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Life With Lupus

Talk about dilemnas!


#1

I do not have insurance nor can I afford the wonderful affordable Obamacare which was approx 500 for crappy plan and $600 for middle of the road plan. I had qualified for the free clinic by me and have been going there, however when diagnosed with lupus they sent me to a rheumatologist via referral. I have been seeing him since Feb, each visit I get a referral. Now the clinic has discontinued this program for referrals so I can no longer see a specialist and unfortunately the clinic is ok if you have a cold/ flu etc but the nurse practitioner is definitely not qualified to treat lupus. She has misdiagnosed me on several occasions, which is why a few times I just went straight to the ER so I could see a real dr. She wouldn't even give me a referral to rheumy when the ER dr suggested I need to see one because she disagreed with him, ugh! But I insisted she send me for a rheumatoid factor which came back with positive ANA so then she did send me to specialist who took many many more tests to confirm lupus. I guess I am now a lupie patient without a medical dr to monitor me. Wish I could just find a job that actually has benefits. This really does suck, and I have decided to slowly take myself off prednisone since I now no longer have a neck!! lol 3 days without so far, lets see where that gets me. My last blood work was in July but I could not go to my appt to go over so nurse gave me over the phone and my SED rate had gone back up but dr said he would wait till I can come in to see him to possibly change or adjust my meds. Currently on 15mg methotrexite a wk and 5 mg of prednisone but I cut it to 2.5 for a month before stopping it all together. I guess maybe I can try natural remedies, will have to read up on this. I welcome any suggestions :(


#2

I was without insurance for a decade so totally get it. It sucks. It’s stressful and you feel there is no hope. Sounds like you need a better dr without the ability to get one. All I can say is that every hospital has governemnt grants available to apply for thru the hospital financial aid. They will pay up to 100 percent of all bills depending on income. You can use them for dr appts, labs and hospital bills. I was on it for a year before obamacare. I qualified for subsidies so it worked out for me. As far as a job with benefits I do know one of my friends works at Starbucks for the insurance. One of only a few businesses that give full benefits with part time hours. Maybe you can try just plaquenil without methotrexate and prednisone to see if that works. Don’t have to be monitored as much and much cheaper. Either way hang in there. Usually a plan will pop up and others can give more info too.


#3

I definitely feel sympathy for you. It is the epitome of injustice that people like you can't get proper insurance, or even insurance at all, when you are suffering from this serious illness. The lack of compassion among medical professionals can often be appalling. I wish I knew what to advise you to do in this case, but it seems there has to be an answer. They can't simply refuse to treat you.

I would be careful with adjustments to prednisone. You were put on it for a reason - hopefully by a competent doctor - so dropping the dosage should be a thing that is monitored. And remember, it is probably the key medicine in your arsenal.

Good luck,

Thomas Franklin


#4

I totally understand where you are coming from. Lupus hit me hard 4 months ago when I was rushed to the emergency room and found out I had nuemonia. Went to my doctor for a routine follow up after and found high levels of ana with blood and high protein levels in my urine. After several tests and numerous biopsies thinking it might be cancer they biopsy my kidney and found the lupus had attacked my lungs (explained the pnumonia) and my kidneys thinking it was an affection im on 2000mg of cellcept (for transplant patients) and on 40mg predizone a day to knock out my immune system to slow it down to reduce the scaring and damage already done. I lost my job because I was unable to tp return to work before my fmla ran out so my job terminated me and cancelled my insurance. My meds are very costly and I m not sure what to do when my refills come I up


#5

if you are not working and have no income, then you should qualify for your state medicaid program. one of my chicas is on maryland state medicaid and has great doctors. in fact, she now has an appointment at the lupus clinic at johns-hopkins. she couldn't afford the "great obama care" either. please check your state medicaid program and remember, it is a different program than obama care. she chose priority partners here in maryland. good luck. barbara


#6

Also, hospitals like Sloan Kettering, Mayo Clinic, John Hopkins and the like do have help for people who can't afford their medical care.


#7

Thank you for the resources for those of us who lost our insurance. I had bcbs till my fmla ran out and my job terminated me losing my insurance. I will definitely be checking that out cause my meds for 30 days is running me bout 1000 dollars a month.


#8

Can also go to pparx.com. Fill out a few questions about what meds u need. It will give you the paperwork to fill out right there and info for each free or reduced program out there. all the medicine manufacturers have programs for reduced or free medicine also. Most are listed at that site too or go to the company’s website. You can ask pharmacist or Google who the manufacturer is. I got celebrex free for instance. The more expensive the drug the more likely to get it free or super cheap.


#9

Thank you Thomas, I appreciate your response. It is definitely a challenge to have something such as lupus without insurance but I will try to stay positive!



Thomas Franklin said:

I definitely feel sympathy for you. It is the epitome of injustice that people like you can't get proper insurance, or even insurance at all, when you are suffering from this serious illness. The lack of compassion among medical professionals can often be appalling. I wish I knew what to advise you to do in this case, but it seems there has to be an answer. They can't simply refuse to treat you.

I would be careful with adjustments to prednisone. You were put on it for a reason - hopefully by a competent doctor - so dropping the dosage should be a thing that is monitored. And remember, it is probably the key medicine in your arsenal.

Good luck,

Thomas Franklin


#10

Thanks Lupie, I think I am on the same thing you were for a yr, thru the local hospital, however for the rheumy they would send me outside the hospital but they are no longer able to do that and they do not have a rheumy at their location. They suggested that I try to apply at another location, which would be alot further and I already travel a bit but guess we do what we have to! Hopefully i would be approved again because I am currently working more hours than when I was approved a few months ago. It varies where I work depending on the time of year.

Also thank you for the medication info, I was not aware of that and will definitely look into it

Lupie said:

Can also go to pparx.com. Fill out a few questions about what meds u need. It will give you the paperwork to fill out right there and info for each free or reduced program out there. all the medicine manufacturers have programs for reduced or free medicine also. Most are listed at that site too or go to the company's website. You can ask pharmacist or Google who the manufacturer is. I got celebrex free for instance. The more expensive the drug the more likely to get it free or super cheap.

#11

I know what you mean about the meds, I think mine come to approx $100 all together a month, was higher but I did research online and found some free Rx plans which reduced them somewhat. My methotrexite was $42 and with the Rx plan went down to $12, now it is back up to $26 but I also take higher dose now. You can look into that as well as local hospitals, some offer free clinics and sometimes they have specialists on the premises that you can see if you are approved for their plan. I did this but they no loner have a specialist available for me to see and it's difficult at the clinic because they are not experienced enough to know exactly how to adjust or change meds or other issues you may have. Also Lupie had replied here about possible ways of getting free or low cost medications, check it out.

Steven Tatlow said:

I totally understand where you are coming from. Lupus hit me hard 4 months ago when I was rushed to the emergency room and found out I had nuemonia. Went to my doctor for a routine follow up after and found high levels of ana with blood and high protein levels in my urine. After several tests and numerous biopsies thinking it might be cancer they biopsy my kidney and found the lupus had attacked my lungs (explained the pnumonia) and my kidneys thinking it was an affection im on 2000mg of cellcept (for transplant patients) and on 40mg predizone a day to knock out my immune system to slow it down to reduce the scaring and damage already done. I lost my job because I was unable to tp return to work before my fmla ran out so my job terminated me and cancelled my insurance. My meds are very costly and I m not sure what to do when my refills come I up


#12

I do work and I do make more than the acceptible amount to be approved for medicaid. It's not a great income but not the worst I suppose but after I pay my bills (if I can cover them all that month) there is nothing left for food or misc. My daughter has been helping me out with food shopping for now until I can figuare things out or something better comes my way :)

bebeinmd said:

if you are not working and have no income, then you should qualify for your state medicaid program. one of my chicas is on maryland state medicaid and has great doctors. in fact, she now has an appointment at the lupus clinic at johns-hopkins. she couldn't afford the "great obama care" either. please check your state medicaid program and remember, it is a different program than obama care. she chose priority partners here in maryland. good luck. barbara


#13

Thank you USAGURL, I will definitely look into that!

USAGURL said:

Also, hospitals like Sloan Kettering, Mayo Clinic, John Hopkins and the like do have help for people who can't afford their medical care.


#14

Thank you to all for your replies, they were very helpful. I wrote some of the suggestions down and will research them when I get home. This computer at work has limited abilty online and extremely slow so I do not use it very often. Only go online when I have time at home. Working overnights changes everything around for you, such as sleep.. I sleep during the day, then evenings seem to fly by too quickly btw dinner, housework, etc so most of my free time is at work when it's slow, lol


#15

Sorry to hear there isn’t a rheumatologist there. That certainly would help. Maybe you can try an immunologist or internal medicine doc. Rheumy would be better but maybe you will hit on a good one in the meantime. My internal medicine dr is very knowledgeable and actually cares how I am feeling! He has ordered a Ton of more specific tests on how my body is working and trying different things. Being an internist he has more schooling and a fellowship in internal medicine, that a family dr does not. So far I am quite pleased with him. Your welcome for the info. This site is great because we get great ideas from people who have already gone thru the same thing


#16

Have you thought about going to another city to see a Rheumy. My Rheumatologist is in Atlanta, I'm an hour an half from him and I see him every three mos unless I have a flare. My kidney doctor is in the same city I am and the two doctors keep close contact about my condition. They must communicate about me.


#17

Yay!! Some good news, possibly. I may be taking over the full time auditor's place since he left to pursue other interests and that would mean benefits would be available, including actual paid time off!! I don't dare take any time off because I can't afford to lose the pay so I drag my self to work no matter how much pain or exhaustion, as I'm sure most of you do as well. Now will they treat me for lupus when I do get benefits or will it be an issue as it is a pre-existing condition?? Hmmm