support for those working out with autoimmune issues

Options
13»

Replies

  • singingflutelady
    singingflutelady Posts: 8,736 Member
    Options
    Madwife2009 wrote: »
    Slightly OT, but can anyone who takes the biologics answer a question? I currently take methotrexate but as I can only cope with a low dose, and have "failed" other DMARDS, I'm going to be taking an etanercept biosimilar alongside the methotrexate.

    Anyway, the question is, do the biologics help with the incessant fatigue? I'm experiencing a flare which is knocking me for six and I'm so tired, it's unbelievable. I just want everything under control and to be pain-free. I think that I just want someone to give me a glimmer of hope and say that it may help - I know that we're all different and we all react differently to different drugs. My consultant has been promising me for months that each drug I take will "sort things out" but ten months later, I'm worse than I was before starting the DMARDS and I despair of ever feeling like normal me again :(:(

    For me i was in a "coma" for 2 days after my infusion (remicade) and felt bad for about a week before but had some good weeks. I'm current off biologics as I had surgery and still have an open wound but soon enough I'm going back on one (stelara or entyvio).
  • Madwife2009
    Madwife2009 Posts: 1,369 Member
    Options
    singingflutelady wrote: »

    For me i was in a "coma" for 2 days after my infusion (remicade) and felt bad for about a week before but had some good weeks. I'm current off biologics as I had surgery and still have an open wound but soon enough I'm going back on one (stelara or entyvio).

    Sorry to hear this, that seems horrendous! Hope that the wound heals quickly for you.

    They are putting me on benepali (etanercept) which is a sub-cut injection once a week. I hate all of this. I've been in and out of hospitals. had more tests and taken more medications over the last year than I've had during my entire life (including four pregnancies). It's ridiculous that it all kicked off just after I decided to do something about my unhealthy lifestyle :)

    Yes, I'm still feeling sorry for myself, a year after diagnosis. I'll get over it, no doubt, once it's under control.

    Bleugh.
  • GottaBurnEmAll
    GottaBurnEmAll Posts: 7,722 Member
    Options
    Madwife2009 wrote: »
    Slightly OT, but can anyone who takes the biologics answer a question? I currently take methotrexate but as I can only cope with a low dose, and have "failed" other DMARDS, I'm going to be taking an etanercept biosimilar alongside the methotrexate.

    Anyway, the question is, do the biologics help with the incessant fatigue? I'm experiencing a flare which is knocking me for six and I'm so tired, it's unbelievable. I just want everything under control and to be pain-free. I think that I just want someone to give me a glimmer of hope and say that it may help - I know that we're all different and we all react differently to different drugs. My consultant has been promising me for months that each drug I take will "sort things out" but ten months later, I'm worse than I was before starting the DMARDS and I despair of ever feeling like normal me again :(:(

    I'm on Humira. I think it does help.
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    edited August 2017
    Options
    Madwife2009 wrote: »
    singingflutelady wrote: »

    For me i was in a "coma" for 2 days after my infusion (remicade) and felt bad for about a week before but had some good weeks. I'm current off biologics as I had surgery and still have an open wound but soon enough I'm going back on one (stelara or entyvio).

    Sorry to hear this, that seems horrendous! Hope that the wound heals quickly for you.

    They are putting me on benepali (etanercept) which is a sub-cut injection once a week. I hate all of this. I've been in and out of hospitals. had more tests and taken more medications over the last year than I've had during my entire life (including four pregnancies). It's ridiculous that it all kicked off just after I decided to do something about my unhealthy lifestyle :)

    Yes, I'm still feeling sorry for myself, a year after diagnosis. I'll get over it, no doubt, once it's under control.

    Bleugh.

    It's ok to feel sorry for yourself. I'm 2.5 years out from my diagnosis (Crohn's) and incredibly bitter that I had to have a total proctocolectomy with end ileostomy (colon, rectum and *kitten* removed) because of a crohn's complication (nasty fistulas) that I developed 1 month after diagnosis but my GI basically blew them off. Maybe if I had been sent to a surgeon earlier I could have had a simple repair. My disease was basically under control when i had surgery so it sucks to lose all that when it actually isn't so bad (except the fistulas of course)Oh well. I'm angry at my GI and hope he learned from my case but since he's still my Dr I have forgiven him.

    I should add that when I became deathly I'll I was very fit. Best shape of my life. 2 weeks before I ended up in the hospital for 34 days on TPN right at diagnosis I was deadlifting 2x bodyweight. In the hospital I couldn't even squat down to pick anything off of the floor without assistance. It was a shocker.
  • comptonelizabeth
    comptonelizabeth Posts: 1,701 Member
    Options
    Madwife2009 wrote: »
    singingflutelady wrote: »

    For me i was in a "coma" for 2 days after my infusion (remicade) and felt bad for about a week before but had some good weeks. I'm current off biologics as I had surgery and still have an open wound but soon enough I'm going back on one (stelara or entyvio).

    Sorry to hear this, that seems horrendous! Hope that the wound heals quickly for you.

    They are putting me on benepali (etanercept) which is a sub-cut injection once a week. I hate all of this. I've been in and out of hospitals. had more tests and taken more medications over the last year than I've had during my entire life (including four pregnancies). It's ridiculous that it all kicked off just after I decided to do something about my unhealthy lifestyle :)

    Yes, I'm still feeling sorry for myself, a year after diagnosis. I'll get over it, no doubt, once it's under control.

    Bleugh.

    I can relate to this; my ulcerative colitis started when I gave up smoking. Was bitter about it for a while but eventually you accept that life isn't fair and you move on.
    Re your question about biologicals. I'm on vedolizumab (entyvio ) and gut wise am more or less in remission, but other manifestations of the disease, like fatigue and joint pain, are still there I'm afraid. In fact if anything, they are worse but I don't know if that's just because they seem more noticeable now that gut symptoms have receded.
  • emm3rs
    emm3rs Posts: 17 Member
    Options
    Hello everyone! I really was in need of finding this post today. I recently got diagnosed with Hashimoto's in January this year and have been struggling, I also have endometriosis and I have had that since 2009.

    My endocrinologist wants me to loose weight, as do I. I'm currently over 100 pounds overweight. Second visit with my endocrinologist she gave me a script for phenteramine, which I didn't take and was able to loose 10 lbs on my own. She was pleased and I went on my way. We have been trying to get pregnant and the endo. is like laser focused on that and how my weight is an issue.

    Shes convinced that she thinks I have PCOS. I had a transvaginal US earlier this year (for the endometriosis) and I had ZERO cysts on my ovaries, in fact I got a clean bill of health and the OBGYN said everything looked good.

    I have a visit with her again at the end of September and she mentioned putting me on metformin. Im having a hard time with it, seeing that Im a nurse, and I dont have PCOS. Metformin can cause liver damage and I feel like she is so easy peasy with prescribing pills to fix things. I just need more time, the weight just dosent come off as easy as it used to!

    Anyone have any tips for me? Anyone else with Hashi's find a way it works to help loose weight? I have heard low carb, gluten free, keto, whole 30.... etc. But Im not sure about if any of those are worth looking into.

    I walk a lot at work, and I try to at least get 3x week in for exercise, recently its been on my bike, but I am able to do whatever (zumba, HIIT, walk, cant run - knee injury)

    Currently my diet is 1750 cal/day and ratio is carbs 40%, Fat 30%, protien 30%

    ANY HELP, would be greatly appreciated!
  • GottaBurnEmAll
    GottaBurnEmAll Posts: 7,722 Member
    Options
    I have Hashi's and lose weight just like anyone else if my thyroid is adjusted to optimal levels for me.

    Your endo might not have you there. How are your symptoms? Is your endo adjusting you to numbers or symptoms? Did she run a complete thyroid panel? What was your last TSH?

    I'm asking you this because it becomes important to know where your optimal TSH reading is. I could test within normal optimum range (I believe this is now .2 - 2.0, @CSARdiver can correct me), but I personally know that I feel best when my own number is well below 1.

    My endo knows this too, so we know to keep me on the low side. She also knows to treat patients based on symptoms, not numbers.

    Saying all of this, once you are treated properly on a dosage that's best for your symptoms, you should be able to lose weight like anyone else, on a diet of any macro balance of your chosing, by accurately counting calories and doing reasonable exercise as you see fit.
  • kebass01
    kebass01 Posts: 31 Member
    Options
    I just got the call that I switched from hypothyroid for 15 years to Hashimotos. Two of my coworkers have it as well and one said when she does whole 30 or gluten free she notices a huge decrease in fatigue. I still love my fries and pasta, but I might try to eat a gluten free meal here and there now to see if it helps. I have 0 kids and my husband and I plan to start trying here in about 7 months (cruise to Zika territory next month). So now I am super worried about fertility issues. I am 5'3 with a very small frame so I should probably weigh around 110, but I have always been 128-140 yo-yoer. I have lost about 15lbs in the past two months and associated my symptoms these past 3 weeks to donating blood, diet, starting birth control again (no TOM for cruise), and marathon training. Very frustrating to find out it's my stupid thyroid
  • canadianlbs
    canadianlbs Posts: 5,199 Member
    edited August 2017
    Options
    GottaBurnEmAll wrote: »
    canadianlbs wrote: »
    i was thinking about this for a while, so pardon me using this thread to get it off my chest.

    it's not hard (so far) for me to lift consistently. as far as going to the gym and doing the lifts, that has not been my challenge so much. but all of compound lifting is proprioception - using the sensory signals your body sends you to 'find' and then guide each part of it so you're doing the right things with the right muscles at the right time.

    that's a joke with a body like mine. it just never tells me the same story for long enough - and it's arbitrary. this really drives me insane. i can make a few weeks' worth of progress at something, get used to the sensory signals of it, and then come a day in week four when i'll go to do it and suddenly yeah. now my hamstrings or traps are speaking urdu instead and i don't know what they're saying so i no longer know where 'my' form is.

    i have to admit that this gets to me. i waste so. much. time, just dicking around at another dose of square one because something feels different and i no longer trust myself until i've re-done the whole groove-greasing thing for the zillionth time. and it gets to me because i do lift consistently. i don't feel like my disorder is anyone's business but mine, but i mind when people sometimes ask me how come i 'never' seem to 'go up in weight' becase they've been watching me do this kidn of hting with apparently-to-them decent form for years now.

    i mean, most of them are respectful, and yadayadablahblah and whocareswhattheythink and so forth. but stuff that. it still gets to me and makes me aware that i'm different, and being aware that i'm different makes me sad about the non-different stuff that i'm missing out on.

    okay, done. thx.

    Is this why I never progressed much with strength training? I'm currently doing bodyweight and am going to add kettlebell swings (I'm waiting for a gizmo from Amazon to use plates from my adjustable dumbbells on a kettlebell handle) just to mix things up.

    I've been at a loss for 3 years to explain this. It has always, always been 1 step forward 2 steps back with lifting for me.

    never got back to you about this. i guess i can't answer for you, and i don't even know for sure that r.a. is why i have this completely inconsistent pattern of biofeedback. but i know that i have it and it is holding me back.

    and i do know that of all the various people i know who also lift, i'm the only one who seems to experience this to the degree that i do. working with a 'club' where i'm watching other people's progress patterns over a long period is discouraging in one way.

    but on the other it's also a little bit of a comfort, because at least i get to feel sure that i'm not wrong to think i'm atypical. i don't think i know anybody who thinks as much as i do about the micro-details of lifting, or who is as right as i am as much of the time, about when and why something's off.
  • shcgiebs
    shcgiebs Posts: 41 Member
    Options
    I have had an auto-immune for @ 5 yrs. IGA Deficiency. Last week I was diagnosed with another, Sjogrens. I had to fight for almost 4 years to get the tests and referrals I needed, but finally paid off. Saw an RA doc and she hit it spot on. She put me on Plaquenil and a week later I am already feeling improvement. Don't give up!
  • FL_Hiker
    FL_Hiker Posts: 919 Member
    Options
    demoiselle2014 wrote: »
    Are there other members here trying to stay fit while dealing with autoimmune illnesses? I am under treatment for Sjogren's Syndrome, currently taking prednisone (and I have been for more than four months). That medication presents its own challenges in terms of fitness, and I feel like I have no one to discuss the process of staying/getting fit with who understands.

    Does anyone want to join me in a mini-support thread?

    I have sjogrens too, as well as raynauds and hashimotos disease. I refuse to give up, I feel as long as I keep moving I can stay active.
  • lepkebrown
    lepkebrown Posts: 4 Member
    Options
    Madwife2009 wrote: »
    Slightly OT, but can anyone who takes the biologics answer a question? I currently take methotrexate but as I can only cope with a low dose, and have "failed" other DMARDS, I'm going to be taking an etanercept biosimilar alongside the methotrexate.

    Anyway, the question is, do the biologics help with the incessant fatigue? I'm experiencing a flare which is knocking me for six and I'm so tired, it's unbelievable. I just want everything under control and to be pain-free. I think that I just want someone to give me a glimmer of hope and say that it may help - I know that we're all different and we all react differently to different drugs. My consultant has been promising me for months that each drug I take will "sort things out" but ten months later, I'm worse than I was before starting the DMARDS and I despair of ever feeling like normal me again :(:(
    Madwife2009 wrote: »
    Slightly OT, but can anyone who takes the biologics answer a question? I currently take methotrexate but as I can only cope with a low dose, and have "failed" other DMARDS, I'm going to be taking an etanercept biosimilar alongside the methotrexate.

    Anyway, the question is, do the biologics help with the incessant fatigue? I'm experiencing a flare which is knocking me for six and I'm so tired, it's unbelievable. I just want everything under control and to be pain-free. I think that I just want someone to give me a glimmer of hope and say that it may help - I know that we're all different and we all react differently to different drugs. My consultant has been promising me for months that each drug I take will "sort things out" but ten months later, I'm worse than I was before starting the DMARDS and I despair of ever feeling like normal me again :(:(

    Sadly no 😢. I’ve been on Biologics for probably 14 years, I’ve been on 4 different ones. Initially they’ve helped with pain but not fatigue. I’ve not been in remission now for around a year and have just started JAC’s that are not currently working and I hate giving in. But I push myself to work out at least 3 times a week including strength/ weight training but it’s hard. I road bike too but sometimes have to stop the distance rides.

Categories