Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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Argh!

SusieG
SusieG

Just venting - yes - again :)  I have yet to have a good stretch of time on MTX.  After being off and on and off and on and off and then back on finally up to 6 pills/week and that either not enough, or not kicking in yet, I now have another GD cold!  The worst I've ever had.  Before RA, I just didn't even GET them.  Now - ARGH - four since diagnosis.  So here we go off MTX again; cold meds (that aren't even making a dent) for a week; then a week of nothing before being cleared by another blood draw.  I am SICK SICK SICK of this!  Journey Shmerny.  Enough already!  Thank you - I feel a little bit better.

SusieG
SusieG
...and Shingles now too?!?!?!?
WarriorGal
WarriorGal
Susie - I understand nd am so very sorry. I had the FLU 3 times. Are you on any other meds other than MTX?? I am on Orencia and was on both Orencia and MTX but after getting the flu 3x, I went off the MTX! Have you discussed with your rheumy trying something OTHER THAN MTX?
SusieG
SusieG
Just mtx. Never seem to get to a point to definitively say it's not enough with all the interruptions I've had. Biologic alone is working for you?
journeythru
journeythru
Susie, understandable that you are sick of this. You're going through a lot. I've had Shingles and they are painful. I'm on MTX injections, and each week, after I inject, I get cold symptoms that last a couple of days. Also, I'm on Orencia infusions, and I've only gotten worse. It is a frustrating road that I wish none of us had to travel.

I hope you start feeling better soon.
MarleneJ
MarleneJ
In Canada, the protocol is quite different for going off mthx. I don't personally ever go off. I have had big issues with lungs since before mthx. And now, my grandchildren seem to bring home these terrible daycare colds, and I get them, and they turn into terrible bacterial infections.

But for me, going off mthx means agony, and I won't go there. My doctor said only go off if you are on antibiotics, not for every cold. Except for me, every cold turns into something needing antibiotics for sinuses and lungs. I said no, and he just shrugged.

I don't want to tell you to do something your doctor doesn't approve of, but maybe ask to see if you can try and stay on the mthx one time, and see if the results are any different. I am not better or worse if I am on or off mthx or my other drugs, infection wise. The only time I should have gone off was the first time I had shingles. That took 5 months to clear up and a month of Famvir. But hopefully 4 times with shingles is enough.

By the way, I am on 3 immune suppressing drugs - mthx, Arava and Orencia. Not planning on going off any of them. But maybe I will just communicate with my grandchildren via FaceTime, until they get through this terrible contagious cold part of their lives?
SusieG
SusieG
Doc is adamant on liver numbers control and thus the "no cold meds with mtx". I don't take anything for shingles. I've not had terribly severe since first time. Till now, I was the only person I knew who got it more than once. I've had prob half a dozen times now.
MarleneJ
MarleneJ
Have you ever had surgery? That is what triggered my shingles. I was taking cold meds, and it did bump me off mthx. For one week and down ,2 increments. (5 mg?) I swore that will not happen again, so this time, I didn't take the cold meds. Now, that was NOT fun! But better than flares, exhaustion, all the time it takes to rebuild the mthx in your system.

Not fun at all! No matter which way you choose!