Cat's LDN diary

[Cat-a-Tonic]

I figured I should start my own thread for this, so here goes. I've started taking LDN as of 12/10/2016 and I wanted to journal my experiences with it.

Bit of background about me: I am not fully diagnosed but I have some type of IBD. I flared up in July 2016, was hospitalized for 5 days in August, and have been on pred ever since my hospitalization (started at 40 mg, currently down to 10 mg, and from what I've read it's okay to be on 10 mg pred or lower while on LDN - I will of course continue tapering down off of pred). The only other IBD med I'm on is Lialda, and that's not strong enough to keep me from flaring (I was on Lialda only when this flare began). Because I'm not fully diagnosed, my GI said no biologics and no immunosuppressants, so LDN seemed like a very good option to try. Low risk of side effects and potentially very high rewards - my GI agreed, so LDN it is. I'm trying to get out of this flare fully and I feel like LDN could be the key to lasting remission. remission is, of course, the #1 goal.

I've started at 2 mg of LDN, and if that goes well then I will move up to the standard 4.5 mg dose. Having only been on LDN for 2 days, it's probably too early to say for sure whether I'm experiencing any benefits yet. I haven't had any side effects at all - I was told to expect vivid dreams and/or sleep disruptions for the first few days, but I haven't experienced anything like that. I've actually slept quite well with no notable dreams. (The only dream I can recall is that it was supposed to snow, but in my dream it didn't - not exactly a crazy dream!)

It's only been 2 days so far on LDN so it's probably too soon to say for sure whether I've noticed any tangible benefits. My guts do seem less gurgly though. Also, at the compounding pharmacy, they told me that on LDN I might experience health benefits outside of my IBD - and I will say, my bladder feels less irritated and I feel less bladder urgency. Not sure if that's the LDN or not? At any rate, things do seem to be moving in the right direction.

I have very high hopes for LDN, and so far it seems to be going fine. It's not expensive (my insurance wouldn't cover it, but even so, it was only $40 US for a month's supply of 2 mg LDN which isn't bad at all). It holds so much promise and I'm really happy to be on it, I hope that this is what gets and keeps me in remission. I need this to be my miracle drug.

 

[Cat-a-Tonic]

I did have a restless night last night, so I guess that side effect has now happened. You know how when your mind is racing and you can't sleep because of it? I think I was dreaming that my mind was racing and in my dream I couldn't sleep because of it. It was all rather meta. I'm pretty tired today but still doing okay.

Yesterday I had an IUD put in, so I was fairly crampy yesterday and a little crampy this morning. I seem to be okay now though. I wasn't sure how my guts were going to respond but they seem to be okay.

 

[Cat-a-Tonic]

Day 4 of LDN. Another night of not sleeping well. I didn't get to bed on time, either. Our furnace stopped working yesterday so the house was freezing last night, and the emergency furnace repairman didn't show up until like 9:45 PM. I can't sleep when I'm cold, so we had to wait for him to replace the faulty part and restart the furnace and then wait for the house to warm up a bit before I could zonk out. I did sleep fairly well for awhile, and I don't recall any dreams. But then around 5 AM, I woke up with a jolt and felt fairly jittery, with racing thoughts, and couldn't get back to sleep after that.

I was going to try tapering my pred today, but I am thinking that with everything my body's been through in the last week (starting LDN and getting an IUD), that maybe I shouldn't do anything further at the moment to stress out my body. So the plan is that next week I'll try tapering from 10 mg to 9 mg pred.

I'm feeling pretty well aside from being tired. Guts are quite calm and I'm having 2-4 formed bowel movements per day. My weight is up a bit and my appetite is good. I'm still doing the low-FODMAP diet (with a few cheats) and that's going well. I need to start exercising more; I had been going out for regular walks but now it's so cold out (wind chills of -15 today, brr) that I can't go outside for walks. I do have a treadmill so I need to get myself walking on that more.

 

[Cat-a-Tonic]

Day 5 of LDN: I took an OTC sleep aid last night and I did sleep a bit better. I still woke up at 5 AM, but this time I actually managed to fall back asleep (my alarm goes off at 6 AM, so that was an hour of sleep that I really needed!). I feel pretty good today. I plan to start working out regularly again soon - not just walking but weight-lifting, which is my favorite thing. I haven't done a lot of exercise aside from walking since my flare started in July. I think I'm finally feeling well enough to start again, though. I'm very encouraged!

 

[Cat-a-Tonic]

Day 6: I slept pretty poorly last night. I did take an OTC sleep aid again, but it didn't help as much. I woke up several times in the night, and once again I woke up at 5 AM. Couldn't get back to sleep this time, unfortunately. So I'm fairly tired today. Still no vivid dreams though, I think that side effect skipped me.

As I mentioned yesterday, I was finally feeling like I could do a workout, so that's what I did. I lifted some weights and that felt really good! I used slightly lighter weights than I had been using before this flare, and didn't push myself much, as I want to ease back into lifting. That went well, I haven't lost much strength and I found the workout to be pretty easy. I plan to lift again on Sunday - I would lift again tomorrow, but I have to save my energy for shoveling snow tomorrow, as we're getting a big snowstorm rolling in. So, tomorrow shoveling and Sunday weights. I like having fitness plans again!

 

[Cat-a-Tonic]

Day 9: I took a 2 hour nap yesterday and then once again slept poorly at night. For once I didn't wake up at 5 AM, but I did wake up at 4 AM. I also did have one annoying dream, I don't know if you'd call it a vivid dream but it was stupid - I dreamed I was at work and everything was going wrong with the computers. Then I had to wake up and go to work for real - ugh, stupid dream!

Guts-wise I'm still doing quite well. I'm having 2-4 formed, firm bowel movements per day and almost no pain, almost no nausea (it's very sporadic and mild when it does happen, and the mild occasional cramping could be due to the fact that I had an IUD put in a week ago). My weight is pretty steady and I'm starting to get back into exercising again.

I did have a very stressful time this weekend, I found out that my grandma almost died (she had a cardiac arrest, not breathing and no pulse and face was grey, but then she started breathing on her own and apparently her heart started beating again on its own). I cried a lot this weekend and I was sure the stress was going to do bad things to my guts, but so far the guts are still fine - I've had one perfectly formed bowel movement so far this morning and no nausea, no pain, no cramping. I don't think my grandma is going to be around a whole lot longer, so if LDN can sort of inoculate my guts from stress and sadness, that would be great. It was the death of my grandfather that set off this flare in the first place.

 

[Cat-a-Tonic]

I woke up exhausted this morning so I assumed that I got a poor night's sleep, but my fitbit sleep tracker says that I slept pretty well. I am coming down with a cold today, though, so that's probably why I'm feeling tired. Lots of people at work have been coughing and sniffling, so I guess it was my turn to catch the cold that's been going around.

I had some dreams last night but don't remember what they were. Guts are a bit upset today but that's because of the cold - I always get increased gut symptoms when I catch a cold/virus, so that's par for the course. I've been drinking a lot of water to stay hydrated, and I'm hoping this cold is a short one. I'm putting my exercise on hold for now so that I can rest and recover.

 

[Cat-a-Tonic]

Still exhausted, still have a cold. Woke up at 4:30 AM and had a hard time getting back to sleep after that. Guts are okay, though. I had some cramping yesterday, but I had no d. I had 2 formed, firm bowel movements yesterday. They were basically perfect. So LDN does seem to be helping my guts! It's not diet because I've been cheating a bit on low-FODMAP (I had a bunch of ice cream the other day, and yesterday I had hot chocolate and a donut!).

 

[scottsma]

How are you after your IUD fitting ? Has the cramping gone.? Keep warm and plenty hot drinks,for your cold and NO uneccessary exertion mind/

 

[Cat-a-Tonic]

I'm still having a bit of bleeding since the IUD was inserted, I've had to wear a pad ever since. The cramping is mostly gone, I had a bit of cramping yesterday but none today so far. As for the cold, I'm not exerting myself (not going to the gym and not going on walks either) and I had soup for dinner last night and orange juice this morning. I'm going to have some hot tea in a little while.

 

[Cat-a-Tonic]

Doing better day by day. I still feel a bit congested and tired, but other than that, I think this cold is on its way out. And really the congestion could just be from the dry winter air, and the tiredness could be from not sleeping well and/or holiday stress.

My guts are great. For the past few days I've been having 2 bowel movements per day, once in the morning and once in the evening, formed and firm and normal looking. I had no cramping yesterday at all. Hopefully soon I'll start sleeping better - it's been less than 2 weeks on LDN so I'm sure my body is still adjusting. I'm going to wait until I'm fully adjusted to this dose (2 mg) before I ask my GI to go up to the normal 4.5 mg dose. Even on this very low dose, and even though it's only been something like 12 days, I can tell I'm doing better.

Sleep is still something of an issue. I'm still waking at 4 or 5 AM and having a hard time getting back to sleep. If I could just get over the hurdle of staying asleep past that time, I'd be great. I'm not quite sure what else I can do - I've tried OTC sleep meds, I wear a sleep mask to keep light out, and I use a white noise machine to drown out any sounds. I also take 25 mg amitriptyline before bed which does help me sleep, but it's not strong enough to keep me asleep the whole night I guess. Hopefully it's just a matter of me adjusting more to LDN and then I'll be able to sleep better.

And honestly it's not too big of a deal. I'm tired but I can deal with that - my guts are feeling good which is the important thing.

 

[Cat-a-Tonic]

Still doing well on LDN. I emailed my GI asking if I can go up to 4.5 mg soon. No response from him yet, I presume he's taken some days off during the holidays and I hope for a response after New Year's.

Here's how well I'm doing - I have a cold (yet another one), and usually when I catch a cold, my guts feel worse for a bit. This time, my guts felt (mostly) fine. The mostly part is - I did have a slight bit of nausea, but I think that's because some mucus was finding its way down to my stomach. Aside from that, my guts are fine and my stools are still formed and I'm still going 1-4 times per day. Once I get over this cold, I'll be doing great!

 

[my little penguin]

That's awesome that things are looking up
Are you still on pred ?
I knew you were weaning slowly

 

[Cat-a-Tonic]

Yes, still on pred. I successfully tapered from 10 mg down to 9 mg this week. So far so good there! I plan to taper to 8 mg next week and so on, going down 1 mg per week until I'm off of it.

 

[Cat-a-Tonic]

Another update: My GI never emailed me back, but he apparently did sent through the prescription for 4.5 mg of LDN. The compounding pharmacy called me just now. I'm going to go pick that up on Saturday. I think I'll also start taking it on Saturday - if I have trouble sleeping, I've got a long weekend for New Year's to deal with that, and if for some reason it doesn't go well then I'll still have a week's worth of 2 mg that I could go back to if need be. I don't think I'll have any issue with 4.5 mg, but I like to play it safe just to be absolutely sure.

 

[Cat-a-Tonic]

So far so good on 4.5 mg. I did wake up at 4:30 AM but I was able to zonk back out to sleep pretty quickly. So it seems like I'm going to have the same side effect as I did when I was first adjusting to the 2 mg - mild sleep disturbances. But no vivid dreams. And I can totally deal with sleep disturbances (they shouldn't last longer than 1-2 weeks anyway). I did get myself one of those sun lamp things to help with my circadian rhythms and also to deal with the ickyness of winter, so maybe that'll help too.

 

[Cat-a-Tonic]

I did have some trouble sleeping last night and I think I had odd dreams but I don't remember what they were. It's day 3 of 4.5 mg LDN, so I had expected to have some sleep disturbances at this point. I'm planning to take an OTC sleep aid tonight and probably for the next few nights until my body had adjusted to the LDN dose increase.

Guts-wise, I'm feeling pretty well. I have to make sure I'm getting enough fiber, which is odd to say. Lately I have only been going to the bathroom maybe once per day which is a little low for me. Ideally, I feel healthiest when I'm going twice per day - once in the morning and once in the evening. That's what I was usually doing when I was in remission. So I'm making sure to get my psyllium daily (I did miss a few days) and also to try to eat oatmeal at least a few times a week. As long as I have my psyllium and my oatmeal, then I seem to go twice per day at predictable times (and with good stool consistency). Another reason for me to pay attention to my diet, as it really is important.

 

[scottsma]

I had a bad weekend gut wise.I blamed the anti-bi's I got,but I was only prescribed 2 per day for 3 days.I have psyllium in the cupboard ,but I think they constipate me and I hate that.That's the trouble with trying to do what's best for yourself,you're never quite sure what's working or not.I do have oatmeal regularly.

 

[Cat-a-Tonic]

I find that psyllium dosage is really important. Too much and I become extremely bloated and have a ton of trapped wind pain. And too much means, two spoonfuls instead of one, so it's really easy to overdo it on the psyllium! One teaspoon seems to be just about right for me (the packaging says to do 2 tablespoons daily - I think that'd kill me!).

 

[scottsma]

Mine are capsules but I think I took only one per day,not sure,I might try them again when I get this bladder problem sorted.Didn't take Ami.last night and slept badly.Awake at 6-30am.But I'll persevere until the weekend.

 

[Cat-a-Tonic]

I much prefer the loose psyllium to the capsules. The loose psyllium seems to work much better for me. I'm not sure why that is.

I slept poorly last night as well. I took an OTC sleep aid but I don't know if it did anything. As I was trying to fall asleep, it felt like my heart was racing - I don't know what that was about! When I did finally manage to fall asleep, I had at least one vivid dream. I dreamt that there were wasps everywhere, in my house and on me and on every surface. So I went to a swimming pool in my dream (I don't have a pool in real life!) and dove in to get away from the wasps, but that was no good because the pool was full of dead wasps. Then I woke up with a jolt at about 4 AM, thanks to hubby. He apparently had gotten up to use the bathroom and he made some noise which woke me, and after that I couldn't sleep any more. So, I'm quite tired today.

 

[gordan]

Hoping things are starting to come around for you, Cat! Not knowing exactly the problem is always discouraging, however, it sounds like you are very much taking control of things.

 

[Cat-a-Tonic]

I forgot to take an OTC sleep aid last night, yet I somehow slept much better than I had the night before. Go figure! I did have vivid dreams, but they were much nicer than the wasp dream (I dreamt that I was going back to Japan, and I love Japan, so it was a nice dream). And hubby didn't wake me this time either. I did once again wake up at 4:30 AM, but I was able to go right back to sleep again. I feel much more rested today than I did yesterday.

As for pred, I successfully tapered to 8 mg as of yesterday. So far so good, no issues, no pain at all. The last time I tried tapering this low, I ended up in TONS of pain and nauseous and just felt awful. I can only presume that LDN is helping me heal so that I can now taper without issues. I'm really happy about this, for awhile I was honestly wondering if I'd ever be able to get off of pred! Now I can see the light at the end of the tunnel. Next week I'll taper down to 7 mg and so on, the plan is to go down by 1 mg per week.

 

[scottsma]

A great start to the new year Cat !!!

 

[Cat-a-Tonic]

Little bit of a setback - I ate salad on Friday night with dinner and it didn't agree with me at all. I've had cramping since then, although fortunately the cramping is gradually getting better and less frequent.

Sleep-wise, I'm still not doing so well. Last night I had a very hard time sleeping. Part of it was because I lost my fitbit yesterday, and I usually use the silent alarm on my fitbit to gently wake me up. Without my fitbit, I had to set my alarm clock, and that's more of a jolt when it wakes me, which my body seems to find stressful. I'm getting a new fitbit, it's been ordered and should arrive tomorrow, so I only have to go without a silent alarm for one more night.

Other than the cramping and the not sleeping well, I'm doing pretty well. I was able to walk my dog twice yesterday (once was a regular walk, the second one was me realizing I had lost my fitbit and going out with the dog to retrace our steps and look for it). I have pretty good energy in spite of not sleeping well. I think LDN is continuing to do good things for me. I just have to get this cramping over with and get fully used to the 4.5 mg dose of LDN so that I can sleep well again, and then I'll be doing really well (until the next thing comes along, that seems to be how it goes!).

 

[Cat-a-Tonic]

Aaaaand the next thing has come along. I'm stressed and worried and scared. Long story short, I fear my grandma will die soon, it seems like her body is giving up. I'm doing as much self-care as I can to try to minimize the stress this is causing me - fitness always helps me feel mentally & emotionally better, so I made myself go ice skating today. I had planned to go skating, then found out that my grandma had another "incident", and then I really didn't want to go skating, but forced myself to go anyway. And I'm glad I did, I do feel a fair bit better now. I'm going to exercise as much as I reasonably can. Stress/grief was what sent me into my last flare-up, my grandpa died last May and we had to put my grandma into a memory care facility in June (she's got dementia), I started flaring in July and was hospitalized for the flare in August. Been clawing my way back out of that flare ever since. So I really, really do not need any more grief/stress like that right now, but I fear it's coming soon. Hopefully exercise and LDN will keep me reasonably well when the inevitable happens with my grandma.

 

[Cat-a-Tonic]

I slept a bit better last night. I think my body is adjusting to the 4.5 mg dose of LDN (it's been just over a week that I've been on that dose). I seem to recall it took about 2 weeks for me to adjust to 2 mg of LDN, so I expect it to take a little bit longer for me to fully adjust to the 4.5 mg dose.

I also tapered my pred this morning, went from 8 mg down to 7 mg. So far so good there! This is the lowest I've successfully gotten on pred so far, so I'm feeling quite encouraged. I think LDN is helping my guts heal enough that I'm able to taper down on pred without having symptoms.

 

[Cat-a-Tonic]

Still doing well on LDN. Not sleeping great - woke up a few times last night. It's less than 2 weeks since I started on the 4.5 mg dose, though, so I know I need to still give it more time for my body to adjust.

Guts are fine. So fine that my period started today and I didn't notice! Usually I'll have some cramping or whatever beforehand, but this time, nope. It snuck up on me and it never does that. Maybe it's because I have an IUD now, but usually my guts are bad around when my period starts, and my guts are just fine, so I think it's LDN making me cramp-free. I'm still having solid BMs 2-4 times per day and I don't feel crampy at all.

 

[scottsma]

About periods.I suffered all my adult life with pain and heavy loss, and mood swings,I thought it was normal and just got on with it. I know better now.I had a hysterectomy aged 41 for ovarian cyst,best thing that ever happened to me apart from marriage and the birth of our son.

 

[Cat-a-Tonic]

I'm honestly not even sure if I had my period there or not. It was 2 days of very light bleeding, almost nothing, and now it seems to be done. The nurse did tell me that with my new IUD, I might have sporadic bleeding/sporadic periods for a few months, and then eventually I probably won't have a period at all anymore because the IUD is hormonal. So I guess she was right, because I'm not even sure that that was a period.

I didn't sleep well last night, but that's my cat's fault. She knows she's not allowed on the kitchen counters, but she's also smart and slightly evil, so she waits until I go to bed, then she climbs up on the kitchen counters. But last night, she was loudly knocking things off the counters (fortunately only plastic containers, nothing breakable). I got up several times to go yell at her and shoo her off the counters. The third time I had to get up, I was done with that nonsense. I took my cat and put her in "her room" (it's my sewing room, but it's also the room where her food & water dishes and litter box are) and shut the door. That's probably the meanest thing you can do to a cat, ha ha, put them in a room and shut the door! They hate that! But I was sick of getting up every time I heard something clatter to the floor.

 

[Cat-a-Tonic]

I'm still doing well on LDN. I woke up at 5:40 AM this morning but only because my cat was meowing to be fed. Aside from that, I've been sleeping pretty well. I've also been exercising regularly again and my body seems okay with it. I did forget to take my psyllium for a few days, so as a result I got a little backed up and had a few cramps associated with that, but my guts are really good as long as I remember to take my psyllium. My pred taper is going great - I'm down to 6 mg with no issues! I'm so happy that I will be off of pred in the near future. My weight is up a bit and I'd like to lose a few lbs, and I'm sure that will be easier once I'm off of pred.

(My cat is back on pred herself, 5 mg daily for her, which is why she meows so early for food. It's the pred making her hungry! I can relate.)

 

[Cat-a-Tonic]

Still going well. I'm sleeping better although I did have one vivid dream last night. For some reason I dream about bees/wasps while on LDN! When I was first on 2 mg LDN, I dreamt that wasps were everywhere, zillions of them, not flying but they were on everything and on me as well, so I jumped into a swimming pool to get away from them, but the pool was full of dead wasps. Then I woke up. Well, last night, I dreamt that I was looking for 4-leaf clovers (that's something I often do in real life when I'm walking my dog, as the dog park is full of clovers). In my dream, I found several 4-leafers and then I found a clover that looked like it was encasing a cocoon, so I picked it up trying to figure out what type of moth was inside. But then it started buzzing in my hand so I knew a bee was inside! It went, buzz buzz buzzzzzz. Buzz buzz buzzzzz. Then in my dream I realized it was my fitbit! Ha ha. It has a silent alarm that buzzes to wake me up and the pattern is 2 short and one long buzz. So then I woke up.

Aside from that dream, all is going fine with LDN. And as of today I've tapered down to 5 mg pred! No issues so far, knock on wood. Previously (before LDN), I had tons of trouble getting below 10 mg pred, so this is very encouraging to be at 5 mg and doing fine. I'm so happy that the end of this pred course is in sight! And I am pretty sure LDN is to thank for that.

 

[scottsma]

That's really good news about the LDN AND the pred. I hope you have a really long remission.

 

[Cat-a-Tonic]

I'm having sort of a bad morning today, but I have figured out the cause. I'm supposed to take my pred with food or milk in the mornings. I am not a breakfast person and I'm lactose intolerant, so I usually have one of those supplement drinks with my pred as they're small and have vitamins. I've been doing ProNourish drinks with no issue, but I ran out and amazon seems to be out of stock, so I switched to Boost Complete as of this morning. I've done those Boost drinks before with no problem, but I think my stomach didn't like me making the switch as it got used to the drink I was doing previously (ProNourish is low-FODMAP so no fructose and I think it's fairly low in sugar; I'm pretty sure that Boost has both fructose and sugar, so maybe that's what upset me). I've had about 4 bathroom trips already this morning and had to take a zofran for the nausea.

The good news is that I think it's just the Boost upsetting me and I think I'll be feeling fine once that gets out of my system (and I'm going to just drink a small cup of almond milk in the mornings with my pred now instead as I know that's safe for me). And I'm not feeling too bad, the nausea stayed fairly mild and the bathroom trips weren't urgent nor watery (not even all that loose, really!).

I did google to make sure that zofran is safe to take with LDN, and it sounds like it is. However, in my googling, I read that alcohol should be avoided on LDN - it said some patients are fine with having a drink but others experience projectile vomiting. Ugh, oh no! I almost never drink so that's not normally a problem, but I'm supposed to go to a wine tasting on Saturday. Guess I will just watch the rest of my family taste wine and I'll be the designated driver because I hate vomiting more than anything and I'd rather be safe than sorry.

Edited to add: This isn't a taper fail. I just tapered to 5 mg pred yesterday so the thought crossed my mind, but this doesn't feel like the other times when I've had a taper fail - there was always a fair amount of lower abdominal pain associated with my taper fails, and I don't really have any pain right now, just a few bathroom trips and mild nausea. So I highly doubt this is a taper fail, I'm quite confident that this is the Boost drink upsetting me.

 

[Cat-a-Tonic]

Hmph. As the day has gone on, I still feel crappy and haven't really improved much. I ended up coming home sick from work. It's put me in a very bad mood, I'm frustrated by this little setback. Hopefully it's just one bad belly day and that's it. I'm now questioning whether it's the Boost or not. Still doesn't feel like a taper fail, I'm not having the sharp lower abdo pains that I get in a taper fail. A co-worker mentioned that she wasn't feeling well today either, so maybe it's a bug? I don't know, it doesn't really feel like a bug either, I'm unsure as to what exactly has caused this.

Overnight tonight we're supposed to get anywhere from 3-7 inches of snow. If it's closer to the 7 inch mark, well, my city isn't always good about plowing my street in a timely manner, and I have a tiny car, so I can't get out of my driveway if it's a fair amount of snow and the plow hasn't come through yet. So if I'm still feeling unwell tomorrow, I might get a rest day out of it anyway just due to the snow. But I'm hoping for both good weather and good guts tomorrow. I have to try to stay positive. This is hopefully just a fluke, a blip on the radar, and things will hopefully be much better tomorrow.

 

[scottsma]

Winter is not a good time of year (who knew hahaha) You'd do well just to get through one day at a time,keep warm and keep safe.

 

[Cat-a-Tonic]

I'm feeling a bit better today - I slept like a rock, just completely zonked out, although I still feel tired today. That makes me wonder if this is my adrenal glands yelling at me a bit because of the pred taper. I know the adrenal glands can cause IBD-like symptoms, so maybe that's the source of the belly upset and the tiredness - it's not a true taper fail but it is related to the taper. I'm down to 5 mg pred now so my body has to start producing at least some of its own cortisol, and since I've been on pred since August, the adrenal glands haven't had to do anything for months and are a bit grumbly about having to start working again. That's my current theory.

I'm feeling a little bit better belly-wise today, but with the snow and with still not feeling great and feeling tired, I've decided to call in sick again today and rest some more. Hopefully by tomorrow I'll be well enough to go back to work. I'm just going to take things easy and not push myself to exercise for a little while. My body needs a bit of TLC right now so I'm listening to my body and resting.

 

[Cat-a-Tonic]

I woke up this morning feeling worse, ugh. It's got to be a taper fail at this point. So I went back up to 6 mg pred today. Going to stay on 6 mg until at least Monday, I have a GI appointment on Monday and will ask his advice then. I'm discouraged, I was doing so well up until this week. I think LDN is still helping, but just wasn't enough (or wasn't kicked in fully enough?) to prevent a taper fail. I just want to be off of pred already!

 

[scottsma]

Maybe the cold virus that's been hanging around is to blame ?Try to have a restful weekend.Glad you have an appointment soon.

 

[Cat-a-Tonic]

I don't think it's a virus. I had a bad cold which I caught at xmas (3 of my 5 nieces & nephews were coughing a ton so I'm sure I caught it from one of them). I didn't have a cough but I did have a ton of sinus congestion. That cold lasted about 2 weeks. It's since been going around at work, but I'm pretty sure it's the same cold that I had and therefore I'm immune to it.

I am doing a bit better today. Had a rough morning but forced myself to go to work anyway because I don't want to use up all my paid time off like I did last year (last year, between my trip to Japan and my bad flare, I had used up all my paid time off by August and had to take an unpaid day whenever I needed a sick day for the remainder of the year). I'm doing better this afternoon, mornings are rough for me when I'm having symptoms. I think you've mentioned that you're similar. I had some cramping and watery stools and just sort of feeling weak and slightly dizzy this morning. No appetite either. This afternoon, I started feeling better - no cramps, no more bathroom trips so far, and I developed a bit of an appetite. So I had a small bit of food and so far that's sitting well and not upsetting me.

So yeah, I think I'm improving - probably going back up to 6 mg pred has helped, too. I'm fairly confident this was just a pred taper fail and I just need to taper more slowly & carefully. Will see what my GI has to say about that on Monday. In the meantime, I'm just going to rest all weekend and hopefully recover from this taper fail.

 

[Cat-a-Tonic]

I'm definitely improving day by day since going back up to 6 mg pred, so it was definitely just a taper fail. LDN does still seem to be helping. My GI and I discussed a plan as far as tapering, so I'm hopeful that I can get off of the pred reasonably soon, and we're both hopeful that LDN and Lialda will do well at keeping me in remission once I'm off of the pred. Today, my appetite is back, and I took walks the past couple of days with zero issue, and my stools have gone back to being firm and I'm only using the bathroom a couple times a day. I feel quite good today. I'm a bit stressed because of some nonsense at work, but there's nothing I can do about it so I'm trying to not worry about it (sometimes that's easier said than done, but all I can do is try).

 

[Cat-a-Tonic]

I saw my GI on Monday and we discussed a plan of attack for my pred taper. I'm going to try alternating (so I'd do 6 mg one day, 5 mg the next, 6 mg the day after, then 5, and so on - then after a week of that, go down to 5 and stay there, then the next week alternate between 5 and 4, and so on). I was told by a friend that that has been working much better for her than just going from 6 to 5 to 4 etc. My GI said he had never heard of tapering that way, but that it's worth a try since the end goal is just to get me off the stuff.

My GI and I seemed to be on the same page completely, it's nice when that happens. We both want me off of pred, and we agreed that we'd like me to be in remission with LDN and Lialda as my maintenance meds. I'm supposed to call him in roughly 6 weeks to let him know how the taper is going (and of course will call him sooner if I'm still having issues with the taper), and I see him again in 3 months. I'm hoping by then that I'll be off of pred!

LDN still seems to be working fine. I'm feeling okay aside from I think I might be coming down with a cold - I've got some very mild symptoms, just feeling a bit congested and have needed a couple throat lozenges today, and am a bit tired. I'm sleeping well though, no longer waking up at odd hours and haven't had any dreams that I can recall. My guts have been fine since recovering from the taper fail, for the past few days I've only had one BM per day (I'm increasing my soluble fiber a bit as I feel like 2x BMs per day is ideal for me, I feel slightly backed up with only one BM per day). So yeah, aside from the taper fail of last week and the mild cold symptoms, I'm doing well!

 

[Cat-a-Tonic]

I'm testing out the alternating doses pred taper and so far it's going well, no symptoms (knock on wood). I had been at 6 mg. On Saturday I took 5 mg, yesterday I took 6, today I took 5 mg. I'm going to alternate doses for a few more days, and the plan is on Friday to take 5 mg and then stay at that dose, not go back up to 6. After a week or so on 5 mg, then I'll start alternating between 4 and 5 mg. I'm really hoping this is what helps get me off of the stuff already! I just want to be done with pred.

LDN is still going fine. I've been sleeping well. Maybe too well! We have a rain barrel outside of our house, it's just outside of the bedroom window. Apparently hubby neglected to drain it before winter, so it was still full of water and then of course it froze. It fell over with a loud bang a couple of nights ago in the middle of the night. I very vaguely remember hearing a sound and I think I half woke up because of the sound and because of hubby commenting on the sound and going out to investigate it. But it felt like a dream and I wasn't even sure it was real until I asked hubby about it. So that's how well I'm sleeping, there's a loud sound literally 2 feet away from my head and I don't even know if it's real nor do I bother to wake up in response it!

 

[Cat-a-Tonic]

Ugh, nevermind what I said earlier about pred. I'm definitely in a taper fail, again. Got hit with nausea and cramping a little while ago. So frustrating! I'm going back up to 6 mg for now and emailed my GI asking what to do. Before LDN I couldn't get below 10 mg pred. On LDN I can't get below 6 mg pred. It's an improvement but I'm still stuck.

 

[raechel]

Cat- Are you still on LDN? I just finished reading all of your posts on it and am dying to know how you are doing. I'm seeing my gastro tomorrow to discuss this as a possible treatment and havent seen many posts with long term results.
Hope you are well!

 

[Cat-a-Tonic]

I am still on LDN. We decided to try 2.5 mg to see if that'd help me any more than 4.5 mg was. It seems to be about the same. I still have symptoms from time to time, particularly during times of high stress. And unfortunately, now is one of those times. My dog is dying of cancer (she's not in pain, but she doesn't have much time left) and just yesterday I was informed that I'm being laid off at work. Sooo, my guts have been less than happy lately! Hopefully things will even out a bit once I find a new job.

Good luck discussing LDN with your doctor! For me, my GI hadn't even heard of it, so I printed out some information to show him. He then did some research on his own, and concluded that it sounds safe and promising, so he allowed me to try it. At that same time, my primary care doc informed me that he's also starting to treat his IBS patients with LDN - so if your GI isn't open to the idea, your PCP might be. Another thing you should know is, that some/most insurance doesn't like to cover LDN, so you'll probably end up paying out of pocket in full for it. It costs me something like $38 per month though so it's not too terribly pricey. And you'll have to find a compounding pharmacy that can make it, so do some googling for your area and see if there's a reputable compounding pharmacy near you. I lucked out, there's a compounding pharmacy in my city and they are very excited and knowledgeable about LDN, they do a good job.

I see that last time I posted in this thread, I was still having issues with taper fails. Fortunately, my compounding pharmacy helped me with that, too! I had mentioned to the lady there that I'm having trouble getting off of pred, and she said that some people need to taper super slowly - she recommended I try tapering by 0.5 mg once per month. I asked my GI about that and he agreed to let me try that plan. And, that's been going well so far. I haven't had another taper fail since. I'm down to 4.5 mg and plan to taper to 4 mg probably tomorrow (I had originally planned to do it today, but totally forgot to - my brain is sort of a mess since I got laid off yesterday). It's frustratingly slow tapering like this, but I am going in the right direction at least.

 

[raechel]

I am still on LDN. We decided to try 2.5 mg to see if that'd help me any more than 4.5 mg was. It seems to be about the same. I still have symptoms from time to time, particularly during times of high stress. And unfortunately, now is one of those times. My dog is dying of cancer (she's not in pain, but she doesn't have much time left) and just yesterday I was informed that I'm being laid off at work. Sooo, my guts have been less than happy lately! Hopefully things will even out a bit once I find a new job.

Good luck discussing LDN with your doctor! For me, my GI hadn't even heard of it, so I printed out some information to show him. He then did some research on his own, and concluded that it sounds safe and promising, so he allowed me to try it. At that same time, my primary care doc informed me that he's also starting to treat his IBS patients with LDN - so if your GI isn't open to the idea, your PCP might be. Another thing you should know is, that some/most insurance doesn't like to cover LDN, so you'll probably end up paying out of pocket in full for it. It costs me something like $38 per month though so it's not too terribly pricey. And you'll have to find a compounding pharmacy that can make it, so do some googling for your area and see if there's a reputable compounding pharmacy near you. I lucked out, there's a compounding pharmacy in my city and they are very excited and knowledgeable about LDN, they do a good job.

I see that last time I posted in this thread, I was still having issues with taper fails. Fortunately, my compounding pharmacy helped me with that, too! I had mentioned to the lady there that I'm having trouble getting off of pred, and she said that some people need to taper super slowly - she recommended I try tapering by 0.5 mg once per month. I asked my GI about that and he agreed to let me try that plan. And, that's been going well so far. I haven't had another taper fail since. I'm down to 4.5 mg and plan to taper to 4 mg probably tomorrow (I had originally planned to do it today, but totally forgot to - my brain is sort of a mess since I got laid off yesterday). It's frustratingly slow tapering like this, but I am going in the right direction at least.

Thanks for the update! I'm sorry to hear about your dog and your job. I know stress wreaks havoc on my guts too... it's a vicious cycle.
My GI is very open to LDN, it was actually her idea. After talking to her today we are going to continue to try to get insurance to approve IVIG first. I had one infusion of it a couple of months ago and it was insanely successful, so I think for now the plan is to appeal insurance again to try for that and then the back up plan is LDN.
Thanks again for sharing your journey! It's been very helpful to read.

 

[Vixx]

What a journey! Are you still on it ? Would love to convince my consultant that I should try this before methotrexate