Can you take LDN with other Crohns Drugs? Or Could a natural treatment help in addition?

[SallyJane]

Hi.

Having a bit of a panic! I have been taking LDN for almost two years and, during that time, it healed two fistulas. My Consultant, who didn't really want me to take LDN in the first place, was really pleased. I am not sure that I have at any point gone into remission.

I have been taking freshly compounded LDN, ordered from Skipps Pharmacy for about 4 months as I was concerned that the UK supplies were stale.

I had a specialise ultrasound today and was told that I have active Crohns, a fistulae and a collection. A hat trick! Joy!

When I go back to my Consultant with the results, he is, no doubt going to want to prescribe biologics, which I would rather avoid if possible.

If the LDN has stopped working, then I suppose I will have no choice, but I was wondering if any of you out there have had any similar problems, and what was done for you.

I am otherwise feeling well - the only thing I notice is a pain in my groin from time to time, and the odd pain when I think that my stools are trying to get through a narrowed intestine.

Feeling rather flat after receiving this news.

Can anyone help out there?

Sally x :ysmile:

 

[24601]

I can certainly understand your disppointment. It can be difficult riding the rollercoaster that is hope when we have been on a treatment that we think is working and then find out it isn't. And it can be difficult to accept that the evidence points to a treatment not working well enough when we have wanted something to work so very much and truly believed in it.

It does sound like LDN is not working well enough for you at the moment, which is not to say that it doesn't do something useful. But it looks like you need to add something in to the mix and as always only you can make the final decision on the risk/benefit balance for you.

It's definitely not easy and some of us will be a lot more worried about side effects from certain meds - and that can vary with time, the symptoms we're having and how we're feeling.

I would say that it's not just about quality of life and symptoms now but also where these issues might take you if undertreated. Would it help you to read more about others' experiences with biologics and see the range of experiences as there are a lot of positive ones as well as a few negative? Biologics are certainly the direction that I would be leaning in if I were in your situation, but it is a very personal decision. Research can help a lot, as long as you remember that the studies really do show that the negative events are truly quite uncommon because it's easy to read personal accounts and let those bad experiences take up more significance than they do statistically speaking. And if you've done all the research you can before your appointment, even on the treatments you think you don't want, then you can at least have an informed discussion with your doctor.

It sounds like your doctor has a good sense of perspective and rates his patients concerns highly since he went with LDN and was open-minded enough to recognize that it seemed to benefit you. I'd bear that in mind when listening to his advice even if it's not what you want to hear.

So sorry to hear about this downturn and sorry too that I don't have any specific LDN experience so my comments are fairly general.

What treatments have you tried in the past?

 

[JDTM]

Hi Sally -- Not sure about biologics, but I personally take Pentasa and LDN. I'm tagging Jmrogers4 in this -- I believe her son Jack may have been on LDN and another form of treatment at the same time.

This is purely a guess, but while you may need some more heavy-duty treatment in order to get your Crohn's and fistulas under control, I'm not sure if you'll have to stop LDN in order to do so. Depends what the doctor says though, of course. Keep us updated.

 

[nogutsnoglory]

It's not ideal to take biologics with LDN but it's OK as per the researchers who did the groundbreaking LDN trial for IBD.

Steroids are counter indicated if you take LDN as are any pain killers

 

[Jmrogers4]

My son has done LDN with Imuran but not with remicade. It was decided to do remicade alone first so as not to muddy the waters but it was put on the back burner in case the remicade needed a boost since he can't take methotrexate but we have not needed anything else in addition to remicade

 

[SallyJane]

Hi All,

Thank you for your replies. Yes, I have put all my faith into LDN, particularly as there are no side effects for me. It feels "safe".

I will research the other drugs again - I did this in the first place, but a long time ago.

I was wondering, could a specialist ultrasound, finding the fistulae, be the fistulae I previously had, but still showing up, even though healed? I am probably clutching at straws!

The weird thing is I feel much better than I have for a long time, so all this has come as a shock.

I will report back!

Again, thank you for your suggestions and support.

Sally x

 

[nogutsnoglory]

If the fistula was entirely healed it's unlikely, if there was a small opening it could be that it reopened. Most likely it's just a new fistula.

 

[DMS]

My son has been on Humira and LDN together for just over 2 years now. In remission, feeling great, but he is careful with his diet (no gluten, corn or lactose). His GI did not prescribe the LDN (a naturopath did), but he knows that the 2 drugs are both being taken and has no problem with it. His bloodwork continues to be great.

He had multiple fistulaes, a combination of LDN azathioprine and Hyperbaric Oxygen therapy got rid of 2 of them, Humira has completely healed the rest of them.

 

[SallyJane]

Hi. Me again!

I have yet to see my consultant about the possibility that the KDN is no longer working for me. I have been doing some research and it appears that low vitamin D or Candida overgrowth can cause LDN to stop working. In my last blood test, my vitamin D levels were highlighted as low. I am wondering if I get those levels back up by taking a supplement l, that the LDN will work once more. Has anyone experienced this? If so, how long did it take for LDN to start to take effect again?

I have also been having night sweats. Is this a sign that I am in an active flare, or could it be a side effect of the LDN? Do people with Crohn's have night sweats even when not in a flare?

Any help would be appreciated.

Sally x

 

[JDTM]

I don't experience night sweats, but I do supplement vitamin D, if that helps at all. Not sure if there's an actual corollary between vitamin D and LDN effectiveness in my case though -- it might just be a coincidence.

Candida overgrowth can certainly be a problem when it comes to LDN, that I have read. However, this is the first I'm hearing about vitamin D deficiency also being a potential factor.

When's the last time you saw your GI, and what did he/she say? I'm curious to know how you're doing overall.

 

[SallyJane]

Hi. This my third attempt at replying! My computer keeps seizing up.

Thanks for responding so quickly.

About 18 months ago, I underwent a specialist ultrasound. This diagnosed serious active disease, with a collection, and at the time, the GI concluded by saying that if I continued to have night sweats, then I should take antibiotics as "we don't want the collection turning into an abscess"

Fast forward to transferring from private treatment, to our NHS, I underwent a CT scan which concluded there was no collection. I then started taking LDN. I thought my worsening symptoms were due to the LDN, and just struggled through. Cutting a long story short, I was admitted to hospital for 3 weeks; I had an abscess which was blocking my right kidney, two fistulas, and in a dreadful state.

Refusing the surgery option, I continued to take LDN, which healed the fistulaes and the abscess healed. I also carefully followed a low residue diet.

All seemed to be fine until about 4 months ago, when I Started to experience pains in my groin; something which happened before. So, I visited my GI who organised a CT scan. It showed, again, that I had no collection but an element of active Crohns. I was asked to come back in 6 months time.
Not believing the CT results, in view of what had happened before, I paid for another ultrasound scan. This showed another fistulas, a collection, and the appearance of Crohns in another part of my intestines, as well as active Crihns on the original site. No abscess though.

So, I sent my results through to the hospital and I now have an appointment this Friday with my GI.

I REALLY don't want to have to take the chemo style drugs, and have been happy with LDN. (Except it appears not to be working any more!) This was why I was researching reasons why the LDN may not be working. I found that low levels of vitamin D can reduce the efficacy of LDN, as does Candida. I have no idea if I have the latter but I definitely have low levels of Vit D. I have started taking a Vitamin D and calcium supplement.

So, my symptoms now are just an intermittent pain in my right groin, night sweats and tiredness, but otherwise I feel well. No diarrhoea at all, even before I was diagnosed with the abscess. I have been eating pretty much anything I like, although careful not to eat things which could block my narrowed intestine.
I tried Pentasa a few years ago now, but it made me ill and ended up taking 6 weeks off work. One short course of steroids about 2years ago. Which didn't seem to do anything at all.

My sister suffers with Crihns also. It is obviously in the genes.

So, that pretty much covers it. I was even thinking of trying the mouldy bread idea, which has been the subject of a thread on here somewhere, but not plucked up the courage!

I just wanted to find out as much as I could about the possibilities as to why the LDN is not working as well as it should somthatbIncan have an intelligent discussion at the GI appointment.

Sally x

 

[JDTM]

I understand your hesitance when it comes to the heavy-hitter drugs treatment options, but please consider the fact that these drugs may help get your stuff under control quicker, which is the name of the game. You don't want lasting damage, as I'm sure you know, and LDN can be great but it's very slow acting, at least in my experience. My improvements over time were great, but they were so gradual that it almost seemed imperceptible.

No matter what you and your GI decide to do, I certainly wish you the best of luck. Keep us posted!!

 

[SallyJane]

Hi.

I thought I would post an update.

I saw my GI in May, and said that I had been doing some research on why the LDN may have stopped working. We talked about my Vitamin D levels as they were highlighted asvery low, and he said that most people with Crohns have low vitamin D levels.

He gave me four Vitamin D tablets to boost my levels. Two to take at the time of the appointment and two to be taken two weeks later. He said that the supplements (I had been supplementing with Calcium D3 Forte) would take a year to bring my levels up and whatever he prescribed for me woukd have an immediate effect.

I have noticed a remarkable improvement and the LDN seems to be working for me again. Not only that, but the extreme tiredness that I was suffering necessitating having to take a nap at the drop of a hat, has all but gone. I am still tired - yes - but not the bone tired feeling Inhad been experiencing for many months.

I wanted to share in case this happens to anyone else.

Sally