Health Organization for Pudendal Education

Hi,

I wonder if anyone can comment on long term use of Pregabalin and what risks this exposes one to?

Recently I was encouraged by my doctor to come off Pregabalin to see how well I could cope without it. The answer is not well at all and I have been taking many more Codydramol than I was when using Pregabalin.

Which is worse?! Long term Pregabalin or fairly frequent codydramol? If they are as bad as each other (in different ways) it would be useful to know!

I'm in the UK. Pregabalin costs the NHS a lot, I'm sure this contributes to it being treated cautiously.

Holly x

Hi Holly,

I think it's hard to say because sometimes a drug that has been considered safe for years turns out not to be so safe. https://www.nhs.uk/news/medication/is-l ... e-thought/

Here in the US, acetaminophen was always considered safe until they discovered too much causes liver damage. As far as the opioid in codydramol, I am not aware of serious long term side effects from the codeine other than addiction and tolerance.

Lyrica is a relatively new drug so it's hard to predict if it will eventually be shown to have bad long-term side effects but so far I'm not aware of it having a bad reputation. It does affect some people with short term side effects though.

Violet

Thank you Violet. Obviously quality of life is a factor I need to discuss again with my GP and weigh this up with everything else.

All the best.

Holly x

I am also on Lyrica. She also is wanting me to go off of it to see how I do. She said it's masking the symptoms

I guess my fear would be that if you go off the lyrica and then try to go back on that it might not work as well when you go back on. I've heard of this happening with another patient although it was a different drug called lexapro. Does it completely take away your symptoms? I guess if it does and if PGAD is your only symptom it could be tricky figuring out the root cause. Good luck as you get this figured out.

Violet

She also has me on turmeric, alpha lipoic acid, and coq10 for nerve issues.

Since you have sciatic issues too, maybe it would be a good idea to be evaluated by a manual therapist or pelvic PT to make sure the problem is not mechanical. Have you already had an MRI?

Violet

Violet, I have not had a MRI yet. I have had a pelvic CT and a cystoscopy. All turned out fine. All they found was a phlebolith in left pelvic area. She wants me to go to phycologist for cbt therapy for mild anxiety. not sure how cbt will help. I see my obgyn again in couple weeks and my neurologist in December. I have also noticed lately my foot twitching at night, not sure if related to these issues. I also wanted to say I love this site and all the helpful info and friendly people. Great to know I'm not alone, although I do not wish this on anyone.

Hi Joelle,

I understand your skepticism about cbt therapy for PGAD. I do not think it would have helped me at all because the symptoms were just too overwhelming but if your insurance will pay it might be worth a try at least. I had some foot symptoms in one of my feet due to the piriformis muscle being in spasm and pressing on the sciatic nerve. Once I got the piriformis muscle calmed down those symptoms went away. A good pelvic PT/manual therapist should be able to tell you if you have piriformis muscle involvement.

Violet

Violet, thank you for the reply. I am going to try the cbt therapy. I am currently looking for physical therapist, although all are at least a hour away. I may have to suck it up and make the drive. The Lyrica took away the leg and sciatica issue. I wish my doctor would keep me on the lyrica, but she wants me to go off it. Thank you again for the advice.