Anyone here with autoimmune arthritis?

peachvine29
peachvine29 Posts: 400 Member
edited September 2019 in Health and Weight Loss
How does it impact your physical health goals?

I have been under rheumatologist supervision for my arthritis for several years now, been on plaquenil twice a day for a while. I used to have really bad hip arthritis, was crazy, I couldn't even stand up on it at one point but now it's all gone away. My doctor says some joints are a little swollen in my hand (certain fingers and wrists) but honestly I can't really tell much.

I've been doing pretty good for a while now but this past week my fingers, hands, and wrists ache a lot. I know I probably need to see my doctor, I just saw her two weeks ago though. The next step with my meds, if they're not working is to take an immunosuppresant and I'm nervous about that. I've been tired lately, feeling like I want to nap when I get home, achy today. Thinking the arthritis may be why.

I don't really feel like lifting weights when my joints hurt and I'm fatigued, which I usually am up for :/. I lifted the past three days anyway, though.

Any tips?

Replies

  • L1zardQueen
    L1zardQueen Posts: 8,754 Member
    You need to work with your doctor. It takes awhile to fine tune your meds. Your flare up sounds like your meds are not quite right yet. And fatigue is the biggest indicator of not under control RA. My RA is in remission, I was diagnosed over 20 years ago. Hugs
  • sandhillsmom
    sandhillsmom Posts: 319 Member
    I've been on Plaquenil for over 5 years. I deal with Autoimmune issues ranging from Thyroid to arthritis, to undifferentiated connective tissue disorder. I am border line to being declared to having Lupus. I handle free weights and seated exercises pretty well. but if I get up and do a full out weights routine I am in misery for days afterwards. My walking is limited as I develop extreme lower back pain from the arthritis I have in hips, lower back, and knees. Please work with your Doctor to sort out which medication works best for you. What sort of diet are you trying to use to sort out your issues?
  • lgfrie
    lgfrie Posts: 1,449 Member
    edited September 2019
    I'm pretty much in @sandhillsmom 's camp. I've got UCTD, although I've had long periods of being in remission, including the last four years. Been on Plaquenil on and off for 15 years, which has been a life-changing wonder drug for me. Pro tip: always stock up on as much plaquenil as possible and store it in a cool, dark place, because every once in a while there's a fake "shortage" and the price of the generic skyrockets from $10 or $20 to 300+ for 60 pills. That happened in 2015 when I was in dire need of them, and they can be hard to come by when the industry decides it's time for a "supply problem". Try to have a year's supply lined up for a rainy day.

    Anyway, yeah, you know what needs to happen. If the 2x Plaquenil isn't getting the job done, the doctor will suggest something else / in addition to. I faced that once, but then my symptoms settled down and the plaq was good enough. It sounds like you're in a flare up but they do come and go, so try to remain positive and go see the dr to find out the next steps.
  • VegjoyP
    VegjoyP Posts: 2,693 Member
    edited September 2019
    I (finally) went to an incredible Rheumatologist. This past week I went in for multiple lab results. This amazing doctor also went through all my bloodwork since the first diagnosis several years ago. It was confirmed that I have SLE Lupus and arthritis. I also have osteoperosis of the spine, osteopenia in hips. I have been clinically diagnosed with anxiety, ADHD and PTSD.
    He gave me information on medicine (Planquil) but know I will not take any. I am taking a very wholistic, nutrition/ functional medicine, herbalist and alternative medicinal approach. I have several professionals I am working with, plus I have a career in the supplement and health/ Fitness field.
    I use CBD, Meditteranian and higher fat, low carb nutritional plan and several tinctures, supplenets that have done well. I see people on medicines and become reliant on them. I use medittion and mental clarity for this too.

    My most challenging time is with getting up in the morning, intermitten flairs that I mitigate naturally right now. I am also going to see a Liver specialist because of the lab results. Much of the current remedies are targeting Liver cleansing and health because there is concern from my doctor.

    I REALLY believe FOOD IS MEDICINE! Even if someone decides to take medication, it is onluy beneficial to be on a nutritional plan to enhance, thrive and rejuvinate :)

    I work retail and am very active. I work out, do marathon distance walking and do not sit still much. I find staying active helps my mind and body. Yes I get tired, hurt and sore often. Its ok becausI keep remaining happy and filled with faith









    i
  • peachvine29
    peachvine29 Posts: 400 Member
    You need to work with your doctor. It takes awhile to fine tune your meds. Your flare up sounds like your meds are not quite right yet. And fatigue is the biggest indicator of not under control RA. My RA is in remission, I was diagnosed over 20 years ago. Hugs

    Thanks. If I continue to flare I will talk with my doctor. I am a little achey today. It's weird, I have a problem with grinding my teeth, I guess due to stress and maybe caffeine intake, not sure but I know when I do my joints start hurting... Hmm.
  • peachvine29
    peachvine29 Posts: 400 Member
    I've been on Plaquenil for over 5 years. I deal with Autoimmune issues ranging from Thyroid to arthritis, to undifferentiated connective tissue disorder. I am border line to being declared to having Lupus. I handle free weights and seated exercises pretty well. but if I get up and do a full out weights routine I am in misery for days afterwards. My walking is limited as I develop extreme lower back pain from the arthritis I have in hips, lower back, and knees. Please work with your Doctor to sort out which medication works best for you. What sort of diet are you trying to use to sort out your issues?

    I am not trying any sort of diet. A couple years ago I did try the AIP diet (autoimmune paleo). I think I felt good at first but after a couple weeks not so much. I can't remember well but I think I was just tired and felt very restricted, over worked from cooking. I know that gluten free is supposed to be good for AI. But I don't really like restricting myself from things.
  • peachvine29
    peachvine29 Posts: 400 Member
    lgfrie wrote: »
    I'm pretty much in @sandhillsmom 's camp. I've got UCTD, although I've had long periods of being in remission, including the last four years. Been on Plaquenil on and off for 15 years, which has been a life-changing wonder drug for me. Pro tip: always stock up on as much plaquenil as possible and store it in a cool, dark place, because every once in a while there's a fake "shortage" and the price of the generic skyrockets from $10 or $20 to 300+ for 60 pills. That happened in 2015 when I was in dire need of them, and they can be hard to come by when the industry decides it's time for a "supply problem". Try to have a year's supply lined up for a rainy day.

    Anyway, yeah, you know what needs to happen. If the 2x Plaquenil isn't getting the job done, the doctor will suggest something else / in addition to. I faced that once, but then my symptoms settled down and the plaq was good enough. It sounds like you're in a flare up but they do come and go, so try to remain positive and go see the dr to find out the next steps.

    I am having a little pain today. I find it really hard to be conscious of my pain or remember what even my symptoms have been or for how long they've been going on. I feel I need to keep a journal or something to keep track because I usually feel fine and forget the disease, though I do have intermittent joint pain. If it keeps hurting I think I'll see my doc...
  • peachvine29
    peachvine29 Posts: 400 Member
    VegjoyP wrote: »
    I (finally) went to an incredible Rheumatologist. This past week I went in for multiple lab results. This amazing doctor also went through all my blood work since the first diagnosis several years ago. It was confirmed that I have SLE Lupus and arthritis. I also have osteoporosis of the spine, osteopenia in hips. I have been clinically diagnosed with anxiety, ADHD and PTSD.
    He gave me information on medicine (Planquil) but know I will not take any. I am taking a very holistic, nutrition/ functional medicine, herbalist and alternative medicinal approach. I have several professionals I am working with, plus I have a career in the supplement and health/ Fitness field.
    I use CBD, Mediterranean and higher fat, low carb nutritional plan and several tinctures, suppleness that have done well. I see people on medicines and become reliant on them. I use meditation and mental clarity for this too.

    My most challenging time is with getting up in the morning, intermittent flairs that I mitigate naturally right now. I am also going to see a Liver specialist because of the lab results. Much of the current remedies are targeting Liver cleansing and health because there is concern from my doctor.

    I REALLY believe FOOD IS MEDICINE! Even if someone decides to take medication, it is only beneficial to be on a nutritional plan to enhance, thrive and rejuvenate :)

    I work retail and am very active. I work out, do marathon distance walking and do not sit still much. I find staying active helps my mind and body. Yes I get tired, hurt and sore often. Its ok because I keep remaining happy and filled with faith

    Are your symptoms okay? I will be honest - I used to kind of believe I could cure things naturally but I have seen the power of medicine and if I wasn't taking mine I know my symptoms come right back. Joint damage is very possible and happening when you are hurting and pretty much irreversible... I don't want to take that chance... For me I will stay on my meds. Food is powerful but this disease is too...