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Thought I was successfully down to 7mg.

Posted , 15 users are following.

jenny22117
jenny22117

Hi everyone. I really thought I had cracked it and successfully got down to 7mg. I have been on it now for five weeks and was just about to drop to 61/2 on the dead slow and stop method, when all of a sudden, I have developed really bad pain in my Elbows. When I first got PMR it started in my Elbows. Does this mean that

I am having a flare and need to go up to eight again. 

I really hope not because the Pred is causing me to have Fractured Vertebra. I have had three Fractures in six Months.

 

0 likes, 37 replies

37 Replies

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  • LayneTX
    LayneTX jenny22117

    Posted

    Hi Jenny, 

    I had not been able to understand the flare thing until recently.

    My big toe of all places.  The PA at my Rheumy said it was a flare.

    I too refuse to go up on my Pred. I'm at 6 mg.

    But I was cheating on my diet, eating some flour and grain products and some sugar products.  Oh and a bit too much wine on weekend. Oh and some dairy. 

    Does seem when I don't indulge in those my toe flare subsides. And fingers.

    Could be coincidence? Maybe.

    So darn hard to figure out the right amount of activity too. Are you gentley keeping knees moving? If I sit too much then yes, feel more pains, ugh. Do too much, more pains.

    Just something to consider.

    • jenny22117
      jenny22117 LayneTX

      Posted

      I know Layne, you can't win whatever you do. All that we can do is keep going and hope for the best, I think.

      Take care,Jenny x

    • carleen79880
      carleen79880 LayneTX

      Posted

      Hi...regarding this post to Jenny and other info I am coming across on the forum, should I be on some type of diet regiment? ?? I have lost a considerable let amount of weight recently due to being diagnosed a few days ago with PMR. I am concerned with doing the right thing and diet was never mentioned by my Rhumetologist.

      Thank you

    • Tastyron
      Tastyron carleen79880

      Posted

      Hi Carleen. 

      I'm nearly six weeks into my diagnosis. Before that I lost 14llb, since Pred, started on 20mg now on 25, I have put on 9 lb. I'm happy with putting a bit of weight back on but don't want to do it too fast, 4lb last week so wii keep my eye on myself.

      I find that once I start to eat I have an appetite for the evening. So I tend to start with a big bowl of Muesli to fill me up until dinner time at 6 topped up with fruit blitzed into a smoothie and yoghurt through the morning. Once I've had dinner then it's just a case of stopping myself snacking all evening. 

      Just keep an eye on your weight and eat accordingly is what I do and have always done, no faddy diets for me I'm afraid.

      Best of luck on this ride.

      Ron

       

    • EileenH
      EileenH carleen79880

      Posted

      No - there isn't really a diet regimen that helps with PMR. Weight loss is a common sign in autoimmune disorders, possibly because many people run a low grade fever. However - it does give you a head start with the (almost) inevitable weight GAIN that comes with pred. Not everyone puts on weight but many do and it can be considerable. It tends to settle around your midriff, cheeks and neck and as a "buffalo hump". Don't panic about the weight loss, it will go back on - unless you turn out to be one of the very few for whom pred leads to further weight loss! And no, rheumies probably don't think about the weight gain until it has happened and then they tell you to watch out not to put too much on.

      Some people have found that being really strict with carbs helps avoid the weight gain. That also helps with other potential side-effects of pred - raised cholesterol and blood sugars. 

      Don't worry about "doing the right thing" - there is nothing that is right for everyone. We all experience PMR differently and all respond to pred a bit differently too. 

  • margaret22251
    margaret22251 jenny22117

    Posted

    hi Jenny you seem to be doing really well, i am getting down from 10mg to 7.5-7mg at the moment and as i have been told i dont have PMR my symptoms are similar to yours, but i am following Eileens dsns system and hope fully this is working for me.

    Hope you have a good day, and keep on this site there are some really brill ladies that will help you.Regards Mags

     

    • jenny22117
      jenny22117 margaret22251

      Posted

      Hi Mags, if you don't mind me asking, why have they said that you don't have PMR?

      Jenny x

       

  • margaret22251
    margaret22251 jenny22117

    Posted

    Hi Jenny when i went to this hospital to see the Rhumy, i was given some excersises to do and because i did not feel pain when i did them, thats what they decided i did not have PMR, but as i have the temporal pain, and eye trouble, also the hump neck and my shoulders hurt , my doctor says she thinks i do have it.

    After i had a xray on my neck and spine it was also dediced i had OA, and i am having physio and a massage every week at the hospital, and i have to be weaned off steroids so they can see what happens.

    I feel as they are doing all they can to help me, but boy do i have bad days after five and half months i still cannot walk far, and on the 14th Deember i had a steroid injection in my Bum, boy was that an experience, but its made no difference to the pain, so on the 8th Feb i wi;ll be having a ultra scan on my bones.

    I hope you are able to understand all this, its driving me nuts not knowing whats wrong with me, but as i say they are doing their best.

    Take care, Mags

    • Anhaga
      Anhaga margaret22251

      Posted

      Mags, I hope you get a diagnosis soon that leads to some helpful care.  I have osteoarthritis in my neck.  Because I'm on pred I wouldn't feel any pmr pain from exercises either, and an x-ray shows the osteo.  But that doesn't mean I don't have pmr does it? rolleyes
    • margaret22251
      margaret22251 Anhaga

      Posted

      Anhaga, this is what my doctor says regarding my neck and shoulders,also i have had pain in my hips that bstopped me walking last year.

      The pain wears you down as all you ladies and gentlemen know, but when you dont know whats causing it , it does not help.

      I hope they can find whats wrong soon, as my husband is slowly loosing his sight and i want to be fit for him, and also there is the threat of GCA if i do have PMR, my own gp is very good so at least i am in good hands .

  • dan38655
    dan38655 jenny22117

    Posted

    Hi Jenny, I also have ups and downs with my minimum dosage requirement.

    I battled between 5 and 6mg, and I am battling now to hold my dosage down to 3mg.

    Lately, due to the weather and my resulting irregular exercise regimen, I began to suffer painful "creaks" in various places, some that I hadn't felt for over a year.

    So I began taking 1mg extra, but took this extra 1mg when I woke up in the middle of the night, which I almost always do.

    I have had a very good result from this within just a couple of days, so will stop doing this when my symptoms are fully back under the control that they were.

    I probably could have avoided my "relapse" by immediately adjusting my diet to match my decreased level of activity, but I went on eating as usual, even indulged in too many jelly beans and sweetened foods, and payed the price.

    I eat a little plain yogurt to chase down my nighttime medication, then a little water, then go back to sleep.  I chose plain yogurt because it doesn't require that I brush my teeth in the middle of the night, just a good rinse is enough.

    I had read that the middle of the night is the best time to target the process that produces pmr symptoms, and this seems to be effective in my case.

    It is unreasonable to expect one's dosage requirement to always be steady and/or always be in decline.  Real-time symptom activity should dictate small adjustments to dosage if needed, with the need for temporary increases perhaps being indicative mainly of one not being on a higher dosage than they need to be taking.

    I am male and am at a dosage level now that probably does not present any danger of bone density loss, but I am still curious as to what dosage level actually causes bone density problems in patients on pred. Anybody know?

    • EileenH
      EileenH dan38655

      Posted

      There was a paper by physiotherapists somewhere a few years ago that said that there is loss in bone density even as low as 5mg pred. However - some people do not have bone density problems even when on doses well above 10mg, I didn't for example and I''m not alone. I don't understand how they can be so sure it was the pred - if you do a bone density scan before starting pred and then later you could be more sure but it is rarely done despite guidelines. Unless that is done you can't know whether there was already some loss. Some experts are of the opinion that the majority of bone density loss happens in the first few months of higher dose pred - so neither will you establish much by doing a dexascan after 3-6 months of therapy. And does the pred change anything - or is it just speeding up something that would happen anyway as it does with other aging processes such as affecting the skin or cataracts?
    • jenny22117
      jenny22117 dan38655

      Posted

      Hi Dan, nice to talk to you. I think I just get a bit upset when I have to put the dose up because of my Spinal Fractures, but when you think about it logically, it is better to do that than risk GCA.

      Jenny x

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