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  • #1

    Savella, Fibro, and IC...

    Hey... I am in so much pain right now and I haven't been able to sleep well for about two weeks now( about two hours of sleep a day). Cymbalta and Lyrica both failed to help me and made me feel high as a kite, so my pain management specialist put me on savella. The side effects are pretty bad.. They had me do a blister pack that started me at 12.5 on day one and two, and then by the end of the week it had me at 200 a day...

    I don't know if anyone else has had success with this drug but I am having sweating spells with cold chills, severe abdominal pain, nausea, and I can't make myself sleep. I am also having more trouble going to the bathroom than normal; while the frequency and urges are still there - the spasms are so bad that I have to sit on the toilet for half an hour before the muscles will even consider relaxing. I felt more ill with each dosage increase, and frankly... this medicine is making me so sick that I can't even tell if it is helping my fibro or not. I aslo asked about massage therapy, because it helped me before, but no one takes me seriously.
    I am at my wit's end and could really use some support right now. My doctor looked at me as if I was just being difficult when the cymbalta didn't work.. and he warned me that savella was my last option. It was my birthday over the weekend, and it was miserable. My urologist didn't refill my Elmiron, the Savella kept me up as always, and I had to cancel all my plans for the week since I can't make the pain or the nausea tolerable.
    I am feeling very alone and I don't know anyone locally who is going through what I am. I pray that everyone is sleeping well and having flare free days and nights. I just wish there was an answer or a cure for us.

    I'm not a quitter and I will not give up the fight, and I am not someone who complains much at all. But it is like they say... just because people may not see our pain - it doesn't mean it isn't there. And right now... even though I smile around my family or pretend everything is fine while I tell my friends I am too busy to see them... I want to scream and cry and just collaspe within the support of those who understand.

    My IC isn't getting better, my fibro isn't being relieved, and my life is sitting before me in a pile of pieces that I frankly do not have the energy or the strength to piece back together into anything remotely normal.

    Any suggestions as to what may help me get through the side effects?
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  • #2
    Did you have the symptoms on the first days at the lower dosage. If not, I suggest you talk with your doctor about backing off to that dose.

    Donna
    Stay safe


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    • #3
      I agree with Donna. I think you should go back to the lowest dose and hang out there for awhile until you feel the symptoms start to subside. It's known that people with fibromyalgia are often much more sensitive to medications than others. This means you might not be able to tolerate a medication at the higher dosage ever but the good news is that you might benefit from staying at just a lower dose. Don't suffer another minute. Call your care provider TODAY. I had a similar experience when starting on Zoloft. I called my dr. on a Sunday and told him how badly I was suffering and he said just stop the medication. However now I'm pretty sure it was just the fact that he started me on way too high of a dose. I've tried several different antidepressants and most give me the exact same side effects you describe. If you are able to cut the lowest dose pill in half or even quarters than it will be a lot more tolerable. Just check with your pharmacist. If the tablet is scored you should be able to at least cut it in half. This is how I have always started any drug. Some of my drs look at me like I'm crazy when I tell them I do this and they think there is no way you can be feelng anything from such a small dose but like I said I am very sensitive to medication in small amounts. I hope you feel better soon. That's no way to spend your birthday!
      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

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      • #4
        Thanks

        I had the symtpoms when I began the medicine, however I wasn't on the 12.5 dosage for more than a day or so. I am going to call my doctor tomorrow and ask for a change in dosage and I hope it works.

        Charisse, did any of the lower dosage antidepressants work for you? They have only tried me on Elavil and Cymbalta, and neither have worked for me.

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        • #5
          The only one I was ever able to take was Serzone and I'm pretty sure it's not on the market anymore because of liver concerns. I took a 1/4 of the lowest dose tablet twice a day. I had nightmares from it for the first week and other than that no side effects. FYI it was prescribed for anxiety.. not IC or fibro as I didn't have either at the time.
          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

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          • #6
            try again at lower dossage

            I have a friend on savella and she needed to go much slower than you did. In fact she stayed at 12.5 for a couple of weeks before making any change and then it was just a little bit. You can read reviews for savella on Drugs.com and most every one says that you need to go slowly to avoid the side effects. One other thing mentioned was if you were coming off a drug in order to use this one you may have had withdrawal from the previous drug. One side effect that several mentioned to be annoying was sweating inappropriately durinig different times of the day. I am going to try savella myself to see if it will help with the nerve pain that I have from pudendal nerve damage. I am going to go to see my pain doctor next week and I will ask for a prescription for this medication and then I will post here as to how I am doing. Gram

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            • #7
              I have fibromyalgia and cannot afford lyrica or savella. My PCP manages my IC and fibro and she told me she would not prescribe me either due to the bad side effects, etc.

              I take nuerontin/gabapentin. I would ask about that.

              Also, what alot of people that suffer from FMS find that helps them is:

              light exercise, eating right, cutting out the sugar, getting plenty of sleep, acupuncture, massage, water therapy...

              You will have to realize that there is no magic pill but it can be manageble with the right treatment.

              go to www.webmd.com and sign up for their newsletter or the national fibromyalgia association. those are both great.

              Goodluck.
              -Cassie

              21 year old female. Diagnosed as of November 2008 with onset of symptoms.

              I am currently diagnosed with IC, PFD, endometriosis, asthma, and vulvodynia/contact dermititis, IBS, and fibromyalgia.

              Medications:

              IC:
              -Amitryptyline 10 mg

              Fibromyalgia:
              -Neurontin (in place of lyrica because I can't afford it- lol) 300 mg x3 a day
              Flexeril. 10 mg. As needed.
              -
              Endometriosis:
              -Microgestrin.
              First laparoscopy showed moderate to severe endo

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              • #8
                call your doctor today or the hospital and explain to them what is going on they may be able to help you god bless you.
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                • #9
                  Savella, Neurontin, IC &amp; Fibro

                  Originally posted by Cassaundra View Post
                  I have fibromyalgia ... I take nuerontin/gabapentin. I would ask about that.

                  Also, what a lot of people that suffer from FMS find that helps them is:

                  light exercise, eating right, cutting out the sugar, getting plenty of sleep, acupuncture, massage, water therapy...

                  Goodluck.
                  Hi all, just found this wonderful group! Quickly about me - I'm 52 y/o, have had Migraines & IBS all my life, IC probably 25 years, Fibro for 7 - forced me to stop working 7 years ago I was so bad. I've gotten somewhat better, so here's what helps me:
                  For the migraines, my neuro put me on Elavil (amitryptline) 25mg/night 25 years ago - so when I was diagnosed with IC, in 1995, Uro said it will help with it and raised the dosage to 50mg/night. I hate the dry mouth, but I think it helps. Plus, dr added Neurontin (300mg/night). It was a life saver. Helped me go back to work (after I took a year off to deal). At first I used Baking soda in water to deal with flare ups/pain, (it really helps put out the fire!), but I can't deal with the salt anymore. I use CystaQ and it really helps! I used to take it every day, but I only take it with a flare now. I try to watch my diet and I know when I get a flare up it's from say, the pickle I ate, or too many tomatoes.

                  Anyway, I reason I quoted Cassaundra is b/c of the Neurontin. I used to be on a much higher dose, but found it didn't work any better for me. I've been on this dose for around 15 years, and it works for me. BUT, since I'm over 50, I just had a Bone Scan, and found out I have osteopenia (a possible precursor to Osteoporosis). I did some research, and found out Neurontin (actually all anti-seizure drugs & also steroids) can CAUSE osteoporosis!!! I'm just barely into the osteopenia category, with weakness in my hips, not spine, and my GYN said that 85% of patients never develop osteoporosis, but the other 15% can go downhill rapidly. Rapidly means over years, but why would I take a chance of being in that category? So, I think I'm going to go off of Neurontin, and try Savella. I have a friend on it, and she says it helps her. I want to thank everyone in this support group for saying going on it very slowly helps avoid the side effects, which I think we are all sensitive to. I just wanted everyone to be aware of this particularly nasty side effect of Neurontin. I'm not sure if it also causes dizzyness, (I get severe episodes), but when I go off of it, I'll find out.

                  Also, I agree with Cassaundra that light exercise helps a lot with the Fibro pain, etc. I have been ballroom dancing for 4 years, and it's great for me! I dance 1 or 2x a week, and it really helps. If I overdo it, it stops me cold for a few days, but I'm really much better now than before when I stopped everything. Plus, it helps mentally, I feel so much happier doing something I love, and we've made a lot of friends dancing, and it helps being around people. I have done 2 dancing shows, and sometimes that's really hard - at the end they practice a lot, and sometimes I have to back out of them to rest, but I still highly recommend doing some exercise you love. Plus, dancing is "weight-bearing" - which they recommend to grow bone and prevent osteoporosis.

                  Hope this helps!

                  Hazel

                  Rx: Neurontin 300mg/night
                  Elavil 50mg/night
                  Dexilant (super Prevacid) 60mg/day
                  Xyzal 30mg/day

                  Calcium, Magnesium, Vit D

                  Black Cohosh (for hot flashes) 540mg/day
                  Cysta Q (From Farr Labs for IC) as needed
                  TheraEyes (for dry eyes) daily

                  For Migraines as needed:
                  Hot Chai Tea (from Starbucks) with SOY Milk - really helps, even though they're too sweet.

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                  • #10
                    Re: Savella, Fibro, and IC...

                    Cassie is gabapentin like Lyrica? I take Lyrica and Meloxicam for my fibro
                    Thanks
                    Ruth
                    Blessings,
                    Ruth

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