I Did It!

I gave myself my first Enbrel shot this evening and there was nothing to it. I felt it a bit but not enough to make me worry about the next time. (In a week). So hopefully I’m on the road to feeling better but it remains to be seen.

Enbrel suppresses your immune system so you’re more susceptible to infections, colds and flues so there’s that. The other meds I was on prior did the same thing and I did okay but, I think this does it to a greater degree.

I need to be as careful as I can about staying away from anyone who I know is sick. Having said that I’m also not going to fear going out and doing things.

A small victory for me getting over this hurdle today. Mr. CrankyPants had the day off too so that was nice.

Oh the one thing I noticed with this med is a metallic taste after I did the injection. I’ve not heard of that side effect with this med. but hey maybe I’m a ground breaker. lol I have been before.

Fun Days & Easy Needles,

CrankyPants

Weird

Is it weird that I’ve been off both meds that are meant to treat autoimmune disease, one for just over a week, the other for three days and I am beginning to feel better then I have in the last almost two years? I’m still in pain but I always was. I just have less other complications that have literally knocked me off my feet for months.

So from what I can gather with maybe not quite enough time to fully know yet, the meds didn’t help with my pain or swelling at all and they’ve made me much sicker then I otherwise would have been.

I’m glad I feel better, but I feel like I’ve lost so much time. I’m also aware that with the nature of this disease, things could change in a nanosecond.

I sure hope that when I start on Humira, it will be helpful and not make things worse like the other medications have for me. I’ve heard good things about it so I hope I will qualify for it, and it will help me. I’m trying to get into the Rhuemie for next week. It means 10 hours of driving but the snow is coming. In fact we have a bit of snow tonight so, I have to get there and back soon.

I know everyone reacts different to these meds, and my body doesn’t seem to react well to a lot of meds.

Dear body, react well to Humira please. I could do with being in a lot less pain, with a lot less horrible side effects. Signed CrankyPants.

What have been your worst side effects? Have you had good results with any meds?

No snow & Sunny Days,

CrankyPants

The Battle with the Dr. Cont.

There’s not a whole lot to update you on. I’m still at a standstill with my Rheumie. Tomorrow (Wed.) will be day three of waiting for her to return my call about coming off the Cellcept and wanting to look into biologics further.

I suspect we’re in a standoff. I hope not but I won’t be surprised if she ditches me. If she does it will confirm how I’ve been feeling about her. If she does, she hasn’t been a whole lot of help anyway. If she does, I think I still have my Internist in my corner but he can’t script biologics so..It may mean I have to wait until spring to see a new Rheumie.

Things are so uncertain. It’s a crap shoot being on the meds, it’s also a crap shoot coming off of them. Neither choice is good, but for now I need to know how I’ll fair without the immune suppressants, because I know I’m not doing well on them at all.

Honestly I feel like if the disease doesn’t do me in, the meds will anyway. Which one will allow me a better quality of life? Anyone’s guess. There’s only one way to find out.

Life is about risks. I have to do what I feel is best for my quality of life.

Have any of you ever had a Dr. explain the disease or medications to you? I never have. I’m so thankful I researched a lot before I saw Dr.’s I knew what was going on with me before they did. I knew what meds might be given and I knew all about them. I knew about autoimmune disease.

It would have been a scary shock had I not known. Why don’t Dr.’s give us any information anymore? It boggles my mind.

This autoimmune disease is scary, it’s life threatening as are the meds, and Dr.’s tell us nothing? How is that “Do No Harm?”

That’s my Cranky Pants rant for today. I didn’t even know I had that in me until I started typing.

Sunshine & Sparkles

CrankyPants

No Meds

My last post was talking about the struggle with my immune suppressants making me so ill. Last night I decided to skip taking them for the night. I just couldn’t stand the thought of taking them. I also wanted to see if there’d be any difference, knowing it would likely take time.

Boy was I surprised.

I felt better today than I’ve felt in many months. My gut didn’t hurt, the complications I’ve been having one of which caused severe pain were gone.

In. One. Missed. Dose.

Gone.

This has made my decision for me. I’m done with the immune suppressants. If they are taking my life away more then the disease, they are not worth it too me. I need quality of life. I will still be asking the Rheumie about biologics to help with joint pain. I call her tomorrow. I don’t expect to get to talk to her tomorrow but she’ll call me back.

Keep your fingers crossed for me that she’ll still work with me. She more likes to blame me that my body isn’t tolerating the meds like it’s my fault.

I’m so glad I skipped the meds and felt so much better today because I had an Entrepreneurs market to be at with my business this afternoon. It was also very telling. I hope that I continue to improve from here. Hubby keeps reminding me it could just be a good day. He’s right, I sadly need to keep that in mind because of the nature of autoimmune disease. He doesn’t want me to get my hopes really up and be let down. He sees me hurt enough. I’m blessed to have him.

Hope this finds you enjoying your Sunday evening.

Good days & No meds,

CrankyPants 

Immune Suppressants

Some medications I take.
Immune Suppressants

Can I say ARRRRGGGHHHH?! Well I guess I just did.

These immune suppressants make me so sick. I HATE them. I don’t know how much longer I’m going to be able to stand the one I’m on. I’ve tried Methotrexate, Immuran, now Cellcept. They are making me sicker then the disease.

I feel caught between a rock and a hard place. My Rheumie whom I’m not loving, to put it mildly seems to be blaming me because my body isn’t tolerating the meds. She had me crying after I talked to her last. This Rheumie is all I’ve got. She’s my only hope of getting on biologics and that’s not much hope with her.

It’s such a fine line, between, being seen as compliant and not taking meds that make you sicker.

I honestly don’t know what to do. I can’t take much more of what the meds are doing to me and there is a risk going off them because my kidneys need protecting. They’re not in trouble yet but they are showing signs that they could be. Protein to be a little more blunt.

I worry if I come off these meds that my Rheumie will ditch me. I’ve already been passed around so much, I don’t know where to turn anymore.

Oh and my Rheumie is a 10 hour trip away. The only specialist we have in our area is an Internist and he’s trying to pass me off to the Rheumie.

I’m so done. I’m feeling so lost. We need to move out of here but that won’t happen until spring. That also leaves me very trapped as winters up here are brutal. They don’t take care of the roads. We live on the outskirts of town, it gets dark at 4. I can’t see to drive in the dark, nor will I drive the icy roads.

The Dr.s can sure as hell bite me if they think I’m going to make a 10 hour drive to see them in the winter when there’s technology called teleconferencing. One specialist is willing to utilize this, the other (Ahem the Rheumie) doesn’t seem to be so much. Go figure.

Does anyone else struggle with the medications? Have you been passed from Dr. to Dr? Where you told nothing was wrong when you knew there was something very wrong?

I’m so done fighting with Dr.’s.

I’m sick and tired of being sick and tired.

CrankyPants is a bit Cranky. She apparently is talking in third person too. 😉

Fall colours & Happy days,

CrankyPants

P.S Thank you to all those who joined my blog or dropped by for a visit. I can’t tell you how much I appreciate that.