Make me more Dizzy Thanks

So after the whole, “I need a different med mess” yesterday between the pharmacy and the Dr.’s things have yet again changed.

I get a call back from the pharmacy today from the first Pharmacist I’d talked too. She called to tell me that my GP had got back to her and sent in a new prescription. It took me a minute to process that after being told yesterday no change because we don’t have a diagnosis yet.

In a sense this is good news..

The good part is it’s a pill form, so no more having to drink powder. Yay. I don’t have to work out taking it around my other meds. Believe me that’s been complicated. Yay! And it’s another option yay! With an extra script on file, it saves me another trip to the Dr.’s. Always good!

The bad part is, even after my benefits cover 80% of it, I still have to pay $33 out of pocket. When you’re on lots of different meds that you’re paying 20% for out of pocket,that adds up. It seems the only meds that help me are the most expensive ones. I’m not even a high maintenance person but when it comes to my medical needs, it seem I’m expensive.

Pharmaceutical companies sure make a mint off poor people. It’s sad really.

Thankfully I don’t have to pay anything for my Enbrel because that would be $1800/month. Who the hell can afford that?! My insurance covers 80% of a generic form of Enbrel. The Enbrel Co. itself is covering the rest and giving me the real Enbrel. If I had to pay 20% for that, it would cost me over $800 a month.

I feel bad for those who really need the med and don’t get coverage. It’s got to be disheartening.

So that’s my update for today. I swear I have my own pharmacy here of meds that I’v had to come off of. It’s a shame they couldn’t go to someone who couldn’t afford them. I haven’t been able to dispose of them yet because it just feels like such a waste. It will feel like a bit less of a waste (At least in my mind) to hand them into the pharmacy when they’ve expired.

Hope everyone is having a light pain day today.

Sunny days & Good views,

CrankyPants 

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A Little Positive

It seems my stomach ache and the issues that went with it have finally subsided since I went off the meds. I can’t tell you how happy that makes me. I still have one complication that came of it all that’s not going away, which makes me wonder if it’s the MCTD causing it and not the meds. Or the meds caused it, but it’s not getting better because of the disease? It’s always a guessing game, that I don’t really want to play.

My stomach feeling better removes some of the concern of making the 10 hour trip on Monday. As long a day as it will be, I get to spend it with my Hubby who is in busy season at work so I don’t get to see much of him. Maybe in some ways, or lots of ways Monday will be a gift.

Fingers crossed I get the nice side of my Rheumie that day especially when I have to tell her I stopped taking Plaquenil too. It can’t be good when the meds have made me sicker then this wicked disease. If that’s the case why would I stay on them right?

I’m still hopeful to be able to get Humira and that it will help without the same terrible side effects. I’ve heard lots of good about it.

How have you been doing?

Good News & Twinkly Stars,

CrankyPants

What most won’t see…

This is the reality of living with autoimmune disease. These are taken more than once a day.  Most will make us just as sick in one way or another. They also help keep us alive. We may not look sick to the world but we are sick as hell.

Some medications I take.
                                                                  Some Medications I take.

Below is my first introduction to medications for what they called lupus at the time, but since have changed their mind on more than one occasion. For now they call it mixed connective tissue disease, because the majority of the medical world is clueless. Apparently the disease has to fit in a box. I wonder, does the disease know this?!

Methotrexate. A chemo med I injected myself with intramuscular once a week for 6 months. A friend taught me how, not the doctors. Caused a lot of complications.  Had to come off it. 

So if you know someone battling one or usually more of these diseases, remember there’s a lot going on behind the scenes. If we/they have to cancel plans, it’s not because we want to, it’s because we have to. I would say that we live on a daily basis with the kind of pain that would put most people in bed. That’s our norm. On a bad day, double or triple that pain.

Sprinkles & Sparkles,

CrankyPants

Medications from Hell

Tackling this topic is tough. In a sentence I hate the medications used to treat autoimmune disease. As far as I’m concerned they all seem to create other wicked issues that are just as bad as the disease itself. I’m so tired of them. Why can’t they just come up with medications that help, not make things worse in a whole other way?!  Or better yet, a cure would be great!

Methotrexate(A chemo drug) Caused major gut issues, aura’s many times a day, I couldn’t breath and struggle with that now, fatigue and a bad taste when I did the IM injection, suppresses immune system. It only started to help with pain after 6 months when I had to be pulled off of it because of the side effects.

Plaquenel– I’m still on it. Can cause damage to your eyes, have to have them regularly checked, causes me gut issues. I haven’t found any improvement in my disease at all.

Immuran- Tried in place of Methotrexate. Also an immune suppressant. Caused bad gut issues, which caused other more embarrassing complications and extreme pain. I didn’t see any improvement in my disease. On it for a year and then pulled off.

Cellcept- Also an immune suppressant. Trying in place of Immuran. It’s causing me terrible gut issues and again embarrassing issues that cause extreme pain. I started on half a dose, was raised to full dose and got worse. I’m back to half dose and still not doing well. No improvement in disease activity. I’m going to be asking about coming off of it and trying to get approval for Enbrel or Humera. The ONLY reason I’m still taking it is to protect my kidneys that are showing signs of being at risk, or I would be so off this.

Prednisone-This should be a whole post on it’s own. For now I’ll say that I refuse to put this medication in my body. Despite pressure from all my Docs to do so. I just won’t do it. Shouldn’t it be my right to choose what I feel is right or wrong for me?  I think it would also mess with my epilepsy and I’m not willing to take that chance.

It causes:

  • Moon face
  • extreme weight gain
  • extreme hunger
  • mood swings
  • insomnia
  • acne
  • your teeth to fall out
  • your bones to become weak
  • wounds don’t heal
  • lowers your immune system so you can’t fight off infection
  • addictive so you have to be weened off it. Can only be used temporarily for short term pain relief
  • messes with your adrenals
  • Can cause diabetes

I’m sure there’s many more complications but this is enough for me not to touch this drug with a 10 foot pole. I can’t for the life of me wrap my brain around how easily they give this out, but fight giving out pain killers.  Thankfully I’ve built a trust with my GP and I get pain killers.

I figure if Prednisone relieves pain and then we have to be ripped off of it. Wouldn’t the pain be worse in that we got used to being without pain?!

Having said all this, I have to say that everyone reacts different to the medications and some may not have any problems, some may have different ones than I. I wish I didn’t have these complications and I feel like the Dr.’s blame me for having them. I feel like they are taking away my life more than the disease itself at the moment.

There are other medications used as well, these are just the ones in my world. I’m on medication for epilepsy and for pain as well.

Flowers & Sunshine,

CrankyPants