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?

@georgeeliot

Two days ago l asked my rheumatologist whether l should stop taking methotrexate which, because of its impact on the immune system, may increase my vulnerability to covid19. He seemed unwilling to offer a straight answer. He said it was up to me to decide. That isn't helpful. Finally he said that the drug does NOT lower one's immune system. That was certainly news to me, having been warned the exact opposite for 20 years by a variety of physicians. But, he repeated, it is still m y decision. That's a decision I'm not equipped to make.My layperson's logic tells me that, at 79, l am an ideal target for covid19. Can anyone help me with this puzzle?

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@georgeeliot, I'm 77 today 🙂 and also in the high risk category with an autoimmune disease but it's currently in remission so I'm not taking any medications. I'm not sure anyone can answer your question even the doctor (IMHO). I think the real question is which is the worse risk – stop taking the methotrexate and a new risk of what occurs when you do that or continue taking it and the risk of getting an infection from COVID-19. Here are a couple of articles that may provide a little information towards what you are asking.

COVID-19 infection and rheumatoid arthritis: Faraway, so close!: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7102591/

Methotrexate and Coronavirus: Does Methotrexate Make You High-Risk for COVID-19?: https://creakyjoints.org/treatment/methotrexate-immunosuppressing-coronavirus/

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@johnbishop

@georgeeliot, I'm 77 today 🙂 and also in the high risk category with an autoimmune disease but it's currently in remission so I'm not taking any medications. I'm not sure anyone can answer your question even the doctor (IMHO). I think the real question is which is the worse risk – stop taking the methotrexate and a new risk of what occurs when you do that or continue taking it and the risk of getting an infection from COVID-19. Here are a couple of articles that may provide a little information towards what you are asking.

COVID-19 infection and rheumatoid arthritis: Faraway, so close!: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7102591/

Methotrexate and Coronavirus: Does Methotrexate Make You High-Risk for COVID-19?: https://creakyjoints.org/treatment/methotrexate-immunosuppressing-coronavirus/

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Thank you for the articles. I read them with great interest and, obviously, mounting frustration. Shall continue with methotrexate, as that answer seems minutely preferred (although it's also clear that nobody knows anything for certain), and just stay in the house waiting for covid to knock. But you know, John, AAAAGGGGHHH.
Meanwhile, happy birthday.

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@georgeeliot

Thank you for the articles. I read them with great interest and, obviously, mounting frustration. Shall continue with methotrexate, as that answer seems minutely preferred (although it's also clear that nobody knows anything for certain), and just stay in the house waiting for covid to knock. But you know, John, AAAAGGGGHHH.
Meanwhile, happy birthday.

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Psst…don't answer the door if it knocks!! Stay safe. There are a lot of discussions you may find helpful in the COVID-19 group here:
https://connect.mayoclinic.org/group/covid-19/

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Hi. My name is Fran and I
was diagnosed with imflamatory Arthritis anout 3 years ago. Other than steroids, I have not been on medication until 6 months ago when I was put on Cimzia, an injection in my stomach muscle along with one injection of a chemotherapy drug. I am wondering if anyone else is on the drug Cimzia. Thanks, Fran

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@frane1939

Hi. My name is Fran and I
was diagnosed with imflamatory Arthritis anout 3 years ago. Other than steroids, I have not been on medication until 6 months ago when I was put on Cimzia, an injection in my stomach muscle along with one injection of a chemotherapy drug. I am wondering if anyone else is on the drug Cimzia. Thanks, Fran

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Hi Fran @frane1939, I don't have any experience with Cimzia but I'm tagging @emt1954, @sherw, @slbeall, @djfd, and @marylou705 who have discussed Cimzia in a post and may be able to share their experience with you.

Does the Cimzia injection seem to be helping you?

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Hi my name is cyndy,I’m new to the group. I started lefluminide in December 2019 and I am now experiencing hair loss does anyone have advice to reverse the hair loss.

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@cyndyabq

Hi my name is cyndy,I’m new to the group. I started lefluminide in December 2019 and I am now experiencing hair loss does anyone have advice to reverse the hair loss.

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Hello candy,
Sorry you are experiencing hair loss. The easiest thing to do is tell your doctor. The Rx maybe too strong for you? Maybe the doctor can change your medicine.
It’s unfortunate but hair loss is a side affect of many medicines.
Like anything else it’s trial and error.
Wish you well.
Funcountess

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@cyndyabq

Hi my name is cyndy,I’m new to the group. I started lefluminide in December 2019 and I am now experiencing hair loss does anyone have advice to reverse the hair loss.

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Hello @cyndyabq, I would like to add my welcome to Connect along with @funcountess and other members. Unfortunately hair loss is one of the less common side effects of many arthritis drugs according to the Arthritis Foundation. You can find more information below but I also think it would be a good idea to discuss it with your doctor.

Arthritis Medications and Hair Loss: https://www.arthritis.org/health-wellness/treatment/treatment-plan/disease-management/arthritis-medication-hair-loss

Medical News Today tips for treating hair loss due to Rheumatoid Arthritis: https://www.medicalnewstoday.com/articles/325569#treating-hair-loss

Is the Leflunomide (Arava) helping your RA?

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I have had RA for 38 years and have been on a “boatload” of meds. I have never experienced hair loss. Since there are many choices of RA drugs today, please talk to your Dr and try another one.

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@emt1954

Hello! I have had RA for around 15-20 years. Tried to get by with just Celebrex and then Meloxicam. Finally, didn't work and went to a rheumatologist last year, Started me on Methotrexate, got elevated liver enzymes, next was Enbrel, allergic to it (hives). Tried Orencia infusions and seemed to go well until my leg swelled up. So, In August, switched to Actemra infusions and 2 months in, that quit working and now had my first injection of Cimzia a week ago. So far, so good. But I am still on a prednisone taper from the last big flare up. All these drugs have targeted the TNF inhibitors, IL6 and other inflammatory markers. Not sure what else is out there to try? Getting frustrated at not being able to be "normal". Am I the only one feeling this way?

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Oh, my. You are not alone. 38 years with RA and I have been categorized as severe. I wish you would have seen a rheumatologist earlier. They have a treasure chest of medicines to try. You are doing the right thing by educating yourself. Remember you are in charge. Education is key!

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I am Susie. The summer I turned 30, I developed RA. I am now 68. My 1st rheumatologist was wonderful. He educated me before anything else. The only other time I experienced that was my visit to Mayo in Rochester. Start with education. Know thy enemy.

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@cyndyabq

Hi my name is cyndy,I’m new to the group. I started lefluminide in December 2019 and I am now experiencing hair loss does anyone have advice to reverse the hair loss.

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Hi, Cyndy,

I, too had alot of hair loss on lefluonmide. I stopped it, and went back to methotrexate. Up to 50% of people on lefluonmide have hair loss. I also had lost 15 pounds in a short period of time. I went and saw a dermatologist, Antonella Tosti, at the University of Miami that specializes in hair & nails. She's written textbooks on hair and nails. She told me I had chronic telogen effluvium because of rapid weight loss and then gave me the statistic on lefluonmide. She told me to take 3 mg of melatonin at bedtime, and come back in 6 mos. When I went back my hair had grown (remember I had 2 things going on). I experience hair loss from RA, but not methotrexate.

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