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TOPIC: Blame it on Lupus?

Blame it on Lupus? 4 years 9 months ago #47908

  • DanC33
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The Eye doc said that because of cost most insurances will not pay for Restasis, or the co-pays are astronomical. Which is why he said to consider plugs. The Planquinil test (field vision test?), is only done at his main office, he said that his small outlying offices don't have the equipment for it.

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Blame it on Lupus? 4 years 9 months ago #47909

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I just had the vision field test last week. I consider it to be torture. It doesn't hurt, it is just so boring. You have to stare at a light and press a button every time they flash an additional light. Each eye takes four minutes. I don't have the attention span and it takes everything I have for my mind to not drift off. Those four minutes seem like an eternity.

As for Restasis, my co-pay is $45.00 a month. I know it doesn't sound like much, but added to all of the other meds, it's getting to be a small fortune.

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Blame it on Lupus? 4 years 9 months ago #47910

  • Sandi
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I was just reading a Sjogren's forum and the discussion was dry eyes. Many of them have plugs and use Restasis. I guess the manufacturer's state that Restasis won't work if someone has the plugs, but many people find that it does.

I don't know what works best if someone has dry eyes due to Lupus inflammation. The causes are different but the symptoms and treatment are the same.

Dry Eyes

Approximately 20 percent of people with lupus also have secondary Sjögren’s syndrome, a condition in which the tear glands do not produce sufficient tears to lubricate and nourish the eyes; the other moisture-producing glands are similarly affected. (Primary Sjögren’s syndrome is a systemic disease that, like lupus, can affect many parts of the body.)
Typical symptoms are irritated, gritty, scratchy, or burning eyes, a feeling of something in the eyes, excess watering, and blurred vision.
Advanced cases of dry eyes may result in damage to the front surface of the eye and impaired vision.
The dry eye that is seen in lupus cannot be distinguished from other dry eye conditions.

www.lupus.org/answers/entry/how-does-lupus-affect-my-eyes
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Blame it on Lupus? 4 years 9 months ago #47916

  • DanC33
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I go in for my test on the 23rd. I hope I don't fall asleep!! Do they give the results right away?

Great article on dry eyes. I am going to my Rheumatologist in a few weeks and I will bring this up with him. My Rheumatologist has already said that I have secondary Reynaud's, so my eye doctor is pretty sure I have secondary Sojourn's. I mentioned to the eye doc that I just recently had blood work done for that and it all came back OK. He said that because I take Lupus meds they will come back that way(he said the treatments are virtually the same). He said the only way to make sure is to taper off all Lupus meds and be off of them for 6-8 weeks then retest. But he said that it would just make my life a "living hell" just to come to the same conclusion. Although he does say that he is just an Ophthalmologist and to get with my Rheumatologist to be sure.(I guess CYA)

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Blame it on Lupus? 4 years 9 months ago #47920

  • Sandi
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Yeah, it's definitely not worth it to go off of meds just to test. I couldn't imagine that; it would be impossible. I can't even function if I'm an hour late taking meds. Treatment is the same anyway.

I started using Restasis yesterday. No problems with it. The side effects can be the same as the dry eye symptoms....gritty feeling, foreign body sensation, etc....but so far I don't even have burning when I use the drops. I was told to keep it in the refrigerator because the cold helps to diminish the burning. My eyes watered a little yesterday but I guess that's a good thing. My problem is going to be remembering to use them. I have been getting so confused with my meds lately, can't remember if I've taken them or not. I have a pill box, but it's only for morning meds because that's when I take the majority of them. I keep getting confused with the Norco and Acifex and forget if I've taken them or not. Now Restasis twice a day.

I still have not had the Solumed IV. Apparently there is an insurance issue that my doctor has to deal with. They would approve Rituxan or Benlysta, but Solumed is a problem. I can't believe that; it's a much cheaper treatment! Idiots.

Oh and get this: The Restasis manufacturer's have a rebate program to help with co-pay costs. Everyone qualifies except those on Medicare. The government doesn't allow it. Crock of shit!

Why am I not eligible for rebate and savings programs if I am on Medicare, Medicaid or a similar federal or state healthcare program?

According to state and federal laws, these offers cannot be extended to people whose prescriptions are paid for in part or in whole by Medicare, Medicaid, or any similar federal or state healthcare program.


www.restasis.com/Frequently-Asked-Questions

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Blame it on Lupus? 4 years 9 months ago #47935

  • DanC33
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I wouldn't dream of going off meds just to end up right where I am right now. Heck just going down to 8mg of Medrol has been and adventure as you know.

They are fighting the Solumed? That's dumb!! It's just injectable Medrol...hence very cheap. But they'll approve Rituxan that's around $1200 per dose.

They are always complaining about costs on Medicare/Medicaid ect...but they won't let you take advantage of a rebate?? I agree what a crock....

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Blame it on Lupus? 4 years 9 months ago #47948

  • Sandi
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I don't know what the insurance issue is. They didn't tell me. All they said was that there was an issue and they had to ask the doctor how to handle it. My guess is that it has to be coded a certain way.

I have the best supplemental plan available. A lot of good that is doing. :(

I never had insurance issues until Obama changed everything. Everything was always approved right away except for a few meds that I had to appeal. Now everything is denied...tests, treatments, meds. I think they are trying to kill the chronics off.

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Blame it on Lupus? 4 years 9 months ago #47959

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I think they are trying to kill the chronics off"....I agree!!! I have to go in for a minor but medically necessary outpatient procedure and they tried to deny it. My doctor had to go head to head with an appeals board....NONE of them were doctors.

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Blame it on Lupus? 4 years 9 months ago #47961

  • Sandi
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Things have gotten so bad since Obamacare. This is what I was afraid of. Insurance companies raised rates and deny everything. There is an insurance monopoly going on in my area. If you don't have UPMC insurance, you cannot go to most of the Pittsburgh hospitals. The hospitals are owned by UPMC and won't accept many other insurances. I looked at their plans and they are horrible. Very high deductibles and high premiums with little coverage. I keep hearing on the news that people with cancer are going without treatment because of this. There is an appeals process going on, but it will take time. It's really getting scary.

I hope you can get your procedure. Good luck!

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Blame it on Lupus? 4 years 9 months ago #47985

  • Melinda
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Insurance companies were denying lots of things for years - a case that immediately comes to mind is a lady here denied treatment for her cancer, yeah an insurance company really knows what is needed for cancer treatment. My brother in law thankfully had an oncologist who would fight for the treatment he knew my bil needed - insurance company would tell the oncologist he couldn't give my bil this or that when this or that was what he needed to keep living.

I agree they are trying to get rid of the chronics and the oldies!

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Blame it on Lupus? 4 years 9 months ago #48033

  • Sandi
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I am going to have a breakdown.

When I had the infection, the doctor there told me to see my PCP for follow-up. I tried to get an appointment but they won't see me unless it's an emergency. The fact that I'd been having problems eating for months before the infection leads me to believe that something is going on, so I think I should follow-up. I blow too many things off and I don't think I should ignore this. I tried to get an appointment for a few weeks away, but they won't do it.

So I decided that I'm fed up with this PCP since I go through this all the time and I called a new office. The first question she asked was whether or not I take anti-anxiety drugs or pain killers. I said, yes, I have Lupus. She told me they don't see patients on those drugs and hung up. I understand the fear of drug seekers, but I am not one of them. No new PCP for me and no appointment with the old one.

I also called to schedule my yearly GYN appointment and they told me Medicare will only pay every other year. So much for health care.

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Blame it on Lupus? 4 years 9 months ago #48050

  • Melinda
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Your doctor, PCP, will not see you unless it is an emergency? I don't get it - what is a doctor for if not to see his/her patients when they have a problem, not just for emergencies. Are you sure he/she takes Medicare patients? Did this type of limited appointments start once you went on Medicare?

Could your rheumatologist recommend a PCP? This is crazy!

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Blame it on Lupus? 4 years 9 months ago #48052

  • Sandi
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Yes, it is crazy and it was going on long before Medicare. They do accept it and they don't even know that I have it yet. It's only been 17 days.

I actually haven't seen my PCP for years. If I am sick and I call them, they tell me that I can only call at 8:30 in the morning to get a sick appointment for that day. If I call them at say, 3:30 in the afternoon, they tell me to call back the next morning. It's ridiculous, I'm already on the phone now.

If I just want a general appointment because something needs to be checked out (like this), they tell me it will be 6 months before they can get me in. I usually just say forget it and wait three months or so until I see the Rheumatologist or some other doctor.

I've been fed up with them and have said for years that I need a new PCP, but apparently I'm black balled as a patient.

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Blame it on Lupus? 4 years 9 months ago #48063

  • Melinda
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That just blows my mind Sandi - I don't get it. Seriously I would let my rheumatologist know what happened and ask for a PCP suggestion - then you can say Doctor So&So recommends that I see Doctor Whosiefern.

Is this doctor that popular that he can't see a patient until 6 months down the road? Can you lie? What is wrong with the doctors in PA [also thinking of the hospital that only takes it's own insurance - however in an emergency they have to take anyone and at least stabilize them before kicking them out the door]. This really does blow my mind!

Is there an HMO there you could join? I really do like mine.

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Blame it on Lupus? 4 years 9 months ago #48064

  • Sandi
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I think I'm already in an HMO with my supplemental insurance. But that doesn't mean that a doctor within that HMO has to take you, as I just found out. I asked about the insurance before she got to the drug questions. HMO's seem to be different here than in other places. I used to live in MA and it was a lot different than the HMO's here. All an HMO means here is that a doctor is within a certain network, but they are in different offices and hospitals all over the place.

I think I'm going to have the PCP problem even if I have a verbal recommendation. I might have to get one of my current doctors to actually call a new PCP. Remember when I couldn't get into the Pain Management Clinic a few years ago because I didn't have an x-ray that showed physical damage? Doctors don't like to deal with people who need pain meds.

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Blame it on Lupus? 4 years 9 months ago #48075

  • Melinda
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Guess I think every HMO is like mine - contained.

Might be worth a try to get one of your doctors to call a new PCP - anything to get a doctor who see patients when needed!

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Blame it on Lupus? 4 years 9 months ago #48078

  • Sandi
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No, they are not all alike. The HMO I had in MA was like that, one building for all of the doctors. In PA, insurances are HMO's and PPO's. With HMO's you have to stay in network (their list of doctors), but they are spread out everywhere. With PPO's, you can see any doctor anywhere without a referral. Anytime I have to switch insurance, I have to call my list of doctors to make sure they accept the type of insurance that I get. When I just switched over to Medicare with a supplemental, I lost my therapist of 5 years. He can take the supplemental, but Medicare won't allow it so I have no coverage for him. My choices were to start with a new person or pay out of pocket. I've just been paying until I think of a better idea, but I don't think there are any other options.

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Blame it on Lupus? 4 years 9 months ago #48091

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Have you tried filing a complaint with the insurance commissioner in your state? That's what I've had to do to get things done. (and yes I got my procedure approved)

I'm not looking forward to going on Medicare in August.....Well not if this is how the treatment is going to be.

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Blame it on Lupus? 4 years 9 months ago #48092

  • Sandi
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The problem I'm having with Medicare is that they don't seem to cover much. Even with the supplemental insurance, I'm ending up with large balances. I went to Med Express, saw the doctor and got a script. No tests. I owe $127.00 out of pocket. I used to only pay $20 even with x-rays, etc.

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Blame it on Lupus? 4 years 9 months ago #48098

  • Melinda
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Maybe it is because of my HMO but I've not had a problem - yet - hope that continues. Now some tests are a lot more expensive - but haven't been denied anything so my fingers are crossed.

Know up until a couple years ago Medicare would only pay for a physical when you started it - now you can get a yearly physical.

You need to make sure where you go does take medicare.

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Blame it on Lupus? 4 years 9 months ago #48099

  • Sandi
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I ask every time. They said that they did. I want to see the breakdown of the bill and which insurance paid what.

I still have not heard a word about the Solumedrol. It's been a month since the doctor called me after she read my letter. Last I heard, she called to tell me they were going to submit it for approval. Such a hassle! I thought I had a good supplemental plan but it's not looking that way.

Still having problems with my Mom, who needs this?

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Blame it on Lupus? 4 years 9 months ago #48119

  • Melinda
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I'd want to see the breakdown too.
Is a bill automatically sent to the supplemental insurance co?

I'd call doctor's office to find out what they are hearing about your Solumedrol - if nothing then I'd tell them to call and find out what is going on.

I'm so sorry Sandi there are still problems with Mom - bless you both!

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Blame it on Lupus? 4 years 9 months ago #48213

  • SuperDave1
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good 4 U !!!
Hope Vitamin A Works/helps.
conventional Doctors ofte do not think outside "their" box.
SuperDave1

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Blame it on Lupus? 4 years 9 months ago #48215

  • Sandi
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I've been taking Vitamin A. It's not working. I don't think that is the problem.

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Blame it on Lupus? 4 years 9 months ago #48218

  • Melinda
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Blame it on Lupus? 4 years 9 months ago #48219

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I usually only take the ones in which I am deficient. I don't normally just take random vitamins for the heck of it. Vitamin A was the exception, but I'm not overdoing it.

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Blame it on Lupus? 4 years 9 months ago #48234

  • Melinda
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I knew you weren't taking more than needed - but I did think the article interesting. There are so many people out there who take mega-doses. I've seen bottles that say mega or super - trying to find a "normal" amount is almost impossible.

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Blame it on Lupus? 4 years 9 months ago #48236

  • Sandi
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I have Super Magnesium, but I actually need it. The rest are just normal doses except for the D which is prescription.

On the plus side....I called Med Express to ask about getting a breakdown of the bill and what the insurances paid. Turns out they never billed Medicare, just my supplemental. They are going to correct that and cancel my bill for the time being.

That was the highlight of my day, until my husband came home with a brand new car for me! Totally unexpected. I thought he was taking my 2009 for new brakes but he traded it in. Total shocker!

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Blame it on Lupus? 4 years 9 months ago #48241

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Congrats on the new car :) !!!!!

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Blame it on Lupus? 4 years 8 months ago #48505

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I found out on Friday that my mom has vascular dementia. That explains it all. They are still looking into the high calcium and don't have a reason for that yet. Right now she only has short term memory loss but it is expected to progress. She doesn't know about it.

I was reading about it and realized that I am very high risk for atherosclerosis and vascular issues, so I need to be more proactive with prevention. My doctor has been trying to tell me for years but I avoided thinking about it. I blow off the aspirin all the time, but I bought some yesterday and added it to my daily handful.

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