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Thread: Pregabalin?

  1. #16
    ICN Member Charisse's Avatar
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    I would try to get in sooner as well. And also it might take time to work up in your body. I will tell you from my experience with the Neurontin that I can take the higher dose for 2 or 3 days before the weird leg numbness kicks in. I believe it takes awhile to build up in your body so I would give it some time at a higher dose before giving up if you can. Whatever you do, don't stop it cold turkey! Even if it's not working you should still wean off it or you can have a seizure. As for Neurontin, it is not a stronger version but I believe Lyrica is a more "refined" version of the same drug which would explain why the dosing is so different. I'm not a dr.! So if a nurse or someone with more experience can step in than perhaps they can explain it better. But I think it's like how they took Celexa and improved it in the form of Lexapro. Supposed less of the bad side effects in the newer version in a more potent form. But because everyone's body is different it may be that some of us do better with the older version of these drugs. As for the blurred vision and other side effects.. I would just call your dr. to double check. Or the pharmacist. I can tell you after a week on the higher dose of Neurontin I felt really yuck and strange one day and again it was because it had taken a few days for the higher dose to build up in my body. I went back down to the lower dose the next day for a few days and then went back up again. I think sometimes these side effects are a sign that maybe your increasing your dose too quick. I hate feeling weird like that so maybe ask your dr. about increasing more slowly? IDK.. I'm sorry.. I hate that all these drugs come with so many negatives.
    The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
    First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
    Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
    Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
    Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
    BABY GIRL 10/28/08 *** BABY BOY 7/8/11

  2. #17
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    Lyrica is the drug that works best for my pain and with the least side effects. I did feel very fuzzy headed for the first few days, but once I was used to it I had no real side effects. My consultant did say that it takes about two weeks to fully kick in. It does seem that you've gone to a high dose quite quickly. I'm on 25mg three times a day, which is quite low dose, but with time it did work. As everyone else has said, try to see your doctor asap. I also second not coming straight off Lyrica. Even though I'm only on a low dose, I did find that I was very fuzzy coming off of my low dose of 75 mg a day.

  3. #18
    ICN Member NJB's Avatar
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    Thanks so much everyone for your replies! It's great to be able to get so much advice. With regards to the dosing, I confess I did increase the dose rather quickly, but the reason I did this was because I was in too much pain and I was kind of experimenting to see if increasing it would help more. I was actually happy enough to put up with the side effects since it seemed to be helping so much! It was only when I hit the 300mg level that ALL my pain symptoms were gone. After a day the eyesight problems seemed to vanish too. But so did the therapeutic effects. I suppose increasing the dose even further may have helped but it really didn't seem wise to go up to 600mg!
    I have dropped down to a lower dose again and am going to increase much more slowly now. I was too impatient in my desperation to get rid of the pain.

    Charisse - thanks for explaining the possible difference between Pregabalin and Neurontin.

    Vicky - I'm really glad that Pregabalin is working so well for you! Can I ask how long you have been taking it and what type of pain you specifically had?
    Also, is this a treatment that can be used long term, i.e., for the rest of our life's?
    I will try to see my Pain Doc soon. I hate how they give you a med then say 'come back in 3 months time.' Of course, this is fine if everything goes well, but what do you do when it doesn't? Often GP's are a poor substitute for a consultant, and often they are not able to prescribe the same things a consultant can anyway. Trying to get past the Consultant's pitbull secretary with a major attitude problem is easier said than done.

    Thanks again everyone for your support and encouragement.
    Last edited by NJB; 08-27-2013 at 09:53 PM.

  4. #19
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    Neurontin (gabapentin) made me feel high, so I cared about the pain a little less but that was about it. A pain management dr switched me to lyrica (Pregabalin) - I did not have that high feeling and it REALLY helped with pain...for a while....then not so much and I started to swell a bit and that made some of my other issues worse, plus I was gaining a lot of weight for no reason (could have been the Elavil too though) so I went off it. It worked really well at first though, it was awesome! Wish it could have worked longer.
    Diagnosed with IC 2008 via in office cystoscopy and symptoms

    Current treatments:
    -At home rescue instillations as needed
    - IC diet
    - Meds for IC: Vistaril (I have tried a TON but discontinued all but the Vistaril)

    Other diagnosis - Urethral Syndrome, Vulvodynia, PFD, Pelvic Congestion Syndrome, Pudendal Neuralgia (Clitoral Branch)

    Boston Scientific Spinal Cord Stimulator Implanted July 31, 2013

  5. #20
    ICN Member NJB's Avatar
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    Wow, that is very similar to my experience in some ways. I did feel high from the Pregabalin. I felt seriously stoned after the first pill and the feeling lasted well into the next day. It did relieve my pain for a few days (unlike your experience) but just like what happened to you, it suddenly stopped working. I can't tell you how disappointed I was.
    Please tell me, Mary, how long had you been taking it for before it stopped working?
    I read on the various reliable websites that they don't actually understand exactly how the drug works, so no wonder people have probelms.
    I also read that it is used recreationally too and some people have compared it to ecstasy, although for me it was more like really strong dope I guess, maybe mixed with a little bit of the ecstasy feeling but nowhere near as strong. It did feel pretty damn cool. Just a shame it's not the answer to our bladder problems!!
    It's one weird ass substance!!

  6. #21
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    Pregabalin didn't really make me feel high or like I didn't care anymore, but it did make me feel very fuzzy. I felt like I'd had a couple of glasses of wine after a night of no sleep. Very difficult to concentrate and form coherent sentences! I had the same thing both starting on it and coming off of it. It did take about three weeks for it to really make a difference to my IC.

    I'm not too sure about Lyrica long term, but I think it is okay. I am trying to become drug free (currently on Lyrica, Elavil and low dose antibiotics). But if I can't manage it with diet alone, then my consultant has said I can go back on Lyrica long term. I would refuse Elavil and antibiotic long term due to the side effects. I can deal with it to get me out of a bad flare, but not long term!!!

    Previously I was on Lyrics for four months, came off it to try to go drug free, but after eight months I had a dreadful flare and was put on the trio of drugs to get it under control. I started on them in May and will be on them until October (hopefully).

    My IC problems are mainly pain related (neuropathic pain), which is why I respond so well to the Lyrica. I get generalised aching from my waist to my knees, pressure and tension in my bladder, and it feels like electricity is running through the veins on my inner thighs and like I have grit in my underwear (not sure how else to describe it!). I do get increased frequency and urgency with pain when peeing (razor blades!), but that only comes during flares and is always preceded by the pain. I am dealing with fluctuating levels of pain about 80% of the time, but it is well managed and at cope-able levels with the drugs and diet. I am still hoping to drug free by the end of the year.

    Hugs,
    Victoria

  7. #22
    ICN Member NJB's Avatar
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    Hey Vicky,
    Your symptoms sound absolutely horrendous. I have never heard of anything so bad before. But it's brilliant that you have found a solution. Thanks soooo much for your input and info. I honestly can't tell you how invaluable it is to me at this time. I am in a total quandary. I am also feeling very fuzzy headed and am unable to concentrate. Even typing this reply is taking a lot of effort. I am so relieved to hear that things get better at the 3 week mark, and that these weird symptoms subside. I do actually feel that it is helping with my urgency/frequency, but obviously I can't go about life feeling high and in a fog all the time.
    I think my initial problems were caused by messing about with the dose and going too quickly, as you pointed out in your previous post. It is also meant to be an anti anxiety drug, which really suits me because I suffer from bad anxiety and depression.
    Do you have anxiety too? I Am hoping it will help me with that too, and kill two birds with one stone. Again, it is great to hear from you that your consultant is happy for you to stay on it long term if you need to. Although I hope you don't, since you are aiming to be drug free.
    Thank you so much!!!! Your reply has come at the exact moment I needed it.
    Hugs back!

  8. #23
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    They can be horrendous when I flare, but I am increasingly learning how to control it and keep it to relatively low levels. It is just the flares that can get pretty bad! Still, at least it isn't always

    I do think that pregabalin is a funny drug because the side effects (the fuzzy head) are quite quick to occur but then go away, whereas the pain relief is slow to come but then is very effective. Well, at least for me. I do feel very lucky to have found a drug that works for me. Certainly I'd suggest being very consistent in the dose and building it up slowly, but then also come down in dose slowly. The first time I came off pregabalin I did it too quickly and really struggled with it.

    For the anxiety, I do tend to have relatively high levels of anxiety, both generally and IC related. They have improved a little since being on pregabalin. I'm not too sure whether that is because it helps my anxiety, or whether it is because my pain is less and I can cope better with IC and life.

    Try to keep going on the pregabalin as long as the side effects are tolerable and your doctors are happy with it, and fingers crossed the benefits will start to show soon.

    Victoria

  9. #24
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    Quote Originally Posted by NJB View Post
    I would just like to update my last post. Since posting, the Pregabalin has stopped working. It is now doing nothing for my urethral or jaw pain, regardless of how much I take. I am gutted. I have no idea what to do next. I have found out that it can stop working and that you can develop a tolerance to it, so you have to keep increasing the dose (even though the maximum dose advised is 600mg.)
    I guess I was being silly to get carried away so quickly, thinking it was my miracle wonder drug. I hope my pain doctor can suggest something else but I am not due to see her until November.

    NJB - So sorry to read that your success with this drug was short-lived. I wasn't on Pregabalin but my neurologist prescribed Gabapentin for prevention of my migraines. I did horribly on it. He kept trying to talk me into sticking with it but I'm against any drug that you have to get used to then build a tolerance for. But I know how disappointed you must be. I've tried many things to ease my IC pain but none of them have worked. I have urethra pain as well as bladder pain but sometimes, it's hard to know the difference when they're happening all at once.

    And I agree with Donna...you cannot wait until November!!! I'd give your doctor a call and see if in the meantime he can prescribe something more conventional for pain until you can see him. I hate to say it (because I've always been against prescription drugs that are addicting) but If I didn't have my Ativan (which I take in the evening) I'd go insane. I worried for weeks about the addiction aspect but when you're in pain, that concern tends to fly out the window.

    Let us know how you're getting on, okay?


  10. #25
    ICN Member NJB's Avatar
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    Thanks Vicky,

    So do you intend to take an anti-anxiety med along with the Pregabalin, or will you be increasing the Pregabalin dose instead?

    Thanks! X


    Quote Originally Posted by VictoriaB View Post
    They can be horrendous when I flare, but I am increasingly learning how to control it and keep it to relatively low levels. It is just the flares that can get pretty bad! Still, at least it isn't always

    I do think that pregabalin is a funny drug because the side effects (the fuzzy head) are quite quick to occur but then go away, whereas the pain relief is slow to come but then is very effective. Well, at least for me. I do feel very lucky to have found a drug that works for me. Certainly I'd suggest being very consistent in the dose and building it up slowly, but then also come down in dose slowly. The first time I came off pregabalin I did it too quickly and really struggled with it.

    For the anxiety, I do tend to have relatively high levels of anxiety, both generally and IC related. They have improved a little since being on pregabalin. I'm not too sure whether that is because it helps my anxiety, or whether it is because my pain is less and I can cope better with IC and life.

    Try to keep going on the pregabalin as long as the side effects are tolerable and your doctors are happy with it, and fingers crossed the benefits will start to show soon.

    Victoria

  11. #26
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    I'm just sticking with the pregabalin, and I am managing on a relatively low dose (3 x 25 mg a day). I'm not pain free, but it is within manageable limits and I'm happy with this balance at the moment. Acupuncture also helps a lot, with both my IC and my emotional stability. And I am still determined to be drug free by the end of the year...

  12. #27
    ICN Member NJB's Avatar
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    That's really great news. And you seem to have a really positive attitude towards fighting this and defeating it. I'd like to keep in touch with you through the forum for any advice I might need about the Pregabalin if that's okay? I am now back to the dose I was meant to be taking and going slowly again. Am currently taking 150 mg twice a day. Next week I increase to 220 twice a day. I am also taking Flomaxtra XR once a day.

  13. #28
    ICN Member NJB's Avatar
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    Does anyone happen to know if Pregabalin is a drug which you develop a tolerance to? I have tried to find out but can only find speculation. I have been taking 150mg twice a day as instructed, yesterday and today. I felt the effects all last night, and all day today. But when I took my next dose, I suddenly do not feel anything except a pain in my jaw again which wasn't there before. I just cannot figure this drug out! I'm sure when I increase the dose again I will feel good, but for how long? Once I hit the maximum level, then what? Sorry if I am repeating things I have mentioned before, but I need some clarification.

  14. #29
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    Quote Originally Posted by NJB View Post
    That's really great news. And you seem to have a really positive attitude towards fighting this and defeating it. I'd like to keep in touch with you through the forum for any advice I might need about the Pregabalin if that's okay? I am now back to the dose I was meant to be taking and going slowly again. Am currently taking 150 mg twice a day. Next week I increase to 220 twice a day. I am also taking Flomaxtra XR once a day.
    Happy to keep in touch! I do try to be positive, but some days it is easier than others. I do feel that Pregabalin is a drug of consistency, so slow changes certainly seem better than quick changes. Good luck! x
    Last edited by VictoriaB; 09-01-2013 at 11:39 PM. Reason: Typo!

  15. #30
    ICN Member NJB's Avatar
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    A drug of consistency! That is so good to hear Vicky. I am still taking it and was feeling uncertain as it seemed to hit me so strongly when I first increased the dose, then it started to wear off a bit. I was worried this is a sign of tolerance which you get with addictive drugs. I still feel calmer and I'm pretty sure it's helping my urethra and bladder, but my jaws suddennly a bit sore again. My jaw seems to have become a real problem for me! I hope my Pain doc can suggest something else I can maybe take along with the Pregabalin for my jaw - maybe Botox injections....thanks again for keeping in touch. Yes, you are right. Some days ARE easier than others. At least we all have each other here at the forum.

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