I had to stop taking all MS DMD's, after Rebif caused Lymphocytic Colitis.
Due to the LC, there are very few pain medications I can take.
Currently, I am taking Oxycodone.
But the side effects are rough.
I failed all my neurological exams and I have been told to expect to be in a wheelchair....but DO cannot, of course, say how soon.
Has anyone had any success with compounded LDN?

12 Responses
1831849 tn?1383228392
Hi Y-V,

Are you seeing an neuro in addition to your DO? My DO is my PCP, but she does not manage my MS treatment. For that I have a neurologist that specializes in MS.

Has anyone been able to find the cause of your pain? Many of us with MS have neuropathic pain in various locations. For me it's my feet. Traditional antiinflammatory pain meds don't work. I take a combination of an antidepressant and an antiseizure med for relief. I mention this as it may be another avenue of relief for you.

also, understanding tha betaseron did not work for you, there are other options available these days. Has anyone talked with yhou about things like Tysabri or Rituxan?

Avatar universal
Hi, Kyle.
No, not since my MS Specialist retired. My DO is very well educated regarding MS, so he has taken over my treatment.

Yes, I was diagnosed with small fiber neuropathy in my thighs & legs at Cleveland Clinic.

And I had diagnostic nerve blocks done, and pain stems from medial branch nerves. They were not able to go deep enough with Rhizotomy to deaden the nerve pain.

Yes, before my MS Specialist retired, she consulted with my G.I. Doc, and they agreed, I couldn't take any of the MS drugs, due to the Lymphocytic Colitis.

Basically, just wanted to know if anyone had success with compounded low dose naldextrone.

I found several forums on-line, and learned that many people are using it, and doing very well, on it alone.

Thanks for your reply.

Avatar universal
Forgot to say-my thighs & legs started throbbing in the last few months.
I'm taking 2.5 mg. of Oxycodone, 3 times a day.

667078 tn?1316000935
If I had no other choices it is worth a try. The controlled studies have not been favorable but I know people who swear by it.

Avatar universal
do you have an alternative to the oxy?  
that would concern me
Avatar universal
I have no other options, so I am going to discuss it with my DO on the 27th.

Avatar universal
Unfortunately, there are very few pain meds people with Lymphocytic Colitis can take.
I'm not happy about taking the Oxy, but it does relieve the horrendous pain in my back.
572651 tn?1530999357
Hi, Sheila.  Each time I see you I keep hoping the magic combination has been found .  Drats!  It still hasn't happened for you.  I'm remembering you had tried the injectibles but did you try any of the oral drugs?  You would probably havbe to avoid tecfidera because of possible gastric side effects but you might look into Gilenya or Aubagio.  

My neuro says he doesn't object to people trying LDN - it is inexpensive and won't do harm  but he also wants his patients to stay on a disease modifying therapy - in other words do both.

Talk it over with your doctor - and seriously think about finding another MS neuro. Your dO ca'nt possible stay up on al lthe latest treatment options for MS

hugs, laura
Avatar universal
Hi, Laura.
I'm sorry that I don't come on-line very often anymore.
Just too much pain, too much fatigue.

I'm afraid the magic combination isn't going to happen for me.

Unfortunately, due to the Lymphocytic Colitis, I can't take any of the DMD's.
It has not gone into remission. And I was diagnosed in Dec. of 2012. The Rebif was the definite cause.  So, my former MS Specialist & my G.I. Doc agreed, the DMD's are out of the question.

There aren't any other MS Specialists where I live, and mine retired due to the fact that her daughter is very ill.

I have the same type of MS that my 2nd cousin Irv, died from in '08. And I am following the same pattern. We were both diagnosed, later in life, and we were both diagnosed after too much damage had been done.

My DO sees me every two months now. And although he may not be on top of all the latest treatment options, he is far better than the Neuro's I saw before I was referred to my former MS Specialist.

Thank you, Laura, but I don't have the option of being on a DMD.

At this stage, just finding a safe pain med is near to impossible. There just aren't many that don't cause major flares to the LC.

5112396 tn?1378017983
I'm a little confused by much of what you've said. If you were prescribed Rebif, does it follow that you were considered RRMS? Yet you state you have the same type as your cousin who died from MS related issues in 2008. I'm a bit baffled as to how someone dies of RRMS-related issues. Or is it the case that you are not RRMS? If so, why would they have not tried you on the more aggressive drugs like Tysabri or Rituxan? Heck, even the orals are often tried on those with SPMS. Many of these drugs work in entirely different ways to interferons so I'm very confused as to how your two doctors could have ruled them all out in one fell swoop, especially as LC sometimes resolves on its own. MS never does.

Also, a second cousin isn't that close of a relative in terms of MS. That and the fact that he was male and the general nature of MS and its individuality means you shouldn't get too caught up in his admittedly scary result. You're not him. Your MS is your own.

From everything I can find, LC *may* be another auto-immune disease. It's not uncommon to get more than one auto-immune illness at one time, unfortunately. But let me be clear, it is unequivocally stated on the website for the National Institutes of Health that the cause is unknown. If these two doctors believe they have it cracked, they need to do the decent thing and not just scare their patients, but write a peer reviewed article that may help others AND inform the makers of Rebif in the strongest terms. I think either you misunderstood them, or they're taking a risky, perhaps unethical, punt.

LDN has never been shown to work to modify disease. Good quality studies just aren't out there yet. Please consider entrusting your treatment at least to a neurologist, if a specialist is not an option.
Avatar universal
I didn't come back here to discuss DMD's .

I asked about compounded low dose naldextrone.
With that said, I am not returning.
667078 tn?1316000935
I am sorry people got off track. I am all for you trying the LDN

I don't take a DMD because I have Cancer and can't with my chemo.

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