Update

Holy crap on a cracker it’s been a crazy busy 12 days. Those 12 days I was also plagued with fatigue. Not just a normal tired but disease related fatigue. That’s like trying to function tethered to concrete.

Yesterday and today have been a bit better in that regard. However, I’ve also been having trouble breathing and I still have horrible pain where the sun don’t shine.

I am sadly now awaiting to hear about an appointment for a colonoscopy. I’ve been in this kind of debilitating pain for 6 months now. I’m loosing weight while eating a lot. I also seem to get a lot of gut aches as well. I’m very concerned about the possibility of crohns or colitis as it runs in my family. No pun intended but kind of funny non the less. This all started with the DMARD’s, so I don’t know if the meds casused this or the disease. Maybe the meds started it and the disease took over. Who the hell knows. All I know is something is very wrong and not getting better.

It really scares me. It would be my worst nightmare.

As far as the Enbrel is concerned, there’s good news there. I am being approved for it with full coverage. I will be starting in about 3 weeks. I could have started right away but because I’m required to see the Rhumie once every three months on it, I opted to put it off a few weeks so I don’t have to make the 10 hour trip in the worst of winter, in an area that doesn’t look after their snow/ice covered roads.

That causes me a severe amount of panic and we all know how good that is for the disease, not to mention my Hubby who has to deal with my panic while trying to drive these horrible roads.

I’m so thrilled to be approved for Enbrel with full coverage. I’m very hopeful. Not only is it known to control the pain and swelling of this disease (Rheumatioid/Lupus) but it’s known for controlling crohns and colitis.  It can also put all these into remission without the horrible to me side effects of all the other meds I’ve been on. It’s a med that works alone, so I don’t need to combine Enbrel with the other aforementioned meds that I’ve been on, or Prednisone.

If I haven’t mentioned it before (And I probably have). I won’t touch Prednisone with a 10 foot pole. It’s been no easy task standing my ground on that one with the docs either.

My brain just can’t wrap around how that drug is good. It may help with pain but causes all sorts of other very serious issues. To me, the trade off is not worth it in any way shape or form. I know for some it is, but not for me.

So that about catches you up.

How are you all doing?

Spring Flowers & Sunny Days,

CrankyPants 

 

 

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4 thoughts on “Update

  1. Enbrel sounds like a magic bullet. What great news, and I hope it works out.

    There’s a blogger I know named Elyse who has some sort of colitis problem. Have you heard of her? She also has a Trump problem.

    I would think driving on those roads up there, between October 1 and May 1, would be risky. Gotta give credit to you Canucks for your courage.

    Liked by 1 person

    1. I’m really hoping! And it better be for $1800/month if I had to pay. lol I do know Elyse and I’ve chatted with her about it. I think she has crohns. Oh yes and I wish there was a med she could take for her Trump problem or rather we could all take for that! LOL
      Thankfully for the first time since we’ve lived up here, we still have no snow yet. It’s been wonderful but it will come soon enough and I don’t have the braveness of a Canuck. It’s pretty bad driving.

      Liked by 1 person

  2. I’ve been using Prednisone for the lasts few days. It has definitely helped, but I worry about the side effects of using such a powerful drug. I’m only taking it for a few days on a taper to try to calm down the latest flare which was extremely difficult to tolerate. What kinds of problems did you have with it? I need to have the dreaded colonoscopy as well. Sigh. Glad to hear you got approval for the Enbrel.

    Liked by 1 person

    1. The side effects are many, brittle bones, teeth falling out, moon face, extreme weight gain, mood swings, dependency. Have to be tapered off every time. Cushing’s disease, acne. It may help in the short term but the damage it will do in that short term and beyond is terrible and to me worse than the disease. I hope you feel better soon. I’ve never been on prednisone per se only through an inhaler (Flovent) or a couple of cortisone injections and that was enough. The side effects from that alone was too much for me. Also I fear having to be tapered off since I have epilepsy and that would not go well with that. It also causes insomnia which would not mix with having epilepsy. There’s just too many dangers of that drug in my mind to ever go there for me.
      Oh also, I’d be worried about the pain feeling even worse coming off because now, I’ve gotten used to much less pain, so my normal pain would feel so much worse. Anyway as you can read the drug terrifies me and I for me just won’t touch it.
      Thanks so much and sorry Lyme is giving you such a hard time. 😦

      Liked by 1 person

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