Guest guest Posted December 14, 2007 Report Share Posted December 14, 2007 Dube, I am so sorry! This is a terrible time of year to get such bad news too! Have you tried for disability? Find a good lawyer in your area who handles disability claims. Also, if you haven't already done so, check with your pharmacist...I have heard that some drug companies will sponsor you and provide your meds for you free. My cousin gets hers that way...her doctor helped her get set up for it. Ask your doctor and ask around at different pharmacies to see if you can find one who will help you. Again, I am so sorry you are going through this. Thank God the MTX is working for me...it is pretty cheap! I hope I never have to go to one of the biologics! Sharon > > After being on Remicade infusions (900mg monthly) for the past year > with great results I can no longer afford it. Jan. 1st 2008 my Anthem > BC/BS weekly insurance premiums skyrocketed and will be up to $185. per > week. A $6000.00 deductable and a 20% co pay on Remicade ($1400. per > month). Yes out of pocket, no help. No disability benefits, Money > coming in is dwindling because of the economy (self employed) and no > one wants to hire a 50+ year old guy with PA.....I give up! Dr says we > will try Humaria. So everyone, count your blessings. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2007 Report Share Posted December 14, 2007 I hope you good luck in getting Humira at a reasonable cost. These meds should be free: for those with PA, they are like essential nutrients. Such a crazy world we have that builders of weapons that can cause untold pain can make millions - billions even from the government, yet a kindly citizen with a crippling disease is withheld treatment. If it any consolation to you, my insurance would pay for the product, but I had problems with demyelination and Enbrel. Because of the very frightening symptoms associated with demyelination, my rhumatologist and I are leery about my trying another biologic TNF inhibitor. So, you can be damned if you do and damned if you don't. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 I've applied to all the programs, but no help because we have too much " stuff " . No SS benefits even though I have been declared disabled by SS....Why? Because I have been self employed trying to deal with my limitations. Now if I could sell the " stuff " I have it would be a better story. It's the economy stupid! Like someone said years ago. You know I've lived 50+ decent years. What bothers me the most is not that I can't continue with needed treatments, but what happens to the younger people in similar predicaments as I have. They have a whole life ahead of them. How can they be expected to endure this pain, swelling and all that goes with PA? All while drug companies, politicians and etc get richer and richer while there is so much suffering in the USA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 Sorry to hear about your losing your Remicade. I get mine thru Medicare and the state. As long as I qualify for a home care worker...a min of 10 hrs a month....the state will pay my portion of the Remicade. I get 700mg every 4 weeks. You might check and see if you qualify for that. That can be any kind of home help including housework that is just to taxing for you. Another suggestion is to contact the manufacturer of Remicade and request a scholarship. Before Medicare came up with part D for RX I got uncovered meds thru the Purdue company...Oxycontin...it was delivered to my door Fed Ex every month. There might be other benefits thru your state from qualifying for a home care worker as well. Not that I am proud of it, but without the Remicade I a bed bound...as the state found out when they thought I no longer qualified and took me off....no Remicade for 4 months and I was in pretty bad shape. Still trying to catch up from it. If this info does not help you...maybe it will someone else..Good luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 The cost of this drug is brutal. I'm so sorry to hear this is happening to you. Dube <dubedew@...> wrote: After being on Remicade infusions (900mg monthly) for the past year with great results I can no longer afford it. Jan. 1st 2008 my Anthem BC/BS weekly insurance premiums skyrocketed and will be up to $185. per week. A $6000.00 deductable and a 20% co pay on Remicade ($1400. per month). Yes out of pocket, no help. No disability benefits, Money coming in is dwindling because of the economy (self employed) and no one wants to hire a 50+ year old guy with PA.....I give up! Dr says we will try Humaria. So everyone, count your blessings. --------------------------------- Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 Centacor is the company to contact about Remicade. My daughter was on Remicade for her Crohns disease and Centacor was very good to her. [same w/Enbrel, they have a foundation that can provide everything at no cost]. However, Remicade, as you know, is administered via infusion, so there are two parts, the drug and equipment required to infuse the drug (which Centacor supplied everything for my daughter), and secondly, the hosp or whatever facility you are going to also bills for the cost of administering the infusion. Will the ins co pay that portion of the bill? Or, does the hosp have a consumer fund they can assist on income basis?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 I am curious about your Remicade dosage. Isn't 500 where they usually start? I am every 6 weeks, but was told that usually every 8 weeks, so they are cautious about going higher, but I am still more bed bound than I would like, although I am improved. > > Sorry to hear about your losing your Remicade. I get mine thru > Medicare and the state. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 What is " demyelination " ?? How does this relate to all of the biologics, so far as what you know... > If it any consolation to you, my insurance would pay for the product, > but I had problems with demyelination and Enbrel. Because of the very > frightening symptoms associated with demyelination, my rhumatologist > and I are leery about my trying another biologic TNF inhibitor. So, > you can be damned if you do and damned if you don't. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 This may sound kind of odd, but Montel has been doing a great deal in this area.-- esp working on finding medical asst and Rx for people who fall through the cracks. Sure sounds like you qualify!! > > I've applied to all the programs, but no help because we have too > much " stuff " . No SS benefits even though I have been declared disabled > by SS....Why? Because I have been self employed trying to deal with my > limitations. Now if I could sell the " stuff " I have it would be a > better story. It's the economy stupid! Like someone said years ago. You > know I've lived 50+ decent years. What bothers me the most is not that > I can't continue with needed treatments, but what happens to the > younger people in similar predicaments as I have. They have a whole > life ahead of them. How can they be expected to endure this pain, > swelling and all that goes with PA? All while drug companies, > politicians and etc get richer and richer while there is so much > suffering in the USA. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2007 Report Share Posted December 18, 2007 I looked it up and, from what I can tell, it's the " MS " symptoms that can be caused in rare cases by the biologics. Joanna Hoelscher 630-833-7361 [ ] Re: Can't afford Remicade any longer What is " demyelination " ?? How does this relate to all of the biologics, so far as what you know... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2007 Report Share Posted December 19, 2007 Yes indeed I have applied the Montel band wagon. But according to those close to the medication suppliers, the program is little more than a drop in the bucket trying to put a pretty light on the drug mfg companies. Of course I didn't qualify. --- In , " cmoralez_ak " This may sound kind of odd, but Montel has been doing a great deal in this area.-- esp working on finding medical asst and Rx for people who fall through the cracks. Sure sounds like you qualify!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2007 Report Share Posted December 19, 2007 Honestly Centacor came forward with open hands...Waiting for me to keep paying. No help at all. > > Centacor is the company to contact about Remicade. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2007 Report Share Posted December 19, 2007 My disease is very aggressive. 900mg Remicade infusion every 4 weeks. 25mg MTX injection every 7 days. It has been a year now on Remicade with this last months results showing much improvement. Just being able to stand for 10 minute is an improvement in my history. Anyway, complaining isn't going to help and I know others are worse off than I. Especially the younger ones > > I am curious about your Remicade dosage. Isn't 500 where they usually > start? I am every 6 weeks, but was told that usually every 8 weeks, so > they are cautious about going higher, but I am still more bed bound > than I would like, although I am improved. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2007 Report Share Posted December 21, 2007 Hi: I just joined the group, thank God I have my disability after 2 years. My husband had neck surgery at that time several small strokes & never recovered mentally (dementia). Of course, like many still waiting on his disability, we lost everything we worked for & moved to Texas to live with a cousin (even lived in a camper for a year). I used to be a respiratory therapist for 15 years in a hospital in Miss. I am wondering how many have used Holistic meds & what? I had to stop Humira and there was no change in lab work, same with Mtx. Maybe the monster is just waiting to come back out next visit. I take a lot of vitamins, I also found some cream at the Health Food Store called Psoratis (something similar) it takes a little longer than steroid cream, it works & is $6.00. Also, I take a liquid vitamin only available at Sam's Club called Miracle Fruits of the world Combo $20.00. My Holistic Dr. also recommend a Parasite Detox, he has two more pts with this stuff. I don't see him anymore we had to move to Fort Worth, Texas. I started a free Adaptive Yoga Class last night they work with disabilities, that helped with my fibromyalgia. Any ideas or other info. Would be greatly appreciated. Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2007 Report Share Posted December 21, 2007 Welcome, ! The National Psoriasis Foundation has an interesting article at http://www.psoriasis.org/publications/advance/200506_herbchart.php which gives the references for some clinical trials of natural substances used to treat psoriasis and/or PA. If you look on the chart, in the column marked " scientific evidence, " the initials " CCT " indicate a controlled clinical trial was conducted. The footnotes will give you the names of the researchers and actual journal references. The substances demonstrating efficacy include aloe, cayenne, dong quai, fish oil (contradictory results), shark cartilage, and turmeric. I just ordered all of these and will begin trying them. I also take Humira injection weekly, Celebrex, and use TAC ointment on my feet where I have pustular P. I found this to be a handy summary of what has been studied clinically by reputable researchers. regards, sherry z > > years in a hospital in Miss. I am wondering how many have used Holistic > meds & what? I had to stop Humira and there was no change in lab Quote Link to comment Share on other sites More sharing options...
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