[Cake]

Hi Guys

I've been wanting to let you know what's going on here for a while, but just haven't been up to posting. These rollercoaster rides (when we're changing medications) never let us to let us do what we'd like, when we'd like!

Here's a quick recap of my situation first: Recently I had to come off oxycontin because the side effects outweighed the pain relief benefits, and I began taking Jurnista- which is a 24 hour version of hydromorphine. We slowly lowered the oxy dose and upped the Jurnista dose, then I stayed on a decent dose of that for a few weeks, but unfortunately it gave me no pain relief at all, neither did the Dilaudid tablets I've been taking for breakthrough pain.

I've pretty much had the intense raw RSD pain that you get when you're off all medications. Cutting my leg off with a rusty saw would hurt LESS than the pain I've been in lately. It hasn't been letting up- staying at the intolerable peak level 24/7 and it's taken everything from me and left me as a shell of a person, sitting in the corner, rocking back and forth and crying. This is the ugly face of full blown RSD pain, I guess.

But it's school holidays at the moment and my poor kids have had to be home with me while I'm going through all this, which is no fun for them (my husband has been home too, I'm not alone with the kids like this). The kids have been so patient during this suckful time, but they shouldn't have to see me in this much pain, day in day out. Plus it upsets them that they can't help me feel better.

I'm sad the Jurnista didn't work for me, but I'm still glad I tried it. It didn't give me any bad side effects so it would have been perfect if only it gave me some pain relief. Still, it's not often a new RSD medication becomes available so I'm glad I gave it a go.

And one thing DID come out of the medication changeover (note I didn't say one good thing!)- I'm still getting the heart and breathing problems that I had on oxycontin. Which shows that it wasn't the oxycontin causing those problems, but the RSD itself.

That's the outcome I was hoping to avoid, as I don't want to have ongoing breathing and heart rate symptoms all the time, but I guess I don't get much say in it, hey?!

So now I go back on the medication rollercoaster (anyone would think I enjoy this process, I do it so much! ) I'll slowly come off Jurnista and go onto MS Contin, and take a morphine syrup for breathrough pain. I used to get good pain relief from MS Contin (back in 2004 & 2007) so I'm hoping that will be the case this time. It better be the case- it's my birthday in 13 days and I am NOT going to be in this much pain on my birthday!

Thanks to everyone who has supported me during this horrible transition time, and had their fingers crossed that the Jurnista would work. You can UNcross your fingers now! lol Wait, no, please cross them again- in the hope that the MS Contin gives me the pain relief I so desperately need.

Thanks guys
x Kate

[CZZ74]

[QUOTE=Cake;578775]Hi Guys

and it's taken everything from me and left me as a shell of a person, sitting in the corner, rocking back and forth and crying. This is the ugly face of full blown RSD pain, I guess.

Cake, a year ago December, I remember going through this process, we tried everything, fentynal patches, higher strengths of oxyc, dillauid, etc etc, nothing worked. I was definitely in crisis, so I know you are not exaggerating when you write you were rocking back and forth in the corner. Its a very scary time. I was literally on fire the entire time, I have cold rsd but I was on fire head to toe worse than the normal freezer burn, then my doctor came up with Opana er and Lyrica and magic- pain control!! I am glad you have sorted some things out medically and hope the new meds will work for you. take care and keep us posted. Sincerely cz

[AintSoBad]

Kate, CZ,
I have found (after having this Bear on my back since '83), that methadone works well for me. I've been on it since around '90 (I wasn't dx'd for 7 years), there were no fancy, expensive meds back then.

Methadone is not perfect, not for everyone. But, it's the only thing that has relieved "The Burn" for me. I have adjuncts, but that is my only straight pain relief med.
And, for anyone who's out of pocket,
it's VERY inexpensive.

I see so many, on the "medication rollercoaster" and never seem set in their pain relief satisfaction.

I'm not saying that we can eliminate the pain, we can't. All we can do is manage it.
I don't think it will be long before ins. companies start recommending this old med.
It works well, and is very cost effective. (Not what the RX companies want to sell you, so it's not pushed onto, or by, your doctors).

I hope this may help someone, that's just a wish from this old timer...

pete

[dreambeliever128]

I am in the same boat as you are. I was just debating on starting back on my Methadone full time. I have been off of it for about 8 months due to remission but I started a new med called Sevella and it actually started my pelvic pain back up.

I will see my Dr. Monday and he will give me some injections again but if we can't get the pain calmed down that way then I will get back on the Methadone.

Like Pete, I get more relief from it then anything I ever tried and like you guys I have tried all of them. The only one I never tried was the Dilaudid. I started on the Methadone about 5 years ago and was able to finally go off of it as I said but now, here I go again if the shots don't work.

I don't think the weather is doing any of us any good either. Everywhere in the country it's crazy so we pay the price for it bouncing back and forth.

On the Methadone also, the dosage should start out low. I think the reason some people can't handle it, they are started out on too high of a dosage.

Good luck with getting the pain calmed down.

Ada

[bobber]

Cake
One thing that you may want to monitor and speak with your dr, when I first went on pain meds i did ok,,but thru multiple surgerys[ball player] in the last 6 years,,the liver gets sensitive to all of our meds,and i started to have early adverse effects,,,Pain meds when the liver is weak causes respirtory problems and the heart causes this as well,,,also an allergic reaction can do this as well,,but from my dr's point of view,,after years of useing meds,,our livers get so sensitive that even a smaller amout causes adverse effects,,and also that pain meds weaken the heart and are hard on the heart,,thats why alot of elderly patients to whom i know who are in pain cannot use them,,but a weak heart and liver , run hand in hand,,plus all the other meds that we have to take does indeed overload the liver and heart,,,I sincerly hope that you find what your looking for and get pain relief,,This may not even apply to you,,but all info and ideas are worth investigating,,goodluck to you,,,,,,,,,,

[Cake]

Thanks for your replies

On the methadone point- I tried methadone for the first time a year ago, but unfortunately I had an allergic reaction to it. I basically spent three days lying on my bathroom floor, lifting my head up to the toilet to throw up, then collapsing down again. It wasn't nice at all and nothing eased it, so we sadly had to give up on that one. I was really hoping it would work, as it's very similar in nature to ketamine and I've had some great results from ketamine infusions.

On the liver point-this is something my Dr monitors a lot. After I had my c/section with Hannah three years ago, I got a nasty infection in my uterus and was in and out of hospital for weeks, due to hemorraging (I know I've spelt that wrong but my brain's a tad strained right now, lol) constantly and a huge amount of pelvic pain. I was put on both IV and oral antibiotics- two types of oral ABs at once plus the IV ABs on top of that when I was in hospital.

I then had a scheduled ketamine infusion when Hannah was 8 weeks old and it caused my liver to screw up. My AFT level went from 50 up to 80 in one day (50 is normal level), then a few hours later up to 103, then 4 hours after that, up to 160. That's when they decided to cut the infusion short and end it before my liver reacted even more. They said that between the ketamine and the uterus infections (and the massive amount of antibiotics I had in the weeks before the infusion), it just put too much strain on my liver.

Thankfully my AFT levels went back to a normal level within 2 weeks, but since then my liver has been monitored frequently to make sure it's functioning normally. I've had two more ketamine infusions since that one and they kept a very close eye on my liver function each time, and each time it was perfect, thank god!

My pain specialist says my RSD has gone too far for a lot of medications to help- technically it's central neural sensitisation now- and he put me in the "too hard" basket , which I'm battling to stay out of so I can access all the help I can. I wish my pain responded better to other medications, but after 9 years of this lark I only get relief these days from opioid based meds. I keep going back to other medications, such as neurontin and lyrica, to see if they'll help, but they don't anymore.

But I always have great pain relief when a ketamine infusion is running, so I'm really hoping that soon we'll be able to get ketamine tablets or boosters here in Australia so that I can be on it in some form every day, instead of having to go into hospital to have an IV infusion. Until that happens, I'm stuck with opioids.

Thanks again for the replies. I'm really hoping the MS Contin helps, I don't think I could cope with being in this much pain for much longer. xx

[yiisd]

MS Contin is the Only Rx that consistently provided pain relief with few side effects. I know all about the "Rollercoaster". Though I know MS Contin works, I am unable to find a physician to prescribe it . Each pain management physician "fires" me because I refuse the "SCS" and the "pump". I know what works--Why physicians won't keep it that simple I have no idea --- except "procedures" PAY better than office visits. Best of luck with the MS Contin. It does wonders for me. RSD -- 7 years now.

Originally Posted by Cake

Hi Guys

I've been wanting to let you know what's going on here for a while, but just haven't been up to posting. These rollercoaster rides (when we're changing medications) never let us to let us do what we'd like, when we'd like!

Here's a quick recap of my situation first: Recently I had to come off oxycontin because the side effects outweighed the pain relief benefits, and I began taking Jurnista- which is a 24 hour version of hydromorphine. We slowly lowered the oxy dose and upped the Jurnista dose, then I stayed on a decent dose of that for a few weeks, but unfortunately it gave me no pain relief at all, neither did the Dilaudid tablets I've been taking for breakthrough pain.

I've pretty much had the intense raw RSD pain that you get when you're off all medications. Cutting my leg off with a rusty saw would hurt LESS than the pain I've been in lately. It hasn't been letting up- staying at the intolerable peak level 24/7 and it's taken everything from me and left me as a shell of a person, sitting in the corner, rocking back and forth and crying. This is the ugly face of full blown RSD pain, I guess.

But it's school holidays at the moment and my poor kids have had to be home with me while I'm going through all this, which is no fun for them (my husband has been home too, I'm not alone with the kids like this). The kids have been so patient during this suckful time, but they shouldn't have to see me in this much pain, day in day out. Plus it upsets them that they can't help me feel better.

I'm sad the Jurnista didn't work for me, but I'm still glad I tried it. It didn't give me any bad side effects so it would have been perfect if only it gave me some pain relief. Still, it's not often a new RSD medication becomes available so I'm glad I gave it a go.

And one thing DID come out of the medication changeover (note I didn't say one good thing!)- I'm still getting the heart and breathing problems that I had on oxycontin. Which shows that it wasn't the oxycontin causing those problems, but the RSD itself.

That's the outcome I was hoping to avoid, as I don't want to have ongoing breathing and heart rate symptoms all the time, but I guess I don't get much say in it, hey?!

So now I go back on the medication rollercoaster (anyone would think I enjoy this process, I do it so much! ) I'll slowly come off Jurnista and go onto MS Contin, and take a morphine syrup for breathrough pain. I used to get good pain relief from MS Contin (back in 2004 & 2007) so I'm hoping that will be the case this time. It better be the case- it's my birthday in 13 days and I am NOT going to be in this much pain on my birthday!

Thanks to everyone who has supported me during this horrible transition time, and had their fingers crossed that the Jurnista would work. You can UNcross your fingers now! lol Wait, no, please cross them again- in the hope that the MS Contin gives me the pain relief I so desperately need.

Thanks guys
x Kate