Drug info - Immune system problems on oxycontin

Discussion in 'Oxycodone' started by reetpetite, Dec 13, 2012.

  1. reetpetite

    reetpetite Silver Member

    Reputation Points:
    70
    Messages:
    39
    Joined:
    Aug 11, 2012
    from new_zealand
    Hi folks,

    Hope I'm posting in the right place, people here have been so kind & helpful to me before & I'm looking for more information & advice.

    I've been on oxycontin for pain for about 18 months, coming off for a year so far.

    In April my bloods started showing messed up immunoglobulin levels (IgA, IgG & IgM). They've stayed messed up since.

    Every time I get a tiny infection I have to go on antibiotics because my immune system can't deal with anything. I'm now losing my teeth :(.

    I'm on an urgent waiting list to see an immunologist.

    Does anyone here know what treatment is likely to be helpful (I've been told I need an immunoglobulin infusion, but that was only from a GP)?

    Once I'm off the oxycontin could my immune system sort itself? It will take me around 4 months to reduce the remainder (I was up to 210mg/day when I began reducing, am down to 60mg/day). That's not quick enough for my dentist who says my teeth can't wait another week.

    I read that OC can have bad effects on the immune system. I have health conditions anyway & this is just one more I don't need, but I'm guessing the OC is to blame.

    I'm guessing perhaps not too many people will have this sort of experience, but someone will & I'd be *very* grateful to hear any thoughts, advice, opinions, experiences.

    I might ask my hairdresser when I see him next. He's an ex heavy opiate user (he was on about as much as I was - I think that's a lot, right?) & I don't think it did his body any favours either, so he might have an idea, but I don't *think* he'll know immunology stuff. I could be wrong though, he might.
     
  2. out_there

    out_there Titanium Member

    Reputation Points:
    1,655
    Messages:
    1,318
    Joined:
    Oct 9, 2012
    47 y/o from Australia
    You are doing all the right things. Hopefully your immunologist will come up with something helpful. This is quite a difficult question and not many people would probably be able to help much with this sort of problem. Have you asked the GP about seeing a specialist regarding the immunoglobulin infusion? Surely it would be a priority to get a referral so that you can get the best and quickest answer possible.
    Regarding the OC use, after withdrawing your body should start to repair. By the way what were you on the OC for? There may be other options to treat what you have that wouldn't be so harmful to you. Let us know how you get along and sorry I couldn't be more useful.
     
  3. reetpetite

    reetpetite Silver Member

    Reputation Points:
    70
    Messages:
    39
    Joined:
    Aug 11, 2012
    from new_zealand
    Thanks for the reassurance hon. Anything helps.

    I've been referred to an immunologist. Unfortunately there isn't one here so I have to travel 5 hours by car one way (I'm very unwell & this is virtually impossible. There is a plane which would also be extremely difficult but might be how I have to do it). I'm on the urgent waiting list but they've said that could be up to 6 months. I really don't know. If I didn't have to go, that would be good, but so far so bad if you know what I mean. I definitely will go once the appt comes through.

    I was put on OC to treat chronic pain (& now I look up the studies & see it's of no use for chronic pain! Bah!). I have Ehlers-Danlos Syndrome, type 3 (Don't worry, no-one else has ever heard of it) it causes pain because the joints are hypermobile & keeping all joints steady so I can do simple things like stand, sit, type, takes a lot of energy - plus I can (& do) injure myself incredibly easily, just walking or turning a tap.

    I'm quite Pd at the pain clinic as they didn't offer me physio, acupuncture - I've followed both of these up privately, with great success in phsyio, and I got a TENS machine, again something else they could/should have offered me. My physio is disgusted they didn't. I didn't even have to tell her which physio attended my pain clinic meeting - she guessed by the fact he did nothing.

    Meanwhile I've had a call from my dentist saying that the other teeth he x-rayed are as badly affected as the one that fell apart the other week. He's very concerned over it. He can't treat me for all of it because he feels there are likely to be complications from it. He wants me under the care of a dental surgeon ASAP & asked me to get my pain doc to refer me to the dental school. Yeah, the pain doc was soooo interested. Not.

    I can't go private as there are no private dental surgeons here now. So have to go through the school & getting in is hard, which is why dentist asked if my specialist would do the referral. All this stuff "Can't wait" he says. I'm 37 & I'm going to lose my teeth. This is mental. Apparently every one that is filled has severe damage under the filling (I have great dental hygiene, it's my immune system that can't keep up).

    I've had antibiotics heaps this year for various reasons, including a tiny scratch that I ever even noticed - until it got infected & then it went crazy. My pain doc just doesn't get this stuff.

    It was my GP who said that in chatting to his colleague about my case he found out that OC can cause suppression of the immune system. That's when I looked it up & yes, it is in the side effects. Before that no-one could explain my blood test results. Except to say it's called "hypogammaglobulinemia".

    Maybe I am the only one in the world! This stuff has made my life hell. I've been withdrawing for a year now. I'm pushing through another withdrawal today (last one was started Thurs) because I can't bear to be on this stuff any longer.

    It's really wrecked things for me. You can see I'm not the healthiest specimen & I do tend to get side effects badly from things but I even went psychotic during withdrawal to the point my brain was telling me I had to kill myself (that's not me, not at all!).

    I will get better. But while I can rebuild a lot of things I can't get back my teeth. It never occurred to me I'd end up with long term damage.

    My pain clinic doc wasn't even interested when I got so bad from withdrawal that I was bedbound for most of this year - and then ended up suicidal. It's like it's not his problem. He's an old guy, he must have seen it all by now but I think because he can't solve me (although he was the first to diagnose me, thank him for that!), but I think he's pretty much given up on me.

    No-one has given me advice on withdrawal - except what I got here (thank goodness for people here, they have been wonderful). So yeah, me & hubby have really been managing on our own. My mum knows what's going on, & she's great too.

    Sorry for tirade. Have just heard about the teeth & am upset that I will lose them. Also couldn't ask my hairdresser as he had way bigger probs (his best friend died at his house so he's had police interviews etc plus grief. My problems are nothing compared to that).
     
  4. Oblomova

    Oblomova Silver Member

    Reputation Points:
    143
    Messages:
    57
    Joined:
    Apr 22, 2009
    from Australia
    Hi there reet - straight up I can't offer any useful advice or information. I just wanted to say, about the immunological and dental problems you're having, *bummer*. That's really too bad.

    I'm way (twenty years) older than you and having been taking oxycontin/oxycodone for 14 years now. At a much lower dose than you, supposed to be 40mg daily and in actuality very rarely more than 80mg. It seems to suit my body rather than triggering any unwanted response. So until now I've ignored the issue of side-effects and I'm really surprised to hear of these serious ones you're experiencing. About the teeth, that is really a pity - are you looking at having them all out, or can you save some? I believe I've heard that some antibiotics can have side-effects involving teeth, so all might not be due to the oxy - it's impossible to tell I suppose.

    You made a comment about oxycontin that "now I look up the studies & see it's of no use for chronic pain!" Can you remember where you read that, and can you point me there?

    ALso, about your pain management doctor, wtf? Did you get the necessary referral to the dental school at least? I suppose there's no possibility of changing to another doctor who is still interested in their work and their patients?

    Reet, your taper from 210mg - 60mg of oxycontin has been heroic. Congratulations. That is a lot of extra nose-dripping, to say the least, on top of the original trouble that the stuff was prescribed for. Don't ever believe the (punished and punishing) brain in those first 5 days of withdrawal will you. Make no hasty decision in that time.

    Especially as you're going though so much, it sounds like a great thing that you have some on-ground logistical and emotional support. Travelling sounds like a nightmare. Also I'm glad that you've found something that gives you a bit of non-pharmaceutical relief as a way of helping with the pain.

    Good luck, hope the immuno appointment comes through soon and 2013 brings an improvement!
    ----------------------------------
     
  5. out_there

    out_there Titanium Member

    Reputation Points:
    1,655
    Messages:
    1,318
    Joined:
    Oct 9, 2012
    47 y/o from Australia
    It sounds like your pain management doctor needs to retire! Is there someone else you can see? Really sorry to hear about your dental problems not to mention the general difficulties with your health and withdrawals...but like Oblomova said, you have done really well to get down to 60mg!

    I also see a pain management doctor here in Sydney and take a much smaller dose of OxyContin, but he has given me another non-opiate option being pregabalin trade name lyrica here. Perhaps if it is possible you could see a different doctor and explain the situation and ask about lyrica. It has also been reported on here by someone that it helped with opiate withdrawal. It is generally aimed at pain relief for nerve related pain.

    I really hope things improve for you soon!
    Best wishes!
     
  6. reetpetite

    reetpetite Silver Member

    Reputation Points:
    70
    Messages:
    39
    Joined:
    Aug 11, 2012
    from new_zealand
    Oblomova, I wish I could find an article - I can't. It was my GP who first gave me the heads up. Though when I began having trouble the pain doc said OC can cause pain (wish he's said that instead of "just keep upping it until 200").

    I know I saw it when I was looking up side effects. If I find it I'll definitely post it. I think my problem was the doc specifically said I should take it before I got pain rather than waiting until I was in pain. I've never treated pain that way - I always let it get really bad before I worry about it.

    I know the drug works for a lot of people. I hope like heck I'm in the minority & I don't mean to freak anyone out. I'm only here because things went so very wrong. People don't post if things are all going ok so don't panic if it's working for you eh? I'd very much like doctors to recognise just how bad it can get, just so they can support people if it happens. But if it's working & you're happy then it's fine. 40-80mg is no-where near 210mg, plus I have health conditions that really set me up for things to go wrong.

    You're not wrong though, withdrawal from this stuff is full on. I really went off the rails because I didn't have info on how to do it. I started reducing 15 mg/week lol!!! Then when doc said "nope" I negotiated 10mg/week until I fell to bits. You're right about the brain. I wish I had known though, would have been so much easier. Now I'm pushing ahead but as soon as I get anything like that (if I get depressed or crying etc I will be holding off).

    Cheers - don't worry about not having info or whatever, it's just nice to have heard someone else's experience.

    And out there - snap - I'm on lyrica too. It's been so good for the nerve pain. Too good! I'd love to get off it because it caused me a lot of weight gain. I was a skinny minnie a year ago! But it works so well. I'm down to 75mg but I can't go to zero. Wish I could as doc promises the weight will drop off me.

    My brilliant dentist sent me the referral to the dental school in the end. I wonder if he was impressed as I was with the pain doc's response. I suspect so.

    As soon as I'm off the OC I'll be leaving the pain clinic. They clearly have nothing to offer me. I was referred to this doc as he was supposed to be the "nice" one. He's prescribing my OC because my (ex) GP got a bit freaked over the doses I was on (even though I was coming off at the time!).

    He's not exactly been my hero since I wrote to him about the withdrawal effects & explained how close i came to dying. And he never acknowledged it at all. Even in my next appt he seemed pretty laid back about it. I know when he commented "next" it was a joke (he meant it I topped myself they'd just put another patient in my spot). But that on it's own with no support...well if I thought that he took me seriously it would help.

    Today I'm on 55mg.

    Bit freaked about getting the tooth pulled on Thurs...and finding out how many other teeth are involved & what needs done.

    It's an interesting thought about the antibiotics too. I have been on them a few times this year...

    Thanks for the comments & good wishes. I'm so pleased I'm getting closer & closer to being OC free...

    Edit: I've just had the most delightful (read "snarky") email from my pain doc. He's being very defensive about not giving the referral. I've not even responded to his previous email. I have no idea why he's felt the need to clarify (if you can call it that). I'm not at all impressed & frankly I'm pretty pissed off at him right now. I've written a response but I'm not going to send it until tomorrow. What a shithead (apols for language). I'm only responding at all as he seems to think my dentist was an idiot for asking for a referral (it was out of respect my dentist asked him).
     
    Last edited: Dec 18, 2012
  7. out_there

    out_there Titanium Member

    Reputation Points:
    1,655
    Messages:
    1,318
    Joined:
    Oct 9, 2012
    47 y/o from Australia
    Ahh you are taking lyrica! Hmm I'm kind of out of ideas.. Sorry to hear about the difficulties with the doctor again. Seems like a hard person to deal with!
    Did I mention meditation? My pain doctor actually insisted I do some meditation for him to prescribe oxy and lyrica. At first I was skeptical but it really helps even doing 15 minutes twice a day. With all the problems and anxieties you're having some natural mental relaxation/relief could be good.
    Hope you're doing ok with the lower doses of oxy and its really awesome your down to 55mg oxy and 75mg lyrica!
    Keep your chin up and remember you're not alone!
     
  8. reetpetite

    reetpetite Silver Member

    Reputation Points:
    70
    Messages:
    39
    Joined:
    Aug 11, 2012
    from new_zealand
    out there, I love your doctor!

    I've been meditating regularly since 2009 up to 5 times a day, 30 mins a time. BUT I have to admit to being extremely lax about it over the past few months. And you are so right - it helps heaps, to the point where I was pretty much able to function "normally" within certain limits as long as I did my meditation. Yes I should be doing it again.

    I think I stopped because I find it really hard to focus when I'm in withdrawal. And I'm pretty much always in withdrawal. No excuse is a good excuse though. I could set my goals for less time & a couple of times a day is way better than zero that I'm doing these days. Right. I'm doing it!

    The other thing I've found that kicks pain's arse is playing the guitar. I don't know why. Maybe it's not the playing but the singing (which I'm really not good at but I do anyway - hubby thinks I'm good & he's the only one who has to listen!). Surely it can't be getting at endorphins under all that OC? But that's when my pain is at it's best. Even playing piano doesn't come close! Though I'm not singing along to classical music lol.

    I really want to email my pain doc telling him he's a plonker (but change the first 3 letters for two different ones).
     
  9. out_there

    out_there Titanium Member

    Reputation Points:
    1,655
    Messages:
    1,318
    Joined:
    Oct 9, 2012
    47 y/o from Australia
    Cool that's great about the meditation! Yeh I'm really lucky to have such a good doctor. He gives me hour sessions and charges through Medicare so I don't have to pay. Maybe we could swap notes on meditation. I've been a bit slack over the past couple of weeks too. Finding it hard to clear my mind and focus.
    Nice one with guitar too. I'm a guitarist but can't play because of this spinal problem which is really frustrating. Glad it helps you and great you have a supportive husband. Dunno what I'd do without my gf.
     
  10. reetpetite

    reetpetite Silver Member

    Reputation Points:
    70
    Messages:
    39
    Joined:
    Aug 11, 2012
    from new_zealand
    Update again.

    Things are going reasonably well, all things considered.

    I'm down to 7.5mg a day (would you believe it? I have trouble believing it). I'm taking 2.5mg 3x a day.

    I'm not well though. That withdrawal every week over more than a year so far has really taken a toll on me. I spend an awful lot of time in bed. It's not been good for my pre-existing health condition. That's suffering.

    Plus I have another "bug" at the moment. My hubby has begged me not to withdraw from anything for a fortnight. I agreed to one week. Usually I'd just go ahead & withdraw even though I feel rubbish. But I'm really not well & can't handle it.

    My dental problems seem to have settled. They've obviously not improved but they seem to have stopped deteriorating.

    I know everyone says the last of the withdrawal is the hardest. I have had a remarkably good run with the last 3 withdrawals (2.5 mg each time). I hope the next few with go ok, but mostly I just hope they go. At the moment I'm not decided whether to try dropping another 2.5mg next, or whether to go to 1.25mg drops. I think I'll try one more 2.5mg drop. Anything to just get this over with.

    Anyway, that's the update. Thanks for the support. I would have been clueless without the support & info here. I'll be back to let you know how the rest goes :)
     
  11. out_there

    out_there Titanium Member

    Reputation Points:
    1,655
    Messages:
    1,318
    Joined:
    Oct 9, 2012
    47 y/o from Australia
    Hey that's great! Congratulations on getting to such a low dose! Have you still been meditating? I've been struggling since my operation to keep focus but I'm still trying.

    It's really good to hear from you anyway and it's great that your husband is being so supportive. And it's good to hear that the dental issue seems to have sorted itself out. Over all it is very positive news!

    Keep up the great work and don't forget to keep us updated!
    Best wishes!
     
  12. Meabhsnan

    Meabhsnan Newbie

    Reputation Points:
    0
    Messages:
    3
    Joined:
    Sep 2, 2012
    from ireland
    reetpetite, a quick question, I am in similar position to out there re spinal surgery and withdrawal from oxycontin and gabapentin. I am tapering by 5 mg at a time, my doc says this is the smallest tablet available. It sounds as if you have smaller tablets? Doc also advised if symptoms got unbearable to cut an oxy norm (IR) and take a small bit to take off the edge. If smaller pills are available I would rather use those! I am in Ireland btw.
    Sounds like you are doing great, congratulations, everyone around me says take it slowly, no rush, but I want to be free of all this stuff and get my life back!!
     
  13. reetpetite

    reetpetite Silver Member

    Reputation Points:
    70
    Messages:
    39
    Joined:
    Aug 11, 2012
    from new_zealand
    Hiya,

    No, I think 5mg is the smallest. I got advice from my pharmacist that I could cut the pills. I think there are a couple of different types of oxycontin out there so I'd say check with your doc/pharmacist before you cut pills, but I was told the coating isn't what makes it slow release, it's the matrix of the pill they said.

    You can get liquid though - so in theory you could use that to go down to 1ml & even 1/2 ml doses (thanks for reminding me of this, I'd forgotten though it was originally in my plan!). That could be used to "take the edge off" withdrawal.

    Good luck with your withdrawal hon. When they say "don't rush" they mean it - I went far too quickly & I promise the symptoms aren't worth it. It's honestly really bad & I'm not sure I can begin to describe how bad. It meant I had to go backwards & increase again for a while. Better to go slow & keep moving forward.

    But I know what you mean - I just want OFF! I wish I could get off the pregabalin (a cousin of gabapentin) but the pain is so bad. I'm already on the lowest dose available here & I think I need to be on a higher dose really. But I've gained so much weight on it.

    You'll get your life back. I hope the spinal surgery has made the difference you need.

    PS - Out there, no I've not been meditating again, in spite of meaning to. Silly. It would help so it makes sense I should do it.
     
  14. Meabhsnan

    Meabhsnan Newbie

    Reputation Points:
    0
    Messages:
    3
    Joined:
    Sep 2, 2012
    from ireland
    Thanks for reply Reetpetite, hope you are still doing well. I am on gabapentin, tried Lyrica but it didn't suit me. My doc also gave me Cymbalta, ( duloxetine ) an anti depressant which can help lower back pain, he said it may help my pain but if not not at least I would feel happier about it, and he was right! Don't know if you have anything to help you that way but it may be worth looking into, it is the drug I am going to save till last to come off, lol. Best wishes with your withdrawal.