low dose naltrexone for CREST with Raynaud's and IBD?

[NewbieAP]

Hello. Does anyone else have IBD and CREST? Technically, my GI doctor said it looks like I have "mild Crohn's activity", although there's a slight chance the small intestine inflammation could be due to SIBO. Not sure what the mild gastritis is due to, if not IBD (I don't do/use any of the gastritis causes, and I'm h pylori negative). I also tested positive for ANA (1:160) and anticentromere antibodies (low level, but still), that the Rheumatologist said are present with CREST (limited cutaneous SSC, I think), but since Raynaud's is my only symptom (unless my GI stuff is related), she's not saying I actually have it, but that I have the antibody, which may or may not ever progress to it. I also tested positive for Antithyroglobulin antibody, but not Thyroid peroxidase antibody. The Rheumatologist said that means I have Hashimoto's, but the Endocrinologist said it doesn't mean that since I didn't test positive for antiTPo, and my thyroid levels were within normal range. All in all, I've been told that I could have/ could end up with Crohn's, Hashimoto's, and CREST and for all three, I've been told to watch and wait. I'm not good at that, and started the IBD-AID in June and that has helped my GI stuff a lot. I still have cold toes all the time.

Has anyone taken low dose naltrexone for any of this stuff? There's one GI doc in my city that prescribes it, but of course he's not taking new patients. My GI says there's not enough evidence/ research yet for her to feel comfortable prescribing it, which I get, but it sounds like it could help all of these issues and is supposedly super safe, so that's a bummer. I'd love your thoughts/experiences. I also want to say I know I'm lucky health-wise and I'm sorry for those of you who have serious conditions/ more progressed conditions.

Thank you,

-Alice

[Joan59]

Hi sorry your going through a difficult time at the moment and docs saying either they don’t know or the do. It could be this it could be that. You can get gastric issues with crest. I have crest amongst other autoimmune diseases but I’ve had Creat the longest nearly 20yrs now so I know you can get gastric issues which can be controlled with medication although you can still at times get gastritis too so when this happens to me my Rhumatogist says to increase my stomach meds.

Hope you get sorted soon.

All the best

Joan

[NewbieAP in reply to Joan59]

Thank you Joan.

[Jak62]

Hi there,

I was diagnosed with CREST Scleroderma 30 years ago. For me it presents as mild Raynauds, difficulty swallowing, IBS, gastric reflux and random muscle pains. I am so lucky compared to many!

My reflux and muscle pains flare up during times of stress. Two years ago they accelerated markedly after the loss of my partner and I thought I had started a downward spiral. A friend introduced me to low dose naltrexone and I have been taking it for about 10 months. My reflux and muscle pains quickly subsided markedly, back to pre - stress levels. I plan to take ldn indefinitely, hoping it will prevent the progression of the condition.

Gather the anecdotal evidence and try another gp!

[MissusTee]

I'm quite poorly with the SIBO, in my scleroderma. I've had malnutrition, and now frequent episodes of vomiting. I also have sjogrens, pbc and hypothyroidism. I don't think naltrexone prescribing happens very often. I have had scleroderma for over 30 years now. I take a huge amount of meds , inc hydroxychloroquine and also Butec pain patches due to osteoarthritis and joint pain from the scleroderma. I'm also on antibiotics for life because of the SIBO.

[Weakfleshvessel]

I think we must have similar genetics! Same thyroid antibodies, same centromere antibodies. So weird.

I started taking LDN years ago for joint pain, and it helped a lot. I still take it, and intend to keep taking it. I have wondered if it has kept some immune system issues at bay and is the reason my issues have never been fully diagnosed, but I dread the idea of not taking it and finding out how bad I would be without it.

I had my Dr send a script of a 1mg:1mL LDN solution to a compounding pharmacy so I could slowly increase the dose (to limit side effects), but ended up at the standard 4.5 mg dose anyway. I take it in a tiny pill form now, and order it from a specialty pharmacy at 1/3 of the cost I was paying my local pharmacy.

The thyroid stuff is interesting. My internal medicine Dr dx me with Hashimoto’s but did not put me on meds until they did a thyroid ultrasound that showed nodules (too small to cause concern, but he said were a sign that my thyroid would likely malfunction at some point) AND my labs went wonky. He initially told me that my thyroid would likely work for a long time, then start to intermittently malfunction, and possibly not work at some point, but all we could do was monitor labs (TSH, T3, free t3, t4, free t4) and treat as indicated. He has me on low doses of meds and my labs are within normal limits (definitely not optimal), and I still have every symptom of hypothyroidism. He refuses to increase any meds because my TSH on meds is very low. Over the years I’ve tried natural desiccated thyroid (t3 and t4 combined), brand name and generic levothyroxine, liothyronine (tiny dose though so I’m not sure it does much). Still symptomatic. Frustrating.

Now I am slogging through the process of trying to figure out if other symptoms are systemic sclerosis related or something else, if previous diagnoses are accurate, and it is all just a big convoluted mess. So many gremlins up in here. I’ve had a lot of testing done, but not a lot of definitive answers yet. I’m on my third rheumatologist and feel like she might be helpful, as she sent me for heart and lung testing. I’m changing internal medicine doctors, so maybe I’ll find some help there in putting all the pieces together, but it has been an uphill battle getting any kind of insight into what is going on in this weak flesh vessel of mine.

Whatever you decide, I hope you get some relief soon 🍀