Rheumatoid Arthritis (RA) - Introduce yourself and meet others

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?

@doloridicorpo65

I have had RA for 12 years diagnosed but longer undiagnosed. I agree on the gut, mouth bacteria and steroid views. It is frustrating to be brain fogged in flares. My hope is that stem cell research will find a way to control our issues in the future. I'm down to one or two biologics left having tried so many. Now that I am paying out thousands a month for them along with my thyroid,asthma and dry eye meds I am forced to do half dose every other day to make ends meet. Something in this picture is wrong. How can drug companies be allowed to charge so much to people on medicare with supplemental drug and medical insurances ?Having who worked all their lives , these patients now are simply making a few wealthy company owners wealthier on the back of our disease. Its mind boggling.ok I'm done ranting. I apologize. Once again I agree with the gut,mouth bacteria connection and the steroid brain fog. Stay well.

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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

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

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@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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@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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@sueinmn

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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Sue, I understand the dangers of "chucking the lot" but I also do not have the resources to be able to travel to a teaching hospital or Mayo Clinic. I have to rely on the physicians in my area. It is frustrating to say the least when you not only have to be your own advocate to get care but also do the research because even though they all list my conditions as being part of the practice you find that their knowledge is not up to research data level. I understand my diagnosis is a no cure but symptom control situation. I am just saying that there has to be a better way then constantly ingesting all the chemicals that wreck havoc on your body with no return of function or an improvement to how one feels. There are certain medications I know I can never go off but I feel at least a majority of them why not try a medication holiday to see if baseline has changed or improved.
Devonsnana

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