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RA FRUSTRATION

  • By wannabe-healthy

    Must vent some. I know we all have problems we are dealing with, and as much as I would like to be on here to offer support and share, I just have felt so badly lately. I’ve had RA since 1998, which seems like forever. In the past 4 years, I’ve had low grade fevers, usually between 98.9 to 100.9. The doctors I’ve seen aren’t so worried, and I’ve had a number of tests even with an infectious disease doctor. All is well with a negative test, we all know that. (sarcasm intended) My fevers have always been from November to March, until this year. Even though I know they aren’t dangerously high, these temps make me feel lousy, like the flu or something.
    Two years ago I started having a cough, a dry cough that just lingered. After different suggestions that didn’t work, I was sent to a pulmonologist. He diagnosed me with mild COPD (non-smokers). I started on Symbicort inhaler with a rescue inhaler with albuterol. That helped until about 2 months ago. I ended up with the dry cough again and nothing would help. Even though my fever was gone, it came back, still low grade. With my immune system getting so low, I think I might be someone who would be considered differently at my family doctor’s, but the fact my regular doctor was overbooked, or at the hospital making rounds, I ended up seeing doctors unfamiliar with my situation. Sure, they skim over the highlights of your chart, but they don’t KNOW you. I ended up staying sick for 3 to 4 weeks seeing different doctors until finally I was diagnosed with pneumonia. After being on Leviquin for 2 rounds, prescription cough syrup, and prednisone, I was finally referred back to the pulmonologist. Now I’m on 3 inhalers, prednisone again, and still running the fever that is not alarming. Just a bit ago I checked it and it is 99.8. I feel like my body is made of lead and I move in slow motion. My fatigue is passed helping I believe, and my husband is giving me “looks” like maybe I’m faking it. (That part it probably due to my frustration and is not real.) I’ve missed all of my grandkids’ ballgames, and a dinner at church tonight. I just can’t get well, and the other side of the coin is I won’t be able to take my Orencia which will set me up for more pain.
    So sorry, I’m not really asking for answers, just don’t know what to do except lie around, and try to take care of me. Sometimes I wish I could curl in a ball and just sleep away. Bad thing there is I can’t sleep well, only short bits of time.

    Just needed to vent. I truly hope all are at a good place with their RA. I really know this will pass.
    Donna

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  • By ktinflorida

    Hi Wannabe. Stupid question, but I have to ask since I either missed it or you left it out… what were your PFT scores? DLCO specifically. I am having issues and have had chronic bronchitis. Were you or have you been on MTX? Did your Pulmonologist do a 6 minute walk test? Is your O2 holding ok or does it dip to the 80s periodically? Did they do that high definition CT scan of your lungs?
    Ok, so it was more than 1 question.
    I have a bunch of tests scheduled for June to find out what is wrong with me. They said it could be that the MTX damaged my lungs or it could be something called BOOP. How did they rule out BOOP with you?
    Sorry that I have more questions than answers for you. All I can say is that you aren’t alone in these types of problems. If I learn more about my situation, I will post about it. Lung damage from MTX is extremely rare from what I am told, so it is unlikely to be the cause, but they took me off as a precaution.
    Please keep us updated. I hope you feel better soon. Fever is no fun, even a low grade.
    KT

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  • By Savedbygrace

    I am so sorry that all of us are dealing with this. I wish I could offer some positive words , or some encouragement, but lately I’ve just been angry about RA all together. I really hope things get bettter for you! I know for me, it just helps being able to vent about it. Its no fun to not feel good..I miss my old self. I’m thankful to find support here, to read others experiences and stories is a big help to not feel alone on this battle.

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  • By Erin Rush Moderator

    I am sorry, Donna, and I don’t blame you for being frustrated. You’ve got a lot to deal with. I think ktinflorida brought up some good points that you can discuss with your physician. Dealing with RA AND COPD can be a real challenge. We so have a sister site, https://copd.net/, that you can check out, especially if you ever have questions about COPD. I thought I would mention that a few of our members have mentioned that they tend to run a higher body temperature since their RA diagnosis. It’s usually just a degree, at the most, but it seems to be an interesting phenomenon for some of our members. Here’s one of our contributor’s take on fevers and RA — https://rheumatoidarthritis.net/living/fever/. Still, please feel free to come her anytime you need to vent. I know it can be hard for family and friends to fully grasp what you go through on a daily basis, but know you are understood here. Thanks for reaching out and I hope you start feeling a little better very, very soon. Best, Erin, RheumatoidArthritis.net Team Member.

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    • By wannabe-healthy

      Erin, thanks for your response. I read the article on RA fevers and it sounded as though I had written it myself. Even rheumatologists say it’s not a symptom. Maybe not for all, but it definitely is for me. The fevers are strange. They will cause me to feel like I’m burning inside and I get really thirsty. Sometimes I’ll drink 3 glasses of water. Nothing has helped mine go down, it just happens on its own. They might last 10 minutes, or will keep me up all night. There’s no rhyme or reason. Also, I plan to check out the COPD site. Especially before my Dr appt. this week.
      I still feel badly and hope soon I can accept all that is going on. I don’t want to be old bitter and unhappy. That’s not who I’m supposed to be. I have so many blessings, so I will find a way to remember them everyday. Donna

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  • By wannabe-healthy

    KT, i’ll try to answer some of your questions, but i don’t know much. Mine started as a
    Dry cough that nothing helped. I didn’t have chronic bronchitis. I’m not certain of my PFT scores, seems it was a 4 digit #. He told me it was mild.

    MTX caused my liver enzymes to increase, so I was taken off early on. That was never mentioned in relation to my diagnosis.

    As far as tests done, a 6 minute walk test was not done, and I’ve had so so many x-rays and scans, I can’t remember which one he did. I see him for new tests this week and once I have my f/u, i’ll ask him. Last time I was in shock and didn’t know what to ask. Whenever they check my O2, it’s always 95 to 92, but some of my blood tests show my CO2 is too high.

    I know it will gradually get worse, like my RA but hopefully it will go slowly.

    I certainly hope your tests will check out ok. Please let us know.
    Donna

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