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Life and tapering to 25 mg

Posted , 7 users are following.

LisaCACO
LisaCACO

and it's not fun. Just here for a little whine. My body is not at all amused. Not a flare, just general aches and pains, fatigue, nausea, etc, only this time I have a cold on top of it. sad Think I picked it up visiting my Rheumatologist last week, thus proving it was a waste of time wink.  

Next doctor visit is the neurologist to discuss my expanding peripheral neuropathy, which is now beyond my head and face to my tongue, mouth and legs. Not sure the cause, but noticed it a week or so after biopsy for GCA.

I did get a clean bill of health from my dentist whom I visit every 4 months now. He says my teeth are fabulous. They should be since I brush them 2x every day, 5 min each time with a sonic tooth brush, then floss. Totally freaked out about what all these meds are doing to my teeth: Prednisone, LMWH, gabapentin, you name it, i'm on it.  It was nice to go to a doc and hear good news for a change. 

oh the fun of it all. It made celebrating my 54th birthday so much fun, lol. I did get a panini maker from hubby and kid, which was totally cool. Even though I only eat solid food for dinner (and can barely taste anything due to the neuropathy) I did want a panini maker and it's totally cool. they should be government subsidized :D. 

Meanwhile I've continued to have my play dates for my daughter while sick. I'm starting to appreciate the custom of marrying your daughter off at age 10. Odds are against both of us making it thru this summer. stay tuned...

0 likes, 7 replies

7 Replies

  • Juno-Irl-Dub
    Juno-Irl-Dub LisaCACO

    Posted

    Hi Lisa, poor old you, you're really having a hard time at the minute!  Tapering is no fun esp. in the first few weeks of reducing when, as you said, the body is not at all amused. Can I ask what dose are you tapering from (if you excuse the bad English)?  There's lots of expert and wise humans on this forum who'll advise you if needed. But stick in there - you haven't lost the old sense of humour anyway!!  Kind regards and thoughts, J
  • tina-uk_cwall
    tina-uk_cwall LisaCACO

    Posted

    Hi lisa, what a Bummer. But it could be that your cold is causing or responsible for the aches and pains and fatigue. That's how I felt when I had a cold and when I began to get better so did the aches and pains etc. I didn't realise that any of the drugs you're taking has the potential to damage your teeth, it's as well you're looking after them.

    i love the idea of the panini maker, when I was reading it I immediately thought what's the point of that poor lisa's on a liquid diet, so it's good to hear that you're onto 1 meal a day, it's a start ok. 

    Yes this neuropathy is proving to be as big a pain in the a...as PMR. So I really hope it's sorted soon in the meantime I hope you're walking around with a huge smile on your face, those dental appointments must be costing you a fortune in which case you must show them off!! Get well soon, regards, christina 

    • LisaCACO
      LisaCACO tina-uk_cwall

      Posted

      fortunately we have dental insurance, so most of the visits are covered. the rest I'll pay out of pocket because prevention is way better than the result. Anticoagulants do icky things to your teeth as well as prednisone (calcium depletion, etc). And then I have those lovely antiseizure meds which dry your mouth-a bad thing for teeth. All together it's just a lovely place for bacteria. I do have to give kudos to prednisone for clearing up my allergies and eliminating that source of bacteria. The one thing Pred is doing right for me :D. No post nasal drip and assorted ick. woohoo! That certainly helps the mouth. Prednisone giveth and taketh away...
  • Mrs.Mac-Canada
    Mrs.Mac-Canada LisaCACO

    Posted

    Belated Happy Birthday Lisa🎂🎁.  Hopefully you'll be able to taste some of those yummy pannis.  

    I'm really sorry to hear your latest problems.  I wish you could be in some medical study group with expert doctors. Maybe you'd find someone that could help you.  

    I know absolutely nothing about this but has anyone talked about plasma exchange with you?  I just read about it and it is used for people with autoimmune diseases that don't respond to other treatment. 😷??

    Would it be possible for your daughter to go to camp or ??  for a week so you could just do nothing but look after yourself.  You are so amazing to keep your spirit up the way you do but some real down time might be good for you.

    There's only one way to go and that's up. Hope it happens for you soon.

    Hugs,

    Diana🌸

     

    • LisaCACO
      LisaCACO Mrs.Mac-Canada

      Posted

      dear sweet daughter has exactly 84 days of summer vacation (I know, who's counting?) and I have her in 4 weeks of camp and a couple of weekend camps. she put her foot down about more of them. she's entitled to a life. The problem with summer camps is that I have to get up early in the morning and drive her to the camp, then drive home, and none of them are remotely near us, since my dear sweet daughter demands intellectual stimulation during her camps. Hers are at our local art and nature museums, not to mention writing camps. If only she were able to drive...we keep threatening to send her via her bike wink. we thought about overnight camp for her this year but decided against it since we'd had all this upheaval and didn't think she'd do well away from us. 

      Plasma exchange, huh? will look into it. I do wish I were on the two coast of the US. that's where most of the research seems to be happening. I'm in Denver, CO and zip is happening here. With hindsight I'd have stayed in California or moved back east. These diseases should give you advance warnings.

    • EileenH
      EileenH LisaCACO

      Posted

      Hi from China lol  !

      My daughter was wondering the other day how she was going to survive the school summer holidays with her step son! She loves him to bits but he wants to talk all the time - which she doesn't. He is 16 though so they're hoping for a summer job before he starts A-levels (the last stage before working/college).

    • LisaCACO
      LisaCACO EileenH

      Posted

      omg, my daughter's mouth is going nonstop! maybe the two would make a great couple wink. it's amazing stress on my poor temples. the throbbing...thank god she reads. turns out she even talks in her sleep. 

      hope you're enjoying china :D.

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