Rheumatoid Arthritis and immunosuppressive drugs

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methotrexate

methotrexateRheumatoid Arthritis is an autoimmune disease.  That is, the immune system mistakenly attacks the joints, connective tissue and internal organs of sufferers.

The treatment is to suppress the immune system activity, thereby preventing the pain, inflammation and damage that this causes.

The more severe the disease, the more immunosuppression required to get the disease under control.

This all sounds very logical.  But where does this leave the patient?  With a suppressed immune system, and therefore unable to fight off, what for ‘normal’ people, are simple, non-serious infections.

Another serious aspect of RA and other autoimmune diseases that the general population don’t seem to understand.

I asked a friend recently not to bring her child to my house if she was sick.  She did anyway.  “She only has a little cold”  is how she justified it.

Now, I don’t know how I picked up the ‘little cold’ that I am currently fighting.  I could have gotten it anywhere. But this is what happened.

Friend dropped child with ‘little cold’ to my house.  Two days later my daughter came down with a cold, the next day she was running a high fever.  Her fever lasted two days. She had a sore throat, a headache and was sneezing.  No cough.  A head cold.

She slept with me at night, as she was feeling miserable.

She was almost better on the third day.  I started to get sick.

The next day I had a headache, sore throat, sinus pain, nose so blocked I couldn’t breathe.  But no fever.  Just a cold.  Fingers crossed it will be mild, I tell myself.

Three days later I finally had to go to the doctor.  After three nights with no sleep, deep chest pain when breathing, coughing up revolting stuff, intense headache, sore throat and a deep sense of disbelief that one body can create so much snot, I realised I was quite sick.  My body ached all over and I had no appetite. I only forced food down because I needed it to take my RA meds.  I felt dizzy every time I stood up.  Nauseous constantly.  And exhausted.  I felt feverish, but my temp didn’t get over 38 degrees C.  Which is the line that I was told was where you need to see a doctor when you are on immunosuppressive drugs like Enbrel.  So I held off.

I should have gone earlier.  I was really sick.  I don’t know why I don’t recognise how sick I am until someone else tells me.

I am currently on Enbrel, methotrexate and high dose prednisone.  Three potent immunosuppressant drugs.  And plaquenil as well.  Only a mild drug, but I guess it contributes.

My doctor prescribed some very strong antibiotics.  Sinus infection, lung infection, possibly pneumonia.

He said go to bed. Go directly to bed. REST!

So that’s what I have been doing.  The antibiotics are amazing…after 24 hours I feel a lot better.  Long ways to go though.

But the message here is:

Your simple cold might be an immunosuppressed person’s pneumonia or hospitalisation. 

I am feeling very miserable and sick, but I’m not in any real danger. The antibiotics are working well.  But simple diseases can be very serious for immunosuppressed people.  People who have autoimmune diseases like Rheumatoid arthritis.

We are NOT over reacting.  We are NOT being hypochondriacs.  The risk is REAL!

Please understand.  Don’t do the eye-roll.  Don’t brush it off as ‘minor’.

It’s not minor.  It can be very serious.  I am not likely to fully recover from this ‘minor cold’ for at least another week.  It still hurts to breathe.  My head is still exploding. I still ache all over.  I really didn’t need this right now.  It is school holidays here, and my kids have spent the entire time at home with a sick mother.  I feel guilty and depressed along with everything else.

The upside?  My joint pain is mild.  It’s a strange thing that always happens when I get sick.  My immune system is too busy to attack my joints?  Maybe.

I’ll take any upside I can get.

12 COMMENTS

  1. My extended family laughs at me. The last time I felt a little twinge starting in my throat I called and made an appt. They think I am a hypochondriac I am sure. Anyway, better safe than sorry. I went to my appt. Strep throat. I keep telling them that I fully know my body…if anything can go wrong it will.

    • You did the right thing Claudia. Better safe than sorry is right! I’d like to slap them for laughing at you. It is NOT funny and the risk is real. Glad you don’t let them stop you taking care of yourself. You know your body best.

  2. I’ve established new routines in my home. After a day out, EVERYONE washes their hands. If one of my kids starts to feel sick, I double up on my vitamin C’s and I isolate the child. No laying out on the couch touching everything. They stay in their room and Lysol is my best friend!

    • Great ideas Christina. I’m rabid about hand washing and covering sneezes and coughs…and washing hands right away! Just gotta do the best we can to minimize the chances of catching it.

  3. Every time I get sick, my joints hurt less. I know I’m getting better when I wake up stiff and all my joints hurting!
    I have a great GP who understands how I’m on immunosuppressants, and when I feel the slightest twinge that my cold is becoming a sinus infection (almost always), I get an appointment and she gives me a prescription for antibiotics. We have the agreement that I hold out on filling the prescription for another day, or until I have a definitive feeling this is going to go downhill. Only rarely do I get better without the antibiotics.

    I started doing this because if I wait too long, I’m too sick to get to the GP by myself, so my husband needs to take off work to take me, and it can turn into something even more serious. Better to show up on day 4 of a cold when I feel myself getting slightly worse, than before I end up with pneumonia or bronchitis!

    • Exactly Marietta. That’s a good agreement with your GP, with the prescription. Makes a lot of sense. Just illustrates how important it is to have an understanding GP when you have a chronic condition.

  4. Lesson learned for me. Woke up last Monday with severe abdominal pains..had been getting signs that something wasn’t right for awhile but figured it was just side effects of the RA meds. By Wednesday (7\3) I couldn’t stand it any longer, called the Dr. and after being seen was sent to the hospital for a cat scan only to find out my intestines were enlarged and infected (with what they still don’t know) got put on anti-biotics 2 diff types taken off my RA meds and had to wait til Tues for the GI Dr’s office to call me back for an appt (due to them being closed for the July 4th holiday)., after talking with them had an appt the next day (Wed) 1st am and was scheduled for emergency colonoscopy for Thurs AM. Never again will I wait when the pain is that bad. Upside? feeling better now but never want to go through that pain ever again.

    • Theresa I’m sorry I didn’t see this comment! How are you doing now? I think most of us leave going to the doctors too long, cos, well, we’re always sick anyway! I hope you’re OK.

  5. Great article…. this should be sent to everyone we know, to educate them on this disease. The more we talk about the more it will be heard…

    • Thanks Evelyn. I agree…if only people understood! However the people who want to understand, always do. And the eye rollers will ALWAYS be eye rollers, unfortunately. But we can keep trying to educate. Some will listen and learn 🙂

  6. While I don’t have much of a social like anymore from RA and gastroparesis, among other diseases), I am glad that I don’t have to fight that battle so much anymore. People always think I’m being rude or “excessive” when I ask them not to come by or when I was working, to keep their distance due to my highly suppressed immune system. Even after explaining why, they still rolled their eyes like I was a big baby. But they have NO idea how a simple bug can make us. Now that I live off a feeding tube it’s even worse because any gastro bug means I literally can’t eat or drink for a week or more at a time, which threatens my life and puts me at even more risk of being hospitalized. Yet people still think, oh it’s not that big of a deal. My husband tries his best to keep away from germs at work or going out because he can be a carrier for a virus to me as I am so susceptible now to everything. I wish people would take germs more seriously and realize not everyone can handle another sickness, however minor they may think it is, on too of everything else we live with. On a side note, when I have a virus or infection, my joints also get better. I’ve always said its because my body is too busy fighting the rest of the stuff to pay attention to my joints as well. It’s also a sure bet these days, especially now that I have no meds to control the RA and it has been running rampant for two years, that if my joints stop aching at any time, I am about to get sick. Which helps me get things like Sambucol and immune boosters into my system to help combat whatever is on it’s way to me.

    • Hi Carrie Beth, thanks for your comments. I’m learning about gastroparesis, and I’m not learning anything good :(. You’re amazing to stay so optimistic with all that you deal with. I would like to slap the eye-rollers!!! They are usually the same people who are ‘dying’ when they get a *cold*. I’m very glad you have a wonderful, supportive husband who cares for you. I wish there was more that could be done for you, and all of us. Stay strong, and know that you’re inspiring others as well 🙂

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