Lyrica - DONE WITH IT

You haven't posted in over a week Sandi, how ya doing?

I've been meaning to update. I was taking 100 mg's at night, but was feeling very dizzy and hung over. A few days ago I went back to 50 mg's at night. I'm a little better, but still a bit dizzy. As for whether or not it's working at that dose, so far I do have improvement.

I'm glad to hear that. I'll keep praying.

Thanks. I'm wondering if Lyrica is causing the dizziness now. I think it's my neck, and I'm questioning my BP.

your neck? and you can go to most any pharmacy or Wal-Mart and check your BP for yourself.

We have a BP cuff here at home. My husband has BP issues. I haven't checked it....avoidance. I know it's up, I can tell by how I feel. I have a doctor appointment this week and one next week. I'll wait.

I think I have to think about stopping Lyrica. I was driving to the store today, been there 1,000 times, and for a minute didn't recognize where I was. I think I have too many issues right now to be able to figure out any of them.

I am familiar with avoidance. It can also be called being stubborn! You know your body best and I trust you will act accordingly. Can't wait to hear what the doctor says.

Oh, the neck. I have loss of C curve, herniations and disk degeneration. I have one mess of a neck. One of these days my head is going to be sitting on my shoulders like a scare crow.

I'll let you know.

Oh Sandi -- Please tell me it isn't so. I had so hoped Lyrica would be the magic pill to give you a great deal of your life back. Although, there was a selfish reason too -- If it worked well for you, maybe I'd have hope for me.

I don't think I could deal with any more foggy days, as it is the combination of antihistamines make me a dope for most of the day. I can't imagine adding another drug that might just make it worse. I may try Lyrica when I see the doctor again in a few months, but unless I can taper a one of these antihistamines, I'm afraid to.

Each time I try to taper the prednisone from 10mg daily, or drop one of the antihistamines, I get so itchy and the rash starts up again. I've resolved that I'll be on these antihistamines for the rest of my life and that is making me a little depressed. I can't seem to eliminate drugs -- all I do is add more. I get rid of one, add two..

I just got some of the lab reports from the NW visit - it seems my 24 hour urine collection showed protein, although no one mentioned it, so I don't know if it's just because it's low, or because the doctor at NW didn't notice it, or thinks my local treating doctor should deal with it. It seemed with the last appointment, I was lucky to get 5 minutes with the doctor and it seemed all he was concerned about was the success of the transplant. Despite the fact that I've clearly got something autoimmune going on, with the rash, the wheezing, the allergy symptoms, with no known allergies, he didn't seem to even be listening. I guess he just wants a successful healed lupus patient and if I end up with another autoimmune disease, as long as it's not lupus, he's happy. I can't believe I saw the elevated protein on the 24 hour urine and no one said jack about it. Now I have to worry about whether it's high, how high .. what it means, etc. So, I'll spend time on the internet trying to sooth my worry, although I think I should call the doctor, I won't until I have opportunity to understand it. I hate when stuff like this happens, because when they don't bring up a test that is not normal, I wonder if they missed it. It should be a rule -- if a test is abnormal, it should be addressed thoroughly with the patient.

Kim:

That is a very scary thought - a doctor who is so enthralled with transplant success that he wouldn't listen to a patient in possible relapse? Is he ignoring your Anti-Sm?

Try not to worry about the protein - easier said than done. I once had a strange thing come back in my urine and my neurologist scared the bejabers out of me, told me to call my rheumatologist right away because it was very abnormal. Well I did call the Rheumatologist and she looked at the lab and said it meant absolutely nothing. I forget what it was now.

Anyway, I do agree with you that the doctor should have definitely gone over the lab and if I were you, I'd call him about it.

As for the Lyrica...I am having so many issues right now that I can't sort them. As I said, my neck is acting up horribly and that causes brain fog, plus I think my BP is up and I am not sure if that is contributing to the dizziness and disorientation. Don't write Lyrica off yet. I do know that since I started it, I have been sleeping in more and it does cause sleepiness. When I take it at night, I am out! I also can't stand the thought of another pill and if I need BP meds, that will put me over the edge. I am so fed up with side effects. I don't know anyone that manages to work a tedious office job on meds like me (besides Nate, but he must be Superman). I could honestly sit and stare all day if I'd let myself. Maybe it's the stress of the job that forces me to stay awake. I don't know.

When you find out about the protein, let me know.

I don't think the transplant doctor is the right person anymore. Maybe back a few years, post transplant, but now he just seems more interested in his next transplant patient and considers me a success for his next research paper.

I have no idea if he looked at the labs, but the nurse always just drops them in the mail to me and generally I get them done at NW, so they don't always have all the results when I see the doctor. Of course the only thing I asked about was my platelets, which were down 100k, from 250 to 140's back in Feb, so I was really wondering where they were. I was not too concerned, but with a 100k drop, after months in the 250's, I was alerted to the change. Platelets are good, at 246, so I never asked about anything else.

Regarding the lupus tests....another story there. I had tests run here and sent to NW, but there were some tests run at NW. When I went to NW, they said the lupus tests never arrived. Upon review of what was run here, I realized the nurse didn't even put the lupus tests on the script, so I think I assumed the labs would be run at NW. The only thing they collected at NW were the research tubes, but since I didn't have the script with me, I didn't know that the lupus tests were left off from the local labs. We all assumed they were just lagging behind. The nurse sent me the other labs and she called to remind me to ask about lupus tests, that's when I pulled the script and told her she did't order them from my local lab and since NW didn't do them either, seems they were not done. You'd think she would keep a copy of what she ordered from local labs and what was ordered at NW, but apparently not. She completely forgot to order the lupus labs, so she emailed me a script to get them done, but I have not had them done. So, with this over sight and no one actually looking at the 24 hour urine collection and see the high protein, I don't think follow up with them makes any sense. She's not the nurse I had during transplant and I don't think as good at the one I had during transplant and for the first year post transplant follow up. The other nurse would make a point to go over labs with me and she related better with the transplant doctor, pointing out what labs were and she would really interview me and relate that back to the doctor. I wonder if he's still working on the notion that the nurse will point these things out and then they would be addressed. I really miss the other nurse, because she would never have just dropped results in the mail, without good follow up.

I've got to go get the lupus tests, but I think I'd rather just have it ordered from my current treating rheumatologist, so I'm sure he gets results. If it's ordered from doctor at NW, my rheumatlogis won't get it unless I get it from NW and give it to him. I tried to get the lab results before I went to NW, but the lab said it was sent out and the results sent directly to NW and they didn't have them. I didn't want to push, because I had all the tests done at the same hospital Jim works at, so I don't want to be a huge pest. I figured I'd just wait until I see the doctor and get the results then. They also said it wouldn't go to my local treating doctors, since it was ordered by a NW doctor. I had initially pushed to get the tests done locally, because I figured all my local treating doctors would have easy access to them, but that was not the case, so it's just made it harder on me to get all the results. Crazy... But at least I'm in network and it won't cost me more. That was another reason why I wanted them locally.

My protein was 216mg - normal range is 0-140, so I'm clearly out of range, but what is too high and what is borderline, or of no real significance? The other urine protein test was at 12mg and normal is 0-12, so that's smack on borderline high. I think they don't get real concerned unless it's upwards of a gram, but not sure. I have noticed kind of a change in urine. It's kind of foamy and I know that's a sign of protein. I did notice that before the 24 hour urine test, but I guess I was just pretending it was nothing and I'd find out soon enough, but when nothing was said, I guess I just forgot. I was so focused on the dam hives and those symptoms which were making me nuts and I started on all those new drugs, so I didn't know if that has anything to do with it. .

I am so sick and tired of this crap... really I just want to pretend it's no big deal, but then there's that nagging in my brain.

Well it would be really upsetting if you had a protein problem that was missed/ignored, whatever! That should not happen. I don't know much about protein levels because I've never had protein in urine, so never researched it.

I know you're sick of it, but make sure you follow up!

I'll follow up. I'm just coasting a bit, because I finally got relief from the rash and then this pops up. It's one thing after another, without a break and this I never expected, because I never had protein problems before either. Just a trace here and there on dip stick. When that happened doctor always ordered a follow up 24 hour collection and it would be fine. I was happy the doctor always followed up, even though I hated the 24 hour collection process. I almost blew it off this time, because it was for NW research, although they knew I never had protein or kidney problems with my lupus, so I always wondered why they bothered with the test. I never expected it to show protein. I guess they didn't either, because they didn't say anything about it. I'll email the nurse and point it out and ask her. I'll also send a copy to my local doctor and follow up with him.

You know what bothers me about all of this? Not just the fact that you are having so many problems post-transplant, but the fact that this may possibly go down in the books as transplant success when it is not 100% success. Yes, you have had a reprieve in many symptoms, but the saga continues. If this is how statistics are perceived, it's no wonder splenectomy success is quoted so high. Well, I've always thought the data was skewed, but I can easily see how it is 'misinterpreted' or the follow-up was not long enough.

Granted, you needed the transplant. You were in a very bad place and would be much worse than you are now without it. You were at the last resort. But how many people go into it with false hopes because the statistics seem so good? Sorry, Kim. I am mad FOR you and WITH you.

Today I decided to quit Lyrica. I saw the PM specialist this morning and she has other ideas that don't involve drugs with side effects. I am beginning to love her....she just keeps trying and suggesting things for me.

I am going to have Trigger Point Injections and get a TENS. The Cervical Spine Injection I had didn't do diddly squat, but maybe this will since it's injected into the muscle and that is where my problems lie, both the myalgia and neck problems.

I decided I've had enough of Lyrica because the side effects are cumulative and getting worse. My brain feels like mush and it's taking every bit of energy I have to even remember my own name. I am so dizzy I'm spinning, and feel disoriented. At the end of the work day today, I started to feel panicked because I just felt so out of it and uncoordinated. I had a panic attack in the car on the way home and called my husband in CA just to hear the sound of a voice to ground me during the drive. This isn't me at all. So good-bye Lyrica and thanks for the great first day and a few other good days. This is not for me. Sorry, Kim, but at least I was your guinea pig and you don't have to go through it.

Oh Sandi, I'm sad for you and happy at the same time! Sad that it didn't work out the way you wanted, but happy that you gave it a try and learned from it! I'll be praying the new stuff works well for you. And you know....keep up updated! LOL, like you wouldn't!

Thanks, Gretchen. I can't say I'm not disappointed in it, but at least I have an alternate plan to try.

Getting off of Lyrica has been a nightmare. I told my husband to call Dr. Kevorkian.

lol....wait...that's not funny! But really, I'm sorry it's so hard. Bad side effects coming of it? Will it last long? Oh boy....It will eventually get better, I promise!