Lung Improvement

[redrock]

[user=27]Maz[/user] wrote:

[user=1785]Alli[/user] wrote:

I am still on Cellcept, 1000 mg a day.  I have been taking both Cellcept and Tracleer since December 2007.  My first pft's did not indicate any improvement after starting the drugs, as a matter of fact the results were my worst.  After starting AP, my first full pft's showed significant improvement.  Which is why I am excited for my appointment next month.  If Dr. S. does prescribe LDN, I will wait until after the lung appointment to start taking it.  That way I can keep an accurate accounting of my improvements and to what in particular has helped.

 

Just a fellow patient suggestion, of course. 😉 Here is the official LDN website, so you can read more about how this compounded drug works. Very important to ensure that it is prescribed and compounded in the “immediate release” form by a compounding pharmacy who knows what they are doing.

http://www.lowdosenaltrexone.org/

Hi, I just want to interject something here, that LDN can be taken either in compounded form or liquid form, which is much cheaper. I've been using the liquid for 2 1/2 years with no problems. My doctor prescribes eight 50 mg tablets at a time. I drop one tablet into 50 ml of water, let it dissolve, and siphon out my dose, which is 4.5 mg. I keep the bottle in the refrigerator. It costs me about $35 a YEAR, so it's very cost effective. Of course, you can go to a compounding pharmacy, but it is much more expensive.

[Parisa]

Alli,

My husband supplemented NAC based on research I found not on what the pulmonologist recommended.  The pulmonologist has said that he can't take any credit for my husband's improvement.  His typical experience is that patients just get worse. 

 

[redrock]

If I may ask, what is the dose NAC he is using and the brand?

[Parisa]

600 mg  two times a day.  We bought it  from GNC for a long time.  Now he is using Jarrow formula.

[BJK7493@aol.com]

Parisa, I too have Dermatomyositis and am currently awaiting Insurance approval for the IVIG tx's. Can I ask you how your husband tolerated the treatments? I have heard terrible things about the reactions and I am scared to death. I also am getting more SOB, but don't know if it is from the high dose steroids or the pulmonary fibrosis that could be starting. Did he tolerate the tx's ok? Did he have any reactions? How long did the infusion last? Could he see marked improvement after a few doses?

 

Julie

[Parisa]

Julie,

I wish I could tell you that IVIg gave a quick turnaround.  We didn't start to see improvement until about 3 months into it.  And yes, my husband did have a strong reaction the first couple of months.  However, each time the reaction was less and less and now he just feels a little off.  In addition, my husband's reaction to the IVIg was complicated by the fact that he started IV Rocephin a couple of weeks before the IVIg so he had a huge herx.  In the long run it was all worth it as I truly believe the IVIg helped to normalize his immune system.

[BJK7493@aol.com]

ok thanks!  I am just so tired of all this and want something that will turn me around quickly.-maybe a miracle?? I am still trying to work fulltime and have a duaghter who is a senior this year in high school. 

 

Julie

[Alli]

Thanks Maz,

You are a wealth of knowledge.  I appreciate your suggestions and will talk more in depth with Dr. S.  I sent him an email earlier today but have not heard back from him as of yet.  He is such a busy man. 

I did a little bit of reading on LDN this morning however your explanation was very reader friendly.  I understand what you are saying.  Wouldn't it be great to get off the Cellcept?  I personally don't think it has done much good with my lung issues.  I think it is the key player as to why my blood pressure is so low all the time, well that an the lasix.  I was always a 120/80 girl but since the cellcept, tracleer and lasix my pressure run 80 to 90/ 58 to 60. 

I will let you all know what I hear back from Dr. S and will also send my pft results as quickly as I can get them. 

Thanks Maz – do take care……Alli

[Alli]

Red Rock,

I emailed Dr. S. and he said that he would prescribe LDN for me but we needed to work with the compounding pharmacist to make sure it is mixed correctly.  What I haven't gotten a chance to ask him is if he knows what that exact mix is.  What amount do you take and was there any difficulty in getting your insurance company to pay for it? 

Alli

[Alli]

Hi Maz,

I spoke to the pharmacist at Curascript, which is where my Tracleer comes from.  He said that he had never heard of it used for people with autoimmune diseases or lung issues.  He stated that it used as to help ppl from abusing drugs.  At the time we were speaking I did not have the site up or I would have told him that FDA did infact approve it in helping to boost the immune system.

I talked with my local pharmacist and she said there is a compounding pharmacy in Siuox Falls who could mix it up accoding to what my dr. prescribed.  Apparently the mix is very important.  Dr. S. should know the correct amount, shouldn't he?  When I asked him about the drug, he said he could prescribe it as he did have some patients who it helped a lot and some who it did nothing for.  I forgot to ask him if I should be weaned off Cellcept, I will do that in my next email to him.

Should I be concerned about any side effects from the drug if I do start taking it?  And what is the difference between this drug and NAC, is one of them better for me and my condition than the other?  When I asked my family doctor about NAC several months ago, she stated that it was used to help patients that had overdosed on tylenol.  This can all be very confusing.

Thanks….Alli

[redrock]

Your pharmacist is unaware of the whole LDN revolution going on. I suggest you join the yahoo group lowdosenaltrexone. You can get a lot of info there. It really is a godsend. It has helped me in so many ways.

Sorry I didn't see your earlier post. I take 4.5 mg. My doctor writes a prescription for eight  50 mg pills. I take one pill, dissolve in 50 ml of water, and siphon out my dose. You get the measuring bottle for free along with liquid syringe at the pharmacy. Perhaps best to start at 1.5 mg and build your way up. This is cheaper (much) than going to compounding pharmacy. Some folks have vivid dreams as a side effect when starting out but I didn't. Sorry for the rushed response, I'm at work and Big Brother is looking over my shoulder. If you have more Qs I will answer later.

Oh and my insurance company does pay. It costs me about $35 a YEAR.

[nspiker]

Alli,

I just wanted to pipe in on the LDN.  My doctor gave me a compounding prescription, which I faxed to a pharmacy in NY, and the cost is only $15/month.  It's Gideon's Drugs.  My doctor started me out on 2mg for 30 days, then upped to 30 mg. for 30 days and now at 4 mg.  I had all three prescriptions on one script, and the cost was $45 plus $7 shipping, and no insurance involved.

There is a list of compounding pharmacies that you can order from:

http://www.lowdosenaltrexone.org/

[redrock]

[user=1785]Alli[/user] wrote:

Should I be concerned about any side effects from the drug if I do start taking it?  And what is the difference between this drug and NAC, is one of them better for me and my condition than the other?  When I asked my family doctor about NAC several months ago, she stated that it was used to help patients that had overdosed on tylenol.  This can all be very confusing.

I don't want to cause any alarm, but I have read studies online that say NAC is good for some lung issues, but bad for pulmonary hypertension.

[Maz]

[user=1785]Alli[/user] wrote:

Should I be concerned about any side effects from the drug if I do start taking it?  And what is the difference between this drug and NAC, is one of them better for me and my condition than the other?  When I asked my family doctor about NAC several months ago, she stated that it was used to help patients that had overdosed on tylenol.  This can all be very confusing.

Hi Alli,

As Redrock mentioned, if you go to the LDN website at http://www.lowdosenaltrexone.org you'll find all the info you need to present to your doc for its use in the low dose, immediate-release formulation (which needs to be specially compounded at a compounding pharmacy that knows what they are doing or prescribed in the immediate release tablet form and mixed with water to dissolve and then take in small amounts with a dropper). I personally perfer to just buy the compounded capsules direct by mail order from Irmat Pharmacy in NYC, which comes in the mail within 2 days of faxing my script to them.

Yes, naltrexone in its extended release form was originally developed for those with addictions and in cases of overdose, but it is prescribed in much higher doses of about 50 or 60mg in those cases. Used in this way, naltrexone blocks the endophin receptors that initiate drug or alcohol cravings.

However, in the immediate release form, in low doses of 4.5mg or less, low dose naltrexone has been shown to have beneficial effects for many suffering from various AI diseases to help modulate immune function. It does this by temporarily (hence the immediate release formulation) blocking endorphin production while sleeping at night. This blocking action only occurs very briefly, after which there is a rebound effect and a burst of endorphins is produced. It is the release of endorpins in this manner that is thought to cause a boost in immune function to help modulate the disease.

Hope this helps?

Peace, Maz

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