Hello my Friends, my Warriors

I have been a true warrior most of my life, I have MCTD/Mixed Connective Tissue Disease/Lupus, RA degenerative arthritis, inflammatory all joints. I am here to learn from others as you can learn from me. I am depressed almost all the time, I just learn to keep busy and my husband looks at me & says smile Beautiful. How could I not Smile! He is my number 1 supporter, ๐Ÿ˜‰ Ask your questions I am always a wonderful listener & can be very informative. We all have a lot to learn from eachother

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  • I am a new RA and I also have Hashimoto's thyroiditis (another autoimmune disease). I tried the methotrexate and was on my 3 day of a 5 day treatment and got sick. I had a respiratory infection and kidney infection (urinating blood). Spent 9 days with a fever and dehydration. I was put on 4 antibiotics. I could hardly get out from under the covers I had chills so bad.

    So now I'm really to afraid to try the methotrexate again. I don't want to always be fighting infections. But if I don't take treatment I'll be in pain and dealing with the flares. I really don't know what to do. Any words of wisdom?

    Thank you,

    Tracy

  • Hi Tracey - Please talk to your rheumatologist again and let them know how afraid you are. They may be able to offer something else that can help you... I hope you get it straight soon. It is very scary to take a medication that makes you feel worse.

  • Thank you. My thing is that all treatments are immunosuppressants.

  • Which makes sense since RD is caused by an overactive immune system. So yes, the drugs do suppress some of the function making us more vulnerable to other diseases. But at the same time, they stop your autoimmune system from destroying your joints. As I'm sure you know too, the issue with RD is that the fluids get around the joints, then unlike gout or something, they actually solidify and that is why the erosion occurs.

    There are other treatments like Minocycline and diet or LDN and diet that do not act the same way, but of course they have their detractors too...

  • I quite understand how RA works. I also understand that without the immunosuppressant my RA will destroy my joints and connective tissue. But being a transplant nurse I also understand the damage the immunosuppressants do to the rest of your body. We don't die from RA, we die from the complications of the medication and the other organs it effects as well as the infections we will get. Being dehydrated and on methotrexate almost shut my kidneys down. Myself I'd rather not have to be on hemodialysis for the rest of my life. I feel like I am walking a tight rope. I don't know of any other treatments that are out there such as diet etc. in my experience the medical community immediately turns to medications for whatever the disease process.

    I would love to hear if anyone has tried anything else aside from the immunosuppressants like the types of diets and how they did it.

    Thank you.

  • If seriously interested in dietary/ lifestyle path, Tracy127, kindly consider researching the works of Drs.:

    T. Colin Campbell, Caldwell Esselstyn, John McDougall, Michael Klaper, Michael Greger, Joel Fuhrman, Dean Ornish, Neal Barnard -- if you're not already well aware of them.

    I think (merely layman's opinion) these Whole Foods Plant-Based Diet/ Lifestyle (WFP-BD/L) physicians have 'nailed it'. ๐Ÿ™ƒ ๐Ÿ”จ

    Or, at very least, come closest to a safe/ 'natural' approach in conjunction with a judicious use of meds (as needed).

    [So far, 'knock on wood' (knocking on head โ˜บ๏ธ), I've very good experience/ results following a process migrating to WFP-BD/L. ๐Ÿ‘]

    Supplementally, CaerylUSA's post may interest you: 'Remission without Medications?': healthunlocked.com/ra-warri...

    Wishing you relief -- whatever paths you pursue, Tracy127. ๐Ÿ™

    ๐ŸŒบ ๐Ÿ€ ๐ŸŒž

  • Thank you very much for this information. I do appreciate it. I want to avoid medication as much as I can though I am on Gabapentin which does help with pain somewhat (better then NSAIDS). Warm showers to loosen the joints and low impact excersize (though have to drag myself to do it at times ๐Ÿ˜’) also helps. With the immunosuppressants I feel like I'm trading being crippled with heart, liver, and/or kidney issues (hinse the "tight rope"). Plus being a nurse (constantly caring for sick/contagious patients) I would most certainly have to change my profession (or at least not do direct patient care) and that is something I can not do. So for now (because I do not know the journey ahead ๐Ÿ˜ก) I am going to try to avoid the immunosuppressants for as long as I can. I hope your journey is not a rough one and that everyday leaves you smiling. Being diagnosed gave me a whole new perspective on life. I noe know to slow down, live in the moment, be thankful for the little things (it's not always the big things that makes you smile the most), and whenever possible put your toes in the water (Zac Brown Band-Toes).

    Take care.

    Tracy

  • Very welcome, Tracy127. ๐Ÿ™

    Don't know if you're already familiar with turmeric (+ ground black pepper) as an anti-inflammatory)? It works for some of us to reduce pain (in place of standard NSAIDs). Being a nurse you may already know if turmeric conflicts with any of your current meds/ conditions, but for those us not in the medical profession it's best to double check with our physician(s) to ensure turmeric doesn't conflict with any of our current meds/ conditions.

    [Also, fresh ground ginger root (in green smoothies, for example), can also help reduce inflammation/ pain for some of us. Ditto about checking with physicians if you decide to incorporate any spices, herbs, etc. into your regime.]

    If you don't mind baths ๐Ÿ› (I know some folks prefer showers ๐Ÿšฟ or have difficulty getting into or out of a bathtub), soaking in a warm (or hot) bath with Epsom salts can also help loosen joints as well. And/ or, if you've access to a sauna, that too can be a blessed joint-loosening relief as well. ๐Ÿ˜Œ [Again, being a nurse you may already be well aware of these bits 'n bobs; noting here is merely an affirmation of their effectiveness. ๐Ÿ‘ ]

    Don't know if any of these ideas (13 Bite-Size Thoughts for Autoimmuners -- Newly Diagnosed (or Not)) you may have already come to realise over time; but just in case, there here if you're interested: healthunlocked.com/ra-warri... (Use whatever makes sense to you & chuck out the rest.)

    If you begin having difficulty with low impact exercise & would just like to 'keep moving' -- or merely expand your repertoire -- here's some gentle chair exercises & RA-specific exercises that may be of use at some point: Gentle Chair Yoga for RA; X-Ray Yoga for Wonderment : healthunlocked.com/nras/pos... (They're there -- should you ever need them.)

    Yes, it is indeed a 'tight-rope walk' with the co-morbidities & whether we continue to survive in our chosen professions is an unknown. ๐Ÿ˜ฃ ๐Ÿค” It is an unknown journey ahead! ๐Ÿ˜ณ Thank goodness you have your wits about you, Tracy, & clearly see the realities. ๐Ÿ™ ๐Ÿ˜

    It is indeed a whole new perspective on life! ๐Ÿ˜ฎ Like switching roles -- from providing loving nursing/ care-giving to being a patient on the receiving end of that loving care! (Bit of a topsy turvy 'role reversal'. ๐Ÿ™ƒ ๐Ÿ˜ )

    Yes, disease 'slams on the brakes' & forces us to slow down & appreciate the small things -- the proverbial 'stop & smell the roses' ๐ŸŒน. ๐Ÿ˜„ ๐Ÿ˜‚ Thank you kindly for sharing Zac Brown Band-Toes ๐Ÿ™ :

    .

    Got a kick out of it! ๐Ÿค— ๐Ÿ‘ Put the biggest smile on my face. ๐Ÿ˜„

    You take good care of yourself, dear lady. ๐Ÿ™ ๐ŸŒบ ๐Ÿ€ ๐ŸŒž

  • If you're ever feeling up for an 'exercise adventure' ๐Ÿ˜‰ some folks swear by Bikram yoga (or hot yoga). Some hate every second of it ๐Ÿ˜ก , some enjoy it ๐Ÿ˜Œ -- no matter -- the results speak for themselves. ๐Ÿ‘ (It keeps us 'lubed up' & mobile. ๐Ÿšถ. .๐Ÿšถ )

    andyswarbs talks about his Bikram yoga experiences:

    ๐Ÿ‘‰ healthunlocked.com/ra-warri...

    ๐Ÿ‘‰ healthunlocked.com/nras/pos...

    ๐Ÿ‘‰ foodandarthritis.blogspot.c...

  • Hi Treenuh - Welcome to the forum, a bad place to HAVE to be, but if you do have to, it is a good group to be with.

    I think all of us are warriors in our own way. We may not always acknowledge it, but as they say "Old age is not for the wimpy". I would paraphrase that to "RD is not for the wimpy", either.

    I know what you mean about your hubby - My hubby is my biggest and best supporter too...

  • You are a true warrior, with a very supportive husband, God bless him. It's hard for our loved ones to see us in pain. My husband and children hide it well. This has been a very tough couple of months for me. Undiagnosed RA put me in the hospital with bilateral plural effusions, a mass on my adrenal gland, glaucoma and enlarged lymph nodes. All that and the months of horrible pain and many visits to several specialist, I was finally diagnosed. My numbers were off the charts. Now it's been months later and I am feeling better with MTX. You are a true inspiration. Stay strong my friend!

  • Welcome Treenuh. Sounds like you have a wonderful hubby. I would be lost without mine.

    I love what you said about 'we have a lot to learn from eachother". I know for a fact how much this support group has helped me.

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