Help please with meds for teenage boys!!

[Ams-Qld]

:sign0085:Hi everyone!
Just preparing some questions for the next Ped GI visit, (which we are not taking our son to so we can talk nitty gritty stuff!). Has anyone been told why a GI would choose Aza over 6mp or vice versa? (I do know the basics but having a hard time working out the first call protocol?)
Also is methotrexate safer, (I know that sounds like an oxymoron!!!!!), than Aza and 6mp for a boy about to enter his teens?? All I can find on the net is that methotrexate can cause permanent nerve damage but nothing else. It is also not listed on carcinagen lists I have checked but Aza definately is (though not 6mp by name). I would love to have his Dr allow us to trial LDN (and have printed off the preliminary studies for him to read) but am wondering about the methotraxate if he is not keen for LDN.
At this point he is on just 50mg of Aza (I have fought against the suggested increase to 100 thus far, mainly because he is a almost 13 year old boy); and 800mg of Flagyl as he has peri-anal abscesses. I am hoping to get the Dr to agree to begin to taper his flagyl till we get to halve it. At the moment he is completely free of symptoms and is feeling great (I truly believe this is attributable to his vitamin/probiotic therepy in combo with the meds). I am just wanting to get some answers re treatment of teens as I have noticed on here some of you are also changing meds for this reason if you have boys.
Thank you soo much, I have learned so much from everyone already, and I hope hope this finds you and yours happy and healthy atm!!! Ams xx

 

[Ams-Qld]

Oh, sorry I forgot to also add; is the reason teen boys seem to be at greater risk of lymphoma with certain meds to do with testosterone? Why are girls virtually unaffected?
Also, is there any proof that the risk is increased with the dosages? If so, what are considered "somewhat safe" levels?
NB; just not happy that Aza is listed along with absestos on the Class 1 list!!!!!! But please don't get me wrong, I know he needs meds. I know they are helping him keep his bowel healthy. I am just looking for the best mix for my son.
Thank you!!!!! xxx

 

[my little penguin]

The next couple lines in there refer to cancers, something specifically called non-Hodgkin
lymphoma. I think, at least in my practice, when I’m prescribing these medications, this is where
I spend most of my time talking with patients and their families about the real risks of cancers
that are associated with these. And I find when I look around the Internet for information, this is
what pops up most often. So we do have to put things in perspective here. The risk of developing
lymphoma or non-Hodgkin lymphoma, which really is the main cancer that we worry about with
these medications, is only about 4 people out of 10,000 people who take it. To keep that in
perspective, on no medications, just a random person walking around the street in the United
States has approximately a risk of 2 people out of 10,000. So although if you were writing a
news article, you might write that these medications double your risk of cancer, really what
we’re talking about is 2 people out of 10,000 and increasing that to 4 people out of 10,000. I did
put a line there because of course having lymphoma is not the only thing you have to worry
about. Is it treatable? Can you make it through? Fortunately, more than two thirds of people who
develop these lymphomas are actually treated completely, and it’s not a further problem. So,
again, not something you want, but treatable if it develops.

from:
http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf


From my prospective-
having a child who failed lots of drugs.
I would ask why the increase in 6-mp?
was it not doing its job if so then the increase from 50 mg to 100 mg is not going to increase your overall risk your just are not getting the benefit of the healthy bowel.
You want to try to make whatever drug you are on work. If it is not then move on.
With each switch the odds of maintaining remission decrease period.
Plus once you fail a drug -- odds are you will never go back to it.
Since there are limited number of drugs and are kids will probably have the disease for a while ( 80 + years)
If something is working then now is not the time to try and fix it just for a 4 in 10,000 risk factor.
Odds of drowning 1 in 2000 I believe. Dying in a car crash 1 in 250.
Personally I like the odds of lymphoma over a car crash.

Ds took MTX injections for 2 months. Docs start with 6-mp since they know more about it in terms of crohn's only because it has bee used more. Most have failed 6-mp by time they get to MTX so the odds of passing it are slim.
MTX has a whole slew of side effects which you may or may not see (similar to tylenol or aspirin - both are poison in large amounts).

A year ago if you had told me I would want to give Ds remicade- I would have called you crazy. I had a plan to stick to En only - no drugs no side effects - all would be good.
But tonight my son told me how good he felt especially on infusion day which is so different from the curled up ball crying from stomach pain. This is the child who wouldn't eat since it hurt too much. The weekly vomiting sessions.
I am not saying this to tell how bad it is for Ds but to get you to realize if a med works at all for you and this disease then count that as a blessing that it is.

Now that I am on a soap box.

LDN cross the blood brain barrier period. Your child's brain is developing.
IT has not been studied to determine what long term effects it will have on developing brain's of children. It also is a TNF-alpha blockers (like remicade - immunosupressant) Whenever the immune system is suppressed in iBD patients regardless of the med that is when the increase of cancer shows up so in a drug that only a relatively small group of people have started to take from a particular subset such as IBD the real cancer risk may not be known.

Certain combos of drugs have been fine in other subsets RA patients but not so in the IBD group.
I think with a drug like LDN there needs to be more time to observe what is really happening first before one can say it is without harmful side effects for children especially IBD children.

OK off my soapbox.
I wish you all the best on your talk with the GI.
I hope you and the GI can come to terms with a plan that will work best for your child and still let you sleep at night.

There is no set plan and what works for one may not work for someone else.
Good luck:ghug:

 

[Clash]

MLP, I posted a link once, but now can't find it, that mentioned it should be noted that with the combo of Remicade and MTX there have been no reports of HSCTL with RA patient study. Now when I read this I thought it might fall into the category you were speaking about above(combo drugs being fine in other subsets) do you agree? I know C's GI once said that when those drugs were first started being used IBD doctors mostly prescribed 6MP/Imuran and RA docs tended to go with methotrexate but now each subset has come around to both especially GI to MTX. Do you have any information or your opinion about this?

 

[Ams-Qld]

Thanks MLP! I do know the risks are low and if my child wasn't a almost teenage boy I wouldn't be too concerned. His GI's suggested dosage rate was not for therapeutic reasons (he is in remission it looks like) but for weight related. I did notice on here that some people had mentioned their GI suggested the change to MTX for their sons as the teen years commenced, just wondering about that...definate food for thought on the LDN.
BTW so glad your son is doing great! xx

 

[Catherine]

hi
My daughter has aza dose also been increased due to weight gain. Did you gi ever mention 75mg Sarah did that for a while. There are 25mg tablets available.

 

[Ams-Qld]

Hey, no he didn't Catherine, I will ask about the 75mg dosage - thanks! xx

 

[Sascot]

I know how you feel. I am also mainly paranoid about Aza/6mp because Andrew is 13 and male (obviously :ybiggrin. I was not a happy camper when we had to start the Aza. We were on 50mg then were going to increase to 75mg but his liver ALT went through the roof so came off immediately.
As to the increase of the tablet I remember the doctor saying - if you are going to have risks with the medication, there is no point having risk and no therapeutic benefit by keeping on a lower dose.
The GI told me that in Scotland they always have to give Aza first and fail that before they are allowed to prescribe 6mp. So even though Andrew's TPNT test was borderline that he could cope with Aza, they still had to give that first even though the 6mp is easier on the liver!! :ywow:
Sounds like our boys are quite similar. Andrew is doing well just now apart from peri-anal abscess/fistula. He was on Flagyl for 4 months but has been off that for 2 months now.
Has your son had the test for therapeutic levels (I think 6-TGN)? That way you would know whether the 50mg was at the right therapeutic level or if you do need to increase

 

[Ams-Qld]

Thanks Sascot!! How old is your son? I will ask about the test next time. It can get a little frustrating that we have to be the ones constantly looking for information rather than having it offered by the Drs! xx

 

[my little penguin]

Opioid Addiction

The following adverse reactions have been reported both at baseline and during the Naltrexone clinical trials in opioid addiction at an incidence rate of more than 10%:

Difficulty sleeping, anxiety, nervousness, abdominal pain/cramps, nausea and/or vomiting, low energy, joint and muscle pain, and headache.

The incidence was less than 10% for:

Loss of appetite, diarrhea, constipation, increased thirst, increased energy, feeling down, irritability, dizziness, skin rash, delayed ejaculation, decreased potency, and chills.

The following events occurred in less than 1% of subjects:

Respiratory:
nasal congestion, itching, rhinorrhea, sneezing, sore throat, excess mucus or phlegm, sinus trouble, heavy breathing, hoarseness, cough, shortness of breath.

Cardiovascular:
nose bleeds, phlebitis, edema, increased blood pressure, non-specific ECG changes, palpitations, tachycardia.

Gastrointestinal:
excessive gas, hemorrhoids, diarrhea, ulcer.

Musculoskeletal:
painful shoulders, legs or knees; tremors, twitching.

Genitourinary:
increased frequency of, or discomfort during, urination; increased or decreased sexual interest.

Dermatologic:
oily skin, pruritus, acne, athlete’s foot, cold sores, alopecia.

Psychiatric:
depression, paranoia, fatigue, restlessness, confusion, disorientation, hallucinations, nightmares, bad dreams.

Special senses:
eyes-blurred, burning, light sensitive, swollen, aching, strained; ears- “clogged”, aching, tinnitus.

General:
increased appetite, weight loss, weight gain, yawning, somnolence, fever, dry mouth, head “pounding”, inguinal pain, swollen glands, “side” pains, cold feet, “hot spells.”

Post-Marketing Experience:
Data collected from post-marketing use of Naltrexone show that most events usually occur early in the course of drug therapy and are transient. It is not always possible to distinguish these occurrences from those signs and symptoms that may result from a withdrawal syndrome. Events that have been reported include anorexia, asthenia, chest pain, fatigue, headache, hot flushes, malaise, changes in blood pressure, agitation, dizziness, hyperkinesia, nausea, vomiting, tremor, abdominal pain, diarrhea, elevations in liver enzymes or bilirubin, hepatic function abnormalities or hepatitis, palpitations, myalgia, anxiety, confusion, euphoria, hallucinations, insomnia, nervousness, somnolence, abnormal thinking, dyspnea, rash, increased sweating, and vision abnormalities.

Depression, suicide, attempted suicide and suicidal ideation have been reported in the post-marketing experience with Naltrexone used in the treatment of opioid dependence. No causal relationship has been demonstrated. In the literature, endogenous opioids have been theorized to contribute to a variety of conditions. In some individuals the use of opioid antagonists has been associated with a change in baseline levels of some hypothalamic, pituitary, adrenal, or gonadal hormones. The clinical significance of such changes is not fully understood.

Adverse events, including withdrawal symptoms and death, have been reported with the use of Naltrexone hydrochloride in ultra rapid opiate detoxification programs. The cause of death in these cases is not known (see WARNINGS).

Laboratory Tests:
With the exception of liver test abnormalities (see WARNINGS and PRECAUTIONS), results of laboratory tests, like adverse reaction reports, have not shown consistent patterns of abnormalities that can be attributed to treatment with Naltrexone.

Idiopathic thrombocytopenic purpura was reported in one patient who may have been sensitized to Naltrexone in a previous course of treatment with Naltrexone. The condition cleared without sequelae after discontinuation of Naltrexone and corticosteroid treatment.

From:
http://www.drugs.com/pro/naltrexone.html

Again the less than 1%
Are a little scary.

 

[Tesscorm]

MLP, do you know if the risks associated with Naltrexone are based on the 50 mg dosage or the LDN dosage of 4.5 mg. And, would it it make a difference?

Ams-Qld - my son is 18 and his ped GI had been talking about adding metho to his EN treatment. I asked him why metho and not aza/6mp and he felt the cancer risks were lower with the metho. Unfortunately, I didn't get into much more detail as my son is being transferred to an adult GI so the decision wouldn't be made until we moved to the new GI.

 

[KWalker]

It makes a huge difference Tesscorm. I've read many studies that say a dose as low as 4.5 is virtually harmless. I'm sure Kev could verify that as well. Naltrexone (like stated above) is used in higher does to help with addiction. Therefore you need to produce the same effects while getting the addict off the drug and then weaning them off the naltrexone. When using a does from 1-4.5mg to treat R.A., crohn's, etc you don't get the same effects. To me I'd say LDN is one of the safest drugs available right now for crohns..if you can get it.

My old doctor wanted me on Imuran and I refused it because of the side effects. As low as people say the risks are, there is evidence on here through posts that those side effects do happen and to me it's not worth it. I took Methotrexate injections (much more effective than orally) for awhile and although I didn't have any side effects there is a risk of making men sterile. I'm not taking it anymore but I do want to get tested to see if it's done anything but it bothers me that it can happen.

 

[Tesscorm]

Thanks Kwalker!

 

[my little penguin]

Table. Side Effects of Low Dose Naltrexone in 121 Patients.
Neurological Side Effects
Anxiety
Drowsiness
Headache
Dizziness
Insomnia
Muscle pain
Vivid dreams
Mood change Trouble concentrating
Gastrointestinal Side Effects
Nausea Abdominal pain Diarrhea Anorexia
Other Side Effects
Rash
Hot flashes Weight gain
Number
of Participants with Side Effects 19
14
14
13
10
10
6
4
2
15 14 10 10
1 1 1
Percentage of Participants with Side Effects
15.7
11.6
11.6 10.7 8.3 8.3 5.0 3.3 1.7
12.4 11.6 8.3 8.3
0.1 0.1 0.1

http://www.gidoctor.net/client_files/file/Naltrexone-Side-Effects-and-Efficacy-in-GI-Disorders.pdf

This study was done on LDN but through a survey for side effects not a controlled study.
The key take away it does effect the brain and your child's brain is not done developing.

 

[my little penguin]

http://www.sciencebasedmedicine.org/index.php/low-dose-naltrexone-bogus-or-cutting-edge-science/

I am not saying it does not work . I am saying caution needs to be exercised and making statements such as no side effects are not doing anyone any good .

The increase risk of T cell lymphoma was not realized in clinical trials - too small of a sample size. LDN has not been used in enough ibd adults for long enough to determine what the real side effects are since true clinical trials may not be completed.

 

[Tesscorm]

But, naltrexone has been used for many years, if there was a risk of T cell lymphoma, wouldn't that have shown up in the earlier trials for naltrexone (not, specifically, LDN).

But I do understand your concern re the developing brain. As the initial use of naltrexone would have been for addicts, there wouldn't have been much incentive to study the impact of naltrexone on young children.

(by the way, just going to read your links... perhaps answers to my questions above are in there???)

 

[KWalker]

When you're dealing with children that haven't fully developed yet, everything is risky.

 

[my little penguin]

As far as T cell lymphoma or anything else LDN or even other drugs - they know people with ibd react differently so adult studies on the general population may not have shown the link.

In science you need to examine your specific group in a controlled setting so as many other factors can be reduced as possible . Then you need to be able to reproduce those results.

That is why the FDA now wants drugs to be used in kids to be specifically tested in kids since they are not just lighter adults.

There are a lot of unknowns in long term treatment ( including Remicade) and how it effects children. I just wanted to make sure people reading didn't just assume LDN or any other drug was safe until more studies have been done or more kids/ adults with ibd have tried it to create reproducible results.

 

[Tesscorm]

I hope I didn't come across as questioning your reasons for posting or doubting your posts! I'm just asking bcz, as u know I wud like Stephen to try LDN bfr other meds but, I want to make sure I'm not building myself a sunny little LDN bubble! . So I very much appreciate your info! Tks!

 

[jmckinley]

I have a 15 yr old son. He is currently on methotrexate/remicade mix. GI preferred mtx over aza/6mp because of the lymphoma risk in combining drugs with remicade.

He used to take 6mp alone. When he did, he took 37.5 mg/day. They did 6mp levels in bloodwork constantly to make sure the level was right. We started out at 50mg, but backed it down due to bloodwork.

Only changed meds because 6mp stopped working after 2 years.

 

[Ams-Qld]

Thanks everyone! It is certainly important to hear both sides of the coin!!! MLP I will definately read all studies and research (and get the GI to) before I would go down the LDN path, thanks for posting some btw! I suppose to me those side effects posted (at most likely 50mg dosage for treating people with opiate addiction) don't look as bad as the known effects of Aza which is a class 1 carcinagen. You are right the effects of all are there and are scary, we just have to weigh them. At the moment I suppose I am weighing possible risks versus definite, both are lousy!!!
I am still looking for answers re risk compared to dosage; and the known risks of mtx?? Thanks guys you are so helpful and supportive and it means a lot!!! Ams xxx

 

[Ams-Qld]

Looking at those side effects in the Low dose section though I have to say the psychological ones concern me the most as I know my son is VERY affected by prednisone psychologically and that is something he does not nedd on top of everything else!! Ta xx

 

[Kev]

I don't want to intrude, and I'm not here touting the LDN bandwagon. Every treatment does carry risk. If whatever you are currently using (or your children, loved ones, etc..) is working, don't rock the boat. If, however, one is seriously looking at treatment options, I would offer the following.... I'd seen/weighed the risks of all the other known treatments, when I first saw an article on this website about LDN, the thing that really caught my eye was that... in comparison, the risks of LDN seemed mild by comparison to the "traditional" treatments. Not risk free, but a far cry from what came with the others. Now, that is not just my 'untrained' opinion, doctors who give it a serious look concur. (although many won't look at it, or dismiss it as 'unproven'). One of my primary reasons for pushing to be guinea pig/lab rat at the time was that I wanted there to be a 'safer' option for treating this disease if my children should ever develop it. Bad enough they had inherited a higher risk of getting it thanks to my contribution to their genes. So, when it initially worked for me.... then kept on working, I wasn't just glad for me, but for my kids.... AND... for anyone else out there who might benefit from my lab rat experiences.

As for comparing LDN with Naltrexone side effects... my understanding is that the trials for getting Naltrexone approved originally dealt with doses of 150 - 300 mg total per day.
I believe that people using Naltrexone typically take doses in that range. As you can see, that is far above the 4.5 mg typical of LDN. Doesn't mean there are no side effects from LDN. Mine were the vivid dreams. Never had any others, in almost 5 years.
Really miss the dreams. There are others, but if you compare them to the side effects of their counterparts, I think most will agree they are at the small end of the effect 'scale'.

 

[Ams-Qld]

Thanks Kev! Certainly reading your posts helped shape my thoughts re LDN. My son is 12 and is on these darn drugs for the rest of his life and so I just want to find the safest option for him that gives him the best benefit.

 

[my little penguin]

Safety in Crohn's Disease

Data from 264 patients who received methotrexate suggest that low-dosage methotrexate is safe when prescribed for Crohn's disease. Adverse effects occurred in 46-49% of patients.[12,15] No serious adverse effects, such as leukopenia, bone marrow toxicity, hepatotoxicity, or serious infections, were reported in several trials.[9-15] Methotrexate therapy was discontinued in 3-27% of patients because of adverse effects,[9,11-15] which were described as frequent by one study[14] and as mild by three studies.[9,13,14] The frequency of adverse effects was similar in both the methotrexate and placebo groups in one placebo-controlled trial.[9] Nausea and vomiting occurred in 12-40% of patients, headache in 10-18%, liver abnormalities in 15-53%, pain in 13%, pneumonitis in 7%, and cold symptoms in 25%.[9-15]

Low-dosage methotrexate is safe for patients with rheumatoid arthritis.[17] Further evidence, from a study that examined long-term hepatic effects of methotrexate in 20 patients with either Crohn's disease or ulcerative colitis, indicates that it also is safe for patients with inflammatory bowel disease.[18] The mean dosage was 20 mg/week (range 5-50 mg/week). The mean cumulative dose was 2633 mg, and the mean duration of treatment was 131.7 weeks. Liver biopsies were performed for all 20 patients, and the study concluded that significant histologic liver damage is rare and surveillance liver biopsies are not warranted.[18]

Risk factors that should rule out methotrexate administration are hepatic disease (serum transaminase > 100 IU/L, bilirubin > 2 mg/dl),[11] consumption of more than seven alcoholic drinks/week, or weight more than 40% above ideal body weight.[9]

In two studies, patients were given folic acid supplementation to prevent hematologic adverse events associated with methotrexate.[9,14] Methotrexate is a folic acid antagonist; however, whether hematologic toxicities associated with methotrexate are partially attributable to folic acid deficiency is not clear. Patients in one placebo-controlled trial were given folic acid 1 mg/day if methotrexate was suspected of causing adverse effects.[9] In a retrospective study, 14 patients were given folic acid to help control adverse effects.[14] Evidence is insufficient to strongly support folic acid supplementation with methotrexate.

from:

http://www.medscape.com/viewarticle/434451_4

There are Many others studies on MTX.

Hope that helps.

:ghug:

 

[Ams-Qld]

Wow, MLP you are now my official go to for studies!!!! Yay!! Thanks!! Since the above report seems positive re mtx in crohn's, do you know why they generally choose aza/6mp first? Is it an effectiveness thing?? Ams xx

 

[DustyKat]

This study on the bioavailability of Imuran v's 6mp suggests that Imuran has superior bioavailability than 6mp:

In comparison, patients on 6-mercaptopurine therapy were able to achieve similar erythrocyte 6-thioguanine levels to the Imuran treated patients, with a relatively lower dose. However, when one makes an equivalency comparison based on a conversion factor of 2.08 when comparing 6-mercaptopurine to azathioprine, patients on Imuran therapy require 44% less drug in order to achieve an equivalent erythrocyte 6-thioguanine level. This may be attributed to relative differences in drug bioavailability. 6-Mercaptopurine is well recognized to have poor oral bioavailability compared to azathioprine, which could be dependant on the influences of food.24 Moreover, previous studies have also shown that the absorption of 6-mercaptopurine actually decreases with increasing doses of drug therapy.25 These differences may have clinical relevance when considering the need to tailor drug therapy in order to optimize erythrocyte 6-thioguanine metabolite levels.20 Unpublished data from our laboratory would support the role for optimizing anti-metabolite dosages to achieve an improved clinical response in patients with low erythrocyte 6-thioguanine metabolite levels (< 250 picomol/8 × 108 red blood cells).

http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2036.2000.00812.x/full

...but as to why some doctors prefer one over the other I don't know. Imuran is the parent drug of 6mp.

As to Methotrexate, this is an interesting article regarding the risk of lymphoma in IBD generally and when medication is thrown into the risk. Makes for a very good read:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886374/

Your son has perianal abscesses doesn't he?
If so he is not symptom free and he is not in remission. I hope that doesn't sound nit picky as that is not my intention. :eek2:

Flagyl doesn't need to be tapered. Why do you want to do that?

Dusty. xxx

 

[momoftwinboys]

Hi there. My son is 11 dx a year ago. He started on 75mg aza and was upped to 100 as his levels were not therapeutic. He started remicade last week. We were given option of mtx or remicade or switch to 6mp with remicade suggested.
Our idb nurse indicated that it was not uncommon to have flu like symptoms the day after the mtx shot. Also, most kids prefer pills to a shot as to why aza was given, therefore better compliance and QOL.
Dr said 6mp seems to be preferred on east coast where as west coast hospitals prefer aza.
Good luck in whatever you choose. No easy choices and all kids react differently to the meds.

 

[Ams-Qld]

Thanks Dusty! I was having a hard time findind 6mp v Aza info. Yeah I probs meant he is symptom free other than the abscesses, eg no fever/fatigue/pain/D/weightloss etc. Also his bloods a few weeks ago were not really elevated. Actually other than the abscesses (which are looking good right at this moment) he is the best since pre dx. The desire to taper the flagyl is just because he was previously on a lower dose from the GP that was working, when the GI saw him he upped it. Just want to check it is necessary to be that high.
Yeah, thanks momoftwinboys! I am starting to wonder here if the initial 6mp/aza choice is just preference too. Not a problem at all, just wanted to know...I find my GI visits are soo rushed (as he only works in his practise one day a week) and he is so busy. He is very nice and extremely qualified, but I do find I have to push for information.
Thank you lovely ladies! xx

 

[Ams-Qld]

Hi everyone, just an update; called the GI two weeks ago as our son was having problems with the nerves in his fingers. Probably caused by around four months of continual flagyl use (though the Dr said it usually takes longer for that to be an issue). Dr said to stop for awhile and made an app for us to come in and chat last week.
Saw the Dr Thursday. Told him our son was going well, no dh, no pain, had gained weight and grown heaps in height. His abscesses are still small but there; draining everyday. He has ordered an ultrasound on the abscesses and will do an MRE and pill cam early in the new year. Was prepared for a long discussion about his Imuran, but the Dr was very happy to let us trial off as he is not immune to chicken pox and we would like to get him immunised again when the Aza is out of his system. We agreed to put him back on a lower dose of flagyl for the foreseeable future as it is working well other than the peripheral problems. So I go home feeling fantastic!!
Friday night he comes home from youth group with a raging fever. And my emotional high comes crashing down. I can't be 100% sure that it wasn't just a virus, but he also started dh and you could have fried an egg on his head all day Saturday. Praise God we had a flagyl script on hand and he is now fever free and has stopped the dh. Abscesses still look good and draining. Unfortunately we had to put him straight back on the strong dose hoping that it would keep the infection at bay (if indeed that's what it was). Praying now he will have no more nerve probs and can keep on the antibiotics and have this awful thing heal!! So as of today I am grateful he is feeling well, grateful that the flagyl is working, God is good! Thanks for the opportunity to share this stuff with others who I know understand. Blessings to you all, hope your precious ones are feeling well! :ybiggrin:

 

[Farmwife]

I hope things get better and better.
HUGS

 

[kiny]

from:
http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

I wish people would stop linking this.

Dr. Siegel who they interviewed is not impartial and the conflict of interest invalidates anything he says.

A person who works for the same companies that sell humira and infliximab should not be asked how he feels about TNF-blockers. I wish the forum simply blocked people from linking it.

TNF-alpha blockers lower lymphocyte counts and any damage lymphocyte encounter in the form of DNA damage needs to be repaired, if lymphocyte count is too low, the immune system is incapable of doing this and the result in some people are the deadly cancers.

I am not saying someone should or shouldn't take anything, but when you want to weigh the risk versus benefits, for the love of God don't use CCFA as a source. CCFA exists through big pharma, they are not impartial.

LDN acts on the opoid recepetors that are very prevelant in the gut and in the brain (the marijuana goverments keep complaining about acts on the opoid receptors too, the cannabidiol or CBD in them cause the anti-inflammatory effect in the gut, which is why people can get both high and feel better, opoid recepors are concentrated in the brain and gut. One of the side effects of LDN is the nightly vivid dreams, the effects LDN has on the brain is the cause).

 

[my little penguin]

Kiny - with all due respect I love your post btw.
Tnf blockers work for some people including my son and since the big pharmacy people spent money to research them and sell them - I am going to look towards whatever science based research I can find .
Last time I checked most of us get paid to do our jobs and drugs are no different - you have to pay people - no one works for free.
Ccfa is a good resource as is crohn's forum .
I site whoever has facts based in science .

 

[jmckinley]

So glad to hear things are going well. Hope the good results continue!!!!