Should I start methotrexate?
I’m 77 - have had three major joint operations in this past year; left rotator cuff, left partial hip replacement (not a planned surgery), and left knee replacement. The hip replacement was a breeze, others not. Plus I get injections and ablation for back pain. Knees and shoulders were because of active life (my lupus has been livable with limitations). The back and hip are from falls. However, the pain of recuperation and physical therapy has just seriously ramped up lupus flares that last several days, I feel better just in time for my next physical therapy session! It seems to me my body, my lupus, has changed throughout all this. Because of a mess up of appointment scheduling I’ve had a week off. I had time to feel a little human again, good enough to get a much needed pedicure (I can’t reach my toes without pain) and a haircut. At the pedicure I asked they not do a salt scrub, the last time irritated the arthritis on my big toe. So they gave me the paraffin wax thing, and then a vigorous massage of my calves. She seriously plowed into them!! My toes look great, my back was hurting (I sat too long), but I was glad to get that done. Later that evening my calves felt like they were on fire!! All through the night they burned, until 10:00 the next morning! I guess saying they were over stimulated is an understatement! Is that a lupus thing? It seems almost any, everything brings about a flare. I guess they’re flares - I hurt in my joint areas (even replaced ones), my feet, arms, etc., debilitating fatigue, etc. The pain from physical therapy puts me in a flare until the next appointment. These flares aren’t as long as some I’ve read here, so I wonder is it really a flare?? I don’t know, but it’s been constant misery for this past year. And I can’t carry in the smallest package into my house without collapsing in bed in order “to get over it”. I’ve been watching YouTube videos about Methotrexate, my hair dresser (wonderful person!) is on it for a gastrointestinal thing (not lupus), she said it saved her life. I’ve avoided trying it because as I understand it once you start something other than plaquenil (which I’m on), you permanently damage an already messed up immune system. But at this point in my life - if I can feel better, I’m considering it. Am I too old (77…personally, I’m shocked by my age!) to try methotrexate? Are there any other “old timers” here?
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We appreciate you reaching out.
It sounds like you are having a challenging time.
I certainly hope others will chime in here with their experiences on methotrexate.
In the meantime, I am sharing this article that may offer some helpful information: https://lupus.net/living/immunosuppressants
I would also recommend having a discussion with your healthcare provider to see if this is the best option for you.
My best, Doreen (Team Member)Hi,
!
I just want to chime in here and say that I am sorry you are experiencing these episodes of serious pain. Whether your body is technically flaring or just responding strongly to use and stimuli, I can't say. But, what matters is that these issues are impacting your quality of life. A few of our members have tried methotrexate and what I can say is that like any medication used to treat Lupus, what works for one person may not work as well for another. And Methotrexate is no different. I will say that after years of reading of people's experience on this medication, there seems to be no middle ground. Many people seem to know relatively quickly whether it's a good fit or not. And, yes, it is a heavy hitter and some people's bodies can handle it and others cannot. Again, you tend to find this out (usually) relatively quickly.
I wanted to share a couple of our members' experiences with Methotrexate to give you some idea what you might expect. Here's one positive story -- https://lupus.net/stories/accepting-self. And, in an effort to offer balance, here is a member story where she shares how methotrexate was not a good fit -- https://lupus.net/forums/lupus-warrior-support. Also, here's a conversation from our forums about Methotrexate -- https://lupus.net/forums/methotrexate. I do hope you get feedback from other community members and are able to make an informed decision. Regardless of age, you have the right to live as pain free as possible. And, again, with age in mind, you may have a different rubric for weighing the cost/benefits of this particular treatment. I firmly believe that each individual should have the right to have the final say on what treatment they try or reject (with some stipulations).
Good luck and please do feel free to keep us posted on how you are doing. I hope physical therapy becomes less painful for you. It's kind of hard to convince yourself to do something when you know you will pay for it later with lots of pain and discomfort!
Best, Erin, Team Member.Hi Edgelady,
I'm 72, so I'm up there with you. I can't really help with the Methotrexate, because I've never been on it. For years I was on Benlysta monthly infusions, and they ended up putting me into remission, which lasted about 6 years. At the same time, though I had fibromyalgia, so I really didn't any break from the joint and muscle pain, insomnia, or any of the other million lupus issues. Four years ago the lupus came back, along with Sjogren's Disease, and Mixed Connective Tissue Syndrome. I also have severe degenerative osteo arthritis, and have had 10 surgeries from neck to feet all before I even was diagnosed with Lupus. And IBS-C, high blood pressure. I am on Hydroxychloroquine and meloxicam for the Lupus and overall pain, and Lyrica and Cymbalta for the fibromyalgia. When things get really bad between all of them, which it sometimes does, I have hydrocodeine to help.
That's not going to help you, probably with the Methotrexate, but that's what I'm dealing with.,
We appreciate you chiming in and sharing a bit of your story.
Managing multiple conditions is no easy task.
What would you say is the most challenging for you right now?
~Doreen (Team Member)
Hi Doreen, I think one of my biggest challenge is the fact that I can't always tell the difference between the lupus symptoms and the fibromyalgia ones. If I'm absolutely exhausted and can't get up out of bed and my husband asks me what's causing it, I have no idea. I could be either. So could all the joint pain and the brain fog, and so many other symptoms. Even Sjorgren's Disease has a lot of the same symptoms going on. The same thing with a flare - what's causing it, people ask. Who cares, I may answer, if I'm not in the best mood (who is with a flare?). That's probably my biggest challenge - people who want definite answers, and I can't give them!
,
I hear your frustration.
Not only does it stink to juggle multiple (chronic) conditions, but when many of the symptoms mimic each other it's understandably overwhelming and exhausting to decipher and manage it all.
Sending gentle hugs, Doreen (Team Member)
