Sittin' on The Fence Gettin' Much Harder | Arthritis Information

These questions are for those of you who are on biologic DMARDS and TNF blockers.

Since you began your drug regimen, have you contracted any illnesses or infections and, if so, how often and what were they?

How were they treated? Did you have to stop your meds while ill? If you did, how did that affect your RA?

I've had the MTX in my cupboard since August 8th and still petrified to try it even though my disease has progressed to the point where the pain is constant and everywhere and the fatigue is unbelievable.

Hockey season starts tomorrow and I'm going to be in cold, damp arenas with dozens of kids sneezing and coughing all over in confined locker rooms, 3-4 times a week from now until April and all I can think of is how these meds are going to sap the he** out of my immune system and leave me vulnerable to all manner of nasty illness, especially respiratory.

In all other areas of my life, my ability to make decisions has always been solid as steel but over the past year, the progression of my RA/OA and the thought of the side effects from the med choices that I have to deal with these diseases has turned me into an emotional cripple.

Thanks, in advance, for any response.

Hi, I haven't taken mtx but I took humira without any infections and now I am on enbrel. The only thing I have had (and have had many times before ra dx) is boils on my skin. I am on antibiotics right now because of them. It has healed and I go back Tuesday to dr to see about getting the go ahead on my enbrel again.

The two things you need to not do is touch your eyes or nose with your hands and wash, wash, wash them often.

I feel personally that I would rather chance the side effects (if any) than chance getting crippled and in a wheelchair later in life. I have a sister who is an rn and her in-laws there are several drs and I am also friends with a pharmicist and they all said "TAKE THE MEDS!" Don't chance it. RA can be a nasty disease but with all the new drugs they have to treat it your chances of being crippled up is not like it used to be years ago.

I also carry around that antibacterial gel that I rub on my hands when I go in the public to the store, etc.

Best wishes for whatever you decide.

Hope u get something that works well for u soon.

lorrie2008-11-21 20:03:42I have been on mtx for 7 months now, no infection issues. But haven't been through flu season yet. I had mouth sores at first but folic acid and biotene took care of it.Hi Kat,

I've been on mtx since 1986 and on a biologic since 2002. I'm fairly healthy, don't get the flu (have an annual flu shot and have had a pneumonia shot) or colds much, but I do on occassion have problems with sinusitis. But, I'm not around kids much.

Cindee had good suggestions, plus eat well and get rest, don't get rundown. Look into taking omega 3, fish oil, it helps control inflammation.

Deciding what RA drugs to take can be hard, but uncontrolled RA ain't a good thing. If you try the mtx, you'd probably start on a lower dose then increase it as needed. For me mtx helped, but I eventually needed to add a biologic.

When I do feel rundown or feel like sick, I skip the enbrel or mtx. For me, skipping one dose doesn' affect the RA much, but we are all different.

Good luck, take care.

Hi Katalina, I've preached to you before about starting the meds and won't do that now.

I've been on biologics and MXT for over 4 years. We live half the year in Mexico and half in the states so I'm exposed to many different bacteria, viruses, fungi, etc. In the last 4 years I've had 2 sinus infections, 1 mild upper respiratory problem and a fungal infection on my leg. I've had less URI since I've been on the RA meds. The fungal infection became a problem because it was misdiagnosed. Once I received proper treatment it resolved quickly. I've had no problems. I had 3 surgeries last year, basal cell and graft, total knee replaced, and a heart cath - nothing related to the biologics. I had remarkable recoveries from each surgery. Eight weeks after a total knee I golfed 9 holes. I started with Enbrel with little response - but remember I have RA, very active psoriatic arthritis and OA. Went on to Humira and MXT with about the same response, stopped Humira and started Remicade and stayed on Remicade for over a year and had about a 75% decrease in RA symtoms but the PsA was still acitve. Went back to Humira with an increase in MXT and added Sulfasalazine and I'm now in RA clinical remission. PsA is still active and flares from time to time.

Have you been back to your RD and talked further with him/her? Everyone has to make the same hard decisions about the meds. I made the decision on the day that I found I was bedridden and couldn't walk from the bed to the bathroom because of the pain, inflammation and swelling. Lindy

Katalina,

I've been on mtx since March 07 and added Enbrel in Aug 07. I was never sick much before RA and haven't really seen too much of a difference since RA, other than this past spring. I was home from work for a week, combination of maybe flu and sinus infection. Had to cancel a trip to Seattle even. I do try very hard to get my rest and eat healthy and keep stress to a minimum. You can't let the the fear of meds stop you from trying to find relief, so hope you get the courage to just give it a try. I have to tell you that before I combined mtx and enbrel, I thought it was time for me to either quit work or find something p/t. The fatigue is so much better and I'm not looking at leaving my job any longer. Don't get me wrong, I'm still tired by the end of the day and look forward to weekends to relax and get some extra down time, but it's working for me. Hope the hockey season is a good one and the team wins!

Hi Kat...I've been taking mtx for 16 years now without any problems. I don't get sick very often..just the odd cold here and there. When I have a cold I still stay on the mtx without any problems. I don't even get my flu shot anymore (haven't for the last 4 or 5 years now I think) and I never had the flu.

I've been where you are now. Had the mtx but put off taking it because I was afraid of everything I had read about it. Then one night I got so bad that I couldn't move and my husband had to call an ambulance to get me to the hospital. That's when I knew I had to do something.

Try not to be too afraid...just give it a try. Remember...you'll be having your bloodwork done so your doctor will know if there's a problem.

Good Luck!

Kelly

MTX for a year.. I started enbrel in May -- no infections except a blister and an eye infection caused by the plug inserted by the opthamologist that came lose and irritated the eye.... they were one right after the other and I thought I wasn't going to be able to stay on the enbrel... had a UTI last month.. five days of antibiotics.. that cleared up and things have been great.

I understand the difficult choice... I thought about the meds for a short time... but the option of being unable to do anything was enough to make me go for it.

No infections...even colds...on biologics for 2.5 years (Humira, now Enbrel). Before that I was on MTX for about 3 years and eventually had to stop because of candida infection that kept recurring...no other problems with MTX.

Alan

MTX 4 years, mostly by injections. No infections only good stuff to say about it.

TNF's mostly Humira but have been on several other TNFs that stopped working after a year. 6 years all together, no infections and I have traveled to South American, Italy, and almost daily subways of NYC. My job included 6 guys who each have 2 to 5 kids under 10. Guys are dirty. Have had sinus problems when I start each TNF, attack with hot spicy food and saline spray.

I've never stopped anything for more than one week for colds that I was afraid was getting worse. Did stop MTX to go on a drinking vacation for 2 weeks. Had a great time, liver still ok.

They have saved me from a terrible life. I wish I would have started MTX sooner but I listened to people who scared me.

Good luck, this is new territory for our intuition, its good to change your mind. Shows you are thinking.I used MTX for 8 years and never had any problems with infections. I also have used Humira, Enbrel and now Rituxan with the same results. And just to let you know, when I first started on some of these meds, I worked in an elementary school. I worked with 1st and 2nd graders so I was definately exposed to a lot of illness......I took MTX for more than 5 years and Humira for almost three (total) and have really been quite well. In all that time I was only really sick once....and in the last five years how many times have you been sick? I ask that because the majority of people I know; those not on any sort of medication like this are sick far more than I have been.

I know the fear is there. It was there for me....it was there for all of us; but the medications are well worth it. THey make a dramatic difference in our lives. Please just give it a shot. The worse thing that can happen is you change your mind and stop.

I honestly believe those that worry constantly about getting sick are those that get sick the most. Does the negative energy bring it on? I don't know for sure....but I tend to think so.

[QUOTE=Katalina] You say hockey season is starting so your kids must be older? I had a newborn and a preschooler when I started MTX and young children can be sick ALOT when they are building their own immune systems, so that's a point in your favor, your childrem may have already caught alot of the run of the mill colds. When the younger DD was old enough for preschool, I was their teacher and was sick 2 weeks out of every month, you can't expect 3 & 4 year olds to understand spreading germs. Another point in your favor, if your children are playing hockey they can understand that you need to know when they don't feel well, to not cough in your face and to wash their hands. When I got sick I quit the MTX until I had recovered. Now, if someone is ill at work, my boss heads them right out the door and gets out the santizing wipes. There was a terrible bug going around, that everyone caught in Sept. I even took my Remicade in the middle of it and thank my handi wipes didn't catch it. I think you're being hyper anticipatory and you may be causing irreparable damage to your joints. You will never know if you're going to catch more colds until you take the MTX and in the meantime what's the RA doing to you. My girls are in college now, other than that year in preschool, I don't think I caught many colds and probably less than anyone else because I have learned to wash my hands until they're raw, I don't touch my face if I'm around someone who is sick, I'll even sleep in the spare bedroom if my DH thinks he has something. You can make it work, but you won't be able to undo the RA damage.My oldest son is in his second year of hockey and he is 4 so it doesn't mean her kids are older!!

Dont want to dissuade you b/c MTX has been great for me (and I rarely hear anyone here having infection issues on MTX...but do hear that occasionally about biologics)...anyway even with MTX my pediatrician didn't give my 4 year old his live virus MMR, will save that until 5 year appointment (Not sure what I will do then!) so do be aware of those things, and now my husband is convinced he has to change the litter...going to post separately on that! I am going to use it as an excuse this winter to make the whole family better about hand washing.

I am still at a point where I have a really wiped out day after MTX, only about 1 week a month. No pattern really. The rest I am fine. It's not doing a bang up job for me but the plaq. side effects are bothering me more at this point! My RD made me hold off of plaq a long while ago because he said one at a time, we need to know what side effect is from what. I am glad because i probably would have blamed my nausea on MTX, but it is from plaq!

I'm on mtx and humira and only get sick if I work too much. I work in an ER and I am exposed to all kindsa illnesses. I only work on wknds usually, but I've been wanting to have extra bucks for Xmas and have been working a couple of extra shifts a week, now I've missed the past two days at work. When I first started MTX I thought it was going to be my miracle drug. Like you was very afraid of it at first but after the first couple of doses I felt amazingly better. Perhaps my body has become used to the dose I take cause it doesn't seem to be as helpful as before. If I were you though I would definitely try it. If it does bad things to you, stop taking it.
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