Dear Sjogren's Angels,
I haven't been posting for a while. I'd had Methotrexate injections since Fall 2021 but stopped in June because of elevated liver enzymes, even down to only 4 ml/week.
Four weeks later I began the worst flare of my life. I could not get out of bed....it felt worse than the worst flu. Headache, burning skin, fatigue, terrible depression, and on and on. I've been like this for two weeks and maybe I feel a little better. I want to hope so.
I recently read that flares are a result of Methotrexate withdrawal for about 20% of patients. I need your feed back and special brand of TLC.
I feared I was in a 'new normal' and couldn't bear that thought. And maybe I am, but I suddenly thought about Methotrexate withdrawal, and want your experience strength and hope.
For those of you who don't know me, I'm one of the very few unlucky people with severe neurological complications of Sjogren's. I won't go into details, but I'm completely disabled and the neuropathy is progressing beyond my wildest imagination. This is very rare and it won't happen to you, I'm sure.
Love, Elaine
I'm so sorry. I haven't been on that med. It would make sense that withdrawal could be problematic. I'm thinking temporarily. Sending good thoughts. (((Hugs))
Elaine, I'm not familiar with that med but I wanted to send love and hugs and well wishes. I'm sorry you are feeling so badly, and I hope it improves quickly.
Marie
It's been my experience that decreasing or stopping any med that's been helping will trigger a rebound effect in that the symptoms return worse than before the med, but they usually (hopefully) level out and show an overall improvement from the baseline before treatment.
Carolina, I do believe that this is true about having flares when stopping one of those meds. I was on Methotrexate for about 4 months in 2005 and had to quit but can't remember if I had any flare as I was in the midst of having mycobacterium kansasii and felt lousy to begin with.
You have been on this site quite a long time and it seems like we have had others who have had flares when quitting their Methotrexate. For some reason I seem to think that if one is able to slowly taper off the increase in symptoms or flare isn't as bad.
I am wondering if you were able to get any steroids to help you thru this flare. I would think that some steroids would have helped some to decrease the misery. I am so sorry you had to experience this as you have had enough to deal with as it is with your health. Here is hoping improvement is on the way. Hugs my friend, meirish
Hello. Several years ago the doctor told me to quit methotrexate (I took it for several years) and so I did. I remember that a month or two after I quit, I began feeling bad (but it was not a flare, it was a slow progression, I had pain in the joints and tiredness). I asked the doctor if he could prescribe methotrexate again, but he told me to take prednisone instead (2,5 mg) until I was better. I did that and I slowly improved.
I hope your problem is a temporary one.
I'm thinking that you are on a steroid now for some reason, Carolina. You were also on a higher dose of OV methotrexate if I remember correctly--which I probably don't. After we get older I would think that it would not be as big a deal if we had a steroid on board to recover from the loss of methotrexate or other meds that help us.
AT our age the side effects of some meds can't do much more to us since we are not in prime condition. Don't know if the doctor would agree with this though. I wish I could wave a magic wand and make it all better for you. I am assuming that you are able to get care from your staff when you are suffering this badly. It is a blessing to have staff around to help when we need it. Take care and God Bless. meirish
Thanks one and all! I knew you were here for me. I was on weekly methotrexate injections for about 3 years. The idea was that methotrexate would slowly replace the Medrol (form of prednisone) so I could get off the Medrol. Medrol is very bad for me and I've been taking relatively high doses for 3.5 years now.
Unfortunately the Methotrexate was damaging my liver, which is why I had to keep lowering the dose and finally had to stop completely. I went from .4 ml to zero.
That horrible flare is gone, thank goodness. I am still on 5mg Medrol (I was already taking that before I stopped the Methotrexate by the way, which is probably why it couldn't help the flare situation).
I find I have to religiously space my Gabapentin doses every 8 hours (12 mg 3x/day) because even if a 2 hour lag happens, I begin the burning and itching skin.
In all this, my osteoarthritis (plain arthritis) is getting worse! Just part of my general degeneration, alas.
Pain and disability are my constant companions and I do everything to make my life more comfortable. My DH is my caretaker and he has risen to the occasion spectacularly, I have to say. I am very fortunate.
Again, I am feeling much better and am so grateful for your TLC.
Elaine