know if he has any ideas.

    • Posted

      If you need a bit of pred you need a bit of pred and there are some expert rheumies who would keep their patients on a few mg for life. If 1mg works you are unlikely to get better than that.
    • Posted

      Well, I'm trying to keep optimistic about getting off any Pred.  I'm on enough meds and would love to get rid of this one entirely.  Guess I'll just have to wait and see but appreciate all your input in the meantime.

  • Posted

    Do you have psoriasis? I do and have/had the same problems you describe. I have been off pred for 6 months and was diagnosed with GCA in Oct 2013. Hands stiff, rather than joints, my muscles an tendons hurt. CRP at 0.5 for months. Dr. asked me to raise arms over head which I did. He says that the ease which I did it, yes it hurt, I do not have PMR. He gave me a perscription for DICLOFENAC SOD EC 50mg. WOW - I am a new man! Prior to this I was taking 975mg of aspirin at night. This is MUCH better. I went dancing two nights last week and am starting spinning in the basement. I recommend using a stretch routine with 29 different stretches made by "Robert A. Anderson".

    • Posted

      I hate pills of any type and would stay in pain rather than going back to pred. This drug is used for rheumatoid arthritis and is a powerful NSAID. WOW! I will continue using it.
    • Posted

      If you have psoriasis and PMR-type symptoms then your rheumy should be thinking more on the lines of psoriatric arthritis. He's also worng about "you can lift your arms, it can't be PMR" - not everyone gets every so-called "typical" signs but the fact it responds to diclofenac does suggest it probably ISN'T PMR.

      And don't get complacent about diclofenac - yes it is a powerful NSAID, but like all the others, it has some fairly powerful long term side effects too. 

  • Posted

    Well, as I have discovered since my GCA dx in 2015,there is not a good rule book to follow. When my blood work was great I felt the worse and vs a versa. Inflammation is the outcome and it is the problem and foundation of most disease we deal with. If we could find the trigger, we could avoid the outcome. The diet, the lifestyle, the predisposing genetic influence all play a role in these disease states. There have been studies that showed people who had the disease, GCA and did not even know it. I had and have the most challenge with admitting that I have symptoms that are related to the disease. I am now alomost paranoid about every little pain, headace, stomach ache ect. My nightsweats have been decreased since I have been on 1 mg Prednisone, I started on 60mg. But now I have many aches, hips, knees, shoulders, very stiff when getting out of bed and off the couch in the evening. The more intune you are with your body and keeping positve outlook and stay away from sweets- Keep seeking the advice of a good doctor. 

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