I mentioned in my previous thread that my medication price more than tripled so my doctor changed my medication from roxycodone 30mg 4x daily to endocet (oxycodone/apap 10/325) 4x daily. I started to experience withdrawls going from 120mg to 40mg of oxycodone daily. I stuck it out for the weekend (was changed meds from roxycodone to endocet on Friday and went in to the office in tears on monday of last week). On monday the doctor put me on 4mg dilaudid. I asked if they were stronger than the endocet and he said they were, and he gave me a prescription for 90 of them to last aprox. 25 days (as he gives appts every 28 days). He prescribes an amount for 30 days and tells us that we can take the extras for times when pain is worse. So it's usually about 2 days of extra meds so about 6 on 3 a day.
To the point: Taking 3 a day isn't cutting it. By the time I get to bed every night this week it seems I've been taking at least 4 a day. This is stretching the meds out 3-4 hours and with the roxycodone I'm used to taking one every 3-4 hours. It just doesn't work with the 3 a day as I am usually up at least 16 hours and 3 daily at 3 hours each is only 9 hours of pain relief. I've talked to the doctor about this and that is why he had me on 4 roxycodone a day.
When I first started the dilaudid, last monday, I thought I was going through oxycodone withdrawls and was having worsened pain because of it, so I figured I would only need one extra for a few days until the extra pain from the oxycodone withdrawls was over. Now, I did beat myself up a little bit because, being pregnant, withdrawls are nothing to mess around with, but I thought that it wasn't that bad as long as I wasn't having any symptoms other than worsening pain, a little more sleeplessness, seriosu fatigue, and feeling more nauseated. (I guess when I spell it all out there it does sound like a lot of symptoms) But it just doesn't seem like the withdrawls are going away, or maybe there were never withdrawls and this is what my pain is like when it's not well controlled. I've had it well controlled for over a year up until now and I do remember a lot of misery before, but it's easy to forget how bad it was when it was so long ago.
So today I've had a serious flare up and ended up taking 5 of the dilauded. I've been up for 17 hours now and I went to Barnes and Noble with my kids and somehow that sent my shoulder/deltoid into agony.
So here's my question/dilemma: I know even with the extra one a day I've taken I still have enough for 3 a day until my next appointment. I know I should have called the doctor again on Tuesday or Wednesday to tell him I didn't feel the medication was working and my withdrawl fears. I guess my reasoning was that I should "give it time to work" and the doctor just seemed so irritated on Monday that I was having trouble with the endocet that I am a little afraid he'll be angry with me because the dilaudid isn't working.
Should I call him on Monday to let him know it's not working, or should I tough it out until my appointment (or as long as I can) taking only 3 a day? I'm really not sure if I can do 3 a day, but I know I don't want to run out early, so if I have to I'll suffer for the next 2.5 weeks. I always believe in being honest with the doctor and I will tell him how many I have been taking every day, etc. I just don't want him to be mad at me because the dilaudid isn't working. I guess I just don't want to cause a problem with my future care.
I'm sorry if this isn't very clear and will be happy to clear something up if I'm not making sense. I'm just sitting here in so much pain I find myself holding my breath and I'm usually in bed by now so I'm a little out of it I guess. I think this problem is part of why I'm not sleeping, because I'm worried about what I should do.
Thanks for listening, any advice or comments will help a lot.
Hi Bree. Would you be able to make an actual appointment with him instead of calling? Things get misinterpreted over the phone sometimes. Two and a half weeks is a long time, and you don't want to run out because (in my opinion) it wouldn't be safe because you're pregnant.
From what I have read, I am not surprised that you are going through withdrawals. You're right, you have a lot of symptoms! Could this be his way of getting you to taper? If so, he should be upfront with you about it. Or, maybe he truly believes that the doses have the same effect.
When I read about dose equivalency, it seems that you're on the lower end. I may be wrong though.
I'm so sorry that you're going through this. In the past, I was prescribed hydromorphone, and it didn't help me much, but I know that it can be very effective for some.
"Make him mad?" I would not be concerned with that; you are suffering in pain. As Flower 12345 has recommended see if you can actually have a visit with the physician sooner if possible. I would be calling his office FIRST thing Monday morning.
Flower, he thought that the endocet was 80-90% as effective as a roxycodone 30mg, and that they last longer. My husband was with me at that appointment and said he really felt that the doctor believed what he was saying.
Londres, I know you are right. I think I will do that. I think I just needed a kick in the *** from the lovely people around here who know what they're talking about.
Londres is right. You should make an appt. There's no need to suffer. You don't need added stress. You have a little one in your belly...that's enough without having chronic pain. Add not having enough medication, and it just seems to be too much to me.
I hope you had a better sleep last night. I feel so bad for you.
I think that your pain management is a little more complicated due to your pregnancy. I've learned that withdrawal and chronic pain can be more difficult on the fetus than discontinuing the narcotics but that's about all I know.
Unfortunately withdrawal can take many weeks. But who's to know if your symptoms are not aggravated by your pregnancy and the decrease in pain control over the withdrawal? It may be a combination of all three.
I think you primary question is if you should contact your physician. That's a yes. However in my opinion it's what you say with that phone call more than the call itself. If you call to inform the PMP of your symptoms to "check in" so to say I cannot understand why he would be angry with you. After all you are pregnant and your medications are being adjusted. Let your PMP take the lead. Rather then requesting more meds or a change of meds, inform him of how you are feeling. In my experience physicians react much better to a simple "help me."
Dilaudid is a very potent opiate. You are on the lower end dosage as Flower pointed out. Due to your pregnancy your PMP may be concerned with the effects on the fetus and hesitant to increase it. As I stated earlier, I am not very familiar with pain management during pregnancy. We have had expectant posters in the past that we required to go to extremely low doses of opiates until after the birth of their baby... and.. beyond if they chose to breastfed.
I too am very sorry that you are going through these painful symptoms. My heart goes out to you. Please share with us your decision. Hang in there, your struggles will be worth it when you hold that precious new bundle for the first time.
I agree with the no need to suffer, but I also understand that I will have to taper down. The PMP and I have talked about it and agrees that we should wait to taper the most until after the risk of very premature delivery is over. I've been getting the braxton-hicks again but he didn't seem to be too concerned about that. The plan was to taper down as much as possible towards the end of the pregnancy (I'm due in December).
I think reaching out for him to help me will be the best way. I guess my biggest worry has been that his office has refused to give me an appointment sooner than 28 days before even when I felt that the medication wasn't working. (I've only asked once, and that was for an appt a week early) So in the past I've just dealt with the pain and reduced my dose (but only for less than a week at the end of the month by one pill a day).
The staff did seem to be very kind and I was thinking that if I called the office pharmacist and told him my problems and symptoms, he would be able to tell me what the doctor can or will do. The receptionists don't really know much about the medications.
I should mention that the doctor was an OBGYN, then worked with public health, before becoming a PMP. That being the case, it worries me a little that he's not more concerned about the braxton-hicks contractions.
I guess it would be different for me if he had reduced my dose because of the pregnancy, but this is like a substitute for medication that we both were comfortable with and had to change because of the price only. If I had known it would be this much trouble I would have driven across the state to find a pharmacy that would fill my previous regular prescription. I had no idea this would be so difficult.
Thanks for your understanding and advice. As bad as it is I know having something is better than having nothing at all.
I just wanted to post and ask for prayer as well. For my mind and my body, and the baby. I will not allow myself to run out so if 3 it is, 3 it is. I also talked to my husband today at length about it (he's been working 15 hour shifts so I haven't had him to talk to) and he helped me to see that I really haven't had any serious withdrawl symptoms and taking 3 a day is not the end of the world. He was very kind and understanding about it and told me that he doesn't expect me to do anything around the house. (Although I still feel that he kind of does) Just the acknowlegment of taking the pressure off me and getting to pour it all out to him helped. I hadn't wanted to because he's been working so hard and I hardly feel I have room to complain when he's pulling 15 hour shifts, dealing with his own CP (that he doesn't take prescription meds for anymore), an his own sleep deprivation.
I think the biggest problem here is my fear of sticking up for myself. I hate to complain about anything, ever, but I really feel stupid this time for not speaking up sooner about my meds not working and the withdrawls. This was completely avoidable. I know I am letting my anxiety get to me but I worry that the baby has felt withdrawls and I should have done something. I just don't like confrontation and I'm afraid of the doctor being mad that I have needed to take extra in the first week and that I didn't speak up about the withdrawl symptoms I've been having. I think that is my worst folly here, that I didn't speak up sooner (and that I overthink everything).
Anyway, again, I just need your prayers and good thoughts for my body and mind (and baby). I'm going to go find something productive to do and take it easy. Sometimes hanging around the PM forums make me think about the pain. (I can't imagine why? ;)
I'm sorry that I wasn't on when you FIRST posted this!!
I'm so sorry that you are having to go thru this. I AM grateful, as you are, that you at least have SOMETHING!!! I'm so sad that the pain is so bad for you right now.
Tuck NAILED it on the head when she suggested that you call and TELL them the symptoms and let them LEAD you in the direction that you should go. That way you won't antagonize ANYONE and yet HOPEFULLY, you will get some answers that will help your pain.
If you want to talk, JUST PM me again and I'll be there!!!
Take Care of you and YOUR Little one!!!....Mama Sherry
Thank you, everyone. I really appreciate your advice and concern. I feel more confident about it all now. I have managed to space the meds to one every 5 hours today. It hasn't been easy, but I am hopeful about tomorrow. I know I'll be okay. I will definetly give him the symptoms and let him know I'm still having pretty strong pain and see what he suggests. I will live if he doesn't change it. Being worried about being in pain, and that compounding into stress and troubling my mind all the time has been a problem for me. So I am going to make a point to focus on other things and keep my mind productively busy as much as possible.
Thank you all for listening and giving advice. :) I appreciate this forum so much.
I feel so bad for you. (I feel so bad for all of us, lol.) I can't imagine going through all you are AND being pregnant. (I have four kids and lost one baby at 4.5 months. Pregnancy does not agree with me. It flared up my arthritis, couldn't sleep, never felt great. Labor, on the other hand, for me, was a BREEZE!!!)
I was given Dilaudid after my last surgery in March. They thought because I was on so much that changing to Dilaudid would be good for post-op pain as it was stronger than the oxycodone. (I forget the dosage they gave me.) It was like taking NOTHING. I had terrible post-op pain. My pain clinic was managing the post-op pain, not the surgeon. The pain clinic was checking on me and kept telling me, "Take another pill." The first night was horrific. The next day she changed me back to the oxycodone but a higher dose and that did the trick.
Maybe Dilaudid just doesn't work for you. I never realized that you could take a really strong pain med at a very high dosage and have it be like you took nothing at all.
My first two pregnancies were a breeze, I felt great, everything was great. Of course, that was 13 and 10 years ago. Looong before the injury. This pregnancy was a big surprise. It came a week after a miscarriage that was also a big surprise. We didn't think we could get pregnant within the week after the miscarriage and surprise, we could. This pregnancy has been filled with morning sickness and a lot of pain and stress. I'm trying to enjoy being pregnant as much as possible, but it's difficult with a pre-existing condition.
The dilaudid feels a lot like taking advil and tylenol together. Which is really strange as I have been given in through IV in the hospital, but I wasn't opiate tolerant then. I was hospitalized for migraines and was so out of it from the dilaudid that I barely remember the three days I was there. I've also had times when I've re-injured myself and they've given me dilaudid in the hospital, although my husband did notice that it didn't knock me out like it did before.
Maybe I've built up a tolerance to it? I hate med tolerance. I miss the days when I could take two advil and be good to go.
My husband thinks it would be best if I go into the doctor's office as opposed to call, like I did last time. It did work out last time, but that wouldn't be so much a "checking in" as a "Here I am, help me", thing.
I'm still debating which I should do.
Just wanted to say again how much I appreciate you all. Reading through the messages again gives me courage to speak up. :)
Thank you all. I went in. They don't allow early appts, so the receptionist talked to him between patients. She said that because he had already written a narcotic prescription for the month I have to wait for next month.
I just quietly said "Ok, I'll deal with it." and she was very sorry, but that's just the way it went.
I am trying to look on the bright side in that it's only 2.5 weeks, not 4 or 5. I will just have to find was to keep myself distracted.
I still appreciate all of your advice and good wishes. Hopefully the next 2 weeks will go by quickly for me.
I'm so sorry that that happened. I don't even know what to say because to me, it seems that he lowered your dose and now just won't go back. I mean, I could understand if it were because he wanted you to wean for the baby if you were late in the pregnancy, but this, I do not understand. It was initially about money, so why won't he change it. Sometimes, I don't understand people...I guess that he wants to be careful not to write too many narcotic prescriptions in a month, but he could have written you one for a week originally and told you to see if it covers your pain. Are you still experiencing Braxton Hicks and withdrawal symptoms? Can you really rest for the next 2 1/2 weeks?
I haven't had to go through what you are during a pregnancy. However, during a couple of my pregnancies, I did have to be referred to specialists for various reasons. It was so obvious that doctors do NOT want to be dealing with a pregnant woman. It was much easier getting treated early on in pregnancy, but I swear as soon as I was showing and later into the pregnancy it seemed that everyone ran the other way. I was once referred to a cardiologist to make sure I wasn't having heart issues. I spent a half an hour on the phone making the appt, giving them all my info etc. Well I showed up for my appt, and they had no record of me or my appt. So frustrating! So maybe your doctor is nervous about treating you? Just another thought.
Take care, and I hope you feel better really soon!
I am sorry I am just now responding Bree. I wasn't on much yesterday .I feel so bad for you that you are still having so much pain .I don' t understand why your Dr wouldn't change it .I mean with your little one I would think he would not want you to suffer .It's such a shame that you are not able to really enjoy being pregnant like you should be able to because of your pain and worry .I was never able to get pregnant so I don't know what it's like .My child was adopted . I have been with my sis through all of her pregnancies (she got all the fertility in the family) but that's not the same .I will keep you and your sweet ,little one in my prayers .This should be such a happy time for you and I can't imagine being pregnant and having such pain issues too. Take care sweetie Melissa
Thank you all. I find it hard to understand as well, but it might be like flower said in that he doesn't feel comfortable writing more than 2 prescriptions for a patient. (As he wrote the endocet before that) It seems like it would be okay because I turned in all of the unused endocet but there's nothing I can do about it now.
houseofgirls- You are very right. Most of the doctors I've seen seem to cross themselves when they see me coming through the door. I had a similar "non-appointment" with the original OBGYN I saw. The high-risk doctors even seem to be a little freaked out because of the meds I'm on. I guess it's just a huge liability. I had to have an MRI/MRA done on my brain because of two aneurysms and the hospital that did it could hardly believe that the doctor would order one in pregnancy. Luckily the tech who did it had had to have them while she was pregnant and she was very reassuring.
melissa- Thank you for your kindness and empathy. I'm sorry that you've never been able to have a pregnancy. It's really wonderful that you chose adoption, though. That is a much longer waiting period than 9 months sometimes and can be so stressful. I have seen that it can be painful not to be able to be pregnant and I appreciate your prayers all the more.
I think having the forum here has helped me build strength to be able to deal with the pain. Knowing that I'm not the only one who has to grin and bear it is such a comfort when things get tough.
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