JW, I’ve also been using gabapenten for well over 6 months now. I had severe neuropathy in my feet that kept me up at night and often had the burning feeling on/off throughout my day. It has really helped but I do notice that it is at its worst with inflammation (sausage toes or swelling in ankles etc). Ice packing before bed along with gabapenten has made nights better, reduced pain, and helped with morning stiffness just getting tendons stretched out and I am ready for my day. I immediately asked for diabetes tests at first but the doctor made it very clear neuropathy can be caused by much more than just diabedic nerve pain as it is my case. Sybil was spot on on that. Good luck and remember if you choose to stop the med you need to wean off it.
After 36 years if this I know I must be on some sort of biologic despite the immune weakness it can cause. I have had had bad flare-ups lasting a couple of months and received periodic steroid injections, etc. But it always goes away after a while. I cannot imagine NOT being on a biologic. I know the risks but they outweigh the pain, etc in my opinion. Best of luck in dealing with this.
Frances said:
Hi JW,
So sorry you're having a rough time. Are you taking a biologic? I didn't see it listed in your message? I understand how hard it is to deal with this disease alone - I'm single and live alone. Sometimes just the everyday things seem insurmountable.Is there anyone who can help out? Do you have a charity group in your area that can help once or twice a week perhaps with some basic needs, grocery shopping, taking the trash out etc.?
Please keep us posted on how you are doing and if you need anything.
Also, I have been having pain in both forearms and I'm concerned it's the PsA. Booking an app't with my doc before my regularly scheduled appointment.
Update: I saw my Rheum yesterday. He did a pretty thorough evaluation and spend a good deal of time listening to what has been going on with me. He prescribed Lyrica and Leflunomide (Arava). He also said it's time to consider a biologic but he wants me to adjust to these meds first. He scheduled a follow up in six weeks.
I talked to him about the PsA Clinic. He said he "knows them" and is familiar with their work. He also said he could refer me, but wanted to give these meds a try. This guy is relatively new (about 3 years) and I know he really cares (big difference compared to my last Rheum). I didn't pressure him for a referral, but I was left with the impression that he would refer me at any time if I want. Right now I'm thinking I'll try the new meds and see how things go. I'm still debating, wondering about the Clinic. I have that option, but am just holding the course for now.
I took my first dose of Lyrica last night. It was only 75 mg, but I can feel the difference already: nerve and overall pain are down and my mood seems better (more upbeat, less anxiety, more energy). It may be too early to tell, but I'm optomistic that this might be part of the answer. Lyrica is apparently very similar to gabapentin. I'm glad to hear it has helped so many of us (Sybil, Stoney and Rachel to name a few). I now know that this neuropathy is part of our PsA. I wasn't sure about that, but hearing so many of you share your stories and struggles has re-assured me.
(P.S. I also saw my Psychiatrist yesterday. He, in his infinite wisdom, decided now is a good time to stop my sleep medication. Said I am over-medicated. Apparently it isn't addictive, but I will be tapering off this med. He gave me refill for a month but said I should come off them and take only as needed. He knows about my Arthritis and med changes, emotional state etc. I'm just hoping it doesn't through me for a loop. Fun and games, I tell ya! )
I'm not sure what else to say right now except that I am cautiously optomistic. I'm still thinking about everything, including the possibility of the PsA clinic. It takes me a while to process these things. I'm a bit tired today but upbeat. That's a good thing : )
I know a few people who took lyrica and all of them found it very effective (almost immediately) for pain. Have you started the Arava yet? Good that he’s listening to you and that you’re having a relatively quick follow-up!
Hopefully if the pain abates a little you should be able to sleep better! I hope so anyway. I would probably still press for a referral only because they really give you a thorough work up - first visit they X-ray every single part of your body, and it’s all done on the same day at the same place. Hope your new regime works xx
I know, it is a lot to take on board, isn’t it? I’d consider asking for a referral just so that you get another set of eyes looking at you. If you ask for it now, you will likely get it about the time that the leflunomide should start working. If it works, they will be able to confirm. If it doesn’t, they will have suggestions. Nobody loses. You get peace of mind, the Rheum gets feedback and we ALL get one more subject for the PsA research which benefits everyone with this disease. We all win.
Good luck with the leflunomide, and don’t lose too much sleep over all of this! It IS a good thing to have options and people who are concerned about you.
Sounds like a good appointment with both answers and options. It's great that lyrica is helping already and that you're feeling more upbeat.
If sleep just is a problem, rather than being primarily pain-related, then I think that too might possibly be associated with PsA. And depression increasingly looks like part of the package too for some of us. I used to have considerable problems sleeping and those years coincided with the onset of PsA. As far as certainty is possible, I became certain that insomnia was due to disease rather than stress while spending an otherwise thoroughly enjoyable summer working outdoors every day doing a really fun job .... still unable to sleep properly at all. And because I'm so convinced that PsA affects the whole person I think a referral to doctors who also see it that way might be a game changer for you.
But all in good time. For now, enjoy the relief you're getting at long last. I too take ages to process things (and for once I don't think that's related to PsA!)
Golfnut said:
I know a few people who took lyrica and all of them found it very effective (almost immediately) for pain. Have you started the Arava yet? Good that he's listening to you and that you're having a relatively quick follow-up!Hopefully if the pain abates a little you should be able to sleep better! I hope so anyway. I would probably still press for a referral only because they really give you a thorough work up - first visit they X-ray every single part of your body, and it's all done on the same day at the same place. Hope your new regime works xx
Hi Seenie,
I do find it a lot to process initially. I get nervous about my appointments with my Rheum (and some other MD's) for some reason. It had nothing to do with my Dr. It takes me a while to absorb it all afterward.
I'm considering asking for that referral, in fact I know I will definitely be asking, just not immediately. I'm going to wait until I see him again, in about 6 weeks. I just don't want to push too hard too fast. I also want to see how I respond to the new meds.
Thanks the well-wishes and pointing me in the right direction with all of this : )
Seenie said:
I know, it is a lot to take on board, isn't it? I'd consider asking for a referral just so that you get another set of eyes looking at you. If you ask for it now, you will likely get it about the time that the leflunomide should start working. If it works, they will be able to confirm. If it doesn't, they will have suggestions. Nobody loses. You get peace of mind, the Rheum gets feedback and we ALL get one more subject for the PsA research which benefits everyone with this disease. We all win.
Good luck with the leflunomide, and don't lose too much sleep over all of this! It IS a good thing to have options and people who are concerned about you.
Hi Sybil,
I know what you mean about the sleep, depression and PsA, I know it all too well! I've had difficulty sleeping since my mid-late teens. I didn't have active arthritis then, but it started with plaque psoriasis when I was 13 (strep-throat triggered it I beleive). I began to have nail pitting shortly after.
The PsA started when I was 26 (25 years ago, early onset). It was on and off for a couple of years, but I had a really bad flare (and co-insiding depression/anxiety) when I was 29. I don't think I've been the same since then.
I've read numerous times about links between PsA, sleep disturbance, depression and anxiety. I can tell you that that is definitely my experience. In short, I agree that for some of us, this is part of the PsA package unfortunately.
Thanks for sharing Sybil : )
Sybil said:
Sounds like a good appointment with both answers and options. It's great that lyrica is helping already and that you're feeling more upbeat.
If sleep just is a problem, rather than being primarily pain-related, then I think that too might possibly be associated with PsA. And depression increasingly looks like part of the package too for some of us. I used to have considerable problems sleeping and those years coincided with the onset of PsA. As far as certainty is possible, I became certain that insomnia was due to disease rather than stress while spending an otherwise thoroughly enjoyable summer working outdoors every day doing a really fun job .... still unable to sleep properly at all. And because I'm so convinced that PsA affects the whole person I think a referral to doctors who also see it that way might be a game changer for you.
But all in good time. For now, enjoy the relief you're getting at long last. I too take ages to process things (and for once I don't think that's related to PsA!)