Savella for Peripheral Neuropathy?

I tried every different medication out the from Gabapentins to Cymbalta etc & all of those affected me terribly where my head was in one spot & my body was halfway across the room somewhere or I was having terrible dreams & having fits of anger at people. The Gabapentin had me so off balance I fell & broke my hip. I then started out on Topiramate which helped with the electric shock feeling of neuropathy a bit but not near enough. I asked to try something else, anything so Savella came next, didn't seem to do much @ 25mg 2x a day so I experimented with 50mg 2x a day, spoke to my doc about further experimenting, it was okayed, so now I'm up to 300mg per day, 100mg 3x a day. This dose has helped allot in reducing the burning sensations, the electric shock sensations. They are still there tho, just not near as bad & some days it's still hard to get them to a tolerable level where I can comfortably stand or walk around & accomplish some household chores etc. Most days I've been just unable to do much or even leave my house cause of the pain & numbness, now I'm not having to 'force' myself to do things so much. It does nothing for the numbness tho. Hope this helps anyone considering Savella, that likely you need to reach the higher does levels in order to achieve any relief results, please keep trying it. I've not yet experienced any side effects. I feel I could go up more in doseage but will wait to meet with my neurologist or msg her before I do on my own.

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Hello @blt054, Welcome to Connect. Thanks for sharing what helps you. There are a few other discussions you might also find helpful.

-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Are you able to share a little more about your neuropathy diagnosis?

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Hi, thank you for the info! Well, allot is still up in the air sort of. I also have Hep C which may or may not be a contributing factor. Also, Mayo thru blood samples submitted by one nuerologist determined that I have a blood disorder called Cryglobulemia. It has something to do with when my body temp falls below a certain level it causes the platlettes to gather together instead of staying spread out like normal. I don't really understand it well, I just know I get cold very easy & have to be careful of hands & feet not being able to feel them well. Even hot things, I've burned my hands on hot coffee mugs, hot pans, as well sitting for long periods of time my feet get overly cold & I don't realize how cold they really are. I'm proceeding soon with a treatment program for the Hep C. I'm 67, I have scoliosis, allot of degenerative spinal issues. Have had lower lumbar surgery in which the bone canals going down into the legs were drilled out to widen to make more room for the nerves & I think at least 1 vertabrae was taken out. Since that surgery I did have a fall breaking my right hip, thanks to the medications messing my balance up so bad. I've not been given a clear diagnosis. I also have problems with my cervical (neck) spinal area & have had injections to relieve numbness/tingling there, although it has gotten worse down both arms & I sometimes feel it in my face & across my lips/cheeks. I'm scheduled to see Dr. Lawson Neurologist @ Dartmouth Hitchcock Lebanon, N.H. in Oct starting out with EMG studies & moving on from there. In my area doctor appt's are very hard to get, booked out many months in advance. I don't know how or if the Cryglobulemia plays a part in Neuropathy or not. I suppose it's something each person would need to bring up to their own doctor & ask to have their blood tested for. It would be interesting to know how many have the same?

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I tried every different medication out the from Gabapentins to Cymbalta etc & all of those affected me terribly where my head was in one spot & my body was halfway across the room somewhere or I was having terrible dreams & having fits of anger at people. The Gabapentin had me so off balance I fell & broke my hip. I then started out on Topiramate which helped with the electric shock feeling of neuropathy a bit but not near enough. I asked to try something else, anything so Savella came next, didn't seem to do much @ 25mg 2x a day so I experimented with 50mg 2x a day, spoke to my doc about further experimenting, it was okayed, so now I'm up to 300mg per day, 100mg 3x a day. This dose has helped allot in reducing the burning sensations, the electric shock sensations. They are still there tho, just not near as bad & some days it's still hard to get them to a tolerable level where I can comfortably stand or walk around & accomplish some household chores etc. Most days I've been just unable to do much or even leave my house cause of the pain & numbness, now I'm not having to 'force' myself to do things so much. It does nothing for the numbness tho. Hope this helps anyone considering Savella, that likely you need to reach the higher does levels in order to achieve any relief results, please keep trying it. I've not yet experienced any side effects. I feel I could go up more in doseage but will wait to meet with my neurologist or msg her before I do on my own.

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@blt054 My neurologist prescribed Savella to me because of my intense pain that was just sciatica at first but now is affecting most of my body. Luckily I red the contraindications. With 2 medications I was currently taking taking Savella could cause immediate blindness without any signs or symptoms. I called the Neurologists office and at first they disagreed with me. I persisted and they finally said "stop taking immediately" but no reason given. Luckily I had read about the possible effects first. I have an unrelated question. Why do I have to keep updating my medications in whatever Epic portal my provider is using if they are not going to check for contraindications? At this point every part of my body is in pain.

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@blt054 My neurologist prescribed Savella to me because of my intense pain that was just sciatica at first but now is affecting most of my body. Luckily I red the contraindications. With 2 medications I was currently taking taking Savella could cause immediate blindness without any signs or symptoms. I called the Neurologists office and at first they disagreed with me. I persisted and they finally said "stop taking immediately" but no reason given. Luckily I had read about the possible effects first. I have an unrelated question. Why do I have to keep updating my medications in whatever Epic portal my provider is using if they are not going to check for contraindications? At this point every part of my body is in pain.

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I have found doctors do not check. Drugs.com is my go to checker. And, then I speak with my pharmacist prior to taking anything. They know my medications, as I only get them filled in the one location. And, they know the interactions. I have to take several of mine in specific time intervals, with nothing else but water. So, I also discuss how to add any new meds, supplements, etc

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@athenalee Wow, so scary. But thanks for the advice. I will use Drugs.com. My Walgreens Pharmacy Manager is awesome but he is so swamped and understaffed now with having to give vaccines, too, I only bother him if I absolutely need to.

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Well, don’t be hesitant if you need them. They know it’s a vital role of their jobs. I’ve had two providers recommend drugs that interact with my immunosuppressive meds. One was an endocrinologist, prescribing a med for osteoporosis. I looked it up and refused to take it because it would interact in a moderate way by compounding the impacts of my meds on my kidneys…quote, “it’s okay because your kidney functions are fine.” Absolutely nonsensical since I have to be on these meds for the rest of my life!

The other was a rheumatologist PA who recommended a med that could have a major interaction by causing one of my immunosuppressive meds to rise in my bloodstream substantially. The goal is to regulate these drugs at a constant level in one’s system. Which I pointed out to him and he argued that I’d adjust. Then he said that the two immunosuppressive meds I take interact and compound their effectiveness. Yup, that would be the point!
Needless to say I no longer see him.

Stay positive and safe!

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