Its been a while since I was on this site. Had a break whilst I moved and sorted a few bits out in my life.
Just a little bit of info so you might be able to help me better.
I was diagnosed 2010 been on all sorts of meds and have finally been given Campath. This has been my saving grace.... Literally. I have had 2 courses now and I am doing great apart from the pain....................................................
Now I have had pain on and off since I was 23 (now 29) and only usually during flares and mildly all the other times until last Feb. The September before my body started to become immune to the effects of my Humira and things started to slip again. By the Feb I was on a slippery slope down again and after a stay in hospital for a suspected blood clot the pain just hasn't left me. I am now taking tramadol everyday and oramorph for when its really bad the only thing is this doesn't seem to work and I don't think i've had a pain free day in 18 months and this isn't just a little ache we're talking about either this is so painful I can't sleep, walk and makes me want to throw up, red hot pokers in you joints kinda pain.... i'm sure you'll all know how that feels... now i'm generally pretty good a putting on the smile and the 'i'm fine' act but this morning after no sleep last night I cracked.
I'm sick of the Dr saying 'we'll wait and see if this works' I need something and need something NOW!!! The pain clinic have been useless to say the least.
Sorry to go on, I will now get to the point :)... so at my lowest point last year I was offered Fentanyl Patches and was a bit scared of addiction and coming off them when i needed to but now I feel like if i have to wake up in pain 1 more day i might do something silly... has anyone got any experiences (bad or good) i would love to hear them... Many thanks
FF x
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Pain is just awful, and can drive you to the edge for sure.
I too have problems with it. I was prescribed Butrans patches for pain which worked on the pain but I got some extreme headaches so my GP has asked me to come off them.
Like you I'm managing just now on tramadol and oral morphine and still having unbearable breakthrough pain. I'm at clinic on 25th so that is keeping me just about sane.
Sorry I don't have answers, but I wanted you to know that you're not alone, there are several of us in the same boat and I shall let you know if my specialist suggests something new. It's mainly the joint pain but also an extreme pain in my thighs that I can't mask......I'm also having problems with them almost crawling internally keeping me awake or waking me up.
By the way I think if you are considering "something silly" you should seek an emergency doctors appointment TODAY!. If you cannot get in your GP you can be seen at a walk in clinic as an emergency if you tell them how you feel . Jill
Hi pain is never an easy thing to deal with, what one feels as a slight discomfort another will be doubled over with. I found the patches to be brilliant gave me almost total relief, but did have to try a few before hitting the right one. Fentanyl Patches were the best for me very sick on butrans for some reason and it takes a while for the body to adjust ie not feeling sick when you start using them. The other thing to consider is you MUST remove ever when you are told to in my case was every third day otherwise you start to get withdrawal symptoms. If you forget for a couple of hours this will not be a problem but if 12 hours or more could feel quiet rough for a while as it takes 24 hours for patch to start working. (This is the down side of patches) I loved the patches but 3 years in started with itchy skin under the patch they tried a few things but nothing worked and where ever I placed the patch would end up scratching until the skin was broken and bleeding. This will be something else you will need to be careful with. I am now on slow release morphine and oramorph for break thru pain this is ok but would prefer not to be swallowing more pills.
Like you have recently had Campath, treatment my steroids have been decreased from 17 to 11 and am now in more pain then before we stated. My second dose is soon have my fingers crossed that it will kick in and start helping.
Hope this helps
Sharron x
Hi,
I always cringe when I hear of another person going through the same pain as me!
Like you I am getting by on Tramadol and Oramorph.
Have had pain in my joints for a while now, which started in my wrists and shoulder. It has now got to my hips and knees, I also get back pain.
Things have been so bad that I have been signed off work for the last two and a half months. I have just started to go in two days a week, which I am finding really difficult.
Sleep wise, I manage to sleep quite well. I take 75mg of Amatriptyline and a 10mg dose of Oramorph and that's me sleeping like a baby. I do end up waking up around 1 or 2 am and not knowing what to do with myself. Pain can definitely send you crazy. Quite often I end up taking another dose of Oramorph!
Have been fighting for ages to get a referral to the London Centre Of Excellence. Thankfully my wish has been granted and I am just waiting for the appointment to come through.
I can sympathise too. I have had mixed experiences in the past with drs and pain clinics. I also think it is difficult because there are so many different types of pain that we experience with Behcet's. Unfortunately as time as gone on and my flares have got worse, so has my pain and more recently my gut has become more painful too. My really bad joint and abdominal pain and urethral ulcer pain only responds to opiates. I found switching to Oxycontin from the slow release Morphine preparations helpful but when I need breakthrough pain relief I use Oramorph. In the past I have used BuTrans patches but had to stop them because of a skin reaction to them which can be a pre cursor to a more serious reaction (which was unfortunate because they did work well.) I think you have to do what you have to do and not give yourself a hard time about it (much easier said then done, I know.) If you have been offered the Fentanyl patches and you are really struggling then maybe you should give them a go. I would hope that you would have access to someone to support you with correct dose and monitor effects and support you in future in terms of weaning off but right now just focus on getting your pain under control so you can improve your quality of life. Please go and talk through this with somebody ASAP and good luck. Let us know if we can help anymore. X
I have been on Fentanyl patches for several years, well about four. I do not find anything adverse to say about them. When occasionally I have forgotten to change them, I have not suffered ant withdrawal symptoms at all. As I have been taking them for such a long time, the drug has been in my blood so I do not suffer from this.
There is absolutely no reason for you to worry about addiction. The drug is the same as morphine, and the measured dose is so tiny (mine is 37 micrograms per hour, although when times my pain has been really bad I have been prescribed 50, with no adverse effects when changed back).
Although I realise that some people's reaction to some drugs is more alarming than others, if your doctor has recommended it, if I was in your shoes, I would go ahead and take it.
I am one of those people for whom Tramadol does not work, so this was the next option available.
Good luck in your search for analgesia. We are all different. Try the fentanyl and see how you get on.
You do become addicted just by virtue of what the drug is. You are not a drug addict because you need the drug and you should respond. You just need to be mindful of changing patches on time and when you decide to change you do it slowly ie bring the dose down of patch and increase the new pain med. Also look out for skin changes under the patch. It was the best pain med I have ever used I was far more active enjoyed my horses because I could do stuff without feeling like a cripple. Moya I am in clinic on friday should be 9.30 ish as have Max Fax appointment at 9.00 would be nice to meet you. I only had the lower dose of campath maybe it wasnt enough!!xx
Oh forgot to say Fentanyl patches can be cut with scissors to titrate the dose especially if coming down or needing to go up. The drs will tell you that you cant but you can and it works really well. Any of the other patches you can not cut as liquid ozes out not a good thing.
Thanks Sharron... Yes I am there tomorrow too at 9 would be lovely to meet as we are there the same time!! Yes I think if i had had the lower dose it wouldn't have worked for me... The first worked on the majority of things but my levels came back up again and they brought my second dose forward to the begining of June. Are you going to talk to them about a second dose. They did say at the beginging if I had the lower dose and it wasn't enough i could top it up to 30 as soon as i needed it and then would have to wait the 12 weeks the for next. Did you get many side effects?
So I went to the Drs this morning and we had a long chat and he's agreed he wants me to try Fentanyl Patches little apprehensive but getting sickness and tirdness off the Tramadol and its not giving me enough relief i'm willing to try anything.... like you Sharron i'm an avid horse rider and find at night after riding her i am in agony and then the next day is worse... Apart form the pain everything else is pretty much under control... I am so thankful to my team. Hopefully i will get on with the patches and i can be PERFECT haha.
Thanks for all you help and support guys, really means alot
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