Thank you for sharing your experience. Sounds like a long hard journey and amazing strength and commitment by you and partner. I wanted to let you know your post has helped me remember the aim is to prevent damage....it's such an odd place to be taking meds with side effects, meds hopping looking for the one that will help, explaining to others why you would stay on meds that aren't having a big impact yet or have side effects, to see if things will settle down or get better....this feeds my own self doubt and gets me all confused again. But you have reminded me it's all worth it if it helps. I am not on mtx but might be soon (or on a biologic) as while side effects from Arava (leflunomide) settled alot at about 12 weeks, it's not doing enough. I started on arava because I was frightened of mtx but now I am eager to try it. My heamatologist told me in his experience more patients find mtx has less side effects than arava. Also I am going to ask to inject to see if this reduces GI issues. Good luck kaitysmom.
sixcatlawyer said:
Let me add my voice to the please don't wait until you see radiographic evidence. My wrong diagnosis/lack of diagnosis/lack of treatment for 6-8 years has had a direct impact on the shoulder replacement surgery I had in 2013, the hip replacement I need in the future, the knees which are both shot and the right shoulder replacement I will need (rather than rotator cuff repair).
I injected MTX for close to a year. It's amazing how much better I felt very soon after I began! I do warn you that I am one of those for whom the GI side effects never left. I've been injecting Humira for almost three years. This summer, now that my undiagnosed Graves disease has been treated, now that I am properly medicated with the right amount of Progesterone and now that I have Humira, I've felt better than since at least the summer of 2004!
As to talking to my spouse, here's what I wrote in an earlier response:
We've been through hell for at least the last five years. I spent a LONG time doing nothing but working, coming home and not sleeping well. Paul spent a LONG time getting more and more frustrated that I couldn't do the things we used to do. I can't tell you the number of times he mentioned how we used to take walks and now we weren't and so many other things. He was frustrated that I would not take the step to see a rheumatologist. I was frustrated that I couldn't take that step either. In 2010, we physically separated in that I began to sleep on the couch and he in our bedroom simply because I could not sleep in our bed any more. It was just too painful.
We went through worse hell after I had shoulder surgery in 2013. I wanted to curl in on myself. He wanted me able to make decisions. I don't know how we made it through that first week other than we're both too stubborn to give up on each other. Except that I almost did for the latter part of 2013 and the first seven months of 2014. I lost my center--our relationship--it affected every part of my life.
We FINALLY began to talk when I went through my cancer scare last year. He held my hand through doctor’s appointments, physical exams, a biopsy, two ultrasounds and a preop. He was THERE for me while I struggled to acclimate to the med, THERE for me the night he took me to the ER and we discovered I was two units down on blood. THERE for me as we grieved the fact that we would never have children. THERE for me the day I was told I needed to decide whether to have a hysterectomy and THERE for me on December 1, 2014, when the meds finally kicked in. He held me as I cried, sometimes knowing why I did and sometimes, only knowing I needed to grieve or was scared…and how hard tears come for me. All that time, the only thing I ever saw was love in those beautiful blue eyes. He has been angry and frustrated—and his voice has shown it--but it’s anger or frustration at the particular situation.
Slowly, slowly over that time, we began to talk.We cried a lot. We talked about how frustrated we both were by PsA. We were more bluntly honest with each other than we had ever been in the 35 years (then) we had known each other, more bluntly honest than we had ever been in the 31 (then) years of our marriage. We cried some more. We found our way back to each other because we're better together than we are separately.
He went to court with me in December of last year and when I was second-guessing myself, he said I think you’re a hell of a lawyer. You did your job. Other people needed to do theirs. He drove me to the penitentiary Friday of the week I testified—and I got to see it through his eyes, not my jaded ones. He was in court with me in May and began to understand in a very real way why I'm on a trial team and why I'm working so hard for this client. He was appalled at the "just us" present in that client's case. He was in court with me as I testified for another client last month. On the way home, he told me he was proud to sit and watch me testify, proud of me and proud of the work I do.
We've gone through a bit of a bad patch in the last couple of weeks, part of which is caused by me taking Methimazole for Graves disease, both of which have left my mood uncertain at times. We're talking (and we cried) our way through it, including the whys and wherefores of why my feelings were hurt and how we might change things. it's working for the most part--I was disappointed this morning but not angry and that's a big step from where we were even three weeks ago.
One more thing, since the meds kicked in on December 1 of last year, I still go to sleep in the recliner but most mornings, I'm in bed with him (we HAVE to get a new bed SOON). More than one person, including my rheumatologist , when I saw him in August, has remarked how different we look and sound. (I think Paul and I may have blushed). It means a lot to both of us that we're able to share--and enjoy--that closeness again.
That's a long-winded way of saying we've been through hell but we found our way through it even though I'm still not sure why or how we did it, other than sheer stubbornness, the fact that we were friends before we were lovers or married, and we both realize we're better as the two of us fighting this PsA and all our other battles. You are right, however, that coming through the quagmire into more surety about what's going on is HUGE for both of you. Now it's coming to grips with the fact that PsA is an insidious thing, waiting to grab at the damnedest times.