Returning to Gabapentin

[Mulberry100]

After having an appointment with my GP I am about to go back to taking Gabapentin after suffering many side effects on Pregabalin. I switched to Pregabalin as the dose of Gabapentin (1200) I was taking had stopped working and rather than upping the dose, Pregabalin was easier to use as it didn’t need to be separate doses. However, I really have struggled with so many side effects! I am thinking that, before returning to Gabapentin, I need to ask this forum if any of the medications I take are detrimental to It, or for that matter, Pregabalin?

Every morning I take5 mg Solifenacin & 50mgMirabegron (for bladder symptoms); 2.5.mgRamipril (to reduce blood pressure), plus 600mg Fish Oil. In the evening around 9pm I take (currently with250mg Pregabalin), 5mg Rosuvastatin (to reduce Cholesterol ) plus 50mg Tramadol at night. Every other evening I take 40mg Iron Bisglycinate with orange juice. Wow, written down that’s a bit scary- seems such a lot! I am assuming any of the above would affect /or not, either Pregabalin or Gabapentin?

I have recently been in touch with Professor Walker’s clinic because I was considering a private consultation, however, after reading other’s experiences it seems, over the past years, I have tried pretty much all that’s available including, initially, the dreaded Neupro patches.

My recent appointment was with a very kind new GP, who tried very hard to understand what hell RLS is, but I still came away feeling very misunderstood, which is why,once again, I am turning to this amazing forum for help.

Apologies for the very long post.

[SueJohnson]

Rosuvastatin exacerbates RLS as it is a statin. Triglide is not a statin that lowers cholesterol and as far as I can find seems safe for RLS. The others are all OK.

[Mulberry100 in reply to SueJohnson]

Thank you for your quick reply. I will contact my GP to see if it can be changed.

[marsha2306 in reply to SueJohnson]

Hmmm I have been on 20 mg rosuvastatin and it has not made my RLS worse at all.

[SueJohnson in reply to marsha2306]

We are each different and react differently to medicines. You are lucky.

[Pooh78]

I am on pregabalin low dose what side effects did you get and what was the worst for you

[BocaMom]

What are your pregabalin side effects? I’m weaning off it and going through (manageable) withdrawal symptoms. Be aware that can happen.

I stopped rousuvastatin (sp?) myself because I worried it made my RLS worse. I’m taking a natural cholesterol supplement but watching my numbers pretty closely via blood work.

Hoping this takes a turn for the better for you.

[SueJohnson in reply to BocaMom]

If you wean off even more slowly you won't have any withdrawal effects.

[BocaMom in reply to SueJohnson]

Definitely Sue. I was a bit surprised though - doc didn’t say anything about that. This will be one of my first questions on any medication going forward.

Wasn’t on a huge dose (75 mgs) but still annoyed me. And was surprised how bad I felt cutting 25 mgs one week at a time.

[SueJohnson in reply to BocaMom]

Have you had your ferritin checked?

[BocaMom in reply to SueJohnson]

Yes many times (thanks to this group!). I finally nudged it over 100. Unfortunately I took some testosterone and it dropped into the 50s. It seems to drop faster than it goes up unfortunately. I do seem to benefit from higher ferritin #s so I’m building it up again.

[Mulberry100 in reply to BocaMom]

I had many of the side effects but the ones that finally made the decision for me to switch back to Gabapentin were the extreme fatigue and the feeling of being “drunk” and disorientated , coupled with the fact they weren’t working for me! I appreciate that everyone is different and Pregabalin works well for many, but the side effects became unmanageable for me.

[BocaMom in reply to Mulberry100]

I had a lot of daytime fatigue too, even at that lower dose. Plus it didn't seem like it helped RLS that much (perhaps would have to go higher but I don't want to do that until I really have to).

[Mulberry100 in reply to BocaMom]

Hi, you too are clearly not sleeping! I also have a fear of increasing the dose having experienced augmentation with Nupro patches. I have had RLS for 40 years now and it has got progressively worse the older I get. I have come to terms now with the fact that it is going to control the rest of my life, it’s just a case of limiting it the best I can and it would appear Gabapentin is my best option. Maybe, and I so desperately hope, there will be a cure for this hideous disease so that the next generation don’t suffer as we all are now.Take care and stay strong.🙂

[BocaMom in reply to Mulberry100]

You too Mulberry and I’m so sorry for your suffering! Praying things get better for you.

I will continue to advocate for research here in the US. Are you in the UK?

Is there any chance you can try a different opioid?

Keeping you in my thoughts.

[Mulberry100 in reply to BocaMom]

Thank you. Yes I am in the UK. I have asked about changing opioids but come up against a lot of negativity, there seems to be a a reluctance to prescribe any at all. Once settled on Gabapentin again, and if need be, I have enough Tramadol in stock to increase the dose.

[BocaMom in reply to Mulberry100]

It’s the same here in the US. Drives me nuts that the pendulum has swung so far the other way. It’s terribly cruel for people who are truly suffering.

[whitney2044]

We are so alike, Too much FISH oil contributes to dieoreha, Ramipril can react with the Gabapentin and so can statins of the family you are taking, so in a nutshell, one offsets the other, its a minefield. What was your Cholesterol level before Statins, Why are you taking such a high dose of fish oils it can give you the runs. I've experienced a torrid two months with bad reactions from Ramipril, Amolodipine and Pravastatin , I've stopped taking them and its not easy, the nurse has replaced my BP medication to Felodipine and its much much more tolerant, My kidney levels have reduced to 6.5 from 13.Its a very difficult problem we need to keep in touch and share our experiences.

Good luck my friend

[Mulberry100 in reply to whitney2044]

Thanks for your reply. I take what is recommended on the bottle of the fish oil brand I take and have never, in more years than I can remember, had any problems. I’m sorry to hear that you have had problems with the drugs you are taking. I am happy to stick with the advice Sue Johnson has given me, she has been very helpful in the past. I am going to try to control my cholesterol with diet until my next blood test by which time I will know if I need to look into things you and Sue have suggested. As I have said before, I am trying hard to accept that restless legs are my lot, it is horrendous but I know there is little chance of finding a complete cure. To a degree I feel lucky as I have this forum to turn to and understanding GPs, my poor Mother suffered and had no support, even I didn’t understand her suffering then, for which I feel very guilty and sad, and she certainly had no medication. Take care and try to stay strong.

[SueJohnson]

Have you had your ferritin checked?

[Mulberry100 in reply to SueJohnson]

Yes I have, if I remember correctly, it was 145. However,it wasn’t a fasting blood test,which I gather it should have been. I mentioned it to my GP when I spoke to her about going back on Gabapentin and was told it wasn’t necessary??

[SueJohnson in reply to Mulberry100]

Your doctor was wrong. One should stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest.