1. < Autoimmune Diseases

Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Posted by Kanaaz Pereira, Connect Moderator @kanaazpereira, Mar 30, 2017

Let's talk about living with rheumatoid arthritis.
As moderator of the Autoimmune Diseases group, I noticed that several people were talking about RA, but those conversations were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Let’s grab a cup of tea, or beverage of choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

doloridicorpo65 | @doloridicorpo65 | Feb 25, 2021
In reply to @sueinmn "You might consider asking your pharmacist or doctor about "price support" for your biologics. Many can..." + (show)
@sueinmn

You might consider asking your pharmacist or doctor about "price support" for your biologics. Many can guide you on how to apply for assistance so you can take the full doses.
Here is an excerpt from this article on line: https://www.uptodate.com/contents/coping-with-high-drug-prices-beyond-the-basics
"Rx Assist — This website lets you enter the name of a medicine or the name of a drug company to find programs that can help you get that medicine or medicines made by that company at a reduced cost. In many cases, the online applications for those programs are included. (Website: http://www.rxassist.org/patients )
Sue

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Thanks Sue. I will try the suggestions you shared with me. My rheumo here on the Treasure Coast of Florida has told me she has nothing to do with the cost issues and I have to figure it out myself.My previous rheumo in Buffalo was an incredible resource. Not all rheumotologists are cut from the same cloth. It is so helpful to have this forum to follow. Thanks again.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 25, 2021
In reply to @sueinmn "You might consider asking your pharmacist or doctor about "price support" for your biologics. Many can..." + (show)
@sueinmn

You might consider asking your pharmacist or doctor about "price support" for your biologics. Many can guide you on how to apply for assistance so you can take the full doses.
Here is an excerpt from this article on line: https://www.uptodate.com/contents/coping-with-high-drug-prices-beyond-the-basics
"Rx Assist — This website lets you enter the name of a medicine or the name of a drug company to find programs that can help you get that medicine or medicines made by that company at a reduced cost. In many cases, the online applications for those programs are included. (Website: http://www.rxassist.org/patients )
Sue

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@sueinmn It’s also worth trying the drug company. Many of them have programs, grants, etc, to help patients. When I first went on biologics, the insurance company wouldn’t pay the $28K/dose price. (And I needed 4 doses a year) The oncologist called the company and they finally agreed that their foundation would cover the cost. Thank heavens because I don’t know what I would have done!
@doloridicorpo65 , please try reaching out to the company. Tell them that their drug is a lifesaver! Will you try that?

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1 reply
djfd | @djfd | Feb 25, 2021
In reply to @becsbuddy "@sueinmn It’s also worth trying the drug company. Many of them have programs, grants, etc, to..." + (show)
@becsbuddy

@sueinmn It’s also worth trying the drug company. Many of them have programs, grants, etc, to help patients. When I first went on biologics, the insurance company wouldn’t pay the $28K/dose price. (And I needed 4 doses a year) The oncologist called the company and they finally agreed that their foundation would cover the cost. Thank heavens because I don’t know what I would have done!
@doloridicorpo65 , please try reaching out to the company. Tell them that their drug is a lifesaver! Will you try that?

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Yes, definitely contact the manufacturer or your med. There are lots of organizations that will help cover what insurance and medicare don't. Right now one has been helping with my Remicade and just got help with eye drops from prevent blindness. It is so worth checking into.

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djfd | @djfd | Feb 25, 2021
In reply to @sueinmn "You might consider asking your pharmacist or doctor about "price support" for your biologics. Many can..." + (show)
@sueinmn

You might consider asking your pharmacist or doctor about "price support" for your biologics. Many can guide you on how to apply for assistance so you can take the full doses.
Here is an excerpt from this article on line: https://www.uptodate.com/contents/coping-with-high-drug-prices-beyond-the-basics
"Rx Assist — This website lets you enter the name of a medicine or the name of a drug company to find programs that can help you get that medicine or medicines made by that company at a reduced cost. In many cases, the online applications for those programs are included. (Website: http://www.rxassist.org/patients )
Sue

Jump to this post

Another group you should try is "PAN Foundation". Got to PA foundation.org and fill out simple application using everything you are diagnosed with and even if they say they will put you on waiting list DO IT as they get more funds for different things all the time. I waited three weeks and they contacted me, did another application on phone call and received approval in a few days. They will even reimburse for one script I filled myself. Try them all.

REPLY
2 replies
djfd | @djfd | Feb 25, 2021
In reply to @djfd "Another group you should try is "PAN Foundation". Got to PA foundation.org and fill out simple..." + (show)
@djfd

Another group you should try is "PAN Foundation". Got to PA foundation.org and fill out simple application using everything you are diagnosed with and even if they say they will put you on waiting list DO IT as they get more funds for different things all the time. I waited three weeks and they contacted me, did another application on phone call and received approval in a few days. They will even reimburse for one script I filled myself. Try them all.

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It's panfoundation.org

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doloridicorpo65 | @doloridicorpo65 | Feb 26, 2021
In reply to @djfd "Another group you should try is "PAN Foundation". Got to PA foundation.org and fill out simple..." + (show)
@djfd

Another group you should try is "PAN Foundation". Got to PA foundation.org and fill out simple application using everything you are diagnosed with and even if they say they will put you on waiting list DO IT as they get more funds for different things all the time. I waited three weeks and they contacted me, did another application on phone call and received approval in a few days. They will even reimburse for one script I filled myself. Try them all.

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I will. You are the best. Thank you.

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devonsnana | @devonsnana | Feb 26, 2021
In reply to @kozlo52 "be very careful with arava. i was on this one and had been losing skin from..." + (show)
@kozlo52

be very careful with arava. i was on this one and had been losing skin from the genitalia and penis so bad that i went to a special dermatologist who told me to get off it immediately or i would have lost my scrotum, as it happened with someone else. I also was very itchy with this from the very start. Check your skin carefully especially in the private area. These RA drugs can be quite dangerous....kozlo52

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I also have severe issues with arava. Instead of changing medications they prescribed Diflucan for 7 days then I have to take it once a week. I not only have RA but I also have progressive systemic sclerosis, Hashimoto, stage 3 kidney disease, COPD, autoimmune asthma, latent TB, and hypertension. With all the medications I have no quality of life and my days revolve around taking medications at the proper times. The medication list is to long to list but I wonder if just throwing the medications out and trying diet and homeopathic means would improve our quality of life.

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1 reply
fracturedd | @fracturedd | Feb 26, 2021

@devonsnana How many years ago were you diagnosed with systemic sclerosis?

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 26, 2021
In reply to @devonsnana "I also have severe issues with arava. Instead of changing medications they prescribed Diflucan for 7..." + (show)
@devonsnana

I also have severe issues with arava. Instead of changing medications they prescribed Diflucan for 7 days then I have to take it once a week. I not only have RA but I also have progressive systemic sclerosis, Hashimoto, stage 3 kidney disease, COPD, autoimmune asthma, latent TB, and hypertension. With all the medications I have no quality of life and my days revolve around taking medications at the proper times. The medication list is to long to list but I wonder if just throwing the medications out and trying diet and homeopathic means would improve our quality of life.

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Perhaps you need a complete med evaluation by a Doctor of Pharmacy? Some large practices and most teaching hospitals have such a resource. I realize there is a feeling of frustration when docs keep adding meds, but "chucking the lot" is sometimes dangerous too.
Sue

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1 reply
devonsnana | @devonsnana | Feb 26, 2021
In reply to @fracturedd "@devonsnana How many years ago were you diagnosed with systemic sclerosis?" + (show)
@fracturedd

@devonsnana How many years ago were you diagnosed with systemic sclerosis?

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The diagnosis took 9 years from the onset of symptoms but I have only had the diagnosis for 3 years.

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