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3rd Remicade Infusion and Frustration

I had my third Remicade infusion on Friday last week, 3/26. It actually wasn’t the coolest experience since I had a reaction within an hour of it starting. The Benadryl made me feel awful the first time I took it, so I had half the amount for my second infusion, and a ¼ the amount for my third infusion. However, my throat starting swelling after about an hour, so I had to be given the full 50mgs of Benadryl. I also got about 60mgs of a steroid to reduce the swelling. That worked and we were able to continue finish the Remicade. I also didn’t feel that bad on the Benadryl this time!  I think the first time I had it I was just super nervous and the Benadryl just heightened my feelings.

I also noticed that day that I had sore knees. I wanted to wait through the weekend to see if it was from lying on the hospital bed. But now it’s Wednesday and my knees and legs are achy. I notice it mostly when I relax, bus sheesh! I’m going to call my doctor today, but I’m so frustrated! I hope it’s not some sort of induced Lupus! I don’t have a fever or a rash that seems to come with Lupus, but if this is arthritis, that blows! I don’t understand exactly how it works, but I think people are treated for arthritis with Remicade… so it doesn’t make too much sense that my joints would be achy while I take a medicine that people use to elevate pain like that!

I’m just so sick of taking so much medicine. I want so badly to get off all my meds and talk with an alternative doctor. I’m not on the SCD, but something very similar. I’m doing the Anti-Fungal diet which, from what I can tell, is super similar. I can eat tons of veggies, berries, green apples, and meat. But I can’t eat any other carbs (like breads, pastas, rice, potatoes, etc.), sugar (including syrup, honey, refined sugar), or anything fermented (like vinegar, except apple cider vinegar). But I’d love to do whatever it takes to feel better without medicine…. It’s just medicine has worked so well. I’m just increasingly more frustrated. In the short term though, alternative medicine is more expensive than conventional medicine. It’s only partly covered by my insurance, whereas my Remicade is almost 100% covered. Outrageous right? Remicade is $16,000 (I’m not even exaggerating), but since my insurance will cover it, it’s cheaper than talking to someone who will get me on a plan that is way less expensive but not covered. AAgg!

I’d love to be my own doctor and just take myself off of the Remicade, Lialda, and my Hydrocortisone enemas and create my own plan. But I feel like I’m too far down the rabbit hole now to just cut ties and run. I need professional advice….but again, also expensive. I know what I think I need to do, but I want to be supervised and informed by an alternative doctor and an integrative doctor. I think that would be dynamic duo. That way, I could wean off my meds and get on a homeopathic treatment. Has anyone seen a homeopathic doctor for their UC?

From my research so far it seems like what’s most common from these alternative doctors is that you reduce toxins and up the healthy nutrients so that your body can heal itself. I think I can do this by staying on the anti-fungal diet, possibly juicing, and cutting down on toxins in my food (like buying organic). But I think my next step is going to really investigate how much alternative doctors will cost and if any specialize in digestive diseases… who knows, maybe they’re out there in Southern Cali?!




Alternative Medicine, arthritis, benadryl, covered, expensive, homeopathic, hospital, infusion, lupus, Remicade, UC

5 Responses to 3rd Remicade Infusion and Frustration

  1. Paul Willoughby March 31, 2010 at 7:28 pm #

    Sheli,
    please consider trying ionic silver water. It helped me and may also help you. It’s worth a try and you can order a bottle for about $20.00 plus s&h – very cheap compared to remicade.

    all the best,
    Paul

    • Sheli April 5, 2010 at 9:24 am #

      Hi Paul,

      Thanks for your advice! I’ve never heard of ionic silver water, what does it do for you? I’ll give it a look!

      -Sheli

      • Paul Willoughby April 5, 2010 at 5:21 pm #

        Hi Sheli,
        four months ago, I was discussing surgery. An acquantence of mine had claimed to me back in ’98 that he cured his mom’s Chrohn’s by having her drink ionic silver water and eat yogurt. I was skeptical but was willing to give it a try since I was at the surgery stage. 6 weeks after starting 1 tsp/day, the colonoscopy looked better and the Dr. said I no longer should be thinking of surgery – I think your colitis might be dying out. I have not yet told him about the ionic silver but I will. Anyway, silver is a natural anti-biotic so my theory as to why it works is very similar to the SCD diet – it is controlling overgrowth of gut bacteria. I am hoping to get off of remicade this year – that’s my goal. A $20 (16 oz bottle) supply of ionic silver water lasts me almost two months. The last time I bought, I order the 32 oz bottle for $30 and I expect it to last three months so it is way cheap compared to my copay for remicade.

        Paul

  2. Kat April 1, 2010 at 8:31 am #

    Hi Sheli,
    I have worked with a naturopath throughout the time I have been on SCD. I highly suggest finding a good naturpath instead of a homeopath. I find a naturopath is more broad and willing to try different alternative treatments, whereas a homeopath might be looking only in their field. Regardless, it is very helpful to see an alternative doctor. I’m sure you will find many who know about digestive diseases. My first naturopath got into her natural health career after frustration with the medical system regarding her own digestive problems.

    I’m lucky enough to have insurance to cover most of the costs of alternative care. But, if I had to go back and do it all again without insurance, I would still go to a naturopath. Try to find one who will work with you at budgeting out your payments. Some have payment plans. Also, find one with the option of a phone consultation, or 15 minute appointments. I found this cut down on cost a lot. It’s amazing once you have a relationship with your naturopath how effective a 15 minute appointment can be.

    I wasn’t on medication but really can’t imagine how hard and stressful it would be to wean off it without the support of a professional.

    If you are really stuck, there are no-interest loan options available to people with illness. Let me know if that would help and I’ll try contacting a few sources I know.

    • Sheli April 5, 2010 at 9:23 am #

      Hi Kat,

      Thank you so much for sharing your insight! I just made an apt. with a homeopath doctor, but it’s just one visit. I’ll look into a naturopath next, thanks! Our insurance only covers part of “out of network” doctors. I think I’d like to try doing this without a loan, but if I get impatient or realize we need a loan, I’ll let you know!

      Glad to hear that you’ve not had to go on the strong meds!
      -Sheli

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