1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Back from holiday - what have I missed???

Posted , 16 users are following.

FlipDover_Aust
FlipDover_Aust

Come on people - give me an update on what's happening in your world!

I'm doing really well - down to 4.5mg daily and 20mg MTX weekly (plus folic acid 3 x 15mg x 3 days).

I have no pain to complain of, and I'm bright, alert and happy back working full time.

My only issue is losing all the weight I've put on in the past 12 months!

1 like, 37 replies

37 Replies

Next
  • sheila28713
    sheila28713 FlipDover_Aust

    Posted

    Well, last week I met Eileen when she and her husband were in Calgary - we spent several hours together and didn't talk PMR much at all (our husbands were with us). We can save that for the forum. Eileen is the first person I've met with PMR. Hard to believe in a way. And I've learned so much from her fhrough this forum about this condition, so it was a pleasure to meet her in person.

    I'm now at 2.5 mg through the DSNS and will stay there for a good while now before reducing further. It is almost 3 years now since starting Pred.

    Glad to hear you are doing well, Flip.

    • EileenH
      EileenH sheila28713

      Posted

      We had such a good time - and I know David enjoyed it too! We were back at the restaurant in Canmore the next day for another helping of fish and chips - except it wasn't on the dinner menu sad   But the waiter asked the kitchen - and they did it for him! biggrin

      We spent 2 days that week in Vancouver having a PMR group meeting and then have been there this week with Diana and Don before coming here to Chicago for the work part of the trip.

      Heading home on Thursday night ...

    • sheila28713
      sheila28713 EileenH

      Posted

      Wow Eileen, what are the odds of the tour taking you to the same Canmore restaurant that we went to!? So glad David got his fish and chips again. I hope it has been a wonderful vacation for you both in between the working aspects of the trip. Bet you'll be glad to be back home. We've missed your posts!

    • EileenH
      EileenH sheila28713

      Posted

      No, we were left to our own devices for all meals except breakfast which was provided at the hotels we stayed in - mostly buns and stuff sad so it was our choice. We were about 10-15 mins walk away from the main street so it was a nice stroll before dinner. The hotel had a very good restaurant too - but no fish and chips!

      I'm rather looking forwards to a rest - sleep for a week feels on the menu already and we have yet to fly/drive home!

  • constance.de
    constance.de FlipDover_Aust

    Posted

    Flip, I don't know whether you read my post about 16 days ago heading

    "How about trying this then".  If you can find it you will know what I have been doing!!

    You seem to be doing really well.  Don't start doing too much though.  The trouble is, as soon as we start feeling better we usually overdo things.

    Is weight a problem with you?

    • FlipDover_Aust
      FlipDover_Aust constance.de

      Posted

      I'm still trying to catch up - there's a lot of posts in 2 weeks!

      YES, weight is a huge problem (pun intended). These days I believe that half my mobility issues are caused from excess weight. I'm so uncomfortable. It's really effecting me.

    • EileenH
      EileenH FlipDover_Aust

      Posted

      I have well over 300 to deal with after nearly 3 weeks with little or no internet...
  • Flutterbie57
    Flutterbie57 FlipDover_Aust

    Posted

    Wow !  No pain, bright, alert and happy working - i am aiming for that.

    Of course I have totally lost the thread - is this since you have been on MTX ?

     

    • FlipDover_Aust
      FlipDover_Aust Flutterbie57

      Posted

      Yes, I've only improved significantly since starting the MTX. It took about 6 weeks to really kick in and I've been able to reduce from 20mg to (as of yesterday) 4.5mg. AND feeling good.

      Don't get me wrong, I still know I have PMR - I can't walk fast, I struggle to get out of chairs and the car, but I'm not in pain any more.

    • judy93591
      judy93591 Flutterbie57

      Posted

      Hi, no, I had no side effects. It is working so well, I sometimes forget pred, and have to go get!  Hee, hee! Amen!  On 6-1, I dropped from 50mg to 45 on 6-8, to 40, on 6-15 to 35. Then took that until today when I see my rheumy!  I AM WAITING FOR MY FACE TO EMERGE FROM BIG CHIPMUNK CHEEKS/FACE. I seem to hover back and forth on weight around 150. I was 138 when started this unwanted journey! 
    • FlipDover_Aust
      FlipDover_Aust Flutterbie57

      Posted

      Nope, other than some raised liver function test results - the rhuemy wasn't concerned, so neither am I.  No point worrying!

  • judy93591
    judy93591 FlipDover_Aust

    Posted

    Well, you asked a LOT!  I have a LOT. I have been quiet here in USA. waiting to see what could POSSIBLY happen next!  But, here goes. In January Rheumy FINALLY got it that she needs to treat ME and my symptoms, NOT a piece of lab work. The new Drs are now being trained to do just that. Therefore, after 3 months of excruciating headaches, jaw pain, blurred vision, diagnosed with TA. whew!  Pred upped from 7 mg to 60 mg. Relief after awhile. BUT, now, ophthalmologist!  Onward, upward. First, rheumy put me on Methrotrexate, an we are lowering the pred. This has REALLY helped. I am down to 35 on pred. Dropped 5 mg for 2 weeks, then 35 until I see Dr on Tues. on eyes, I now have Glaucoma, on drops, and will have cataract surgery in July on one eye at a time. Yippee! Dr says I will see correctly then. 

    ON A VERY POSITIVE NOTE, FOR THOSE LIKE MYSELF, WHO HAVE HAD ALL THE SIDE EFFECTS POSSIBLE FROM PRED.  I GOT MY HAIR GACK. NEVER EVER ! THOUGHT THAT WOULD HAPPEN IN MY LIFE. I AM ECSTATIC!   So everyone, HANG IN THERE! There is hope!

    • faye______00403
      faye______00403 judy93591

      Posted

      I just went through two cataract removal surgeries....One in

      March and one in May....not a bad procedure.  Over with in

      about l5 minutes....be prepared to see so much better and

      also be prepared to see a lot of places in your house that you

      thought were clean and are not, plus.....bummer....more

      wrinkles than I thought I had but I don't even need glasses.

    • Oregonjohn-UK
      Oregonjohn-UK judy93591

      Posted

      Not much chance of that here Judy, I was nearly bald before pred!  I don't think I will ever get back to my teen/twenties  level.

      Old and bald but not out!!

    • FlipDover_Aust
      FlipDover_Aust judy93591

      Posted

      This is great news!!! You are really lucky you didn't lose your sight!

      MTX is amazing - when it works! I would urge anyone who is struggling with pred to give it a go.

    • judy93591
      judy93591 Oregonjohn-UK

      Posted

      Well, I was also. Never thought I would NEVER see my own hair again!  Have hope!
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.