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Thread: New Meds Monday

  1. #1
    Boolit Grand Master

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    New Meds Monday

    Gentleman,

    Monday I am starting a new med for my MS. Its been on hold for a couple months now do to the covoid 19.

    I talked to the neurologist in January about hard spots and other problems at the injection sites for the rebiff and that it was getting harder to "stab" myself 3 times a week. She agreed and also thought the rebiff had been long enough that there were better available now. Mid February I started the starting does of tecfaderra and this was a disaster for me. 9 days of diarrhea, Mobility, balance and urgency problems dont go well with that. So it was stopped. And then the covoid came.

    She didnt want to lower my immune system while that was raging around with the Maven Clad.

    Im looking forward to the Maven Clad. First month is 1 week of pills second month is a weeks pills and done. Like most MS meds it controls but dosnt cure.
    While Im not expecting really big improvements, Im not expecting to walk with out assistance. It would be great to get around the house and shop with a cane and be able to get in and out of a car easily. My chairs for out and about and extended use. The Support at MS lifelines think this is realistic goals.

    Please keep me in your thoughts and prayers as I start these treatments. Im looking forward to not having the injections at the least.

    Country Gent

  2. #2
    Boolit Mold BillyCanuk's Avatar
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    Sending positive vibes your way brother.

  3. #3
    Boolit Master

    BigAlofPa.'s Avatar
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    Same here with positive vibes and prayers. This covid 19 is making things tough for all paitents. I was due this spring to have my aneurysm around my heart ultrasound done. To be sure it didn't grow. I emailed my cardiologist weds. Still did not hear back.
    One round at a time.
    Member of the NRA,GOA and FAOC. Gun clubs Zerby rod and gun club. Keystone Fish and Game Association.

  4. #4
    Boolit Buddy
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    Country Gent you are in my thoughts and prayers!

  5. #5
    Moderator Emeritus


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    Same here boss. I've always been impressed with what you do. Good luck.

  6. #6
    Boolit Grand Master

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    Wishing you the best of Luck with this. I had the same problems with Tecfaderra, I just couldn't tolerate it. I handled the Rebiff much better but those shots were getting old! You will be in our prayers.

  7. #7
    Boolit Master


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    Yes, also praying for the new medication to be the "miracle drug" that will allow you the mobility you need and desire. In fact since I am praying I will just ask that there is healing in that medicine. May the Lord grant that request.
    I too have been very impressed with what you continue to do and pray that your MS is put into total remission.
    Mark 5:34 And He said to her (Jesus speaking), "Daughter, your faith has made you well. Go in peace and be healed of your affliction."

  8. #8
    Boolit Grand Master

    Wayne Smith's Avatar
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    Continuing to pray for you, now with more specificity.
    Wayne the Shrink

    There is no 'right' that requires me to work for you or you to work for me!

  9. #9
    Boolit Master
    Scrounge's Avatar
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    prayers for you

    You made me aware real suddenly how blessed we are here. You're in my prayers, now, for the blessings you need.

  10. #10
    Boolit Grand Master

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    After the way the tecfaderra hit me Im just a little leery of the new med. I have the instructions down and will try it. Its a little hard to schedule since no other med can be taken 3 hours before or after. For me this means about 1:00 in the afternoon. I have small pill bottle to keep them handy until then. Talking to support the big issue with the new med is fatigue.

    I we are still slowly going on the shop and getting things set up. Today we cleaned in the garage portion and moved things back against walls after the electrician finished. This gives me a lot more room to move around. I need to make a small bench for the little harbor freight 7 X 12 lathe. I really dont want it on the bench with tool boxes and vise. Wont be a big deal 20 X 30 with 2 up rights and feet will be a butcher block style to match the big bench.

    Im all ready for new med Ive been hydrating yesterday and today as was recommended. will add a Tylenol to the morning meds to combat any headache as recommended. Its only one week so it shouldn't be to bad.

    I Am just to plain old stubborn to give up. I may be slower and work a little different but I can still get things done. ( on the big bench I spent a week drilling the dowel holes when I was up to par would have been 2 days). I have to think things thru a little more before starting them.

  11. #11
    Boolit Master WRideout's Avatar
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    May God bless you and bring you comfort and peace.

    Wayne
    What doesn't kill you makes you stronger - or else it gives you a bad rash.
    Venison is free-range, organic, non-GMO and gluten-free

  12. #12
    Boolit Grand Master

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    It looks like today is the big day! Wishing you the best.

  13. #13
    Boolit Grand Master

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    Took the first dose today at 3:00 so far so good no side effects so far. This med has to be separated by at least 3 hours before and after taking. SPent most of te day oitside too.

  14. #14
    Boolit Grand Master

    Wayne Smith's Avatar
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    Did you have air you can wear there like we did? I was working on the small lathe during our thunderstorm and the sweat was dripping off of me. If that was you it can change how the med works if you become dehydrated.
    Wayne the Shrink

    There is no 'right' that requires me to work for you or you to work for me!

  15. #15
    Boolit Grand Master

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    Wayne I have air in the shop but the front wall is still open so not much there. Ive been drinking 40-80 ounces of water a day now to stay hydrated. Ine of the effects of this med is increased urination. Taken and when ingested into the nerves it flushes out.

    So far no issues with it.

    I can remember the Nationals at Perry during hot years. The lie officers medics and umpires would walk up and ask boldly Have you peed today? If nothing coming out your not taking enough in. LOL

  16. #16
    Boolit Grand Master

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    Its good to hear that you are not having trouble with it. Hoping it works for you.

  17. #17
    Boolit Grand Master

    gwpercle's Avatar
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    Best of Luck , prayers sent , keep the faith and positive outlook .
    Gary
    Certified Cajun
    Proud Member of The Basket of Deplorables
    " Let's Go Brandon !"

  18. #18
    Boolit Grand Master

    Wayne Smith's Avatar
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    Good. I'm glad you know to stay hydrated. Many don't. Air you can wear is common here in the summer - 98% humidity or greater.

    I will keep praying that this medicine is your miracle.
    Wayne the Shrink

    There is no 'right' that requires me to work for you or you to work for me!

  19. #19
    Boolit Grand Master

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    Finished the first cycle last friday on issues. I seem to have better control and am standing easier now but I am betting its more mind than meds right now. Next cycle is next month

  20. #20
    Boolit Grand Master

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    Hoping its for real and that it continues to work for you.

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