LDN vs cellcept. Anyone? Help!

[Torn]

I recently found out that I have an immune difeciency on top of ms. My WBC is low so now the dmds we were looking at are not options. Anyone know about or tried ldn or cellcept? Looking for help, and or advice. Please!

[Redwings]

Hi Torn:
LDN and Cellcept are completely different meds, to the point that they probably shouldn't even be mentioned in the same sentence. Cellcept is a potent immunosuppressant, used to prevent the rejection of transplanted organs and subsequently used for serious autoimmune conditions. It generally isn't used for mild cases because it has an associated risk of PML.

A few years back, I was on Cellcept for 10 miserable months. It worked great to control my NMO (nothing has worked as well since), but I couldn't tolerate the side effects and eventually had to quit taking it. For me it was GI effects. We have another occasional poster here who had to stop taking it because of intolerable bone pain. My prescribing doc said that, while most of his patients tolerate it well, about 25% come in saying, "Get me off this drug!" It is very much a benefit vs. risk drug.

LDN works very differently and has great anecdotal, and some clinical, evidence of effectiveness for MS. It doesn't have the kind of track record yet that indicates that it should be used for aggressive immune conditions having the potential to kill someone. There are numerous threads here about LDN. You can search for them using the keyword "naltrexone."

[knuckle]

Ditto to what Redwings said and to add:

LDN causes the Pituitary Gland to over-produce endorphins 2-300% the day after you take it. Evidently, endorphins will cause white blood cell counts to rise.

LDN has been used quite successfully for years with AIDs patients. In fact, Dr. Bernard Bihari, who discovered Naltrexone's therapeutic action in a low dose, used it with AIDs patients first and later applied it to MS.

Here's a great interview with him before he died:

Low Dose Naltrexone (LDN) Pioneer Dr. Bernard Bihari Talks About His Life

http://www.youtube.com/watch?v=x54Jccr8GT8

[Redwings]

Hi Torn:
I forgot to mention in my earlier post: if you already have an immune deficiency, Cellcept wouldn't be an appropriate medication because it's an immunosuppressant. For what reason would you want to further suppress an already deficient immune system?

[Torn]

Thank you for the very useful info. I'm am trying to educate myself as much as possible. My immunologist/rhumotologist and my nuero are battling right now. One wants to boost my immune system while the other wants to kill it. I'm so confused and overwhelmed I'm not sure what to do anymore. Now I'm questioning the right dx, or if it's something else entirely.

[Redwings]

Wow. That sucks. No wonder you're feeling overwhelmed. You have a complicated case. Have you thought about going to one of the creme de la creme, multidisciplinary clinics like Mayo or Hopkins?

[MarkLavelle]

My immunologist/rhumotologist and my nuero are battling right now. One wants to boost my immune system while the other wants to kill it.

Is Copaxone not an option for you? My neuro dx'd it because my immune system is compromised from past chemo & radiation (and Copaxone is not supposed to inhibit your immune system).

[sich59]

Wow. That sucks. No wonder you're feeling overwhelmed. You have a complicated case. Have you thought about going to one of the creme de la creme, multidisciplinary clinics like Mayo or Hopkins?

I agree that the multiplinary clinics are a viable option, but don't set your expectations too high.

I wasn't happy with the neuro I saw there. That I'm sure can be said for any place you go. But my visit started by him saying "when has medicine cured anything?" and ended with him pretty much saying without saying that I can do/try anything I want but not to expect a lot.

I don't think he is there anymore

[Torn]

I was on copaxone for five months and had three flares needing iv steroids for five days. Then I had a major allergic reaction to it. Needless to say, not working for me.
I did talk to the mayo clinic and am waiting to hear when my appt will be, but they accepted me as a patient. I took my daughter there three years ago and was very pleased with our treatment. I'm not getting my hopes up, but thought another opinion couldn't hurt. Thanks for the input and thoughts.

[Redwings]

I'm glad to hear you'll be going to Mayo. Please be sure to ask them about the NMO Spectrum Disorders while you're being worked up. Three episodes of ON within such a short time isn't typical of MS. The frequency of my ON episodes was one of the significant pieces of evidence for my NMO diagnosis.

[JerryD]

Torn,
I take LDN and I am glad I stumbled into it !! You need to find a doctor who knows what it is and how to get it. My original PCP didn't, so now he is my former PCP. My cardiologist thought it was for pain. I explained to her that it had to do with endorphin levels.
LDN is compounded by a 'compounding' pharmacist. A standard pharmacy probably will not have it. Its standard dose is 50mgs. I take a 4.5mg tablet once daily at bedtime. Hence, Low Dose Naltrexone. knuckles previous post explains LDN very well.
Good luck

[Torn]

Jerryd, mine came FedEx today. I'll start tomorrow. Thanks

Redwing, ever since I read your post about a false neg in antibodies test I've been thinking about this. I looked it up a lot today and I'm thinking I may have it.

For the past eight weeks I've had uncontrollable vomiting and nausea that I thought was unrelated but didn't know why it was. My pcp took me off nuvygil for two weeks but saw no difference. I read tonight that could be a symptom.

I've also had really bad bladder incontinence the past few weeks. Seeing my urologist tomorrow. Which I saw was another symptom.

But the biggest thing for me was the fact that nmo can show no lesions on MRI. Just like me! Maybe I'm looking into tis too much but now I'm thinking I may have been mis dx. Since you have personal experience with this, what do you think?
**post edited by Moderator to break into paragraphs for easier reading! many people with MS have visual difficulties that prevent them from reading large blocks of print**

[Torn]

Redwing, forgot to mention my respiratory issue that I thought were unrelated, but maybe not? Isn't that an nmo issue too?

[Redwings]

Hi Torn:
NMO usually shows no brain lesions on MRI, although they can occur.

However, that isn't the case for the spinal cord. One of the two characteristics of NMO -- and in fact one of the diagnostic criteria -- is transverse myelitis with large, longitudinally extensive lesions. Respiratory and bladder issues can be related to NMO, but only when associated with CNS lesions -- particularly spinal cord lesions.

But since you said you don't have CNS lesions, it's doubtful that your respiratory and bladder issues are from NMO. The other possibility is that you have a CNS lesion you don't know about.

Recurrent ON is a different issue, because the other characteristic of NMO is ON. Recurrent, frequent ON without other CNS lesions isn't typical of MS, but fits into the NMO spectrum due to NMO's predilection for optic nerves and the usual absence of brain lesions. NMO can show no lesions on brain/cord MRI, but only if it presents as the part of the NMO spectrum that manifests as recurrent ON.

You said earlier that you had an evoked potential test. As I said in another thread, if the only evoked potential test you had was a VEP, it's irrelevant and unhelpful to your diagnosis because it only confirms something you already know. With high probability, your VEP is going to be abnormal simply by virtue of you having had recurrent ON. Plus, it can't tell which disease caused the abnormality. An abnormally slow transmission speed doesn't automatically mean MS.

You have some weird, contradictory issues going on, so having Mayo take another look at things can be beneficial. From what you've related, your diagnosis of MS relies solely on the results of your lumbar puncture. (Usually the 5% of people who are diagnosed with MS without CNS lesions have several other pieces of evidence supporting a diagnosis of MS. Yet you have only one. That's the primary reason why I think your MS diagnosis needs further review.) Although the majority of people with NMO don't have O-bands, some do. That's why it's so important for a practitioner with the proper knowledge and experience to review the results of your LP in light of how CSF can present in NMO.

When you throw in the oddity of having a deficient immune system in conjunction with recurrent inflammation, and respiratory, bladder and vomiting issues without apparent cause, that's a fairly complicated case that can really benefit from evaluation by a multidisciplinary team.

The final thought I do have is that your eight weeks of uncontrollable nausea and vomiting could be considered the onset of new symptoms. It might benefit you to have a new brain MRI. You won't know if there's something going on in your brainstem unless you look.

[Redwings]

Hi Torn:
I had one other thought. So far you haven't given much detail about your ophthalmology findings. At Mayo, it might be a good idea for you to have an ophthalmology evaluation. OCT (ocular coherence tomography) findings can look different in NMO and MS, which can give more clues about a diagnosis.