How Many Prescription Medications Do You Take?

[DancingLight]

Hello all! Welcome newbies and hello oldies! I haven't posted in a very long time, but am curious about this topic...

I had a difficult appointment with my PCP today. My other doctors know that I am on a lot of medications and I think we all feel that we haven't had a lot of other choices. We've done the best we can with what we are dealing with.

I am being treated for two major conditions: ANS dysfunction and Chronic Lyme, both of which require a bit of a 'cocktail' of meds!

I don't like that I take so many medications but I felt that my doctor didn't quite 'get it' and was invalidating both myself and my other doctors decisions.

She tried to compare me to 'other 32 year olds'. She went through my medication list and said which meds a 32 year old might be taking and which meds they wouldn't be. Of course, I'm not typical!!!!!

The reason I want to do this poll is to see if others who are dealing with serious chronic illness are also on a long list of medications. I was looking to see if I was more the norm than the exception or if I was way out there in the med department.

I do read poeple's information at the bottom of their names and know that others are on multiple meds. Just thought a poll might quantify it a bit.

I am not including non-prescription stuff like vitamins, probiotics, tylenol, etc. but I am including things like say, prescription pain patches.

[bjt22]

Right now I'm on seven prescription drugs. I also have a prescription for home oxygen. In the past, I've come off drugs that I really couldn't tell were helping me. I've also been open to more medication during particularly difficult times such as when I'm in a cluster headache cycle. I really don't like taking things I don't need when I don't need them...I'd rather wait until I do. If I didn't take that stand strongly, I'd probably be on several more medications.

[Ernie]

Hi,

I am on at least 17 prescription medications. For my doctors, I am the exception. They keep telling me that I take too many meds. So far, this is the only way I can keep out of my power chair. I still have migraine headaches even with two migraine pills. Last year, when I was in the hospital some smart docs thought that I had too many meds and stops some of them and almost killed me! So now I stay away from doctors who want to stop my meds.

[MightyMouse]

I put 6-9, but if I were to take all the meds I was supposed to be on, it would be 10-15. I had to stop a few of them because, while they helped with their prescribed area, they caused side effects that I couldn't tolerate--i.e. I'm supposed to be on Crestor, but it gives me horrible stomach pain if I take it more than a few days. I'm also supposed to be on florinef, but a few days in, the monstrous nose bleeds start (i.e. geysers). I also only included my everyday, routine meds when I voted--if I included my prn stuff for things like motility, spasms, migraines, sinus problems, asthma, I'd be at a pretty high number.

[pat57]

Norpace only here.

[Rachel]

I'm sorry your doctor was giving you a hard time about your number of medications. There is nothing normal about dysautonomia and lyme disease, so why would your meds be the same as those for a typical 32 year old?!

I'm on 3 daily prescription meds. There would be more daily meds, but I've stopped quite a few because they either didn't help or insurance didn't cover them. There are also 3 meds that I take only on an as needed basis, but I didn't count those in my voting.

[Sunfish]

a great big GGGGGGGGGGRRRRRRRRRRRRRRRRR for your PCP. how frustrating. and completely uncalled for. i would be fuming if i were you. not to mention hurt. you're doing what you think you should be to get your health to the best place it can be under the care of docs that you've had a relationship with for much longer than her and she has the nerve to question that by putting you in a box with "other 32 year olds"?! i think rachel put it well. when you (and we) aren't "normal" in any other way then why the heck would we be normal when it comes to meds!? i'm all for taking the fewest meds possible but for some of us that may still leave us taking what looks like a huge number. i know that if i took everything i've been offered and/or have tried over the years or if i tried to alleviate every itsy bitty sign & symptom that i have regularly i'd be on even more than i already am. i'm guessing that it's the same for you. if you weren't as judicious as you already are i'd guess that you could easilyi be on more meds. seriously though, it's a good thing i don't live closer to you b/c i would be very tempted to give that doc a piece of my mind (and perhaps a kick or a slap across the face)! it would have been one thing if she had had a particular question/ concern about the purpose of a particular drug b/c of wanting to better understand your health situation (i.e. if she had said "help me understand why you're taking this med, what it does for you, etc") but the way she handled her "concern" seems anything but helpful!

i guess i cast my vote differently than others did though. i would have tried to keep it consistant but i voted yesterday (before others added comments re: how they voted). i voted based on how many total prescription meds i use, whether daily or PRN, as long as they're things i take semi-regularly (i.e. i didn't count things that i've been on for an acute issue, that i only use a few times a year, etc but i did count things that i use intermittently on a fairly regular basis). counting that way my vote was easily the highest option available. that said, if i include my IV stuff, which are techincally considered meds, i'm in that category even if i take away my PRN meds from my original vote, so i suppose i'm in that category regardless. it only changes whether i "just" make it into that range or whether i'm almost double it. regardless of how i count my Rx meds though, the lowest number i can come up with is 17 meds but with my IV stuff added in as well as PRN meds it's over 30. yikes. way to make me feel like a druggie!! wh well. and that's not even counting my prescription supples & "stuff" (BiPAP, wheelchair, G & J tubes, various supplies for my port/ IVs/ tubes/ BiPAP/ wheelchair/etc.). i can't even imagine what the number would be then. bottom line is that if you want to tell your doc you know people on WAY more meds than you are you would not be exaggerating.

without many of my meds i wouldn't be here though and without others i would function at a significantly lower level than i already do so i'll take them. there are only 2 things on my massive list that i'm not 100% confident are benefiting me any longer symptomatically; one however is indicated via bloodwork such that there's still a very objective reason to take it (to resolve a deficiency) and the other definitely helped me significantly in the past & while my docs & i have considered seeing if it's still helping by stopping it for a period i haven't had a long enough block of stability and/or no other change in variables for us to proceed with that trial.

so...in short i guess what i'm getting at is that as much as i wish i could take/use less meds, i feel a bit better about doing so b/c of how i can so specifically tell what most all of them are doing.

ok....i probably rambled on about far more than what you were looking for but there you have it....i don't know what to say when it comes to the bigger picture of getting this doc in your camp moving forward but hopefully she'll have a revelation of realizing that she was being a total wacko?! other than that i would try to stay confident in the fact that taking care of yourself isn't measured in the number of meds you do or don't take. if that means re-evaluating a med or two moving forward that might not be helping in the way it used to then that's dandy, but not any more dandy than if you need to add one or more meds to best advance you on the journey to better health. at least that's my two cents!

melissa

p.s. i'm even more frustrated for you knowing how hard you've had to fight for some of the meds (at least one) that you need to function. why on earth would you do all of that if it wasn't so necessary for your day to day functioning?!

[juliegee]

Emily-

Ditto to everything Melissa & Rachel have said! I understand that there is some sort of corollary, if not causal, relationship between autonomic dysfunction and Lymes Disease. Which of the two would your doc like to stop treating?!?! It seems clear to me that by treating the Lymes Disease you are keeping your ANS symptoms in check. If nothing else, your doc's comments show how little s/he understands your health conditions.

I deal with MCAD and MUST take a handful of meds to keep that in check to prevent anaphylaxis AND my autonomic things from going wacko. Of course, I wish I could take less medication. I'm sure all of us here feel the same way.

It's time to teach your doc about your conditions and why you take the medication you do. If s/he dares to comment again on your many drugs. Be sure to ask which one s/he recommends you stop taking. Explain one by one why you take each one that you do. If s/he will lsiten and learn, keep the relationship. If not, fire that PCP. You deserve better!

Julie

[flop]

I've put 10-15 but it does vary between what my doctors want me to take and which medicines I actually take. I am supposed to take iron tablets but they upset my stomach so much that I can't tolerate them so they are not included in my numbers.

I just wanted to say "hear hear" to the comment about us not being ""normal or average" so not taking "normal or average numbers of meds". I guess most young women maybe take a contraceptive pill and one or two meds for common things like allergy or reflux. No-one in their right mind would take all the meds we do if they didn't need them (I suspect a lot of us stop taking stuff that doesn't seem to help us?).

Are you going to show the dr this poll?

Flop

[DancingLight]

Wow, thank you to all of your for your amazing support.

Melissa--I was gonna tell you you couldn't vote in this poll! Haha. I figured you'd have the highest number of meds.

Ernie--that's a good plan you have...I'd like you to stick around! My ANS doc did say that going off all of my meds would be disasterous so he didn't see options like Mayo or Vandy as feasible for me.

Flop--I may right down the tally and show it to my PCP, that was my thought if I got enough votes and responses to see if I could get a sense of things.

Mack's Mom--I wish I could fire her, but I really can't--Medical Assistance locks you into a PCP in an HMO set-up. I chose this PCP after my last awesome one left last year. I miss him so much. So far, I thought I really liked this doc, but she disappointed me so much yesterday.

I just felt so invalidated and you all validated me...especially those of you who know how darned hard I've worked to try to get treatment and some sort of functioning.

I forgot to add that when I asked for a referral to an endocrinologist, she said she wouldn't do the referral unless I agreed to go off of one of my meds!? She said that doctors give us pills to fix things and anybody I went to would give me another med to take. Luckily, I bargained with her, got the appt. adn didn't have to stop any meds.

Melissa--I think you hit the nail on the head that she is so new in this with me and the other docs have been treating me for years, so it seems somewhat out of place.

I also agree that it would have been much less offensive if she would have said, 'Help me to understand what this med is for." Like Corgard--no, most 32 year olds don't take that, but it's a first line treatment for Dysautonomia (and one of the meds she questioned).

I guess my point is....THANK YOU FOR YOUR SUPPORT AND FOR TAKING THE POLL. It really helps put things back into perspective.

Emily

[momofsara]

Hi, Sara is on 11 meds right now, of course it varies some with different flares. Her main problem is with docs who want to take her off her pain meds. She was even "cold turkey" treated by one doc at the hospital. It was awful. He wouldnt believe she had dysautonomia (even after I told him of her 3 positive TTT's) So in his infinite wisdom her jerked her off her meds and---well most of you know the results of that from personal experience. We ended up fireing him. Thank goodness he was only an "on call" doc we ended up with as a result of Sara being between PCP's at the time. She has chronic pain as a result of her surgery for Chiari malformation and her fibromyalgia. She would love to be off the meds, but as others have posted it is necessary for her to take them if she is to have some relief from symptoms. Her pain management doc has told her she would not be able to completly relieve her pain, much of her pain is due to nerve damage. Best to all--Susan

[Rachel]

I forgot to add that when I asked for a referral to an endocrinologist, she said she wouldn't do the referral unless I agreed to go off of one of my meds!? She said that doctors give us pills to fix things and anybody I went to would give me another med to take. Luckily, I bargained with her, got the appt. adn didn't have to stop any meds.

Wow - she was trying to bribe you to get you off one of your meds? That's actually pretty scary that she considered either denying a referral or refusing a med. I'm glad you were able to bargain with her, get the appointment, and keep all of your meds.

I hope this doctor learns soon about the seriousness of your health problems and your need for treatment.

Rachel

[bjt22]

Why is she so interested in getting you off meds? I cannot imagine a doctor who would attempt such a "bribe". I think I would ask her if she was interested in learning more about the conditions you are dealing with.

[Megan]

Being twenty, I get a lot of crap from doctors about being on so many meds! I voted 10-15. I could only think of 10 but I'm a bit brain foggy and I think there are a couple more I'm not thinking of right now. Plus I take a ton of supplements. I suppose some people like drugging up, but I don't happen to be one of them. I wish that doctors would try to be more understanding in areas they aren't experts on. And bribing people to stop medications? That is really scary. I would be running away from that doctor really quickly!

Meg

[willows]

Blimey , I take loads of stuff from tablets to sprays, patches, creams, gels, things you mix with water to things you inhale adding in and taking out from a set number of my daily tablets which at base line are 10-12 different types of drugs daily , so I add in and take out the rest as needed.

On a bad day I can take up to 15 different types of drugs double or triple up amounts , over a 24 hour period, so I could if really bad take upwards of 30 tablets if I need to .

But I also have painkiller patches, GTN sprays , eye drops, creams , etc if I add everything up it comes to a grand total of ............29 drugs of different types............all checked so that each one is safe with all the others and not once have I suffered any side effects from mixing them around , I suppose I'm lucky ,but i dont take what I dont need and never take more than the upper limit of any of my drugs without calling my doctor first and checking , better safe than sorry is my motto and its worked very well over the past 10 years which is when my vast amount of drugs started to build up.

Ami ...........rattling around the village

[Lizzegrl]

Between the POTS and Asthma my regular meds number 8-9. When I have flairs, and steroids and others are added - more. I have what is considered very good prescription coverage and my co-pays topped 500 dollars this month. I can't imagine what I would do without coverage.

[LastUnicornLady]

I only take one prescription medication right now- Florinef. I've tried Midodrine in the past and reacted very badly to it, but I'm going to try reducing the amount of Florinef I'm taking to see if the lower dose of that plus the Midodrine will be helpful.

Of course, if you included all of the supplements I'm taking... then all in all I'm taking at least 6-7 different types, and about 12 pills everyday.

[TCP]

I take 15-20 meds and many supplements. Each year I add more meds onto the list. This year I already have two new ones to add.

The meds help to control or manage the condition, but none of them are that effective and they do have side-effects. Meds don't repair or regenerate nerves, so I take the supplements to help repair and regenerate where possible.

[TCP]

Does anyone in the UK have access to Florinef and Midodrine? I'm not sure if they have been licensed over here.

[corina]

TCP, I think AndyBonse is on midodrine and/or both, you might want to pm him if he doesn't read this!

[sparrowkate]

Hi TCP,

We are in UK and have access to both Florinef and Midodrine.

I think Florinef is licensed but Midodrine is not. According to the POTS UK site, the license for Midodrine has been applied for.

Issy's initial prescription for Midodrine came from her POTS/EDS specialist in London. Our GP was happy to provide repeat prescriptions on the NHS once she had received written instructions from the consultant, although she had to check with our local health authority first. Incidentally, our GP has done the same with a paediatric dose of melatonin, which is also not licensed here.

We collect Florinef, Midodrine and Melatonin from our local pharmarcy. They have to order them as "specials", so they take a few days to come in.

Hope this helps. Hope you have a consultant who is able to prescribe for you.

Katie

[TCP]

Thanks, Ladies. I can't see my doctor prescribing either unless she gets some guidance from a specialist and as I don't have access to one anywhere near me, it may be a problem. Is this Dr Mathias(?) that you mention by any chance? I've not heard of any doctor being a specialist in this area and all the scores of doctors I have seen over the years (cardio, respiratory, gastro, neuro etc), have all just put my symptoms down to ME and nothing more and yet the nerve damage is the most crippling of all. None have really offered me any help despite me having notable symptoms.

Thanks for the information and could you tell me how to get in touch with the doctor in London?

Many thanks

TC

[TCP]

I found Dr Mathias and noted that he retired from the NHS last year and only takes on private patients now, however there are two other doctors who treat POTS and EDS patients.

[sparrowkate]

Hi TCP,

My daughter's specialist is a paediatrician, so I guess this is not what you need. However, a couple of our doctors have mentioned the Autonomic Clinic at UCLH for adult POTS treatment in London.

For EDS treatment, it is worth looking at the list of consultants at the Hypermobility Clinic at the Hospital of St John and St Elizabeth, London. Although this is a private hospital, we have seen some of these doctors on the NHS, and they work really well as a team.

Hope you find someone suitable.

[Tuesday]

How many I'm on varies from month to month, or day to day based on symptoms. But generally my "core" meds are around 7, and I can have up to 15 per day if I'm in a flare or have other symptoms popping up.

That doesn't include vitamins and other OTC meds. I've been told to stay on Vitamin D and B to offset deficiencies. Had a prescription for awhile but it's easier for me now to just get the drops and take those daily. Had a prescription for allergy meds for a while, but it's cheaper now for me to get OTC.