Author Topic: Disease Thread  (Read 1989 times)

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Offline _33

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Re: Disease Thread
« Reply #50 on: July 01, 2022, 04:24:02 PM »
That's awesome dude, Ts & Ps for continued improvement!

Offline stunted

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Re: Disease Thread
« Reply #51 on: July 01, 2022, 04:42:26 PM »
hell yea!  :driving: :driving:

Offline steve dave

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Re: Disease Thread
« Reply #52 on: July 01, 2022, 04:49:45 PM »
Awesome news!

Offline wetwillie

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Re: Disease Thread
« Reply #53 on: July 01, 2022, 05:15:31 PM »
Great news DBT, kick whipping it’s ass
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Offline Kat Kid

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Re: Disease Thread
« Reply #54 on: July 01, 2022, 07:01:12 PM »
Hey guys!

About 2 weeks ago, like 2-3 days after my first dose I started to feel marginally better.  Each day has been a little bit better since then.  I just had my second round yesterday and gave myself the shot and it was super easy actually.  They told me that I probably wouldn't see anything in the first 2 weeks and it's usually between 1-3 months before you really start to see results.  It's already working and just the difference from where it was to now is substantial.  I can walk almost normal now and the pain has gone down dramatically.

Hoping to continue getting better as time goes on but early results are this is just a miracle drug.  My outlook is so much better already and I've really had no side effects of any kind so far.  I have a long way to go but really encouraged this is going to give me a second chance at life I didn't think I would have to be able to live a more normal life.

hell yeah buddy!

Offline DaBigTrain

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Re: Disease Thread
« Reply #55 on: November 21, 2022, 12:58:35 PM »
Hey guys.

So it's been a while since I last gave an update here. My last big update was after a few weeks on Humira and I was doing a lot better. Well, that lasted until about the end of July. At which point my symptoms came back with a vengeance sadly. The start of August I was back to barely being able to leave my apartment and I had to do grocery delivery again. At the end of August my dad came down for a few days and went with me to my follow up appointment with my Dr. They said that sometimes it takes a while for the medicine to really start working again and we should wait a little longer.

I was still working but not as much and my boss kind of let me slack a bit because he knew what I was dealing with. Eventually tho he convinced me that I should go on FMLA/STD since that is what it is for. So since about the second week of Sept I have been off work and my mom came down at the same time and has stayed with me the past 2 months. I wouldn't have been able to take care of myself without her help. I have been back to being almost unable to walk or sit normally, sleeping can be rough getting comfortable too. I had been talking to my Dr and since it had been almost 4-5 months and seeing no results, we decided it was time to move on to something else. Humira is the ONLY approved medication to treat my condition, but there is another treatment that has seen positive results and is in the same class of drug as Humira. Through a lot of hoops and stuff I was finally approved for this new medication a few weeks ago. The medication isn't a new drug but treats a lot of the same things as Humira.

Tomorrow, finally, I start my new medication called Remicade. When I was using Humira it was just a shot I gave myself every 2 weeks, with Remicade it is done by infusion. So tomorrow I go to the infusion center and will get my first dose via infusion (IV). My mom left on Saturday morning, but my dad flew in Saturday afternoon and is taking me to get treatment. Then we are headed back to KS for a few weeks until I have to come back to Texas for my next infusion. I am so hopeful that this works better than Humira and keeps working. Dealing with chronic pain just takes it out of you and getting a glimpse of what a new life could be, and then having it taken back again has been very rough.

There are other drugs in the pipeline, but Remicade is the last line until then, so this needs to work. Anyways just thought I would give you guys an update. This is a terrible, terrible disease and I just want to get better and back to a semi normal life.

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Offline nicname

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Re: Disease Thread
« Reply #56 on: November 21, 2022, 01:06:17 PM »
You can handle this, and obviously have been doing so admirably.
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Offline cfbandyman

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Re: Disease Thread
« Reply #57 on: November 21, 2022, 01:29:18 PM »
That sucks, but hopefully you can keep getting the help and relief you need.
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Offline ChiComCat

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Re: Disease Thread
« Reply #58 on: November 21, 2022, 01:54:24 PM »
Hoping for the best with the new drug

Offline Institutional Control

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Re: Disease Thread
« Reply #59 on: November 21, 2022, 02:10:11 PM »
Best of luck to you, DBT. 

Crazy that I never saw this thread before.  Update on my daughter from the opening post ITT.  She had a pretty major setback last March.  She had 3 seizures on a flight from NYC to DFW. Dr had to increase her dosage and so far, so good.   Price of her meds has not gone down but we have an HSA account to help with those costs.

Offline Pete

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Re: Disease Thread
« Reply #60 on: November 21, 2022, 06:10:17 PM »
Damn, hang there!

Offline stunted

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Re: Disease Thread
« Reply #61 on: November 22, 2022, 02:42:56 PM »
You are stronger than I could ever hope to be.