What's an example of her doctor not trying to help her or you? I'm just curious because when it comes to PE treatment, there isn't really that much to it. I know it feels like there should be because it's such a critical health event. But honestly, once on treatment, it usually really is just a matter of taking your anticoagulants for either several months or for long term depending on the possible reason for the clot, and that's about it. Lot of times docs don't even know the duration right away. It's a wait see thing.

Listen, I have an autoimmune disease and it really can be taxing and it often feels like you have no control. These types of disease are opportunistic and not everyone responds to meds, so they're hard to treat. There is no cure, only management and that is a hard thing to accept sometimes. But the things we can control, like being compliant with our meds, taking care to keep our stress down, taking care to eat well and rest, to exercise, those are our responsibilities to ourselves. You mom deciding to stop taking medication for her RA is denying her own well being.

I am not trying to sound harsh so I'm sorry if that's how it comes across, but managing a chronic illness requires our participation, And remember, most medications can interact with warfarin. That's just the way it is. Doesn't mean you have to avoid those meds. It means you use good judgement and work with your pharmacist and doctor to determine if the benefits outweigh the risks.

If I can offer you some advice, you're a lovely young person so please make sure you're not taking on so much worry for your mom that you put your own needs aside. She is on treatment for her PEs. That's GOOD. But please make sure you're doing things for yourself, seeing friends, doing things that are not all about your mom's health. That's not selfish. That's self preservation. My mom was just diagnosed with Alzheimer's Disease last month and she's not that old and it tears me apart that she's suffering from this and has to make so many changes in her life, losing her independence and knowing her it's all going to get worse. I help her the best I can, but I can be of no help to her if I'm not taking care of myself too. It's about balance and trying to take some of the emotion out of the equation so I actually can help her. Otherwise, we both suffer.

Ditto to everything that @rmb said. It really can seem so overwhelming when you're dealing with multiple health issues. Take one thing at a time, make a list of questions you both want answered at the next appointment, and go from there.

Here's the thing with warfarin... it interacts with almost everything (seems like, anyway). That doesn't mean the kind of interaction where you're going to puff up and turn purple ... usually it just means that the INR will go up or it will go down. These kinds of fluctuations can be worked with... If you take a certain medication every day, your dose of warfarin can be adjusted so that it will work with the other medication. A competent doctor should be able to help with this.

I took antibiotics recently, which are notorious for bumping the INR up. The doctor warned me about this, the pharmacist did as well, and we scheduled extra INR checks to keep an eye on it. Over 10 days, my INR did go up... it went from 2.3 to 2.6 to 3.0, at which point I stopped taking it (only a 10-day dose). There was a clear interaction, but I was still in my target INR range (2.0 to 3.0) and wasn't in any extra danger from taking the antibiotics. Even if my INR did get a little over 3.0, I could have taken a lesser dose for a while to get it back in range.

It may be similar for your mom. She can start on the Lyrica, ask for a few extra INR tests to keep an eye on her numbers, and adjust if necessary. If it really has no effect on INR, then she ought to stay pretty much where she already is (assuming her INR has stabilized somewhat).

I guess I'm not clear on what else you want help on from her doctors... they're telling you she's safe to take medication that helps her and she's already being treated for the PEs... there really isn't much else they can do. It might be time to have a good talk with her about whether she wants to let the RA take her completely out of commission because of fear of the Lyrica.

If you have questions that aren't getting answered, write them down and insist on getting them answered. If you're feeling frustrated, definitely push a little to get the answers you need. The answers may not be what you want, but it would at least be a start.

I'm not one to sniff at fear and anxiety as they pretty much ruled my life for a few months after the PEs. If your mom is open to it, it might be a good idea to look at some ways to deal with stress and anxiety. I don't know what that would look like for her, as everyone is different. But she could consider medication, talk therapy, journaling, meditation, hot baths, etc., and etc. Anything would help, though, and I think it would be good if you both felt a little more in control of the situation.

Hang in there ... and be sure to take care of you in all this! It won't do her any good if you feel just as awful as she does.

Also, as a side thought, perhaps you could post in the RA group and see if they have suggestions?

Thank you. Really what's upsetting me is the fact that she and I have suffered with diseases like lupus (me) and RA (her) and plus we both have Lymes disease..something that has remained unmanaged and untreated because doctors don't want to believe it. I know this isn't the group for that but this whole blood clot thing is just added to the mix. I feel a wave of many emotions. Mom is gonna go back on it (Lyrica) and they'll watch her closely, I feel confident in that...I guess really what's eating me up is that our lives haven't been the same in such a long time and I just miss life the way it used to be..as im sure everyone in this group probably feels the same. So many people suffering. At 23 years old the last thing I expected was to be falling apart and have doctors look at me like I'm insane. Mom was only given Lyrica for what one doctor says is fibromyalgia while her rheumatologist hasn't begun putting her on RA treatment although her blood pretty much screams she has it..so do her twisted and distorted hands..they look at her like she's insane too. I just keep feeling like her clots might of stemmed from going so long with all these immune disorders. I may sound crazy for thinking that but I truly believe auto-immune is linked to hyper coagulation and how will it ever be resolved when doctors don't even want to believe what you tell them? In fact it was a nurse practitioner who did a 15 vile blood panel on both me and my mom and found Lymes, MTHFR mutation, and through the roof inflammation levels. She also found that our immunity levels were beyond low...mines like a 30?? She didn't explain anything to us so I've done my own research in the past 2 years (2013 is when we saw the NP)..we quit going to her because she said my mom basically "needed to rid herself of the inflammation" before treatment of Lymes could begin. She used natural medicine (loads of vitamins) to treat the other things. I guess a lot of that is what I'm getting at. I feel like my mom wouldn't have gotten to this point if we'd of had a clear diagnosis of things and treatment plan.

Rmb, I'm so sorry about your Mom. I know you must be going through much heartache as well. Please know you're in my prayers and I'm always here to talk to. I know I gotta stay strong too and thank you for reminding me of that.