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?

@dval

Sorry! I’m asking the person that said she was not interested in biologics. I know they’re used for arthritis and also for ulcerative colitis. I’m trying to get opinions on these drugs from actual patients, as I am terrified of their side effects, and my GI doc has been pushing Entyvio for several months and I keep resisting…. Thank you!! Sorry for the confusion; I’m new to this. 😨

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Hi @dval, I think your question was directed to @margarita514. If you add the member user name with the @ sign in front of it they will receive an email notification of your post.

There is a good Get Started on Connect guide to help with the basics with step by step instructions for the different tasks. The link to the guide is at the bottom of every page on Connect in the left most footer column.

Liked by lioness

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@johnbishop

Hi @dval, I think your question was directed to @margarita514. If you add the member user name with the @ sign in front of it they will receive an email notification of your post.

There is a good Get Started on Connect guide to help with the basics with step by step instructions for the different tasks. The link to the guide is at the bottom of every page on Connect in the left most footer column.

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Thank you!!

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@boomerexpert

For what reason are you eschewing biologics?

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In my personal opinion they are all poison .I’ve never tried any .Ive refused them since the first time it was suggested in 2010 wich puts a strain on every rheumatologist I had since as they see it as me not caring about my health when it’s quite the opposite.I don’t tolerate medications very well and I’m not keen on weakening my immune system or their side effects.

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@dval

Hi, I’m following this and would also be interested in your thoughts on biologics. I was diagnosed with ulcerative colitis 2 years ago and was in remission a few months on mesalamine and developed drug induced acute pancreatitis as a result of that. Prior to that, I had been taking Canasa and Uceris (budesonide) – both rectally because there is less systemic absorption. Prior to the UC, I had been in excellent health. My GI doc has been pushing Entyvio and I’m terrified of the side effects of biologics. I have been trying to find and talk to people that have taken them, as these flares are getting worse…. Thanks for any input, and good luck to you!

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I personally have not taken them . I don’t think they are a good fit for me personally. It is very scary when you get to that point in the road and have to decide I’ve been there many times but always decided against them.Im sure they work well for lots of people.you have to personally weigh the pros and cons . Question for you though have you tried switching your diet I’ve found that cutting out gluten and dairy definitely helps .

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@dval you can direct your message by doing what I've done here to reach you. I understand the side-effect fear…I had to better understand medications to move beyond this somewhat irrational fear…it's irrational b/c all medications have side-effects, including whatever you're on now. Biologics' serious side-effects on which you are no doubt concentrating happen in less than 2% of those studied…great odds. Your biggest worry is that they won't work on you, not that you'll be one of the 2%.

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@boomerexpert

@dval you can direct your message by doing what I've done here to reach you. I understand the side-effect fear…I had to better understand medications to move beyond this somewhat irrational fear…it's irrational b/c all medications have side-effects, including whatever you're on now. Biologics' serious side-effects on which you are no doubt concentrating happen in less than 2% of those studied…great odds. Your biggest worry is that they won't work on you, not that you'll be one of the 2%.

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Thanks! My fear is that they’ll do more harm than good. I was in remission (ulcerative colitis) for 3 months while taking mesalamine and was in the 2-3% that got drug induced pancreatitis, so I’m terrified of the odds. On the other hand, I am so sick of feeling like this! I have pain and bloody stool daily. I am struggling to maintain 110 pounds. I eat all organic, wholesome foods, no meat, no gluten. I never smoked and I don’t drink at all. I just don’t know how much longer I can do this. I can’t even enjoy my grandchildren, with this horrible illness hanging over my head. I don’t know what each day will bring….

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@boomerexpert

@dval you can direct your message by doing what I've done here to reach you. I understand the side-effect fear…I had to better understand medications to move beyond this somewhat irrational fear…it's irrational b/c all medications have side-effects, including whatever you're on now. Biologics' serious side-effects on which you are no doubt concentrating happen in less than 2% of those studied…great odds. Your biggest worry is that they won't work on you, not that you'll be one of the 2%.

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Have you had any success with biologics for your RA ? If so wich one worked best for you. My doctor is trying to put me on Xelijanz because it comes in pill form and I guess is easier to tolerate as well as the fact I won’t have to self inject ( I cannot give myself shots ) do you have any experience with this?

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Hello, my name is Sheri and I have ulcerative colitis and RA. I am on many anti-inflammatory medications for both conditions. Sulfasalazine, Methotrexate injections weekly, and Cimzia injections. When the RA flares became acute (occurring every 3-4 weeks) the Methotrexate was added to the already prescribed Sulfasalazine 4 tablets 2x daily. The add of Methotrexate reduced the frequency of flares for me to one every 5 weeks and after a year of trying the two meds the Cimzia was added. I have now been able to reduce the sulfasalazine to 2 tablets 2x daily, continue the Methotrexate injections weekly and the Cimzia – 2 injections every 28 days. I am thrilled to report I too was very timid about giving myself shots, but do the weekly Methotrexate without thinking twice about it. I've found icing the injection location prior to injecting makes it pain free for me. The Cimzia shots are another story and I do numb with ice prior to injecting but need to have my DH do those for me every 28 days. For me it's all about tradeoff's and well worth the shots. I am approaching 2 years without a significant RA flare – Cimzia was life changing for me in a great way. I hope you are able to find relief in your journey. I have found some FB groups for Methotrexate and Cimzia to be helpful, there maybe a group for the biologic they are recommending for you. I wish you hope and healing in your search for relief.

Liked by margarita514

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@sherw

Hello, my name is Sheri and I have ulcerative colitis and RA. I am on many anti-inflammatory medications for both conditions. Sulfasalazine, Methotrexate injections weekly, and Cimzia injections. When the RA flares became acute (occurring every 3-4 weeks) the Methotrexate was added to the already prescribed Sulfasalazine 4 tablets 2x daily. The add of Methotrexate reduced the frequency of flares for me to one every 5 weeks and after a year of trying the two meds the Cimzia was added. I have now been able to reduce the sulfasalazine to 2 tablets 2x daily, continue the Methotrexate injections weekly and the Cimzia – 2 injections every 28 days. I am thrilled to report I too was very timid about giving myself shots, but do the weekly Methotrexate without thinking twice about it. I've found icing the injection location prior to injecting makes it pain free for me. The Cimzia shots are another story and I do numb with ice prior to injecting but need to have my DH do those for me every 28 days. For me it's all about tradeoff's and well worth the shots. I am approaching 2 years without a significant RA flare – Cimzia was life changing for me in a great way. I hope you are able to find relief in your journey. I have found some FB groups for Methotrexate and Cimzia to be helpful, there maybe a group for the biologic they are recommending for you. I wish you hope and healing in your search for relief.

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Thank you, I’m currently on plaquenil twice a day and sulfasalzine two pills twice daily. I’ve been on these meds before so I know it can take months before you can see any changes I’m hoping at my next appointment my sed rate might have come down by then . Tried methotrexate pills in the past did not have good experience with it I get sick very frequently ended up in the hospital for ten days. I guess that traumatized me against immunosuppressants .

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be very careful with plaquenil. It can affect your eyes. you'll need to get your eyes checked per your rheumatologists recommendation. What is your sed rate? in my worst days my sed rate was as high as 150…..kozlo52

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@margarita514

Have you had any success with biologics for your RA ? If so wich one worked best for you. My doctor is trying to put me on Xelijanz because it comes in pill form and I guess is easier to tolerate as well as the fact I won’t have to self inject ( I cannot give myself shots ) do you have any experience with this?

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my friend was on xeljanz for about a year and it made her sick. She got off any biologixc modifiers and is on medical marijuana now and has not felt this good in years. i don't know her ration of THC/CBD that she is on…..kozlo52

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@kozlo52

be very careful with plaquenil. It can affect your eyes. you'll need to get your eyes checked per your rheumatologists recommendation. What is your sed rate? in my worst days my sed rate was as high as 150…..kozlo52

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Yes usually when I go back on plaquenil my doctor will remind me to make an eye appointment this one however didn’t bring it up ( I’m looking to find a new doc ) I made one anyway because I’m already at high risk of macular degeneration. My sed rate was 42 wich is pretty much baseline for me as well as the rest of my blood work. That’s why I’m confused with the drastic change of how I’m feeling as well as the high ANA .I think I might look into the cbd oil . Even though I have smoked marijuana for years I found it never helped with my inflammation or pain it just helped my body not be so tense all the time but maybe the cbd will help.

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I thank you for accepting me to your group.

My age is 63 and I live in Piraeus, Greece and have been diagnosed with rheumatoid arthritis from 2014.

Ever since I have been taking:
1 filicine every Friday
5 Methotrexate (5mg) every Monday
and during 2015, 16 & 17
Lorencia (needle) every week.

In April 2019 I had my first flair up which lasted for 4 days with excruciating pain on my shoulders and back to the point that I was jumping around the house and screaming because of the pain day and night.
I had no idea that it was from RA until my doctor said it was.

and for one month (ie May 2019) I was given
to take:

1 Prezolon (5mg) (prednisolone)
for 1 month (all of May)
1 filicine every Friday
4 Methotrexate every Monday
and
2 Xeljanz (5mg) one morning and one night.
After one month of taking Xelijanz I decided to stop talking it as the side effects were hypertension, anxiety, quick heart beats
and insomnia.

I would kindly appreciate it if you can advise me if the medication I have been prescribed to take is adequate or is it too severe.

Also if anyone is taking Xeljanz have they had the same symptoms and how safe is it to take?

I sincerely thank you in advance for any help, advice you can give me.

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My name is Traci and I was finally diagnosed 3 years ago. I am 44 and my RA doctor has yet to help. All she has prescribed is Hydroxychlorquine. I have now had two thumb surgeries and soon have to have both knees replaced. I am so frustrated and want to find better answers to what I can do to slow the progress to avoid many more joint replacements.

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@tkontoulas

My name is Traci and I was finally diagnosed 3 years ago. I am 44 and my RA doctor has yet to help. All she has prescribed is Hydroxychlorquine. I have now had two thumb surgeries and soon have to have both knees replaced. I am so frustrated and want to find better answers to what I can do to slow the progress to avoid many more joint replacements.

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Hello Traci @tkontoulas, Welcome to Connect. I suspect you are not alone with the frustration and wanting better answers. Becoming your own advocate for your health is one of the best things you can do. Connect is a good place to ask questions and learn what helps other members with similar symptoms.

The Arthritis Foundation is a good place to start to learn about the condition, treatments and more.
https://www.arthritis.org/about-arthritis/types/rheumatoid-arthritis/treatment.php

Mayo Clinic also has some good information, as well as some home remedies and lifestyle changes that help rheumatoid arthritis.
https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/diagnosis-treatment/drc-20353653

Have you thought about seeking an appointment with another rheumatologist? If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

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