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well back up...

Posted , 9 users are following.

gina30088
gina30088

Hello All

Was holding at five, then started having all to familiar headache

That was not relieved by any thing, then shoulder pain, fatigue, sweats, hello PMR

My dear Rheumi said although some earlier issues she would attribute to low adrenal function, its apparent this is a flare ,tried 10 mg,

headaches so much better, but because not gone, and still having other symptoms( including episodes of tinnitus) wants me on 15, titrate up at 2.5 if no relief in 3-4 days. And stay untill after my

daughters wedding in 3 weeks.Then I will go in and we will discuss whats next.

So, in someways discouraging, but in others have to be thankful. at least there is something to take to feel better.i forgot how miserable pmr was.

Staying strict to diet and water increase, and have to say oddly for me, I started to gain fat areas on the decrease, and those are going away on increase.. how weird is that, but I will take it..She thinks maybe my adrenals were always stressed, and pred actually may be doing better job, on cortisol etc. balance  ,so will have to look more cliosely at the adrenals when time to decrease again

She stressed the effects of physical stress and mental on the return of symptoms , and I was very busy and active as was feeling good.

Moderation even when feeling well , have to remeber that.

She also said to try taking dose at  8 in am instead of 2 am which i usually did. She understood why I was, but feels its worth a try to see if I can avoid the early evening fall to fatigue. Not a fan of splitting dose, though let me try it when was on 60 mg( suspected GCA) neg biopsy.

Although says not definitive, feels vasculitis  hide from biopsy,

so watchful with the headaches.

I am writing this all because I think there is a lot of good advice 

from her, ...thoughts? 

So wish me luck, during this set back, I am nit going to let myself wallow about it. as 

Oct 15 th.. my PMR ( boo) , pred, ( friend)and I have a wedding to go to,  

😉 

 

 

0 likes, 13 replies

13 Replies

  • Kassiebeetle
    Kassiebeetle gina30088

    Posted

    Dear Gina. I liked all the info you gave us. My question to you is why are you taking the pred at 2am. I m interested to hear why others take their pred overnight too. I take it then because I get shortness of breath, feel like my head is going to explode,  don`t tolerate very well. It doesn`t matter what time I take it I still have terrible sleeping issues.

    ​A question for Eileen and others. Is it of valuable to have a cortisol level done? Cheers Kath

    • gina30088
      gina30088 Kassiebeetle

      Posted

      Its from info, I recieved on this site.

      It is the time your body natural would release the hormones , if not on pred.

      Probably oversimplification, I am sure experts can go into more detail .

    • EileenH
      EileenH Kassiebeetle

      Posted

      A study found that the optimum time to take pred to minimise morning stiffness and pain was 2am - the peak blood level of the pred is then at about 4am - just before the pro-inflammatory substances are released in the body at about 4.30am. The pred is ready and waiting and no inflammation takes hold. The delayed release version of pred (Lodotra/Rayos) was developed as a result: you take it at 10pm and it splits to release the pred all at once at 2am without you having to get up. 

      Some people find that waking early and taking ordinary pred at, say, 6am and then settling down for another couple of hours before getting up works well too - the pred is working by then and the effect lasts longer into the evening.

      But if you crash early evening - a far better way of dealing with it is to have a short nap BEFORE it happens. 

  • EileenH
    EileenH gina30088

    Posted

    Who IS your rheumy - cos she is worth hanging on to!!!!!

    Feet up, rest and have a good time at that wedding. Then think about the rest. And you seem to have learned some of the hardest lessons in this journey smile

    • gina30088
      gina30088 EileenH

      Posted

      Hi Eileen

      For sure, And I live in western suburbs of Illinois right outside of Chicago.

      I will be happy to share her name if anyone interested.

      Yes. rest and acceptance  are my new mantra..  

      Thanks for all you do

      Hope you are well

      Gina

    • EileenH
      EileenH gina30088

      Posted

      She needs cloning and sharing out all over the USA!! 
  • Rimmy
    Rimmy gina30088

    Posted

    Hi Gina

    Your post contained some interesting observations eg:

    'have to say oddly for me, I started to gain fat areas on the decrease, and those are going away on increase.. how weird is that, but I will take it..She thinks maybe my adrenals were always stressed, and pred actually may be doing better job, on cortisol etc.'

    I also found that I lost weight on higher doses and more inclined to increase on lower and I have also thought that I had adrenal issues well prior to PMR/GCA diagnosis - YEARS before in fact - and since taking Pred many of those 'fight & flight' symptoms have resolved ... This is one of the few times I have seen the longer term aspects considered on this and other forums - so thanks for that.

     Hope the wedding is fun for you !!

    Best wishes

    Rimmy

    • gina30088
      gina30088 Rimmy

      Posted

      Interesting isnt it?

      Also my heart rate ran very high and had periods of sinus tachycardia for years... Cardio felt adrenal issues.

      On pred , heart rate was always in the 80s or lower.

      I consistantly ran in the upper 90s to 120 betore 

      Too bad so many nasty side effects.....

      Thanks, I am sure the wedding will be wonderful..

      Take care

      Gina

  • Michdonn
    Michdonn gina30088

    Posted

    gina30088, I agree with EileenH, I wish your Rheumy would talk to my Rheumy here in NM. Sounds to me that your Rheumy is making the right call. Get well relax enjoy the wedding, then taper. Think positive, smile. 🙂

    • gina30088
      gina30088 Michdonn

      Posted

      Hi

      Appreciate your kind words of encouragement

      Yes she is a gem

      Be well,

      gina

  • kathy67492
    kathy67492 gina30088

    Posted

    Funny about the fat increase on the lower dose...that has been my experience too! Weird!

    I travelled travelled to a family funeral and put everything into it, bouncing around, greeting everyone, etc...long days!...and I did not take my twenty minute breaks...sitting down...putting my feet up.

    So, I crashed and burned after that. Rest, Resr, Rest....have a great weddig😊

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