So sick and tired of being sick and tired! Please help :(

[Shelly]

For all of you methotrexate users....

...are you constantly sick?  Did you notice an increase in illnesses once you started taking the methotrexate?  I know it is winter and it's the time for nasty colds and flu, but I have been sick since Thanksgiving   It's just one nasty cold after another.  The Sjogren's and genetics always makes whatever cold I get turn into bronchitis which lasts for weeks and it's just so frustrating!

I started taking methotrexate in October because the Plaquenil wasn't doing justice, and since then I have experience 3 colds and constant nail and skin infections.  I have been on antibiotics more than I have not been on antibiotics.  I just want to know if this ever goes away or gets better?  I cannot seem to get well.  Last illness, which started about 2 weeks ago, I had to use 2 inhalers, steroids, antibiotics and rx cough meds just to make it through.  And now, I feel like I'm coming down with yet another cold.

It doesn't help that I am under massive amounts of stress at work, but I actively trying to improve that situation.

Any advice would be GREATLY appreciated.   I'm starting to wonder if the benefits from methotrexate treatment for Sjogren's are even worth it at this point...

[finallyadx]

Hello, I am not a methotrexate user but had a sister who was who was encountering the same issues as you right now.  The rheumy took her off of it and put her on a biologic - believe it or not she has sjogrens as well as myself!  She does not get any of the respiratory infections she was getting while on methotrexate.

I am not a dr by any stretch of the imagination but I would highly recommend calling your dr to see how he/she feels about all of the respiratory infections and issues you have had.  Have you discontinued it while you are sick?  It is my understanding, and again I have not used it so I could be entirely wrong, but I thought you had to discontinue it (as well as any biologics) if you were really sick.

Gosh I wish I could help you...tis the time of year for so many nasty colds, flus and viruses too.

Please keep us posted how you are doing and what you decide.

Sending positive thoughts your way.

[SjoDry]

Shelly,

Methotrexate is an immunosuppressant. It is likely that your immunity is not as strong allowing for opportunistic infections. I suppose you have to weigh the pros & cons of how
much it helps your Sjgoren's symptoms. I am not on Methotrexate at this moment..but it has been discussed.

You haven't been on it that long. What does your doc say? Is there a period of adjustment with this med?

I hope you get some relief soon.
I do what I can so that I can function at work also. That includes my lawn chair cushion for naps when necessary.

Take Care.
SjoDry

[warmwaters]

You need to let your rheumy know.  Some of us don't do well with immunosuppressants.  S/he will probably discontinue it.  Basically, your immune system is having a hard time fight off infections, and that can be a serious problem.

I'm one of them. Now, I feel much better on prednisone, or Cellcept, or medrol, but I get all kinds of crazy infections.

3 weeks into Cellcept, got a bug that turned into pneumonia.
On prednisone, had a variety of infections, including a weird, rare fungal infection in my ear.  My doctor said he had never seen this type of infection before, though he'd read about it in his tropical medicine class in medical school. Note that I do not live in a tropical location!
etc.

So my rheumy avoids immunosuppressants as much as possible. I will occasionally do a short burst, but when I do that I try very hard to stay out of public spaces that up my chance of infection, and try to be good about hand washing, etc.

[SjoGirl]

Mexotrethate can lower your blood counts, which in turn can lead to constant infections. As others suggest, talk to your Rheumy and soon. The effect on your counts can continue beyond going off the drug. I had to have a Neulasta injection to raise my white counts after I was on MTX (this is I understand fairly commonly done with people receiving MTX for chemo).

[bjnc]

I took methotrexate for 11 years and could only tolerate the lowest dose due to low white blood cell counts and frequent sever skin infections and bronchitis, etc.  I'm now on combination of biologic and Sulfasalazine but am having to decrease or go off some meds due to mildly elevated liver enzymes. (I have psoriatic arthritis as well as a Sjogren's/lupus illness.).

I've had problems with low white blood cell/neutrophil counts on any immunosuppressant I've been on, but they work so well and my arthritis is so bad without them That I stay on them and am monitored very closely.

I started taking EmergenC about 2 1/2 years ago, and I have only had one cold since then. I used to get them very frequently, often going into bronchitis. EmergenC is a powdered supplement with a lot of vitamin C as well as other vitamins;you just mix it with water. I get it for a good price at Sam's Wholesale Club. You can get it at the drug stores also, but it's a lot more expensive than at Sam's.

[Sleepy In Seattle]

I'm a weirdo who has had much LESS sickness since being on Mtx....I used to get EVERYTHING that was going around - at least 3-4 nasty viruses every year. I've been on Mtx for 3+ years now, and have only been sick once or twice (actually, I'm just getting over the flu right now ironically - but I AM getting over it!  ). I think the Lupus/Sjs really hurt my whole body so I got sick a lot. Now that the diseases are under control better, I stay healthier.

I don't take the Mtx if I have an active infection or virus. When I feel better, I start up again. (I do take Plaquenil and 3.5mg prednisone every day, though).

Everybody's different.

If you have been on antibiotics a lot, your gut flora is probably really damaged....more and more research (mainstream research, not "fringe-y" stuff) is finding that much of the health of our immune system depends on our gut flora. Stress damages them, too. It might help you to take an intensive dose of probiotics and make a point of eating yogurt and fermented foods for a while. When I do that, I use 2-3 different formulations and rotate them.

Not by any means saying it will cure you, or that you don't need to find an alternative to Mtx - definitely talk to your doctor!!!! But whether you change that or not, rebuilding your digestive tract might help you feel better and fight off future things.

Sorry you're having such a rough time!!!! 

[erica259]

I could not take Metho myself... it made me feel too sick and at this time in my illness it's possible benefits were not worth the battle for me... everyone is different. I think one has to decide if the possible benefits of the medication outweigh the constant illness.