Thinking of brain fog from Pregabalin, constipation from pain killers, rashes etc. I react so badly that I won’t even try new medication. I have decided it is better to just manage the flares; at least my head stays clear.
Do you think it is worth persevering in hopes that side effects wear off?
I'm with you on being cautious about new medications. I've tried many and have found the side effects just aren't worth it. If the side effects are bad for me, I've found they only get worse over time. For some reason I am hypersensitive to drugs (could it be the EM? pernicious anemia? leaky gut?)
For pain I've tried nortriptylene, cymbalta, gabapentin, all except cymbalta at very low doses. Hated the dry mouth and what they did to my mind. Not worth it to me to be in a daze all of the time.
I think this is a very serious problem. We are not educated sufficiently to recognise reactions. Many people consequently do not report or persist with their medications so the uptake is haphazard. Possible side effects should be more strongly stated, questioned and investigated.
How strange I have just been talking about this on a different topic! I have been through most of them except the one they want to try next which is a SSRI antidepressant and there is no way I am having that!
You should always report to your doctor the side effects you experience and if you stopped taking the drug. It's your doctor's responsibility to handle things from there. I don't know whether doctors report that information back to the drug manufacturer or FDA (if in the US), to their organization (such as an HMO in the US).
I do think drug companies tend to downplay the potential side effects. Clinical trials are very expensive to perform on new drugs and I'd expect drug companies to use as few test subjects as they can get by with when they are testing drug safety and side effects. I've gotten into the habit of researching a drug and its potential side effects before taking it.Just so I know what to watch out for.
For example, after taking oral gabapentin for a couple weeks, I developed a constant tic in my right eyelid. Had I not researched it, I would not made the association (this was a rare side effect). I've been off it a over two weeks now and the tic has nearly stopped.
I was then prescribed a cream that contains gabapentin for my foot pain. That I am able to tolerate, perhaps because it puts the medicine where it is needed instead of floating all around in my bloodstream and bathing my entire body in it.
In the UK you can report side effects yourself to the FDA or even drug interactions which I think was the case with my experience of Gabapentin, as I am on buprenorphine for my rheumatoid arthritis pain. At the time I wasn't in a good state as I had just lost my husband to cancer. Normally I don't take anything without looking up things. When I did look up interactions after the event I found that these two taken together can cause coma or even death! So, I was very lucky indeed, especially living on my own. I did tell my GP who prescribed them and his response was that it wasn't in his "Bible". So, I showed him the link on the internet and he was quite shocked. I have to confess that I am fortunate in that I started my career in a lab and my husband was a Research Chemist at ICI now Astra Zeneca, so I probably know more about drugs than my doctors, as my husband kept me up to date with things until he retired not that long ago.
Side effects can be difficult to deal with initally, but in the clinical setting, usually symptoms get better over time. Most patients report that the side effects are better withing 4-6 weeks. Sometimes its just a matter of being patient. Always report them to your doctor because some can be more serious than others. As far as the ones that you are experiencing, maybe adjusting the time of day that you take the Pregabalin could be helpful with the brain fog. I have noticed with that class of drug, my side effects have always gotten better. There are also other drugs in that class that may work better and without side effects if this one doesn't work out for you. Be patient and stay hopeful.
Pain meds are a constant balancing act to avoid constipation. Make sure that you are getting your recommended amount of water each day, and increase your fiber intake.. I prefer to get my fiber though foods. There are certain cereal, fruits and veggies that I have found work without causing painful bloating and gas. It make take you some time to figure out what will work for you. There are also the OTC fiber supplements and those may work well for you too. Just watch out for bloating and gas.
We have to weigh the plusses and the minuses with each new medication.
GrumpyCat, 6 weeks was too long for me. Perhaps if I was in agony and just couldn’t function at all I would wait it out but I have a high pain threshold and would rather the pain than feeling like I was going to be sick or fall over all the time. Same goes for painkillers which mess up my system. I had to take them when I had a serious accident and was so relieved (literally) when I was able to manage without them. I just wondered whether people give up like me or tough it out.
Sheltielife. I have managed to reach a good old age without having any idea we could report ourselves to the FDA. While I was in hospital and very ill I was given a beta blocker even though I have severe Raynauds and it was devastating and caused the EM to go into overdrive. I’m quite sure no-one reported it to anyone.
HI Folks.
I know I'm starting to sound like a broken record, but I honestly believe that so many side effects from meds are because the dosage is too high. With every medication I have tried, I talked my doctor into titrating the dose until we reached an undesirable side effect, then we backed off a notch. I've been able to handle Lyrica and Cymbalta at very low doses (lower than the lowest available).
Also spacing meds out throughout the day instead of taking a larger dose a couple times a day makes a huge difference for me. I find I need meds about every 3-4 hours to keep blood levels where they should be. So, I take them 5-6 times day instead of 2x/day. This was recommended to me by Dr. Jay Cohen who is a consulting MD and also has EM that he manages successfully by using several meds and supplements in low doses spread through the day AND night.
I still have some problems with Lyrica (slow peristalsis, sometimes orthostatic hypotension and some problems with short-term memory. However, these are simply inconveniences compared with excruciating pain every evening and 1-2 hours sleep/night that I had before Lyrica-Cymbalta-Vit C combo.
Best wishes to all of you--I hope that you can find a compounding pharmacy or can divide pills yourself--taking it very slow in increasing dosage really does work for many people.
Cheers,
Dragica
I know you are right Dragica but it isn’t easy. Some or the tablets are just so difficult to chop up, some too small and some which crumble. I may be wrong but I doubt our pharmacies would be helpful and one doctor told me off for quartering the lowest dose which was what he prescribed. Here in the UK we are granted 5 or 10 minute slots and GPs have never heard of EM or people who are over sensitive to medications and there just isn’t time to explain. I ask for the lowest dose but dividing up a tiny little tablet can be well nigh impossible.
I spend the evening and night with ice packs strapped to my legs which helps with the pain and am now so used to waking every hour during the night that when I woke and found I had slept three hours I had to restrain myself from waking up my daughter to tell her the exciting news:)
Hi Nel.
I know it isn't easy and you are suffering so much.
I found that compounding pharmacies are available around the world and most will mail out medication. When I started Cymbalta, I opened the capsule and started with 5 pellets (of approx 270 pellets) and I upped it by 5 pellets every 4-5 days or until I reached a side effect, then I ratcheted back by 5 pellets and tried again a week later. It took several months to get to 1/2 of the lowest dose available in Canada. But it really helps and works in synergy with Lyrica actually reducing some of Lyricas' side effects and vice versa. With tablets I use a pill cutter, if I have to. At such low doses, it really doesn't matter if you're slightly over or under on a given day as long as you're not taking more than is prescribed. I really believe that experimenting with dose is crucial. We should never be taking more medication than is absolutely necessary. Yet the internet is full of people talking about side effects of many drugs--so many of these people are taking large doses of meds to start. I am always floored when an MD prescribes such a high dose initially--that is a recipe for having patients give up on medication that might have been OK for them at lower doses. We all react differently to meds--our size, gender, cultural background, activity level, general health and location play a huge role in side effects of meds. Drugs are generally tested on males because females are so difficult to control for other factors such as hormones. It's no wonder that recommended doses are sometimes too high for others.
I wish you well and hope that you can get some sleep and relief very soon.
Dragica.
Hi Dragica,
I believe you are right on. My dermatologist wanted me to try Trental for my EM. The dose was 3 of them each day. One with each meal. On the 2nd day of that dose I couldn’t sleep that night. Nothing I did would allow me to sleep. And I’m talking about NO sleep whatsoever. So, thinking that it might get better, I continued for 7 days & could not sleep at all for all 7 nights! It was horrible! So, I asked my doctor if this was a side affect & she said she had never heard of it. I went online and sure enough it was an uncommon side affect. So, I told her I couldn’t take it. But, now after reading what you said I’m wondering if I backed down on the dose if I could take it. Also, I saw a neurologist yesterday and he suggested Lyrica & Cymbalta. I’m seeing my dermatologist in a week so I will talk to her about those. But, I will make I sure I start off at a very low dose. Thank you for your information!
Miss Patti
Miss Patti.
Good luck with your meds--I think you might have some benefit from the combo of Lyrica and Cymbalta, BUT please start with only ONE DRUG at a time and begin a low very dose and increase gradually until you reach a side effect you can't handle, then back ofo a bit. Once you've reached the maximum dose you can take, stay on that for awhile until you acclimate to that med. SOmetimes it takes a couple of months to see all the effects a med has to offer. If you require more support for pain, then add a VERY SMALL amount of the next drug and increase very gradually. If you start with 2 drugs at once you won't know whether it is one drug that helps or the combo and if you have bad reaction, you won't know which drug caused it or if it was the combo of the 2.
Best wishes,'
Dragica
Thanks Dragica. Your advice is always sound. I might give Lyrica another try. So many of the drugs are also contraindicated for people with heart problems but tiny doses might be safe. That’s one I would have to run past my mystified GP.
Nel I don't know if I am allowed to do this but I have found the info about reporting drug side effects to the FDA by the patient. I think it's usually on the leaflet that comes with medication as well where it tells you how to report things but that's going off memory. So, this is it
Call 0808 100 3352 to report by phone, or go to www.
mhra.gov.uk to download a report form for posting, or fill it
in online.
I personally think if more people did this it would be a great help for the future of medication. We are certainly all different the way we react to drugs, especially considering other medical conditions and other drugs that we are on. As Dragica says it's always better to start on the lowest dose at first and gradually work up to the minimum dosage to ease the symptoms. However, it can still go wrong doing that! When I tried Pregabalin my doctor gave me half the lowest dose to start due to the problems I had with Gabapentin, but even that caused me to have those vision and balance problems. I hate being in constant pain, but I would rather that than not be here at all, as could have been the case with Gabapentin, due I am sure to an interaction with my other drug. For a long time I have had the believe that we don't do things the best way. To me the doctor should recommend a treatment after considering the problem, but the final decision on whether to prescribe or not should be up to a pharmacist who must know other drugs you are on and any other medical conditions you have. A qualified pharmacist knows far more about drugs than a doctor. It's impossible for a doctor especially a GP to know about all drugs and to keep up to date with new findings, whereas a pharmacist is only concerned with drugs and therefore is more able to know of new or existing problems. As I said to my GP especially new drugs you only have to think back to the days of thalidomide to realise the consequences for the future, all those babies born without limbs etc. and it was supposed to be a wonder drug. I know that one thing that doesn't help my problems is that I smoke, but trying to give up when you feel so bad is near impossible. My GP agreed with me on one thing in that it was suggested I try vaporisers to help me quit by a specialist. I had heard that there were other chemicals in these things that can do just as much damage as cigarettes. They haven't been around for long enough to know the long term effects and so I won't' use them. The only way is will power! However, the first thing that the stop smoking clinic tells you is to pick a stress free time and I always say, I can't remember the last time I had one of those :-)
Very good advice. The problem I will have is getting off Effexor to switch to Cymbalta. I’m on it & gabapentin. Gabapentin helps my neuropathy in my feet but both together don’t help the EM. I wonder if they are very similar to Cymbalta & Lyrica. I’ve tried to get off of Effexor 2 Times & it’s unbearable. So, I’ve only been on 75mgs for the past 2 years. I’ve had EM for 15 yrs & everything I’ve tried has not helped. Thank you!
Dragica said:
Miss Patti.
Good luck with your meds–I think you might have some benefit from the combo of Lyrica and Cymbalta, BUT please start with only ONE DRUG at a time and begin a low very dose and increase gradually until you reach a side effect you can’t handle, then back ofo a bit. Once you’ve reached the maximum dose you can take, stay on that for awhile until you acclimate to that med. SOmetimes it takes a couple of months to see all the effects a med has to offer. If you require more support for pain, then add a VERY SMALL amount of the next drug and increase very gradually. If you start with 2 drugs at once you won’t know whether it is one drug that helps or the combo and if you have bad reaction, you won’t know which drug caused it or if it was the combo of the 2.
Best wishes,'
Dragica
Hi Miss Patti.
Effexor is a very powerful drug that causes many people real problems when they try to come off of it. It has to be tapered very slowly, especially if one has been on the drug for any length of time. Here is a link that may help you with your withdrawal: http://www.drugs.com/forum/featured-drugs/tapering-how-effexor-method-1-a-32337.html
I hope it helps. Best wishes.
Dragica
Miss Patti said:
Very good advice. The problem I will have is getting off Effexor to switch to Cymbalta. I'm on it & gabapentin. Gabapentin helps my neuropathy in my feet but both together don't help the EM. I wonder if they are very similar to Cymbalta & Lyrica. I've tried to get off of Effexor 2 Times & it's unbearable. So, I've only been on 75mgs for the past 2 years. I've had EM for 15 yrs & everything I've tried has not helped. Thank you!
Dragica said:Miss Patti.
Good luck with your meds--I think you might have some benefit from the combo of Lyrica and Cymbalta, BUT please start with only ONE DRUG at a time and begin a low very dose and increase gradually until you reach a side effect you can't handle, then back ofo a bit. Once you've reached the maximum dose you can take, stay on that for awhile until you acclimate to that med. SOmetimes it takes a couple of months to see all the effects a med has to offer. If you require more support for pain, then add a VERY SMALL amount of the next drug and increase very gradually. If you start with 2 drugs at once you won't know whether it is one drug that helps or the combo and if you have bad reaction, you won't know which drug caused it or if it was the combo of the 2.
Best wishes,'
Dragica
I had wondered if anyone else was having issues with the medications. I have not been able to tolerate any medication that I have been given so far. They have given me the lowest doses possible. I have tried Gabapentin, Cymbalta, Lyrica. An hour after taking a medicine I get very dizzy and off balance. After being on a medicine for a week I was having very dark horrible thoughts. Taking the medicine was helping with the pain but the side effects are not worth it for me. My neurologist had said because of having EM I was more sensitive to medicines. So I decided to try acupuncture since I was unable to tolerate medicine. I don't know if anyone else had tried acupuncture for EM. My first session did not go as I thought it would. I could feel every needle going in and it was quite uncomfortable for the 20 minutes that they were left in. When she took the needles out of my hand and feet areas I was bleeding quite a bit, then the next day I woke up with bruises on my feet and hands. I tried a couple of sessions but I decided that its not worth it for me. I don't know if I am more sensitive to the treatment because of EM. Everything that I read online regarding acupuncture it was pretty painless. I went for a Swedish massage the other day but that was also hurtful to me. it seems like the last month I am achy in my arms, legs, hands and feet. I don't know if this is common. I am not sure what options I have to try, it seems like anything that I have been doing is working for me.
Thank you, Dragica. This was very informative about getting off Effexor. I will try it!
Dragica said:
Hi Miss Patti.
Effexor is a very powerful drug that causes many people real problems when they try to come off of it. It has to be tapered very slowly, especially if one has been on the drug for any length of time. Here is a link that may help you with your withdrawal: http://www.drugs.com/forum/featured-drugs/tapering-how-effexor-meth…
I hope it helps. Best wishes.
Dragica
Miss Patti said:Very good advice. The problem I will have is getting off Effexor to switch to Cymbalta. I’m on it & gabapentin. Gabapentin helps my neuropathy in my feet but both together don’t help the EM. I wonder if they are very similar to Cymbalta & Lyrica. I’ve tried to get off of Effexor 2 Times & it’s unbearable. So, I’ve only been on 75mgs for the past 2 years. I’ve had EM for 15 yrs & everything I’ve tried has not helped. Thank you!
Dragica said:Miss Patti.
Good luck with your meds–I think you might have some benefit from the combo of Lyrica and Cymbalta, BUT please start with only ONE DRUG at a time and begin a low very dose and increase gradually until you reach a side effect you can’t handle, then back ofo a bit. Once you’ve reached the maximum dose you can take, stay on that for awhile until you acclimate to that med. SOmetimes it takes a couple of months to see all the effects a med has to offer. If you require more support for pain, then add a VERY SMALL amount of the next drug and increase very gradually. If you start with 2 drugs at once you won’t know whether it is one drug that helps or the combo and if you have bad reaction, you won’t know which drug caused it or if it was the combo of the 2.
Best wishes,'
Dragica
That may change Kerri. I am now able to take an antibiotic for a recent chest infection which gave me problems at the beginning of my illness 5 years ago. At that time I could not take anything at all without side effects, including medication for other things which I had been taking for years. I still have problems with new medication such that I would really rather not try but no longer fear that taking a co-dydramol tablet for joint pain will bring me up in a rash and make me feel sick.
br/>
Kerri said:
I had wondered if anyone else was having issues with the medications. I have not been able to tolerate any medication that I have been given so far. They have given me the lowest doses possible. I have tried Gabapentin, Cymbalta, Lyrica. An hour after taking a medicine I get very dizzy and off balance. After being on a medicine for a week I was having very dark horrible thoughts. Taking the medicine was helping with the pain but the side effects are not worth it for me. My neurologist had said because of having EM I was more sensitive to medicines. So I decided to try acupuncture since I was unable to tolerate medicine. I don’t know if anyone else had tried acupuncture for EM. My first session did not go as I thought it would. I could feel every needle going in and it was quite uncomfortable for the 20 minutes that they were left in. When she took the needles out of my hand and feet areas I was bleeding quite a bit, then the next day I woke up with bruises on my feet and hands. I tried a couple of sessions but I decided that its not worth it for me. I don’t know if I am more sensitive to the treatment because of EM. Everything that I read online regarding acupuncture it was pretty painless. I went for a Swedish massage the other day but that was also hurtful to me. it seems like the last month I am achy in my arms, legs, hands and feet. I don’t know if this is common. I am not sure what options I have to try, it seems like anything that I have been doing is working for me.