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Got Pnuemonia, off Meds

Posted , 7 users are following.

karen0310
karen0310

I have nodules on my right lung that are presumed due to my RA and monitored with a CT scan every 6 months.  This past scan, 2 weeks ago, showed a large area of what looked like pneumonia, but I did not have symptoms that day.  My rheumatologist took me off methotrexate and said to hold off on starting cimzia (I had been on humira but it wasn't working for me, so I was switching meds)... because apparently the MTX and just RA, itself, can cause lung problems.  A few days after the scan, I did develop full-blown pneumonia, and was put on antibiotics, and it is slowly resolving. I saw a pulmonologist this morning, who wants to do more tests over the next 4-6 weeks.  I cannot go back on the RA meds until follow up in January, just in case the pneumonia/lung problem is from the MTX.  Where I was in poor control with MTX, weekly humira, hydroxychloroquine, and prednisone, I am now only on prednisone 20mg daily.  My rheumatologist prescribed mobic and ultram to help with pain.  It's not helping all that much.

I am worried about work; I have time off but I hate being out.  I am worried about my family; I have a special-needs 5yo and a preteen (who is hormonal)--I have an awesome husband--but it's just us; there's no one else nearby to help out.  Obviously the holidays are going to be *very* low key this year.  I am hating the way my condition is affecting all these other people.

I know there will come a point that I'll have to reduce my hours at work, because I was already having a hard time working ON meds. 

Is it unreasonable to see if GP will prescribe something for anxiety? Are there any little tips or tweaks for getting through the day without meds? (I know about heat, taking breaks, using assistive devices).  I am afraid I am going to be curled up like a hedgehog, all prickly and not able to function.  Not how I want my kids to see me. 

1 like, 14 replies

14 Replies

  • bob_2020
    bob_2020 karen0310

    Posted

    Hi karen i also have nodule on lung and i get a yearly scan done also on mtx and cimzia i have never really had any chest problems as of yet but i am in much the same situation ur in there with ur meds and nodule on lung..kinda scares me abit when i think of having nodule there cos i was thinking the worse when i was told i had something there never knew at that point RA can cause this ur better stayin of ur RA meds untill january as u said till ur told otherwise to start them again when u get the all clear ...i am the same karen my RA is still sore even taking the medication i am its good ur still managing to work and hold a job down i could never do that so good on you there not alot more i can say karen just hope u can get back on ur meds and it keeps ur RA at bay and try and get by best u can but we know having RA its not a nice thing to have woshing u all the best karen .
    • karen0310
      karen0310 bob_2020

      Posted

      Thanks Bob, it really helps to know others are going through this! The lung issues scare me. Wishing you all the best too.
  • Rowbirdie
    Rowbirdie karen0310

    Posted

    Hi Karen

    you have a really tough situation especially with work and a young family on top  of your RA not being under control.

    i ve had a similar lung query happen . It turned out mine was RA related, not methotrexate caused. But while I had tests I couldn't have the biologic that had helped. I do have to say that prednisolone makes me very anxious, and prickly like a hedgehog. So does rampant RA with all the pain and fatigue. Now I am through this patch and Rituximab is working for me everything seems different.

    Hang on in there. Could you sit down with hubby and work through the issues as you can't do all if it. Think of any way to put less stress on yourself- food shop online? Link up with other families with sn kids? Talk through your situation with boss?Draw in help from friends even if you don't usually like doing this. maybe you already do all this ... So sorry if this isn't helpful. Oh ..and don't get overwhelmed with Christmas. 

    The only other thing I can suggest is that there is research to show it s best to take pred early in morning. At my worst I used to take a banana and drink to bed and have my pred and 2 paracetamol with snack whenever I woke after 4 am then go back to sleep. It made getting up easier and I kept up 2 paracetamol throughout the day every 4 hours. 

    January might seem a long way off but it will come soon and hopefully with it a better control of your RA than before when they find the right med for you and there are several biologics you can have without methotrexate if that proves to be the culprit.

    Gentle hugs.

     

    • karen0310
      karen0310 Rowbirdie

      Posted

      Thank you for gentle hugs! ;0) My people like the bear hugs. How did your docs determine your lung thing was due to the RA, and not the meds?

      I am grateful for any suggestions. You never know what other people do that could help. For instance, I make meals & freeze them for when I can't cook--I think that's a simple idea but others have lit up like a Christmas tree when I suggested it. ;0) Fortunately my supervisor's sister has RA, so she has been very understanding. Still, there's business to manage, and I dislike having to ask for down time. I'm going to ask about reducing my hours some each day. That seems most reasonable to me, but I'll see what she says.

      I have not tried taking medication around 4a. I'll start that now! I did buy a toe warmer for my mattress. That helps bunches in the mornings.

      I appreciate your response & ideas. Thanks so much.

    • karen0310
      karen0310 Rowbirdie

      Posted

      Gotcha.  I have entire right lower lobe consolidation and "patchy infiltrate" which they did identify as pneumonia, but then went on to tell me it could be caused by mtx, the RA or just plain old infectious pneumonia.  Maybe on the follow up CT they will be able to differentiate a little better. 

      Fibrosis is no fun either.  :0(  Sorry. 

  • ama38049
    ama38049 karen0310

    Posted

    Hi Karen. Off Humira for 2 months because of abnormal blood tests. Can only say that my hearts goes out to you. It hurts like hell. Hands get numb... I mused myself for a while thinking that maybe I get better without it. I am not. My solution is taking pain killers, changing eating habits (juice or fruit smoosy in the morning, no dairy products, almost no carbs, no bread, no sugar, chicken and salmon only, no life :-) ). It helps a bit. I go for walks although it hurts a lot - it keeps the body on some tonus level. Used to walk 4-5 times a week on Humira. And 2-3 TRX class's on painkillers... Now can hardly manage 1-2 walks... No TRX... Rest helps of course, but you cannot always allow yourself to rest. Not with children at least (I have 2 little ones). I hope that maybe something of this will help you. Family support helps a lot too (you mentioned your spouse). Mental health is a must on RA. Easier to say that to achieve when in constant pain... Hang on - hope that pneumonia will go away soon. Also, I take vitamin C and magnesium every day. Humira reduces muscle tonus so magnesium helps and hopefully vitamin C helps to fight low imminitet... They say Omega 3 helps too. Didn't find it useful. Still have it - that desperate that will give it a try again. Magnesium on the other hand was a blessing. I didn't know that my muscles were that bad before I started taking it. It decreases pain too I think. Hope that some of this might help a bit. Hang on once again. Hug
    • karen0310
      karen0310 ama38049

      Posted

      Thank you; I have not tried magnesium. I will add it in with the fish oil and the tumeric. My husband is an all-natural/organics/non-GMO nut so my diet is already free of most processed food, but I have not cut out dairy, and I do still eat carbs (in limited amounts). Maybe I'll try limiting those 2 things next. Thanks for responding. It helps to know someone else is going through it!
    • penny55083
      penny55083 karen0310

      Posted

      Hi Karen,

      So sorry to hear of your current difficulties. All I will add is if you cut out dairy make sure you don't become calcium deficient. Having RA and use of steroids are both causes of osteoporosis (thinning bones). The National Osteoporosis Society  website is  very helpful and tells you how to make sure you have sufficient calcium and vitamin D in your diet. Kale, almonds, oranges and tinned salmon are some of the alternative sources. Lack of weight bearing exercise is also a cause so try to stay on your feet.   

    • Rowbirdie
      Rowbirdie karen0310

      Posted

      Hi

       my rheumy prescribed calcium and vit D tablets as I was on long term prednisolone.

  • ama38049
    ama38049 karen0310

    Posted

    Karen, one more thing - many RA patients are treated with light anti-depressants or even meds for epilepsy that in low dosage reduce pain; consult your rheumy/family dr or neurologist - maybe it will bring you some relief. Good luck. A.
  • Debkimly
    Debkimly karen0310

    Posted

    I feel for you being off the medicine.  I would definitely ask about an antidepressant.  I take Prozac for headaches and also ambien to help sleep.  I am also so thankful I don't have young children or work to worry about.  Some days just dealing with RA is enough.  It does get old without adding pneumonia to the mix.  Feel better.
    • bob_2020
      bob_2020 karen0310

      Posted

      Keep in touch karen glad i read ur post cos i am near enough exact same as urself take care pal 👌👍👍👍
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