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What drug has the least side effects?

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Posted 4/19/2012 5:21 PM (GMT 0)
I am asking this question for cousin who does not have a computer. He was diagnosed with CD in Jan after having massive inflammation in the illium with a lot of pain, but without D.  Bm's are and have been 100% normal.   He was given 40mg predisone and 3000mg /day pentassa, and tapering the steriods by 2.5 every 15 or so days.  He is now at 10mg.  He also started SCD diet in Jan, and is following it 100% with no cheating.

At 15mg , the pain started to return sporadically. He will be fine for 4 or 5 days, then all of a sudden at night, the pain and nausia returns for a day , then he is fine again for another 4-5 days, and so on and so on.  The funny thing is, the pain only starts at night between 1 and 4 in the morning and will last most of next day, then disappear for another 4 or 5 days, and then start again at 1 to 4 in the morning. The pain NEVER starts during the day.  It always starts after he goes to bed.   It must have something to do with laying down and what he ate that day, but we are at a loss to explain it.

Anyway, his GI is pushing big time for humira but my cousin is hesitant because of the side effects.  He knows that he can not stay on steriods much longer and pentassa just is not working, so he will have to take the next step and progress to a stronger drug.  He would like a drug with minumum  side effects so my question is of all the hard core drugs like 6mp, immuran, ramicade, humira, etc, which has the least possibilites to cause further damage like lupus, cancer, and other side efects?

Posted 4/19/2012 7:57 PM (GMT 0)
This is really hard to answer because everyone is different.  I think for the most part, prednisone is the only drug that has pretty universal side effects.  All the other drugs, each person here reacts differently.
Posted 4/19/2012 8:34 PM (GMT 0)
NY-Sooner,

Definitely LDN - low dose naltrexone.

Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works! Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937


Posted 4/19/2012 9:11 PM (GMT 0)
I have been reading what you havee to say where do you find this ldn naxtron probably spelled wrong on humira very scared of it my mom has lupus and heart disease and i have had cancer 4 years been free of that my dr seem to thank humira is beest for me but i don't think so yesterday had bad day my ribs hurt so bad & my indigestin was bad to.Any advice for me. I would like to go as natural as i can .
Posted 4/19/2012 11:49 PM (GMT 0)
newbie2crohns,

Welcome to the forum.

Here are all the links on LDN, you can do your own due diligence:

Transdermal LDN (low dose naltrexone) put me in remission - Bottom line is it works!

For those of you considering LDN, or for those of you not familiar with LDN, I wanted to share my story:

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

Here's my story on LDN: I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10 (on scale of 1-10, 10 being the worst).

When I spoke with the compounding pharmacist, she mentioned that I may not be absorbing the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me a lot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too.

The THIRD day after I started the transdermal LDN, my bleeding went from a 10 to a 3. FOUR days after that ( full week on LDN), my bleeding STOPPED completely, after more than 1 1/2 years of continuous bleeding. Bottom line is it works!

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL. They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you. You can reach them at: 800-553-7429 www.skipspharmacy.com

Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org

www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org


and if you want to find what other patients have experienced when used LDN, choose UC, Or breast cancer, or Lupus, or Crohns Disease at:
www.ldndatabase.com

You can ask your GP or Gastro if he'll prescribe it for you, if not, I can give you the website where you can find a local doctor who is a prescribing physician:  http://www.ldnscience.org/find-a-doctor

put LDN in drop-down box, and then choose country and state. Alternatively, you can call Skip's Pharmacy and they can tell you who will precribe local to you.

Hope this helps. And I hope to those of you on the fence about trying LDN, give yourselves a chance...

Please let me know how it works out for you.


Posted 4/20/2012 12:48 AM (GMT 0)
LDN doesn't have enough evidence behind it, IMO, to be recommended as a front-line treatment before all the other drugs. Also, everyone I've seen on the Crohn's and UC forums who's on LDN also seem to be on extremely strict diets, tons of supplements, etc., so it might be the diet and supplements which are working, not the LDN.

That out of the way, there is no immunesuppressant available which doesn't also come with a list of side-effects longer than your arm attached. However, the list of side-effects longer than your arm is not put there to terrify the patients, as much as it may appear to be that way, it's put there to protect the manufacturer against potential lawsuits. The vast majority of patients will not suffer the vast majority of listed side-effects. Very long-term data is not available for the biologics yet, but so far they seem to be safe over the longer term. The cancer risk is literally neglible, unless you are an adolescent male also on 6MP/Imuran, in which case there does seem to be a slightly increased risk of lymphoma. The serious infection risk tends to apply to the over 60s, who are also suffering from multiple other conditions. In other words, if you are young and otherwise healthy apart from the Crohn's, you are not likely to get a serious infection on Remicade or Humira.

6MP and Imuran have been around for decades and the safety profile is good for them as well. A minority cannot metabolise them properly and thus can't take them, but this is something that is discovered early on via intensive monitoring. (You will have to have a blood test every 1-2 weeks for the first three months.)

Like I said, nothing is ideal and everything comes with potential side-effects, even the supposedly mild 5-ASAs. The most important thing, IMO, is to find something which works, ie gets you into remission. If you can achieve that, that's worth any amount of remote (and I mean remote) cancer, lupus etc. risk. Uncontrolled Crohn's itself is not particularly safe.
Posted 4/20/2012 12:51 AM (GMT 0)
That's a very well-reasoned post, and I agree with what you said.
Posted 4/20/2012 1:42 AM (GMT 0)
NCOT,

Sorry, but you couldn't be more wrong about LDN.
Posted 4/20/2012 1:46 AM (GMT 0)
InSoFla,

Sorry, but you couldn't be more wrong about my being wrong.
Posted 4/20/2012 1:53 AM (GMT 0)
Seriously, what is it with the relentless promotion of - for want of a better word - alternative treatments at the moment? It makes me laugh when folks talk darkly about the profit-pushing drug companies, and yet the only pushing of products I ever see going on on these boards are for things like LDN, clay with special powers (or something), and so on.

Remicade, Humira, 5-ASA, etc. drug reps are clearly missing a trick or two, I can tell you.
Posted 4/20/2012 9:47 AM (GMT 0)
TO INSOFLYa i find your info very interesting i for sure want to try it must meds they want to give u r bad if i can get releif without such bad effects im 4 it n im only 35 & have had cancer 4yrs ago & have bad gens im the only person in all family who havee had cancer or crohns my eyes are geetting bad so eexcus my typing but very inteeresteed what u have 2 say i take lorazapam daily it wont quit it but natural or with least side effects is best 4 me how do u feel now what meds havee u been on pleas talk im confusd
Posted 4/20/2012 2:17 PM (GMT 0)
Have you actually suffered from the bad effects?

If not, then take the d*mn meds for crying out loud.
Posted 4/20/2012 4:31 PM (GMT 0)

NiceCupOfTea said...
Seriously, what is it with the relentless promotion of - for want of a better word - alternative treatments at the moment? It makes me laugh when folks talk darkly about the profit-pushing drug companies, and yet the only pushing of products I ever see going on on these boards are for things like LDN, clay with special powers (or something), and so on.

Remicade, Humira, 5-ASA, etc. drug reps are clearly missing a trick or two, I can tell you.

I think part of the reason people push them is because those individuals found relief. It doesn't mean the alternative treatments are silver bullets, nor does it mean they should be used instead of first line recommended treatment from a G.I. doc, but many of us have hit a point where doctors' recommendations are worthless and the drugs that they prescribe do nothing but empty our wallets.
Posted 4/20/2012 4:42 PM (GMT 0)
@insofla

i'm not completely against trying LDN but right now i'm working very close with my doctor trying to find what works for me. I still haven't found anything yet. Do you know the price of the LDN your talking about? and how often you take it/ or how? For now i'm going to stay with what my doctor says and i may ask him what he thinks about it the next time i see him. I'm not sure about the LDN OR clay like NiceCupof Tea has mentioned we've heard a lot about but i'm not completely against it either.
Posted 4/20/2012 5:03 PM (GMT 0)
@nysooner

i'm not sure which has the least side effects but id he is going to use insurance he might be limited. My doctor wanted me to try remicade but the insurance company would not cover it until i tried a different drug like humira. So i tried humira and lets just say it didn't work for me. So now were going back to trying to get the insurance company to cover remicade so i can start it soon. So first i woudl find out what they would cover and then look at the side effects once you know your options.
Posted 4/20/2012 7:05 PM (GMT 0)
Mommyof2Little1s,

As I mentioned earlier:
LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream).

 

You take it nightly(only once a day) between 10 pm - 2am.

As to the how, it depends if you're on the transdermal cream or the oral pills.

 

Let me know if you have any other questions.

 

Posted 4/20/2012 9:41 PM (GMT 0)
insoflo

Like i said it sounds awesome, for sure gonna try where is this vsl 3 did u get this information by researching it your self , and do you have to follow up with gi dr. i have found that the meds just make me tired and effect my body since on humira i have been sick with respirtory and sinus infection and it has lingereed on . I was never sick except for crohns till i took humira i thank you for your info
Posted 4/20/2012 11:11 PM (GMT 0)
newbie2crohns,

The VSL #3 is a probiotic, if you have decent insurance you can get it prescribed by your doctor as VSL #3DS (double strength) and probably only have a copay. Probiotics are very important to keeping healthy gut and intestinal flora.

If you don't have good insurance, you can get VSL #3 from COSTCO or online (they must get into your hands via refrigeration), but they are expensive. Depending on the COSTCO, I've seen them run between $75. and $115.00

In general, when I start to feel a cold or bug coming on, I will double up on my probiotics and I don't get sick.


 

Posted 4/20/2012 11:39 PM (GMT 0)
I take Remicade and Methotrexate and have not experienced any side effects.
Posted 4/21/2012 1:22 AM (GMT 0)
At my last gi appt my doctor gave me a lot of samples of the vsl#3 and wrote me a prescription. I did not ask he was the one that brought it up. He said he has a few patients who thinks it helps them. That was the first I've heard of it. So I'm going to try the samples and if I notice any difference. I'm not sure if I'm going o fill the prescription or not. It just depends on how it works for me. He also gave me a powder formula for if I'm going to the bathroom a lot to take twice a day. He said it doesn't have bad side effects because it doesn't stay in the body long. I can take it as needed or twice a day. It's up to me. But it tastes really bad so I'm not taking it but I have it at home if I need it. The vsl tastes pretty bad too.


I honestly cant tell which stuff I'm taking is natural, a drug, supplement, etc. all I know is im taking the b12 liquid drops, a multivitamin, 4 apriso pills, just stopped the humira and switching to remicade but haven't started yet, question powder as needed, and haven't decided about the vsl#3 yet but ave taken a few doses.
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