Pain med recommendation

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bblbt
Regular Member


Date Joined May 2014
Total Posts : 184
   Posted 7/7/2014 3:48 PM (GMT -6)   
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

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 7/7/2014 4:03 PM (GMT -6)   
I don't know that much about the various pain medications, there may be people on the Chronic Pain forum who have suggestions about that for you.

I'm more interested in what meds you are taking to control the MCTD? You should be able to reduce your inflammation levels enough so that you won't need such high-level pain medication.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

bblbt
Regular Member


Date Joined May 2014
Total Posts : 184
   Posted 7/7/2014 4:34 PM (GMT -6)   
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, 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.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/8/2014 12:29 AM (GMT -6)   
Wow, you are a balancing act. They can't give you any predisone?
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

bblbt
Regular Member


Date Joined May 2014
Total Posts : 184
   Posted 7/8/2014 1:01 AM (GMT -6)   
They did for a little bit and it certainly helped. Not completely but I'm not picky and I'll take what I can get. The problem is the nasty side effects of the predisone. In particular, I already have extremely bad bone strength now with extensive osteopenia due to my chronic vit-D deficiency. They have me on 50,000 unit vit-D weekly supplements but this has proved to only be of limited help. I even force myself out into the sun often to try and help that way too and live with the photosensitive sun rashes, but again it's of limited effectiveness as well.

Thank you so much for your help though. As you can see, my condition tends to keep the discussions at a minimum. I've posted in the chronic pain forum as well with only one response. It's the same with my doctors, I call it quiet hesitation. But my remaining set of doctors (my team) are great and are trying, it's just that the problems are at such unusual opposition.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 7/8/2014 10:38 AM (GMT -6)   
It feels like I have a suggestion off in the corner of my brain, but I can't quite access it right now. When/if I think of it I'll post.

I know that sounds insane - I think there is an alternative anti-inflammatory that helps like prednisone but isn't as bad on the bones. Not used often due to a different kind of side-effect, but might help you. I'm trying to remember what it is or where I've seen it mentioned....
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

bblbt
Regular Member


Date Joined May 2014
Total Posts : 184
   Posted 7/8/2014 7:20 PM (GMT -6)   
Thank you Lynnwood, my posting in the chronic pain forum is beginning to pay off. There's hope now & I'll let you know how things progress.

Sunset14
New Member


Date Joined Jun 2014
Total Posts : 13
   Posted 7/14/2014 10:47 PM (GMT -6)   
Hey bblbt,

You may want to ask your rheumy about Acthar Gel H.P., It's an inject-able hormone that stimulates the adrenal gland thus increasing your own production of corticosteroid. My BF takes it for his RA/Behcets and it has allowed him to decrease his daily Prednisone from 40 to 20mg/day.

It is incredibly expensive but there is a program for individuals with rare diseases, Lupus/Behcets/MCTD. If you like I can get more info on it. My BF gets it free, 2 shots a week subcutaneous at home.
DX- SLE, Arthritis, DDD Lumbar, Hypertension, Hypothyroidism, Diabetes, and MDD
Medicines - Methotrexate, Folic Acid, Hydrocodeine, Etodolac, Ibuprofen, Acetaminophen, tizanidine, Norvasc, Levothyroxine, Metformin, Glipizide, and Viibryd

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/14/2014 11:11 PM (GMT -6)   
Hello bblbt:

I wanted to say welcome to the lupus forum and I'm sorry that you're one of the complicated cases. I'm one too, I have a different issues than you but most my Doctor's spend all their time worrying what's gonna happen to me next.

I have RA/Lupus/Fibro/LGL Leukemia, plus a slew of things that go with my lupus. I'm also on oxygen 24/7 and my lungs are very scarred up. I've been on prednisone for over 14 years at an average dose of 25-30mgs daily. I've never missed one day of steroids in over 14 years now.

So, I know all about those nasty side affects that you're talking about. I too, like you am on 50,000 units of Vit D weekly too, and have been for almost 6 months now. I've got osteoporosis so bad, that last year I sustained 15 fractures on various ribs. I know I don't have that many ribs, however, I did manage to fracture some of them several times. Most I think were caused from my beloved cat, Grady.

He'd stand on my chest, no matter how I was laying in bed, trying to wake me up. My last five fractures just happen with me bending down to pick up my portable oxygen to go out to my car with it. My Grady passed away almost 30 days ago, so hopefully I'll have no more fractures anytime soon. (Even tho I'd put up with them to have him back and healthy)

I get yearly infusions of reclast that's a bone building medication. However, since I'm still breaking bones with that. My Endo started me on a drug called Forteo, it's a daily shot into the stomach. It's a very small needle that goes onto a shot pen. You know the kind like diabetics use, it's simple to do and it doesn't hurt at all.

I will be doing these shots everyday until December 2015. You do the shots for two years then stop, as it can cause a very aggressive bone cancer, if you go over two years. I mention this to you, just in case your Doctors don't come up with a solution to your problem and you need to go back onto steroids.

If you have any questions, please feel free to ask. I hope you get to feeling better really soon.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.
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