Anyone else have immune supression due to RA drugs?

[NewLeaf]

I have had RA since my early 20's am now in my 50's. Would love to know if anyone else out there has had their immune system compromised, surpressed or whatever they want to call it these days due to RA drug therapies?

I have been on TNF inhibitors since they started them in level 3 & 4 studies in the mid 1990's through 2003, Rituxan (2 years on a study, 1 year after FDA approval) since 2005 and Methotrexate forever, not to mention the usual prednisone for dealing with flares. For the last 4 years I have had to not use any TNF drugs because of this immune system surpression caused me to aquire a life threatening fungal infection that took months of IV drugs therapy to cure (I thought). Went a year without any RA meds (OUCH) due to the infection. Now, after Rituxan has controlled my RA I am again fighting off two different lung infections, one is  Pseudomonas aeruginosa (multiple drug resistant strain) and the fungal infection is Aspergillus fumigatus, a very common fungus that normally doesn't infect healthy people, but does cause serious infections in immunosurpressed people.

If anyone out there has also delt with this issue  I would love to hear from you as I am truly not knowing where to turn in terms of long term treatment of both my RA and the infections at this point.

Thanks -

[txsilver]

Hello.  I have only been on MTX for a year and have, so far, not been placed on any of the TNF inhibitors.  I do talk to many people who are on them and have heard of people developing lung infections and other problems.  The risk of infections on these drugs is increased.  The drugs do depress our immune systems so that they won't be so "bored" and attack our healthy tissue.
What have your doctors said about the infections and your RA treatment options?  What was it like to go one year without the RA meds?  

[NewLeaf]

TXsilver - Thank you for your response. I just got back form my Infectious Disease specialist and go into the hospital on Monday for a 4 - 5 day course of IV drug therapy for the lung infections. YEA, have never been more thrilled (truly) to go into hospital. These infections are literally killing me.  Yes, I went on the TNF's and the Rituxan and stayed on MTX knowingly and willingly because of my RA. It is a roll of the dice, a fine line we tread with all medications.

Now for your question. Everyone's RA is unique to them. As you well know, some only get it in their elbows or fingers or knees or like me - everywhere, including soft tissue which was why I have had little choice in choosing which medications to help remit my RA. So a year without anything was to put it mildly, HE** on earth. I could not move and had to be picked up by my husband to be moved from bed to couch and bathroom most days.  I did use some pain meds to help me get to sleep at night, darvocet, and boy did I look forward to nighttime when I would take it. Relief, any relief was wellcome from the unrelenting pain from head to toe, even my jaw.

Personally, based on my past 25+ years with RA, I think our body doesn't like to be fooled and wants to do what it does best, have the immune system go out and attack our joints, etc. By this I mean, I have witness my body do well on the RA drugs as they came out, MTX being the first miracle after (does anyone remember these) - gold shots? Which never really worked. After a time my body figured out ways to get around MTX and I was actually more active than before. The the TNF trials, oh what a beautiful miracle!!! I had 5 blissful years on them until my immune system dumped leaving me with a compromised immune system that still loves to attack my joints but not fight infections. It took nearly on Rituxan for me to feel any relief and I had another wonderful year until now.

I guess the point of my story is for everyone out there questioning what medications to take for RA GOOD! If you only have a few joints that are affected, think long and hard before you embark on this journey. Use the medications out there wisely and knowingly. With this I will leave a URL from a british publication on RA medications please read, it will hopefully spark your interest and you will research more and ask your doctor good questions.  May you all be well.

http://rheumatology.oxfordjournals.org/cgi/content/full/45/7/787#BIB11

[NewLeaf]

Rituxan clarafication - It took nearly a year on Rituxan for me to feel any relief and then it started working. I then had a good year before the infections cropped up again.

[txsilver]

I am glad you are going into the hospital too!  I will keep you in my thoughts and prayers.  Please drop a note when you get out and let us know how you are doing.

Your story touched me deeply, thank you for sharing it with all of us here.  You are right, it does affect us all differently.  I marvel at the people I see out working like I use to be able to who tell me they have RA, too.  Would that we could all have mild cases!

For those of us who are struggling to function and have to consider the aggressive therapies, we have to weigh the risks.  For me, I was hardly able to get off the sofa before I started the injectable form of MTX.  It was the combination of pain and fatigue that kept me down.  As such, the gain outweighed the risk.  If I have to, I will take quality over quantity but I sure hope I get both as I know we all do.

For you and for all the others out there who cannot take or get no relief from the current medications available, I pray they will come out with a new treatment soon!