Hello. I'm 47 and have a number of co-morbid diseases including progressive relapsing MS; Alpha 1 (genetic disease affecting lungs and liver); severe progressive respiratory weakness leaving me on oxygen 24/7; fibromyalgia, osteoarthritis and a number of other diseases.
I have been on pain meds (at one time oxycontin 40mg 2x per day) but for the most part on 5-15mg oxycodone every 4-6 hours. I am also on ativan 1mg every 6 hours for bad anxiety; muscle spasms etc. I am also on beclofen for MS spasticity and bentyl for stomach pain/spasticity.
I have been seeing a neuro who does pain management for 5 years but was frustrated that he couldn't find solutions to reduce some of my meds over time. I have been separately seeing a separate neuro who is focusing on my non-MS neuro issues. i went there yesterday requesting that he take over my pain mngmt and ativan rx with a goal of reducing them over the next 3-6 months....Okay so I go across the hall to my PCP appt and am told they will bring by the RXs for me while I'm there.
When I finally look at them as i'm being transported home on paratransit, i note that he has switched me from the 5-15 oxycodone to 10mg oxycontin every 12 hours but he has given me 30 to last a month....I'm thinking that can't be right?? how does that help me slow down and what to i do for the other 2 weeks. The ativan prescription is written for .5mg instead of the 1mg i've been on for 7 years.Again I'm thinking how am I supposed to jump down from 1mg to .5mg in one day.....
So I call them back and the doc returns the call and says yes the prescriptions are correct. he's concerned about my progressive chronic respiratory weakness and that simultaneously these meds are depressing my respiratory system and yes, he wants me to get off of these meds now/immediately..i.e. in about a month.
I responded re that i have very severe pain and when untreated; usually end up in the hospital with relapsing ms symptoms and that this was really not what i meant when i asked if he would consolidate my neuro care....I said i'd think about it and decide if i was just going to go on ahead and keep seeing my pain mgmt doc..
The crazy thing is he knows the meds I'm on...there was never a lack of knowledge on this..and I AM THE ONE who brings up the desire to slowly titrate down off these meds etc.
My question is what is best when going off meds. I have many allergies and can't take patches for example or any of the alternative pain meds like neurontin, lyrica and cymbalta. Is taking such a quick path to getting off meds a good thing? Should I go back to the pain mngmt doc seeing for 5 years. I cancelled the appt for tomorrow just yesterday...maybe i was too hasty and can easily reschedule or should i try this docs approach and try to get back off these chronic pain meds.....
I would go back to the pain management doctor you have been seeing, and have that doctor wean you off, if that's what you want to do. He/she already knows you, it will probably go alot easier in the long-run. Just my "2 cents"! Good Luck.
Welcome to the Pain Mangement Forum. I am very glad that you found us. I am however very sorry that you have multiple co-morbid diseases that are presenting multiple medical issues and pain.
I am wondering why you wanted to discontinue these medications when in the past you have ended up in ER? All of us would like to discontinue taking our pain medications but we know the consequences. How did you intend to manage your pain issues if you have been on medications for five years and your condition is not improving? Maybe it sounded good at the time. I think we all have those moments. If you truly want to stop taking narcotics than follow the the suggestions of the Neuro you just saw.
If you did not fill the prescriptions I think you will be safe in returning to your PMP. If however you filled the prescriptions you may be in violation of the PM Contract. If you have not taken any of them take the full prescriptions on your next appt with the PMP and simply tell him you made a error in judgement. Obviously the PMP is more qualified to manage your pain and wean you off the medications if that is what the two of you determine is the best route. If it were me I would stick with the neurologist that is the PMP. He/she best how to treat your pain.
Whatever you decide we wish you the very best. We are here to support you. Good luck to you and please keep in touch.
I agree with seano. The doctor you have been seeing for five years is the one I would depend on as far as PM. I believe he will help you and also keep your pain levels manageable too.
I do want to make one thing very clear though. Take the prescription you were given by the other doctor in and explain why you got it so that you will not be seen as a doctor shopper. This will automatically get you thrown out of PM.
I urge you to do this right away!
Just explain that you want to slowly get off of the medications but the doctor wanted to do it to quickly for you.
These drugs do suppress your respiratory system so be aware of this and also talk to your PM doctor if your concerned with this being a problem with you.
Well at this point, because i cancelled the appt on Th which would have refilled my pain meds and the doc now can't see me till 12/1; i had no option but to fill the script as it is so i can get by with something.....and i see no problem here...The pain mngmt doc had asked me before over the last year that if i could find a more local doc who could manage my pain mgmt care that would be the best but there are few docs up here and none work with pain mgmt...
One of the main reasons i wanted to reduce my pain mgmt amounts was because of long term respiratory problems which are being referred to as pulmonary weakness due to the MS and other neuromuscular involvement....and so that is the reason that i was trying to reduce some of the strength of the pain meds in order to be safe from a breathing perspective. Exactly what you write about oabove re the possibility that the multiple drugs that i am on including pain managemnt, anxiety meds and other t sedating meds such as beclofen and bentyl used for spasticity common to MS and to peiople with stomach problems....so I'm in a bit of a quandary now because obviously my other neuro is not going to work with me to "slowly:" titrate me down on the meds if possible and got to some extent snippy and ugly about it althogh he has seen me for 10 months now and knew perfectly well what meds I was on and why....and it was totally my question and issue about wanting to reduce over time my pain ngmt needs if at all...so when I do go back and see my PM neuro; if he asks, i will tell him point blank that i triied to work with the other neuro but he proposed to push me off the meds in 10 days or less and that was not a plan i was comfortable with nor could i be compliant....and just proceed on....but now i'm also reconsidering whether I want to see this second other neuro who has some speciality in alpha 1 for example because i really didn't like how he handled the situation...so something else to consider as well....also I have asked to be put on the wait list for my normal PM neuro doc and hopefully will be able to get in sooner than 12/1.
Yes, i will definitely keep everyone up to date. For now, i am laying in bed because i am too weak to sit up; common it seems to my MS. I took one of the 10mg oxy and indeed it does treat the pain in a way that i am not having to keep taking oxy ir.....and i may even have my first PMDOC on 12/1 about use of 10mg oxy vs giving me 5-15mg to take every 3 hours....the longer acting makes the pain itself not so dragging on me and constantly watching the clock and i how i feel knowing how many hours and minutes before time to take other meds....
and why i couldn't figure out why he would give me only 12 hours of oxy per day 10mg....i.e. I would run out completely after 15 days...no way to tone down what i am taking over time...even if that was my goal....i mentioned i still had 2 weeks at least worth of the 15mg IR which can be cut in half....and that personally is how i will get through the next days before the appt if i can't get a sooner work-in but it feels really irresponsible what he did...to say yeah he'd manage the medication and turn around and write me rxs that don't meet my needs and could be very dangerous in turn.
he points to my respiratory weakness which is of course a dangerous side effect of being on pain meds....but i;ve been on pain meds to some extent or another since 2002...the respiratory weakness started in mid 2008.....and I was on very high oxys starting in 2006...so you can see my concern...and feeling this doc has no cares about my needs, the impact his rx changes could have had i.e. if i had no pmdoc to fall backup and so until then I wait.
Julie, I am very sorry this is happening to you. Unfortunately us chronic pain patients are often treated like this. If we look at a doctor sideways he or she has the right to get snippy, change the meds when it makes no sense and in the end send us home in pain, feeling alone and not knowing how to deal with this pain. I'm happy we have medhelp just knowing there are others out there listening and who care.
Please go to this 12/1 appointment and if possible have someone with you. Bring your medications with you. Have it rehearsed so you use your time and the docs well. Explain your desire to reduce your meds and why. Then how it was done, without any discussion and that you got home and saw the prescriptions and were shocked at the dosage and amounts. And how it affected you through the month. I wish you luck.
Thank you everyone for responding to my message about my attempt to have one of my neurologists take over writing pain management RXs for me versus having to go to 2 separate neurologists (each 120 miles apart or about 3 hours each way on the paratransit bus) each month.
as it turned out when I called the receptionist back and asked about whether I could see the physician assistant instead of waiting till December 1, I was able to schedule an appointment for only a week later or two days from now.this particular doctor has asked me in the past if a more local doctor to me would be willing to manage my pain management medications. And I like this other neurologist and I thought that we were on the same page first that I wanted to consolidate medication management so I was not seeing so many different doctors and finally my personal goal of slowly reducing some of the strengths of my medications monitoring my symptoms to make sure that this was a good decision.
while the doctor verbally appeared to be in agreement and understood what I was asking him to do; it was quite obvious that he was not supportive of my needs and perhaps my first clue should have been when he said well I am going to get all your prescriptions ready and I'll give you your prescriptions as you're leaving your other doctors appointment at the office next door....and then on the way home on the paratransit bus; I was canceling the appointment two days laterwith the other Dr. and only after doing that I looked down at descriptions and actually see what he had written. Normally I always liked half the prescriptions handed to me before the doctor leaves the room regardless of what the medication is so that I can make sure that it is for the correct strength and the correct dosage and amount because doctors will often make mistakes in any case.
and when I called back the office and finally spoke to the doctor the next morning I was very very surprised by the way he dismissed me stating that I was on way too much pain medicine and it was crazy for me to be on all this medicine and how such severe breathing problems. It seems odd when I review my medical records from all of his previous visits where he had reviewed my medications prescribed from all of my doctors and was well aware of the different medications that I was on and for what reasons.
Later this week, I will see the physician assistant in the pain management practice who I have seen before and he will be prescribing the same medication protocol that I have been on for several years.I probably will not even bring up the fact that I had tried to have my other doctor take over the pain management since I didn't need to fill the prescriptions and I will not be using the other Dr. for pain management
but to tell you the truth the way he treated me and spoke to me on the telephone makes me reconsider whether I want to retain a doctor patient relationship for other medical conditions that he has been treating me for since January.
Several of you asked why I would want change and have another doctor manage my pain management. first related to several of my medical conditions are increasing shortness of breath and other pulmonary problems which are either associated with alpha-1 a genetic form of emphysema but most of my doctors believe that the most debilitating pulmonary symptoms that I have are associated with my multiple sclerosis or some other neuro- degenerative disease sitting on top of my already diagnosed multiple sclerosis. It has been my observation or perhaps my concern that I am on regular prescribed narcotic medication for severe chronic pain and breakthrough pain; but I am also on medicines to reduce spasticity for multiple sclerosis; another medicine to reduce severe stomach spasms; and finally I take ativan for anxiety. I have felt that it is possible that I am being over sedated with these medicines and perhaps they are impacting my worsening pulmonary problems as an example. It is such a difficult topic because if I reduce the medicines that I am on I may have more control of my muscles but then I am in much more severe pain. so while there are good reasons that I may have or even my doctors may agree with about trying to change the medications; they come with problems such as the increase or rebound of even more pain which makes me more likely to remain confined to my bed as an example; which causes a whole host of other problems including reducing the strength in my legs for walking because I am always in bed.
but beyond all of this has been my desire to reduce the number of specialists who have to see me every 30 days.I always liked to joke that being disabled is more than a full-time job. At present every month I have an appointment with my primary care physician, my rheumatologist, my pulmonologist, my pain management/neurologist; the neurologist that treats me for a genetic disease, my hematologist who I typically must see every other month, and my GI doc. each of these appointments involves going to a doctor who is at a minimum more than 80 miles from my home and requires a very long bus ride down the mountain. As an example today I have an appointment at 1:45 PM. The paratransit bus arrived on time at 11:50 AM and we were still late due to heavy rain arriving at about 1:55 PM. I was checked in but not even seen till about 230 but then the doctors spent more than 90 minutes with me at least because I was not back on the paratransit bus again until 430 arriving home at about 630. And that is just seeing one Dr.
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