RA & Lupus - can anyone relate?

[lhm8]

Hello, I've never been on one of these groups, or posted anything. However, I got my nerve up & thought I'd join to see if I can learn from others & share some of my experiences. I was diagnosed 22 yrs ago with RA. I've had remissions within those yrs which I'm so grateful for; but that was long ago. I recently moved to distress my life and hopefully feel better. Unfortunately, my new Rhuematologist has now diagnosed me with SLE Lupus. I am losing my hair and this flare (fatigue/pain/skin problems) is one of the worst I've ever experienced. I'm wondering if anyone else has been diagnosed with both RA and Lupus? I'm on Enbrel, plaquinil, prednisone, gabapenton, etc - the list is long. If anyone can relate or give advice, I'd welcome it. It's important to stay positive when living with an autoimmune disease, so please share positive thoughts. Keeping my mind on the good things in life is part of how I cope, that and laughter.

[Kai--]

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Have you heard of Dr. Brooke Goldner 👩‍⚕️ ( healthunlocked.com/cure-art... , google.com/search?as_q=Dr.+... ), lhm8?

If you’ve time, interest, inclination she’s an awful lot of positive thoughts ➕💭 ➕💭 for you.

Hope you’re glad you got your nerve up to join, lhm8, & hope you receive the support & information you seek. 🙏

[if seeking a bit of laughter 😆, see if this ( healthunlocked.com/nras/pos.... ) tickles your funny bone 🍖.]

Wishing you the very best. 😌 🙏 🍀 🌺 🌞

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Oh, there’s also a ‘Lupus UK’ forum ( healthunlocked.com/lupusuk ) to explore 🕵️‍♀️ 🔎 as well.

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[lhm8 in reply to Kai--]

Hello Kai, thank you for your reply.

YES, the paintings with a tabby cat made me lol actually. Quite funny, thanks for the giggles! I did look up the Dr. you mentioned above. I'm glad I joined this group, is it all in the UK? I didn't realize that, I live in Texas, USA.

Hope you have a wonderful weekend.

[Kai-- in reply to lhm8]

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Welcome, lone star ⭐️ state-er. 👋 😌

The NRAS forum ( healthunlocked.com/nras ) on HealthUnlocked (HU) is global 🌍 🌏 🌎 . All countries welcomed. ☺️

The NRAS organization/ charity( nras.org.uk/ ) is located in the U.K. 🇬🇧 .

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Don’t know if you’d consider the HU Lupus forum ( healthunlocked.com/lupusuk ) as a ‘secure’ site or not? 🤔 Folks over at the HU Lupus forum may be able to suggest ‘secure’ Lupus sites as additional options. 👍👍

Keep smiling, lhm8! 😊

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[oldtimer]

There is a lupus site as well - worth joining for you I would think.

It's a lot to get your head round at the start, but read the posts and feel that you can ask any specific questions -although medical ones should go to your health care team.

[lhm8 in reply to oldtimer]

Thank you. I thought about joining a lupus site too. Couldn't find a secure website, but I will continue looking into it. Since I've had RA for so long, I thought I could contribute more on that subject. There is much to learn for me about having both diseases now. Mainly I'm curious if anyone else has been give this dual diagnosis of RA and Lupus.

Have a great day.

[Graceusha1]

I have found this group a great and supportive resource. My doctor as of today calls me inflammatory RA. I'm new to all this. YES,humor is the key!!! Don't BE this disease. Also have FUN in everyday. HUGS Ushagrace

[Foofsie]

Hi!

i ws diagnosed with an overlap of RA and Lupus in 1985 so have had years of experience of both. However, my RA has been really aggressive and I have had multiple joint replacements (including having had one hip done 5 times!). Going through airports is always fun, as my family walk behind me with resignation on their faces!

I have probably been through most of the meds available for both conditions and have had hair loss and now starting to have unexplained skin lesions on my legs - since August last year - so a relatively new development.

You sound positive so that would be the best advice I could give. I try to continue to be true to the essence of who I am, inspite of the RA and Lupus. Continue to fight the good fight with a smile on your face - even though some days it can be a bit challenging!

Best wishes! x

[lhm8 in reply to Foofsie]

Thanks for sharing your story - yes life can be hard - but I find balance helps. Saving up my energy for the special days I need it works sometimes. Then after, I rest. Over the years this has worked for the most part. Good luck with your journey!

[NY65]

My son was diagnosed at 18 with seronegative RA, my sister is called "lupus like syndrome", many cousins with RA or Lupus. I finally outdid them all at something and have both! My rheum of two years states I have RA with Lupus overlap. Different specialist on my case call it Rupus, Lupus like syndrome, or mixed connective tissue disease. Plaquenil and prednisone have helped make symptoms not so intense. Failed at Imuran, methotrexate, and Cellcept because GI symptoms. Awaiting insurance approval for Orencia. I too am from the US - New York. Love this site for people are so nice and willing to share their experiences. Welcome!

You said you have RA for years then diagnosed with Lupus. I am surprised they have left you on Enbrel. My rheum would not let me try it because Enbrel can exacerbate/induce lupus symptoms. Has your rheum considered maybe you have a drug induced lupus from the Enbrel? If not, there is hope going off the Enbrel can clear your lupus symptoms....always hope! Worth talking with your rheum. Good luck!

[lhm8 in reply to NY65]

Sounds like you and your family are very familiar with autoimmune diseases, unfortunately. I'm glad you shared your story with me, thank you. Yes, I know the side affects of Enbrel. All the medications I take have side effects, and it's a choice. Though it's a difficult choice, this go round I don't really have much of a choice. Meaning, this flare has been a year long and nothing really worked until I started Enbrel. I will continue it, but I will ask my Rhuem more questions about it next visit. You bring up a good point & I've needed time to think about it before responding. Good luck with your journey!

[cillfred]

I have had ra for 20 years and 2 years ago I developed a skin rash. The inflammation was intense and the pain was different from my “normal” RA pain. I have seen 3 dermatologist and switched to a new rheumatologist and hundreds of dollars later I was diagnosed today with Rupus😥. I have been on Humira for 10 years along with methotrexate today I am taking methotrexate and just took my first pill of plaquenil . I live in North Carolina and glad to have come across your post. Good luck with your journey

[lhm8]

I'm so sorry to hear of your new diagnosis. The day I found out I had both was kind of devastating. It just hit me very hard, I didn't want to hear I had 2 autoimmune diseases & it overwhelmed me. Even though I've suspected Lupus for years, I still didn't want it confirmed. So, trust me, I sympathize - know that you are not alone! I don't know what your skin rash is like, but mine itches and burns and leaves whelps. My experience with plaquenil has been good - it's one of the few meds that doesn't give me yucky side affects. You're so right, it is a journey! I like that you put it that way - & I borrowed that phrase when talking with others. Hope you don't mind. Keeping a positive list of things in your mind may help you get through. I try to think of the things I can still do, & have things to look forward to.