[Neoplasm]

I was started on an increasing dose of pregabalin a few weeks ago by a neurologist. I asked him beforehand about any potential side effects. He mentioned that some people get blurred vision. I asked specifically about cognitive inhibition, and he said that yes, that was a possibility. I specifically asked him if I got either of those, or any other side effects, would they go away once I stop the drug? He assured me they would. And, just to be sure, I asked him twice to confirm, so there was no misunderstanding.

After a day or two I began to notice visual problems. Along with significant memory problems and all round cognitive slowing/inhibition. At first I wasn't sure, but as the days went by it was very obvious something was not right. The visual problems are most obvious when reading. My eyes won't focus on what I'm looking at. The text keeps blurring. It's kind of like when you're tired and looking at something, and your eyes relax, lose focus, and are sort of "looking through" the screen/page. But it is also there for distance stuff. And it is CONSTANT. My eyes are constantly straining to see everything. It's like I'm seeing everything with peripheral vision level sight - and seeing my peripheral visual fields with worse than usual acuity. I can still make out text (obviously), but it is a big struggle.

These are so distressing I'm terrified about posting about posting about them here for fear of hearing people bad news. I contacted the neurologist he called me back a few days later (I had to call the sceretary a few times and she said she passed on the message each time) and he told me that what I was experiencing was common and that I should reduce the dose. I said I'd prefer to stop it altogether, and so he said to do that. So I stopped it after a bit over 2 weeks of taking it. He had assured me my eyes and everything would get better. I had a appointment with him about 10 days later. I said when I was there that it still wasn't right, but that I thought that it was maybe a bit better. I feel this may have been hopeful/wishful/expectant thinking on my part, coupled with the fact I hadn't tried reading over the course of those 10 days. He did that H thing in front of my eyes and asked about double vision, and that was the extent of his interest in my eyes. I was distracted because I was also being told that he didn't think there was anything else he could do for me as regards my hands (not that he had been of any help), and that he would just give me a review appointment in 3 months to see how things were then.

Not being satisfied with how things went, I tried phoning his secretary that evening and the next day, to just check what the hell I should do if my eyes don't get better? How long should I wait? All the while crippled with fear because I know damn well there is nothing that can be done other than "just wait a bit longer" or "you'll just have to live with it". I was struggling to cope with the problems with my hands. Took the year out of college, and was close to just complete despair... but was really trying to see if I could try and "keep going". The, over a few days, my eyesight becomes warped! And the memory/cognitive thing (which is so unimaginably distressing that I am literally terrified of someone saying they felt the same thing, and are still not right). I didn't get through to him. I got through to my gp, who advised me to not bother calling the neurologist, but rather to wait one week, and call him (the gp) back, at which point he would have the neurologists letter, and hopefully my eyes would have improved.

My eyes were no better when I rang my gp the following week. And apparently the neurologist didn't even mention my eyes in the letter! Can you believe that?! I now have an appointment to see my gp in two days, and an optician in 3 days. We are now more than 4 weeks post pregabalin (after only about two weeks taking it) and my eyes are no better. What the hell am I going to do!!

I've been avoiding looking the drug up (and posting here) because I don't know what I'm going to do if my eyes don't get better. And my memory/cognition. I am seriously considering deleting this for fear someone will tell me it might not. Which is daft, because I know that most likely I'm stuck like this. It is borderline delusional to think that if it's no better after 4 weeks, that it's going to get better. It also seems probable that the optician won't find anything, as the problem is probably at the brain level, rather than within the eye.

Sorry for the long rambling hysterical post. And please forgive me for not proofreadint it.

[fmichael]

Dear Neoplasm -

I am so sorry to hear what you have been going through. I was only on Lyrica (pregabalin) briefly, but discontinued it for other reasons.

Here is a link to the full U.S. Prescribing Information sheet on the drug, http://www.pfizer.com/files/products/uspi_lyrica.pdf

There is a specific discussion of Ophthalmological Effects at Sec. 5.10 that is essentially focused on your concern, but without any discussion of long term effects:

5.10 Ophthalmological Effects

In controlled studies, a higher proportion of patients treated with LYRICA reported blurred vision (7%) than did patients treated with placebo (2%), which resolved in a majority of cases with continued dosing. Less than 1% of patients discontinued LYRICA treatment due to vision related events (primarily blurred vision).

Prospectively planned ophthalmologic testing, including visual acuity testing, formal visual field testing and dilated funduscopic examination, was performed in over 3600 patients. In these patients, visual acuity was reduced in 7% of patients treated with LYRICA, and 5% of placebotreated patients. Visual field changes were detected in 13% of LYRICA-treated, and 12% of placebo-treated patients. Funduscopic changes were observed in 2% of LYRICA-treated and 2% of placebo-treated patients.

Although the clinical significance of the ophthalmologic findings is unknown, inform patients to notify their physician if changes in vision occur. If visual disturbance persists, consider further assessment. Consider more frequent assessment for patients who are already routinely monitored for ocular conditions [see Patient Counseling Information (17.8)].

And this is all that Sec. 17.8 has to say:

17.8 Ophthalmological Effects

Counsel patients that LYRICA may cause visual disturbances. Inform patients that if changes in vision occur, they should notify their physician [see Warnings and Precautions (5.10)].

The most interesting information probably appears in Sec. 6.1 (Adverse Reactions - Clinical Trials Experience) which shows a pattern of dose-dependent reaction among patients with four separate conditions, in each case showing the highest rate of blurry vision (or amblyopia) at the highest recommended dose of 600 mg./day:

Neuropathic Pain Associated with Diabetic Peripheral Neuropathy: 6%
Neuropathic Pain Associated with Postherpetic Neuralgia: 9%
"adjunctive therapy for adult patients with partial onset seizures": 12%
Fibromyalgia: 12%

The good news may be that a quick PubMed search doesn't pick any abstracts pertaining to long-term ophthalmologic effects. However, if your symptoms persist, you might want to consider getting a referral to a Neuro-Ophthalmologist, many of whom work out of medical schools.

Mike

[Lisa in Ohio]

Thanks to both of you. I just started Lyrica about two weeks ago, and was not aware of any visual side effects. I thought that I just maybe all of the sudden needed new glasses!! Everything is just blurry. I will really watch out for this if more of it happens. I am normally fuzzy headed anyhow, so I don't notice any changes with that. Neo, I hope you get better soon, and Mike thanks for all of the good research as usual. Lisa

[cindi1965]

So sorry to hear about the Lyrica side effects...it was the absolute worst for drug for me..it caused me to hallucinate and have blurred vision...everyone has to figure out their own personal "cocktail" with this crazy disorder.
Hope you find the right one soon

[Jimking]

Originally Posted by cindi1965

So sorry to hear about the Lyrica side effects...it was the absolute worst for drug for me..it caused me to hallucinate and have blurred vision...everyone has to figure out their own personal "cocktail" with this crazy disorder.
Hope you find the right one soon

Doctors have been trying to force Lyrica on my wife for years. She tried it once and did not like it what so ever. In her records doctors have an attitude about this. Someone please correct me if I'm wrong on this---There was a doctor who performed research on certain drugs and forged the results to get these drugs on the market. This doctor had his license revoked but the drugs still stayed on the market. This took place about 1.5--2 years ago and I think Lyrica was one of those drugs. Anyone recall this?

[Jimking]

I did a search and here it is.

http://bintalshamsa.blogspot.com/200...ebrex-and.html

http://www.anesthesiologynews.com/in...ticle_id=12634

And he pled guilty.

[ALASKA MIKE]

cymbalta, lyrica, neurontin, and topomax all screw up the brain pretty bad. i had many er visits due to these meds.

it took me over2 years before my eyes returned to 90%.i dont think i will ever get 100% due to the crps2 or maybe its from the meds. either way, you just have to be patient now and dont try any of the above as your dr. will probably suggest.

mike

[smae]

I don't think it's fair to tell people not to try those medicines.. I tried lyrica, neurontin, and topamax... and while they didn't give me any relief, I only had side effects from the lyrica--but they weren't any permanent side effects to my eyes. As soon as I went off the lyrica, the side effects went away.

What happens to one person on a medicine won't necessarily happen to another person--and one of those medicines may end up giving someone all the relief they need with no added side effects.

[fmichael]

Originally Posted by Sarah Mae

I don't think it's fair to tell people not to try those medicines.. I tried lyrica, neurontin, and topamax... and while they didn't give me any relief, I only had side effects from the lyrica--but they weren't any permanent side effects to my eyes. As soon as I went off the lyrica, the side effects went away.

What happens to one person on a medicine won't necessarily happen to another person--and one of those medicines may end up giving someone all the relief they need with no added side effects.

Fair enough. The drugs people should be warned away from AT ALL COSTS are those which leave irreversible side effects in a significant number of patients, or will, by and of themselves, exacerbate CRPS - for purposes of this forum - in anyone, such as the vasoconstrictor Sudafed (Pseudoephedrine).

That said, I think we have an absolute duty to clue people in on potential side effects. First, because they often won't hear them in any but the most general terms from their doctors, and secondly, to provide a sense of context thould they arise, e.g., so someone knows that his/her body/mind isn't going out of control (yet again) in some strange and bizarre fashion.

Mike

[smae]

Originally Posted by fmichael

Fair enough. The drugs people should be warned away from AT ALL COSTS are those which leave irreversible side effects in a significant number of patients, or will, by and of themselves, exacerbate CRPS - for purposes of this forum - in anyone, such as the vasoconstrictor Sudafed (Pseudoephedrine).

That said, I think we have an absolute duty to clue people in on potential side effects. First, because they often won't hear them in any but the most general terms from their doctors, and secondly, to provide a sense of context thould they arise, e.g., so someone knows that his/her body/mind isn't going out of control (yet again) in some strange and bizarre fashion.

Mike

Absolutely. I don't disagree with that one bit. But, on the peripheral neuropathy board, it seems as if a lot of people are helped by neurontin and lyrica. Just because people over here have trouble with it (like I said, I had mild side effects with lyrica and none of those medicines worked for me, but had no major trouble with them), doesn't mean that we should be telling people not to try them at all. To warn them of potential side effects and tell them if they have trouble to stop them right away or seek care immediately is one thing--but some people ONLY get relief from these medicines, and to deny them that help by totally discouraging them from them just because some people have trouble with them is wrong in my opinion.

Just curious, though--what is the problem with sudafed? I've taken it quite often in the past for allergies, though I don't think I've taken it for a couple of years.