What next? Gabapentin side effects

[Diogee707]

My husband is currently taking 1500 mg of Gabapentin for his RLS, after previously being prescribed Ropinerole and successfully discontinuing that after augmentation. His Gabapentin regime is 300 mg at 6:30 pm, followed by 600 mg at 8 and 10 pm. He also takes 2.5 mg of Zolpidem when he goes to bed around 11 pm, and this helps him sleep through the night. His RLS symptoms very rarely surface, and when they do, they are minor.

He was taken to the ER yesterday, suffering from alternating hot and cold flashes, severe sweating and shivering, although he was not running a fever. His temperature was slightly elevated above his normal 97 degrees F, but did not exceed “normal” 98.6 F. He also had moderate discomfort (not technically “pain”) in his left groin/abdomen. He experiences the usual Gabapentin-related tiredness and dizziness during the day, and has been stating for a couple of weeks now that he cannot continue feeling like this.

The diagnostics done by the ER doc ruled out many potential causes of his abdominal discomfort and hot and cold flashes, and we are questioning whether the Gabapentin could be causing these side effects. The doctor is suggesting tapering down Gabapentin to see if the symptoms subside. If so, it may be necessary to switch to another RLS treatment. My question is, what options are viable at this point?

We appreciate this community and would be grateful for your suggestions.

[Madlegs1]

Horizant is a form of gabapentin, but is more efficiently absorbed by the gut ,which means you can take much smaller doses.It will depend on whether your Medicare will allow it.

Otherwise Lyrica is another option to ask about. Again expensive, so same factor is in play.

Worth checking those two out, before looking for the opioid route.-- methadone or oxycodone variations.

Good luck.

[Diogee707 in reply to Madlegs1]

Thank you for the suggestions, Madlegs1 . Time for more research.

When I last looked up Horizant, it was not a covered med in our Medicare plan. I recall it being impossibly expensive, but I will take another look as well as researching Lyrica.

Thank you again.

[SueJohnson]

None of the symptoms described are known side effects of gabapentin, but he can certainly try reducing the dose, although even if they go away it may be coincidence. Yes Horizant is very expensive and is not covered under the most if not all medicare Part D insurances. And the savings card from Horizant is not available if he is over 65. Lyrica (pregabalin) however is usually covered and although they are basically the same drug as gabapentin except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose. In your husband's case that would be 250 mg. Is he taking any other medications or over the counter supplements? If you list them here I can tell you whether any of them make his RLS worse and perhaps provide a safe substitute. Also, has he had his ferritin checked?

[Diogee707 in reply to SueJohnson]

Thanks for your reply, SueJohnson . We have been considering pregabalin, and it is interesting to learn that the side effects of that may vary from those of gabapentin for the same individual. (I suppose that is a double-edged sword.) It is good that he has a neurologist who is open to discussing treatment alternatives and letting my husband make the call as to which he wishes to pursue. (Although the doctor started him out with Ropinerole before we learned about augmentation here, so we gather he was not aware of the latest guidance from Mayo when first consulted.)

Ferritin was checked last October, and was 120 ng/mL at that time. I’ve read here that we want it to be over 100, so I gather that his level is good, assuming I am making an apples-to-apples comparison.

In addition to the gabapentin and zolpidem, he takes atorvastatin and fenofibrate daily. He takes acyclovir rarely, on an as-needed basis. He was previously treated for high blood pressure but is currently controlling it through diet and lifestyle changes. He tried both amlodipine and losartin but both made him feel miserable.

He takes a variety of supplements, including lipo flavenoid for tinnitus, Occuvite for eye health, type II collagen for joint health, and biotin for skin/nail health. He also takes over the counter decongestants (Sudafed), antihistamines (Benadryl), acetaminophen and/or ibuprofen as needed.

I’d appreciate any feedback you have on those meds and supplements.

Thank you for your time and support. I (we) appreciate it so much.

[Dotmowatee in reply to Diogee707]

Benadryl is known to make rls worse, possibly Sudafed too.

[Diogee707 in reply to Dotmowatee]

Dotmowatee , thank you for sharing that. The doctor has recommended against Benadryl for seniors as well. The RLS impact is another motivator to switch to an “all-day” antihistamine instead.

[SueJohnson in reply to Diogee707]

Unfortunately atorvastatin makes RLS worse but there is no safe substitute. As Dotmowatee mentioned Benadryl is known to make RLS worse. The others are all OK.

[Diogee707 in reply to SueJohnson]

Thank you, Sue. I’m relieved to know that.

[DataRN]

Hi Diogee707 I had similar side effects from taking Gabapentin. In fact, my side effects were so severe I now list it as a drug allergy because my doctor felt I should steer clear from it. My doctor told me that Gabapentin can cause those side effects for some people. I switched to Lyrica which was very expensive at that time. However, generic Pregabalin is now available and is much more affordable. I hope you find some relief!

[Diogee707 in reply to DataRN]

Hi DataRN , I am sorry to hear of your horrid experience with Gabapentin, and glad to know you are not having such side effects from Pregabalin.

Would you be able to share how you transitioned from Gabapentin to Pregabalin? Was there a ramp down/ramp up period required, or were you able to make the switch “immediately” once you were prescribed Lyrica?

[DataRN in reply to Diogee707]

You will want to start with a lower dose of Pregabalin and incrementally increase your dose until you get relief. Of course, it all depends on how your physician prescribes it. My physician is a RLS specialist. He had me start with Pregabalin 100mg in the evening and increase by 100mg up to a possible dose of 600mg. There was no need for me to wean off Gabapentin when going directly to Pregabalin. Again, consult your doctor on the correct dosing for you. Good luck to you!!

[Diogee707 in reply to DataRN]

Thank you, DataRN. The doctor has prescribed 75 mg of Pregabalin 2x/daily (150 mg). Based on an earlier message from SueJohnson , I understand an equivalent dose to 1500 mg Gabapentin would be 250 mg Pregabalin (1500/6). Since the doctor prescribed 75 mg capsules, we will likely start with 225 mg Pregabalin (75 x 3) and hope that that controls the RLS (and hope for less onerous side effects as well).

[SueJohnson in reply to Diogee707]

You can make the switch directly. I did and my doctor said I could do so. In fact I switch back and forth depending on whether it would be inconvenient to take it in divided doses. I take 1500 mg.

[Diogee707 in reply to SueJohnson]

Thank you, Sue. It is interesting to know that you can switch back and forth between the two. It feels like we have a lifetime supply of 300 mg Gabapentin capsules, so they may not need to go to waste.

The doctor prescribed “75 mg Pregabalin twice a day.” As I mentioned in my response to DataRN, we know this falls short of the Gabapentin dose that my husband is currently taking, so he will start with 3 x 75 mg capsules when the prescription is ready on Monday. I gather from your comment about divided doses (for Gabapentin) that the Pregabalin can be taken at one time. If he is taking Gabapentin at 6:30 pm (300 mg), 8 pm (600) and 10 pm (600), could you suggest based on your experience when he might want to take the Pregabalin?

[SueJohnson in reply to Diogee707]

He can take them all at 10:00 pm.

[Diogee707 in reply to SueJohnson]

Thanks!

[Diogee707 in reply to SueJohnson]

SueJohnson , one more question if I may. The neurologist recommended that my husband ramp down on Gabapentin before starting Pregabalin. I recognize from your comments and others' that he should be able to simply switch from one to the other. My question is, would taking "half" Gabapentin and "half" Pregabalin on a single day make any sense? I would think not, but I hate to see him reducing Gabapentin below the level he needs to manage his RLS as an interim step towards switching to Pregabalin. We're trying to tread the fine line between using the good information we've learned here, and respecting the doctor's direction.

[SueJohnson in reply to Diogee707]

He could do that.

[Diogee707 in reply to SueJohnson]

Thank you!

[Hidden]

I take oxycodone naloxone which you can get slow release tablets which lasts 12 hrs as this is an opiate your doctor moght not give it to you but it has been my life saver

[Diogee707 in reply to Hidden]

Thanks, Hidden . Will discuss this with the neurologist at our next appointment. I appreciate your input.

[KickininAz]

My doctor took me off of gabapentin. I'm 71 years old. He said older people may experience more side effects, especially dizziness and thus increase the risk of falling. Gabapentin is great for some people but not for everyone.

[Diogee707 in reply to KickininAz]

Thanks, KickininAz . Appreciate your experience and perspective.

[SueJohnson in reply to KickininAz]

I'm 81 and have no side effects that really bother me. I take 1500 mg and it has been great at completely controlling my RLS. Everyone is different and it depends on what side effects you get. Were you having problems with dizziness? If not, I would suggest you take it again if it controlled your RLS. If you do develop dizziness, you can always come off it, although do so slowly to avoid withdrawal symptoms. Have you had a bone density test? That would tell you if there was a risk of breaking a hip if you fell.

[KickininAz]

I had mild dizziness but unfortunately the gabapentin did not help control the RLS symptoms and lead to severe insomnia. At first the gabapentin worked well and helped me sleep. But over time my symptoms came back and insomnia set in. Despite going up to 1800 mg in divided doses it didn't help me. It worked for about 6 months, then stopped working.

[grassgree in reply to KickininAz]

Did you have insomnia before taking gabapentin? Insomnia is a known result of withdrawal from it, but I didn't know that it could eventually cause it.