I saw my rheumy yesterday for a regular visit. I'm in the midst of a minor flare, and she "wasn't happy" with my knee. Not only was it swollen, but it was hot. So I'm on a medrol dose pack to get over the hump with this. I did bring up that I don't seem to be under great control, but she feels that biologics are still not in the picture for me at this point. I asked specifically about it.
I've been taking leflunomide every other day for about 9 months. I had initially been taking it every day for 2 months, but the side effects were unmanageable. So we're going to try to build back up to every day. Start with 2 out of 3 days, and then maybe 4 of 5 days, then every day, or something like that.
I did have x-rays done on my knees last spring. Nothing specific, just some mild joint space narrowing, so that's not likely the source of my left knee pain. It seems to be all soft tissue and inflammation. It's become obvious that my hips and shoulders are impacted by this flare as well. Sore rather than stiff, mostly.
My fingers are definitely acting up. One is a sausage, and multiple fingers are painful. I'm hoping the dose pack will help out with that as well. For obvious reasons, I like to minimize my use of steroids.
So nothing significant with the rheumy and I'm sure my blood work will be typical, just a mild anemia.
Oh, the other big news is I got my cast off my hand two days ago. For those who don't know, the basal joint of my thumb had gotten really unstable and very painful. I had a tendon transfer surgery to stabilize the joint. It's pretty stiff still, but there's some progress, and I started seeing the hand therapist today.
Reading this makes me sad: I think this disease is really beating you up. Sore fingers, a tendon transfer, hand therapy, joint space narrowing in your knees … doesn’t sound under control to me either!! Your rheumie sounds like the one I used to have. When I asked about a biologic she said that I wasn’t severe enough. That is when I got the second opinion, and I turned a corner.
Any chance you might be able to get a second opinion on this?
I echo everything Seenie said. It seems obvious that you need to treat your PsA more aggressively. Is your rheumy giving you reasons she doesn't want you on biologics yet?
Nym- Some of the standard reasons, including that she feels my PsA is not that aggressive. The truth is, I have very minimal bone changes. Most of my damage/pain seems to be soft tissue. Not too sure I agree with her assessment, but I also understand that because there is not aggressive joint damage, erosions, etc, there is not a panic to change. If/when the increased leflunomide doesn't improve the situation, the next step would be biologics. I'm on 2 DMARDs, and failed MTX.
Seenie- It does make me wonder if I shouldn't get a second opinion. There is another rheumy within the practice, which is a large regional practice. But I would likely do better with a different practice altogether. Theoretically, I could go into Manhattan for a second opinion. I would just need to request copies of my charts from both the rheumy and my eye doctor. I know that you made a move like that, going to a research based clinic.
Who remembers what the place in Manhattan was that was recommended?
Yay for the hand. Boo for the knee. I'm on a twenty day tapered steroid dose right now. I feel ya on that one. Don't want to be on it, need to be on it.
Frustrating that your rheumatologist doesn't consider soft tissue damage to be a sign of your disease progressing especially when that's half of the disease. It would be a total hassle to get all your stuff transferred to a research facility but it might be reassuring to get another opinion and to get a baseline on your disease for future comparison. Hang in there. In the meantime: guinea pigs in hats!
Going to the research place for a second opinion was a huge and I mean HUGE hassle. (Six hour trip each way, with a hotel stay.) And so worth it.
Stoney, I agree with your going to another practice altogether. In theory, docs will be impartial, but in practice, I sometimes wonder.
Since when does soft tissue damage not count? Huh? And one more thing: how do you FEEL? How is your mood? Your energy level?
Jane, I feel a smile seeing those guinea pigs! LOL
That sounds like a good plan to gradually build up to the dose you want. Sometimes it works. I'm glad there's some progress after your surgery. This struggle with the meds is frustrating isn't it. I get the same, hot red areas that flare up. If I'm lucky I'll have one of those days when I'm at my next appt.
From what I can tell, hand therapy is important. I'm having trouble doing everything. That is all very familiar...the the thumbs...argh !
I think if it's swelling and hot...the PsA is very active.
Dini- The idea is to fool my belly into not getting completely upset. Diarrhea is a pretty common side effect of leflunomide. When I started it last year, I started it at full dose, every day. We had to back off, because even though it was working, I spent a few hours every day where I had to be near a bathroom. Not really feasible all of the time, and definitely limiting. When I cut back, the belly trouble decreased, but the effectiveness of it did too.
This is the first time the the rheumy has "caught" me with the knee actually hot. Not that it's never been before.
Seenie- My mood is okay, but my energy is not. Fatigue has definitely been an ongoing issue for me. When I was on the full dose of leflunomide, I wasn't tired most of the time. But I replaced nap time with potty time, so it wasn't working. For me, it's a hassle to go into Manhattan, but I'm in the suburbs, so it really isn't so bad. On Saturday, I'll actually be going to that conference on psoriasis and psoriatic arthritis in Queens. It's about an hour each way.
I would request a second opinion at New York Presbyterian. Its really rare to get lymes AND Babesia (unless you are a pig farmer) In any event NYP just happens to be the number one place in the world for infectous arthtitis. I would not take an influenza vaccine without more info. For that matter I'd be very careful about Biologics. I'm glad for you that you have a doc who has given you answers that I am sure you were so desperate for. I can nit imagine the pain you have had.
You are so close to the BEST in the world, take advantage.
Stoney said:
Who remembers what the place in Manhattan was that was recommended?
Stoney, I am glad you are considering a second opinion from a different Rheumy. You have been though a lot and soft tissue damage is as bad as bone damage, its all very debilitating and painful. Hopefully you will be put on a more proactive treatment plan in the near future where you can finally start feeling like you are moving forward and not just stagnating. My thoughts and best wishes are with you as you go through this process
Stoney, I am sorry you are struggling so. For what it is worth, I am on a biologic. I did not have any significant radiological findings. The biologic really helps me with the fatigue. I wouldn't hesitate to get a second opinion. Best wishes.
Thanks Sybil. Youngish, not quite young. I'm 42 years old. My hips also showed mild joint space narrowing a year ago, and haven't seem to have progressed anyway. Both my rheumy and orthopedist seemed to feel that it was normal for a woman my age, especially since I am and have been somewhat overweight for most of my adult life.
I'm 41 and Stoney I agree you are still young! As my co-worker and best pal who is 56 would say, "Way to young to feel this old". I too feel that it would be beneficial for you to get a second opinion. I have a lot of tendon, ligament and muscle involvement. I have had a few cortisone shots and my doctor gets very concerned as he said it weakens the tendon. Our tendons, ligaments and muscles support the joints. They are just as important, if not more important then the bones them selves, especially the ones that help support the weight bearing joints.
It makes me sad to know that you just had surgery to help stabilize a joint, yet the importance stopping this disease from creating more of these issues is not being taken seriously? That just seems so wrong :-(
