Autoimmune Connective Tissue Disease (CTD) - Pain Med Recommendation

Hello to all on this Chronic Pain forum -

I'm new here but am in the Hepatitis & Lupus forums.

I hope someone here can help me in guidance toward a real pain-management solution. What I have now is very poor and ineffective. On a scale from 1 to 10 of what I need to control the pain, my current solution is providing only about a 2. As you will read below, I'll be meeting with my pain-management doctor this Friday. I'd like to have more insight into what might be a better solution for the full body bone/joint/muscle pain that I have.

See below for my posting in the Lupus forum ...

Thank & hope to hear from you very soon!

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Hi All -

Seems I have a particularly severe case of MCTD to go with my other issues, not fun at all. This has gone on now in a unrelenting fashion for almost 2 years now. Partly due to my stubbornness about dealing with the pain (I'm am man, strong and not suppose to let this get to me, right?) but it's progressive and unrelenting nature forced me to finally see my Rheumy several months ago. I have also been working with a pain-management doctor who has slowly been increasing my levels of Morphine Sulfate ER & Oxycodone to try and deal with it. I'm at 45 mg Morph & 20 mg Oxy right now and the MCTD pain is just laughing at my doctor and tormenting me. I really can't stand it anymore and it's really starting to break me down.

I'll be seeing my pain doc Friday and I'll will ask him to at least double my dosage that we're at now. Either that or switch to something else. And that's my question for those out there in similar circumstances - is there anything else I should consider using?

My MCTD has attacked every joint in my body aggressively and muscles as well, also leaving me very weak. It has now decided to include most of my ligaments in the fun, especially my knees and Achilles tendons. I can barely walk and just the thought of standing up in the morning, to expose my body to gravity, causes my to want and just lay in bed. The problem there is, my pain is still with me even in bed, causing me to turn/flip around to shift the pain around and destroying my sleep. It's with me 24/7 but does build up during the day to the point of debilitation by late afternoon. It hurts my fingers right now just typing this message.

Again, please let me know what you've also experienced and what might be a more effective solution.

Thanks, and painfully waiting

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Unfortunately, there isn't any anti-inflammation treatment at all being used. As my Rheumy put it she's "terrified to touch me" and I can't blame her for that. As I work with my others doctors, I've finally come to recognized how rare my condition is and how careful they must all be in maintaining my delicate balance. I have decompensated ESLD (due to primary sclerosing cholangitis, PSC, also autoimmune) that is rapidly driving my liver to the point of failure. This puts stress on my remaining kidney and now I find out that my CTD is also attacking the kidney as well. So now I also have advance stage kidney disease to go with my ESLD. It's clear I'll have to have a liver and kidney transplant in the near future. In the meantime though, I'm stuck in trying to slow my MCTD disease down.

I've recently had extensive blood work done and this has been given to my Cleveland Clinic's team to assess and then try to come up with a plan of attack for this CTD issue. Then my local Rheumy (I'm 3 hours from Cleveland) can implement it and hopefully mitigate what's going on. This whole thing seems surreal to me since I've always been healthy and very active my entire life. Then I get blindsided by my own body ... I never saw it coming.

Hello bb and welcome to the CP forum! Wow what a lot to deal with! The MS can be increased as that's a fairly low dose for ES anything by my experience. I think and this is professional experience which by the way I tend to avoid here, that Drs tend to forget the ES part of the disease and just as they ignore the chronic part of ours and fail to treat aggressively!

I have to say I'm kinda surprised that they're not using fentenyl as their first line of defense since it's transdermal and passes through the liver differently thand metabolizes better without overloading it.

That's the route I would ask to go to. Its can be titrated more smoothly, offer a far more even coverage and be changed 48-72 hours as the need arises for higher doses. They can then add just about anything for b/t based on the need. As for anti-inflams and again your ESLD why not if it brings about much needed relief? They are not created equal and some may be easier on your liver then others but I'm not current enough in pharmacology to say which and if your Dr would remember what your diagnosis /prognosis is and do some investigating versus running from it they could certainly come up with a medicine combination to give you adequate relief. You may actually have to consider a different Dr or at least one that believes at this point in the game your comfort trumps all else.

Good luck to you and hoping you find relief!

I can clearly see your Hep Drs theory and it makes good sense which tells me he knows his stuff! Fentenyl can easily be used as your LA med and because its transdermal and has a very long half-life it's a good choice and you only change the patch every 2nd or 3rd day so the only clock watching is if your not getting adequate control with your breakthrough med or IR(instant release) fentenyl is great if your out and can't get back to your meds for some reason, your still being covered. Many spinal patients are on fent so the bone issue question is definitely one of the better.

Glad you have Drs who are caring and willing to do what it takes to get the job done! That makes all the difference and I agree there's absolutely no reason you should be suffering.

Thank you Susie. I hadn't thought of having an emergency option readily available. Sure could have used it several days ago. I will discuss this with the doc as well.