Can't stop losing weight (long)

JunkieBrewster

I have an autoimmune disease called Behcet's and I had been in remission for about 3 years. It's a vascular disease and it caused me to get really bad ulcers in my mouth, throat and esophogus. 

I once spent a week in the hospital because I couldnt eat or drink.

When I got pregnant, we decided to switch to Humira, and I missed a few infusions while insurance kept denying/we kept appealing.Then we tried Enbrel, same thing. At this point I had missed 3 infusions.

We finally decided to stick with the remicade, but at home.

A comedy of errors then occured.

Caremark kept saying they didnt have the orders despite the Dr having proof they faxed it 4 times.

I missed another infusion.

THEN they finally sent the drugs, but the order got delayed, the ice pack melted and the drugs went bad.

I missed another week.

They sent the drugs but forgot the solu-medrol, infusion pole, pump or pump tubing, and we didnt find out until the nurse was here.

I missed another week.

The solumedrol shows. The nurse does my IV, and is about to inject the solumedrol and realize the pharmacy fucked up and sent me solumedrol in a box that said NOT FOR IV USE.

I missed another week.

Needless to say I went into a flare and as soon as the morning sickness started, my mouth hurt so badly that I cant eat.

I can not tolerate anything acidic, anythng with sugar. I am existing on ramen and milk.

I have lost 32 lbs since I got pregnant, and I got in trouble by the OB last week. She wasn't being mean, just THIS IS SUPER SERIOUS, and I left the office in tears.

That was Wednesday and I have lost another 5 lbs since then.

I keep calling Caremark to tell them how badly their fuck-ups are affecting me, and they just don't give a shit.

THey did not really give a shit they could have killed me and the baby by sending me IM drugs with a label to infuse intravenously.

My husband is seriously talking about quitting his job of 20 years to get us out of this insurance. We love Aetna, fuck fuck fuck Caremark (We cant chose another speciality pharmacy)

I just needed somewhere to bitch and someone to tell me I am not going to kill my son. I FINALLY got my infusion yesterday but it will take 8 weeks before I feel any better.

I need a hug

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CandEChicago

Hugs...I really dislike Caremark. Are you able to go to the ER just in case any of this happens again?

In the meantime hopefully you will be able to start eating more foods.

BankerBSN

Fuck Caremark.  Any nutrients that you are getting are being stunted to baby so you are going to be the one who is suffering nutritionally.  Anything else (high in vitamins and not so much salt) you can try to get down?

ETA: Since you have a home nurse, will your OB order TPN just till these ulcers go away?  (I know that your OB can order it cause this is commonly done with hyperemesis patients.) I mean, even if it is just twice a week.  You need SOMETHING and your OB lecturing you was not that.

amedbery

Jesus, so sorry you are going through this. Sounds like a god-awful disease. Have you talked to a lawyer? A letter on law firm letterhead sometimes gets a ball rolling...

JunkieBrewster

Thanks guys. My OB had mentioned going more extreme if I kept losing but hopefully I can just push through some.

Protein shakes are out, something in there sets me on fire.

As a general rule, we eat pretty healthy around here - tonights dinner was baked pesto salmon, quinoa and a spinach salad. I took one bite of salmon and was in tears. 

Some broths are okay but for some reason, pasta goes down best. 

I did buy some cans of peas and carrots to add to the ramen and I am going to try some mac and cheese with tuna tomorrow. 

I can tolerate mushy veggies well, for instance we made zuchinni noodles with dinner last night and I ate some of those with feta and olive oil, but there just enough calories in there. I think I had 500 calories total yesterday. 

Plus for some reason, I can barely get 4 bites in before I am full, probably because I am chuggung as much milk in as I can.

Even my well-meaning husband made a comment tonight that upset me. 

I JUST WANT FOOD, haha. I would kill for a mushroom cheesesteak right now!

ajlmom

I am so sorry that you're going through this. This makes me so mad because it's totally preventable but you're sick because this messed up health care insurance system fails.

I deal with drug reps a lot and they often have samples. I would suggest reaching out to the company that makes your medication, tell them your story and hopefully they'll help out, maybe give you free meds during your pregnancy in case your stupid insurance denies you again. I know Enbrel is marketed by Amgen but not sure which company sells remicade. Drug companies make lots of money and they're usually pretty good at giving back to the community. The ones I deal with at work all have patient assistance program for ppl who can't afford their meds, so I hope they'll help out a poor prego lady who had lost >30 lbs.

Good luck and big ((hug))

JunkieBrewster

heleng5 said:

I am so sorry that you're going through this. This makes me so mad because it's totally preventable but you're sick because this messed up health care insurance system fails. I deal with drug reps a lot and they often have samples. I would suggest reaching out to the company that makes your medication, tell them your story and hopefully they'll help out, maybe give you free meds during your pregnancy in case your stupid insurance denies you again. I know Enbrel is marketed by Amgen but not sure which company sells remicade. Drug companies make lots of money and they're usually pretty good at giving back to the community. The ones I deal with at work all have patient assistance program for ppl who can't afford their meds, so I hope they'll help out a poor prego lady who had lost >30 lbs. Good luck and big ((hug))

I didnt even think of that! I DID contact the patient assistance for both, but they only cover you IF you have insurance and IF insurance pays some of it.

Since my insurance was flat out refusing, I was out of luck.

Funny thing is this -

Aetna, our insurance, covers Enbrel for my disease.

Caremark, who Aetna outsources all their prescription coverage to, won't cover it for my disease.

Like, I can't even with this shit.

ajlmom

Can you take Enbrel? I know a few Amgen (company that sells Enbrel) reps in my area. I live on New England. Lemme know cuz I could get in touch with them, share your story and see what they can do. They can probably connect you with some reps in your area (and maybe get you some samples).

But seriously why would those patient assistance programs turn you down? That's just ridiculous. If I were you I would totally write to the CEO of the drug company, and I'm not kidding. Or go to Linkedin and try to find some drug reps of that company in your area.

Good luck again and I hope you get better and start gaining some weight really really soon.

agsgrrl

You would think given your medical history either your regular doc or OB would help you get the ball rolling on samples or IV nutrients or SOMETHING to help you out. Might be cynical but I've noticed an eye rolling attitude from some med pros on autoimmune diseases still...

Cheekers2010

Ugh. I'm so sorry. And angry for you. Can you get IV nutrition until things stabilize? If your OB is that worried about it, I can see that making sense.

OhMySpawn

Random question- I have RA and take Humira (when not pregnant) but via self-injectable pen. Is that not an option for you, do you have to do the IV route?

LinziLoo09

Geez, I can't imagine what going through this must feel like. I'm so sorry you're having to deal with it. I'm not sure if you might have tried this to get extra calories, but what about pureeing some foods and seeing how they are tolerated. If you can stomach some broths, you could try to add some pureed protein (chicken or whatnot) and veggies to thicken the broth slightly. Keep adding each time you make the meal and see where your tolerance lies. I hope things improve for you soon.

Mikesfan

So sorry you are dealing with this. With my twin pregnancy I had Hyperemesis (HG) and lost 35 lbs the entire pregnancy. I delivered my boys at 4 lbs higher than pre pregnancy weight and both were 6 lbs each!

Anyway point is, that I was forced to drink Ensure twice daily. Did you try that? Its easy on the stomach, sorta, and its packed with vitamins and minerals and tons of calories. 

Dont beat yourself up. Your baby is doing okay...he is feeding off you...thats why you are losing at such a rapid pace. The baby takes from you what it needs. 

Hugs!!

JunkieBrewster

Thank you guys all so much! Thankfully, it all seems to FINALLY be worked out and I should be getting my infusions on time from now on.

The massive steroid dose before my infusion seems to have worked some magic, as I was able to eat the past 2 days. Not much, but I got some salad, string cheese, and tuna in, which is far more than the past few weeks!