Well I was beyond excited at the beginning results from starting Lyrica. Having just about no pain and few flares was just the bees knees for me. The answer to my prayers for months! But shortly after I started noticing some pretty fierce side effects. I gained a lot of weight in a very short time. I couldn’t control my appetite for the life of me! My legs, feet, hands and face became so swollen all the time. I weigh about 130 pounds, and when my cousin saw a my legs and feet her reaction was “you look like you have candles and feet of a 300 pound woman!” The swelling was insane. My eyes were constantly dry. The memory loss issues were and still are, a big problem. I’ve definitely got my share of airhead moments from time to time, but this was constant. Forgetting I had the kitchen stove on, trouble figuring out very simple tasks, holding conversations. I think the impact on my vision was the worst. And I am still having problems with it. Everything was double vision, and I couldn’t clearly see the face of someone maybe 10 feet in front of me because it was so blurry. Definitely noticed my emotions were off, felt like a zombie I guess. Nothing interested me, and I couldn’t empathize when people would be feeling down or sad. Immediate gastro/bathroom issues. The flares subsided a lot when I first started taking it, but after a week or so I started having horrible flares in single digits. Have never had that before, it’s always been both hands and both feet.
So I decided to wean myself off of the lyrica, to see if the issues resolved. The withdrawal was the most horrible experience! I was sick to my stomach for about a week couldn’t hold much down, chills and sweats at the same time, flares came back full force and a couple were worse than they had been prior to the lyrica, and every little thing set off my temper.
I am still having the memory/cognitive probs, gastro/bathroom issues, water retention, and vision probs.
For those of you that have taken meds that seem to work, but have serious side effects, did the benefit outweigh the risk? Did the side effects go away while still using that medication for some time? I’m trying to figure out if dealing with the side effects is worth starting lyrica again. There are times I’ve been so desperate just to be pain free that I would try anything. But not being able to function properly and feeling all looped out isn’t something I can deal with on a daily basis with 3 kids and driving when I can’t see road signs or pay attention to traffic lights and other cars etc.
I started a discussion about drug interactions a while ago, which might or might not apply to you. I was put on Gabapentin and not started on the lowest dose. Of course, Lyrica is a similar drug. I was already taking buprenorphine for pain for my rheumatoid arthritis which just doesn't touch my own suspected EM. I had recently lost my husband to cancer and didn't do as I normally do and check for drug interactions, silly me. I was really lucky as not long after taking the Gabpentin I started feeling unwell in lots of ways, my sight was affected, my glucose level fell very low etc. I ate some sugar which pushed the glucose level up, but not long after I wasn't aware of anything for 2 hours. At first I thought I had fallen asleep fortunately I was sat down, then a friend said that I would have felt it coming on if that was the case and so I must have passed out. I didn't take anymore. It was only later that I looked up drug interactions and found that taking Gabapentin at the same time as buprenorphine can cause coma or even death! It was given to me by my GP and since then I have changed to another practice. However, an endocrine specialist put me on Pregablin as an alternative, but to be honest I never took it as I was frightened as I live on my own and to this day I haven't done. For 9 years the doctors have been saying my problem is nerve damage, but I have never thought it was. Now I have found out that I have thick blood which can also cause EM and I am convinced that this is the reason for it and not nerve damage. I am awaiting some further blood tests to determine the cause of my thick blood and then if they find that out they might be able to cure me and even my EM might go away. If only it would as it has ruined my life completely.
Hi Laurent85.
I am so sorry to hear about your trials with Lyrica. I , too, experienced the "miracle effect" of Lyrica when I started--I finally slept more than 1-2 hours/night and it helped cut down the severity of the flares during the day. However, I also developed all but the visual side effects you mention. And this was despite starting with a very low dose and gradually increasing it over several months. It is a very powerful drug.
I started on only 6.25mg/day (which is virtually nothing) and by the time I reached only 18.25mg/day, I wanted to eat all of the time. The memory problems started at 50mg/day and the GI upsets also started occurring at that dose. To deal with the GI problems (caused by lactose intolerance), I called Pfizer and it was recommended that I have my Lyrica compounded from 75mg stock because that has the least lactose in it. It worked like a charm within a week--it really reduced GI problems.
The swelling on the soles of my feet and face started at about 75mg/day--and that's when I started getting some flares in individual toes. The greater the swelling, the worse the flares. We increased the dose gradually to reduce flares, but the swelling got much worse. We finally stopped at 106.25 mg/day (in 3 doses) and tapered back to 100mg/day in 4 doses, but I still had considerable swelling.
After a consult with Dr. Cohen, we decreased the amount of each individual dose and increased the number of doses to 5/day. This really helped. Putting less into my body each time reduced all of the side effects, but I still had too much swelling in my feet. So, we realized that Lyrica wasn't the complete answer. It was unlikely that I could ever tolerate more than 100mg Lyrica/day.
What we decided to do was add a tiny bit of Cymbalta (only 5mg to start). What a miracle--the vasoconstrictive effects of Cymbalta soon reduced the swelling caused by Lyrica and the pain from daytime flares became more manageable. What remains are memory problems and some constipation. I have decided to try to live with both of these. I now use more memory aids (lists) and am trying to be better organized. I am practicing memory skills and things are a getting a bit better.
WHat worries me is that most doctors seem to prescribe such large doses of meds for us. I think that some of these drugs could be useful if they were taken in the right dose, in smaller individual doses spread throughout the day or taken in combination. This takes a lot of patience and trial and error, but I think it is definitely worth it.
All the best to you--I hope you can find a combo that works once the side effects are reduced.
Dragica
Hi Dragica, Hope it works for others, but out of the question for me as I have thick blood which is liable to clotting and it seems that you shouldn't have Cymbalta if you have either a bleeding or blood clotting problem.
Dragica said:
Hi Laurent85.
I am so sorry to hear about your trials with Lyrica. I , too, experienced the "miracle effect" of Lyrica when I started--I finally slept more than 1-2 hours/night and it helped cut down the severity of the flares during the day. However, I also developed all but the visual side effects you mention. And this was despite starting with a very low dose and gradually increasing it over several months. It is a very powerful drug.
I started on only 6.25mg/day (which is virtually nothing) and by the time I reached only 18.25mg/day, I wanted to eat all of the time. The memory problems started at 50mg/day and the GI upsets also started occurring at that dose. To deal with the GI problems (caused by lactose intolerance), I called Pfizer and it was recommended that I have my Lyrica compounded from 75mg stock because that has the least lactose in it. It worked like a charm within a week--it really reduced GI problems.
The swelling on the soles of my feet and face started at about 75mg/day--and that's when I started getting some flares in individual toes. The greater the swelling, the worse the flares. We increased the dose gradually to reduce flares, but the swelling got much worse. We finally stopped at 106.25 mg/day (in 3 doses) and tapered back to 100mg/day in 4 doses, but I still had considerable swelling.
After a consult with Dr. Cohen, we decreased the amount of each individual dose and increased the number of doses to 5/day. This really helped. Putting less into my body each time reduced all of the side effects, but I still had too much swelling in my feet. So, we realized that Lyrica wasn't the complete answer. It was unlikely that I could ever tolerate more than 100mg Lyrica/day.
What we decided to do was add a tiny bit of Cymbalta (only 5mg to start). What a miracle--the vasoconstrictive effects of Cymbalta soon reduced the swelling caused by Lyrica and the pain from daytime flares became more manageable. What remains are memory problems and some constipation. I have decided to try to live with both of these. I now use more memory aids (lists) and am trying to be better organized. I am practicing memory skills and things are a getting a bit better.
WHat worries me is that most doctors seem to prescribe such large doses of meds for us. I think that some of these drugs could be useful if they were taken in the right dose, in smaller individual doses spread throughout the day or taken in combination. This takes a lot of patience and trial and error, but I think it is definitely worth it.
All the best to you--I hope you can find a combo that works once the side effects are reduced.
Dragica
Hi Laurent85 - I am new to the site. Not yet diagnosed but in the interim have been prescribed Lyrica 25mgs. It is only approx 7 weeks since I finished being weaned off it for a back injury in 2006, I was taking 75mg daily. I had many side effects which together with the symptoms of EM has put me where exactly???????............... what are symptoms of withdrawal and what are the symptoms of EM? Nigh on all you have described I was experiencing. Now for the past week I am back on Lyrica and am seeing some improvement from EM symptoms. I still am carrying the extra weight, blurred vision but not the memory/cognitive probs or gastro prob. I do feel so confused about the multitude of symptoms that I am experiencing and unsure which box to put them into - just where do I go from here ? Could you tell me please what dosage of Lyrica you were on. Actually when my doctor prescribed it I said I had just come of it and did not really want to resume.....He said it was up to me and it depended on how desperate I was on. I was desperate and now I feel even more so.....
Hi First of all you are not on your own anymore! This forum has been a great help to me if for nothing else I am realising just how many other people are going through the same feelings of desperation! I suspected this was my problem 9 years ago but non of the doctors believed me or more than likely had never heard of it before from what I have been told on here. Obviously I don’t know which country you are in but I am in the UK and have been told there are only about 2 doctors that know about it. When my GP looked at my legs and feet he said that he had seen something like that before, end of discusion and even a few months ago he asked if it was the pain that bothered me, after years of telling him how bad the pain was! I haven’t been diagnosed yet, I have just found out that I have thick blood and my red blood cell count is sky high something that can cause EM. I am waiting for some blood tests to find the reason for my thick blood and when I received a copy of the letter he sent to my GP, BTW I changed my GP recently, he said if it comes back negative for what he is testing for no further treatment would be needed!If that ends up being the case I don’t know where to turn. My only option is to request a re visit to the vascular man who found out I had thick blood from basic tests and see what he thinks. He was brilliant and understanding but it was no longer his field it was haematology
Hi Sheltielife
.
It is so good to know I am not alone yet I am still processing all the information and my brain feels overloaded!
I live in S.E. Queensland in Australia. I moved here from NSW 18 months ago. Lost my two brothers and my sister lives on the Sunshine Coast about 50 minutes away. The climate is sub-tropical with 100% humidity during summer which seems to have had a dire effect on me producing severe symptoms of EM. (possibly) still unknown.
No tests have been carried out to ascertain a diagnosis. My Dr. had never heard of it. Of course I am not his only patient and time given to me is limited. Although he did say he would not give up on me - a positive which I am hanging onto for dear life. I am now taking 25mg of Lyrica but unsure now about the side effects.
I had an appointment with him for tomorrow but I have cancelled it and made it for next Monday. As it is predicted to be 35 to 37 deg C and I am unable to wear shoes when it is so hot.
It amazes me that there are not more doctors who know about EM - they are as rare as the disease!
I am so sorry that you may hit a brick wall. Dr's, especially GP's, can only take you so far as their knowledge allows them unless they are prepared to go the extra mile. I do hope your Dr is prepared to travel for you!! and mine for that matter. I do have information overload and I need to possibly step back but then desperation for answers takes over and I read more becoming more and more overwhelmed. Like you I have to hang in there.
Try Nortriptyline.. Other than nightmares for the few weeks the only other side affect was weight gain. But I felt so much better I didn't care. With time I was eventually able to lower the dosage and the weight came off in 3-5 months.
Good luck!
I was given amitriptyline which is basically the same and to be honest, it didn't make the slightest difference to me! If it works for you that's great. I think much depends on the cause of the EM in the first place e.g. if it's nerve damage they will work well. My doctors have been saying for 9 years that mine is nerve damage but I never thought it was and recently have been told I have thick blood, which can also cause EM. As you say you were told to take aspirin I wondered if that was the cause of yours as it's a blood thinner.