My Drugs Are a MESS! Talk With Pharmacist!

General
1

Hi All. I'm quite frustrated with my doc. Imagine that? A fibro person frustrated with their doctor? HA! This is all quite confusing and I have had to step back myself in order to wrap my brain around it.

1. About a month ago I posted a discussion about the weird reaction I had to taking 1/2 of a vicodin for pain. I take it rarely. I used to take it a lot. Never expected it to make my heart race, beat so hard and feel like my it was in my throat instead of in my chest. Fatigue hit hard and fast, lasting over a week. Foods I ate caused repeat of the same symptoms on a smaller scale. Mostly sugar and caffeine, which I hardly have any of to begin with.

I went to my doctor a 1 1/2 weeks later. He told me it wasn't the vicodin and to keep using it if I needed it. He raised my lyrica from 300 to 450 a day and told me to lose weight and exercise.

I was never happy with all the drugs to begin with. Lyrica, effexor, celexa, clonazepam and vicodin. He decided that effexor might be causing the heart thing. So I agreed to quit the effexor. I wanted to, so Yae!

2. I talked to him about wanting to try to stop clonazepam and had taken melatonin, but it didn't help me sleep. So he prescribed a new drug for me; doxepin (a far cry from what I was going for with the melatonin). I was disappointed because he wasn't hearing me at all. He told me to lose weight and exercise. I left in a fog.

On the way home I realized how disappointed I was. I was glad to be stopping the effexor, but was so disappointed in the visit overall. Now he had raised lyrica and added doxepin. Plus he told me I was fat and lazy. :0) Of course I'm fat...I take lyrica! I have lost most of the lyrica weight, but how can I lose more while on it?

3. I went to pharmacy the next day to pick up the doxepin. The pharmacist brought me a print out of my meds. On it were the words. MAJOR and DRUG INTERACTIONS. She explained that there was possibility of severe interaction between celexa and the new doxepin causing HEART PROBLEMS. ISN'T THAT WHY I WENT TO HIM TO BEGIN WITH? Plus the doxepin and clonazepam are a bad and dangerous combo. Triple threat! So, needless to say, I did not get the new one.

I WANT OFF THIS MERRY-GO-ROUND! I have been to rheumy, neurologist and pcp in the last 6 weeks. All of them told me to exercise. All want me to lose weight. Rheumy and neuro say i am taking lots of meds that can cause cognitive issues. I'm tired of numbness, heart palpatations, dizziness. I want off of LYRICA now!

Now I have to go back to pcp to get incrimental doses of lyrica so i can stop it slowly. i am getting off and never getting back on. i don't care if it hurts. these meds are going to kill me! I want to try alternatives so bare with me for awhile.

I'm sorry if this doesn't make sense. It makes sense in my head. I want YOU to be very careful with all these meds. PLEASE! Talk and make friends with your pharmacist.

With tons of hugs and love and prayers,

LKitty

(sorry font went grey and I can't fix it)

2

Hi LKitty,

I can't figure out why the same doctor who prescribes your other drug would prescribe something that could cause a dangerous interaction PLUS heart problems! I mean, seriously, doc??? If you were prescribing for yourself or your own kid, doc, wouldn't you be a bit more careful and listen a bit better???

While your goal of getting off your drugs is laudable, LKitty, I really am concerned for you at the same time. For instance, when I miss a single dose of Lyrica, I end up in extreme pain that lasts for several days. I'm not aware of a natural substance that gives much pain relief where fibro is concerned. Some people say d-ribose is helpful but I have no idea how much pain relief it might offer. And it's hard to wrap our minds around how severe our pain is until that Lyrica is withheld. (But who knows, maybe the pain decreases after a while of being without it.)

Aside from that issue, Effexor is highly addictive and hard to quit. I don't blame you for wanting off of it, so just beware and be careful regarding withdrawal. People have said they experienced extreme electrical shocks, including inside their heads (brain zaps,) when withdrawing. Extreme nausea and depression are also experienced by many, as well as heavy crying jags. Therefore it might make sense to try to withdraw at different times from the Effexor and Lyrica. And remember to slowly decrease your doses and to discuss it with your doctor first, even if he is a Gyro J Screwloose.

Much, much luck to you. I certainly do understand where your frustration is coming from! Our meds are pretty intense, and I do think we should be well informed of the real risks associated with them BEFORE we're put on them.

Hugs and some nice hot tea,

Petunia

3

That's my point, Petunia. We don't know the risks. We, well I, need to be more aware. This has shaken me to my core.

I am successfully off of effexor/venlafaxine. 8 days, now. No problem. I was on the minimum dose, 37.5. I appreciate your previous warning because it did make me aware of possibilities. Gyro J Screwloose told me to just stop cold turkey. I was ready with pill in hand for 3 days waiting for withdrawal symptoms. My heart palpatations lessened each day!

I am going to slowly reduce Lyrica, but eventually I have to go back to screwloose to get lower dose. I have some 100's so I just started using a 100 at night in place of a 150. Still 150 in the morning. I'm so tired of this numb and high feeling. DRibose isn't cheap, but I want to give it a try.

You know what really erks me? Always having a computer between me and my doc. I'm going to tell him that too. I understand it's how they chart now, but holy cow, this is ridiculous. Insurance companies rule the world, don't they?

Oh well, such is life. Such is fm/cfs. Thanks Petunia. Cheers!

4

Hi L-kitty, I hope you don’t experience any bad withdrawal … Just a thought ,it’s never a good idea to start more than one med at a time & the same principle goes for stopping meds, should be one at a time . Since your doing well off the Effexor you may want to give it a good 4-6 weeks, then decrease the Lyrica gradual.
I hope things work out ok , I think you need to look for a different dr !

And it makes me so angry that they are blaming your fibro symptoms on your weight, I weight 120 … What would his excuse be to me ??? I’m not on Lyrica, I was allergic, but I remember how hungry it made me.

Hugs&
Blessings
dee

5

Oh my goodness, congratulations on getting off the Effexor! You give us hope! I'm glad it was withdrawal free. And Screwloose was nuts to tell you to just quit Effexor - some of those meds can make you mega-depressed and even suicidal when you come off them cold turkey. But you did it, and you're done with the Effxor. Good for you, too, I'd like to add. Good riddance to it, if I may be so bold as to add.

Now the Lyrica. Go easy on it, little by little. Then get a lower dose from Screwloose after showing him the paperwork about the massive interactions you would have suffered if you'd started the new drug. Let Screwloose see that he messed up. A teachable moment, some might say.

And if you're saying that Screwloose is always at his computer when talking to you, I HEAR you! I had a stupid nurse practitioner who always had her face buried in her laptop, even as we spoke. It annoyed the H#LL out of me, and I told her so once I'd quit the practice. Maybe you should bring a laptop to his office and work on stuff or play card games while he discusses the lower Lyrica dose, to let him see how it feels, the dufus!

Good luck, my friend. I hope you have a lot of luck with the DRibose.

Petunia

6

Hi LKitty,

Thank goodness your on top of things! I have had similar experiences with negligent doctors and I've learnt you have to be your own best advocate! Sometimes Pharmacists know more about medications and interactions with another med than doctors do. Congratulations with getting off Effexor. Just to encourage you I was on Lyrica twice and each time I withdrew slowly and had no bad withdrawal effects. I hope the same will be true for you, but I would take Dee's suggestions and wait a while before weaning from Lyrica. Let your body get used to the withdrawal from the Effexor. These medications are hit or miss and I did not have a good experience with Lyrica after many months of being on it it was really helpin me. Particularly with the pain going from my middle back up my neck and into my head, but then I had severe swelling of my legs and feet. I was bloated all the time and did have some weight gain. So I don't miss it and am now on Cymbalta. Not sure how much that is helping me in regard to my pain...I'm going to discuss this with my doctor soon as I feel my pain meds take care of the majority of my pain and I was on a mild anti-depressant prior to the Cymbalta which was working fine for me. Why should I continue to put additional chemicals in my body if they aren't doing much. I hate that I have to take pain meds, but I have tried more natural ways to lessen my pain and they did nothing at all. In your case I would consider looking for a new Doctor as you have every right to be upset with Dr. Screwup! Btw it only took me a few weeks to get off the Lyrica. I was on 150mg. So depends on your dosage. Good luck and I pray you will get of Lyrica with no consequences!!

Hugs,

Sue

7


Hi LKitty,

I'm concerned about the way this doctor seems to be just throwing meds at you and NOT LISTENING to you! First I'm worried that he gave you Effexor and Celexa together, because they run the risk of Serotonin Syndrome. Add to that Klonopin, Vicodin, and now Doxepin? That's a LOT of harsh medications he's potentially handing out together. Telling you to stop Effexor cold-turkey was probably the worst advice ever! It's known for being a nightmare to wean off of--trust me, the stories are true! I am SO GLAD you were able to stop it without problem.

Second thought: He's badgering you to lose weight, and then gives you Doxepin which is known to cause a lot of weight gain. It's also a liver killer, did he run bloodwork, or tell you that you should have periodic checks of your liver? And Dee is right -- never start or stop more than one medicine at a time, because how will you know which one is causing the problem?

Sweetie, this guy worries me. Have you considered looking for a new doc? I never like to suggest that, but Dr. Screwloose sounds like he's already lost his screws.

Please be careful, listen to your Pharmacist, and research research research !

Hugs,
Renie♥

8

Thank you all for your heart felt advice. I look at what I wrote yesterday and think "what a mess". It truly is. My mind has been so effected by all of these meds.

My game plan is to stay off of effexor and stay where I am with my lyrica dose for awhile. Thanks, Dee for helping me with a timeline for that. I'll stay a good month where I'm at. I am down 50 mg, to 250 from 300. I notice that the high feeling and numbness that was driving me crazy is already gone. So is the ringing in my ears. Fatigue is big today tho. But, at least my head feels better. Now I feel like I can think and research what's going on. Thanks Renie. And DreamCatcher thanks for helping with some added confidence for the withdrawals.

That is a lot of side effects that I've already knocked off the list. I'm beginning to feel human, just extremely tired human. LOL!

I appreciate you all and your experience. You are such a blessing.

9

L-Kitty,

This really sounds like a wise timetable for getting off of Effexor then getting off of Lyrica. And hurray, it must be NICE to have a clear head again! Makes me wonder if a lot of what we experience in terms of muzzy headedness is really from the drugs and not the fibro?

Thank you so much for sharing this info about coming off of Effexor, as it helps those of us who may need to get off it but are worried about the side effects. It was brave and good of you to share this intimate moment with us and you've made it sound much less overwhelming.

10

Dear L-Kitty,

Wow, that is one big dose of Lyrica, but not if that is the total for the day, I guess. That is a contradiction in terms though, to raise the dose of Lyrica and expect weight loss! ha!

My question is what you are going to take for nerve pain if you discontinue the Lyrica? It's really hell not having anything to curb that sharp never ending type of pain.

Considered a new Doctor?

So sorry that you are so utterly frustrated!

I was just told by my Rheumatologist that the Daypro, an anti-inflammatory is harder on the liver and kidneys than morphine, and this drug does more for me than any single med I take! Of course, would it be any other way? That said, this is how he knows the biggest part of my pain is disease induced inflammation. He does not feel an anti-inflammatory diet is worth the trouble, and after being on one for a year, would tend to agree. I know it does help some, I don't have food allergies, and it was not worth the hassle.

I hope you can find a Doctor who will work with you on a more reasonable level. I really do hope you are able to find 'your Doctor' and 'your meds', very soon!

Sending love and a hug,

SK

11

Oh, thank you Petunia. I think it's important to be real here and learn from each other. I guess it was kind of intimate. I'm so glad to have this place to come to and share. Everyones support helps prevent me from going cuckoo! I hope by sharing this someone is encouraged because I know I'm not the only one frustrated with so many meds and questionable doctors.

I am sure our drugs cause some of the fog. It will be interesting to find a good balance, preventing pain and side effects from drugs at the same time. It has to be possible, at least at a better level than I have been experiencing. Taking too many of those big drugs at the same time is not a good thing for our minds or body's.

12

Oh, SK I'm so glad to hear from you! I'm so sorry you are having such a rough time of it right now. I know taking the Daypro is a tough one, but if it makes life liveable you don't have much of a choice, right? I am so glad that you found something to help with your pain. It really is amazing how the medicines that we're given can work for us or against us. You are so fortunate to have this rheumy who knows you well and helps you decide what is best for you. That is a valuable doctor!

Yes, I will be doctor shopping soon. I need to go back to Dr Screwloose one more time, because I do need to ask him for the incrimental dosages of lyrica. If I can't stop it completely I want to be on the lowest dose possible that works for me. I don't want to change doctors in the middle of this mess. A friend told me of a chiropractor that specializes in fibro. I am so happy to hear it! He is pretty close, so I will go to him and I will see if he has an MD he can recommend, mostly for prescribing meds.

What a ride, huh? Hang in there sweet SK. We can do it!

Love and hugs back,

LK

13

Hi Kitty - oh my goodness!! I can't believe that the Doctor told you, you were 'fat and lazy!' How insensitive and callous that was. I'm telling you, the frustrations you are going through - I go through too. It's never-ending and as I have told people on this website several times: I seem to know MORE then the Doctors do! Do you find this to be true?

Many times, I have been given Meds that have side effects that will hurt my stomach - even though the Doctor KNOWS that I suffer form Diverticulitis. Or, Meds that might cause Migraines - which, again, the Doctor knows I suffer from. I have to be my own Advocate 24/7 now and it can be so exhausting! It goes on and on. If I pick up a new Med from the pharmacy, I read the pamphlet thoroughly. Many times, I return the Meds because they are a danger to the very things I am afflicted with. THEN, I have to call the Doctor's office and start all over again.

I honestly think at times, that I would make a fabulous doctor! LOL I am smart, come from a family of doctors and nurses and I have compassion and empathy for those who suffer - which very few Doctor's have nowadays. It's scary, because the bottom line is, we all just want to be HEARD! Right?? .....And it isn't happening. Oh! Don't get me started here!!

Kitty, I think you are a very lovely and compassionate woman - and it makes me livid when I read stories, such as yours,that show what we all go through at times. We jump through hoops, run over obstacles (desperately trying to avoid them), meet incompetent Doctors and worse of all - they DON'T listen. Sometimes, I don't know what else to do to rectify these problems. I have been battling hoops and obstacles for so many years and I am tired!! Love and Hugs!! Laurie

14

Hi LKitty,

I have had stupid doctors prescribe stuff that contradiced other stuff I was taken--my pharmacist literally saved me a trip to the emergency room one time, who knows what would have happened if he hadn't caught the mistake.
Yes, my rheumy wanted me to lose weight too. I stopped going to him when he called me a quivering blob of protoplasm. I was not that fat! Jerk! I try to keep my weight down, but do it by eating as healthy as possible, not by not eating.

I never took Lyrica as I am allergic to the vast majority of prescription medications. But a fibro friend took it for a long time and had to get off it. She is much better without it! I know you are coming off it slow, that's good, you'll be off and better for it in no time!

Petunia Girl mentioned not knowing of a natural pain reliever. I do, although it sounds like a quack remedy it works for me. Of course, since we have fibro, it may not work for you, but here goes:

Barley grass juice! Yep! Amazing how it minimizes the pain! It comes as a powder, you can mix it with water (yuck) or juice. I do a combination of both water and juice, plus carrot juice (one of the best things you can consume, packed with vitamins and minerals and anti-inflammatory too!). You start slowly on it, a rounded teaspoon once a day at first, then work up. I take 2 heaping teaspoons a day. I also use beet juice powder (just 1/4 teaspoon a day) for my IBS--it really helps.

If you or anyone else is interested in trying this, I get mine online at Sunburst Superfoods. (Am I allowed to post the link? I will if it's ok) This is the least expensive I have found, and is of excellent quality. It costs me about $25 a month.

With this stuff I can control my pain with occaisional doses of ibuprophen, instead of lots of ibuprophen plus tramadol (can't take anything stronger than that).

I hope this helps :)

15

I'm not that fat either! And I do exercise. They just don't listen. Interesting info on the barley grass. I knew it and carrot juice are good. I didn't realize they relieve pain. I do smoothies all the time. I always add a dark green leafy vegetable to some fruit and almond or coconut milk, may some green tea. I may order some of the barley, carrot and beet to add to it. I would love to have a juicer. I use a blender right now.

Thanks Kimberly.

16

You're welcome! I hope they will help you. It's great you eat dark leafy greens, nutritious foods make me feel better.

I have a juicer and the juice is delicious but with the work involved preparing the vegetables and especially cleaning the thing, I hardly ever use it.

17

Makes perfect sense and I understand your frustration. My drs have tried me on different Meds and each one has caused some nasty side effect so I just ditched them all, I just take a muscle relaxer when I’m really bad & maybe Tylenol or some other OTC for pain, I told my rhummy that I can put up with the pain than all the side effects, and I have made myself start walking and getting in the pool has helped.
I hope everything works out for you !!
Sharon

18

Sharon, I am right there with you! I would far rather tough out the pain than deal with nasty side effects!

Gentle Hugs, Kimm :)

19

You actually have a doctor that tells you you're fat and LAZY! You should not only find a new doc, but he/she should be reported to the AMA! Shameful! I don't think I can help you with docs, since I have had numerous dimwits myself! However, please do try to find one that is at the very least, compassionate! As far as Melatonin, I agree, sometimes that has worked for me, other times not so much. I have found a liquid version that has no additives, like so many do, and it works like no other I have ever tried! (I didn't realize how harmful some ingredients are for "us" who have compromised immune systems). I found that only 1 mg of this liquid not only helps me sleep deeply, but I don't wake up feeling "drugged." I also recently added Ashwagandha along with the Melatonin, Vit B-6 and Vit D 5000 iu; and most important...MAGNESIUM (either Citrate, Glycinate, Taurate and Malate (the last is proven to help FMS)....all of which helps deep sleep and pain. Please try this combo! Not expensive, and NO SIDE EFFECTS...(except Citrate which can have bathroom drama...great for constipation...start w/low doses). Good luck dear! Lori

20

Sounds like a good idea to me!