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So Frustrated I Could Scream!

mushroom

By mushroom
in Coping with Celiac Disease

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mushroom Proficient
mushroom
Posted

Okay, here's the deal. I have psoriatic arthritis which I am sure came from my lifelong gluten consumption and failure of docs to diagnose me. I have been through all the treatments: cannot take steroids (i.e. prednisone), took methotrexate (darned near killed me), sulfsalazine and diclofenac (went into kidney failure from NSAID), Plaquenil (drove my psoriasis crazy for three years but worked on the arthritis, then I started swelling up with retained fluid and it stopped working altogether); stopped all meds and went gluten free (self-diagnosed after a lifetime of digestive issues) a year ago, and was okay for a few months then arthritis came roaring back; resumed sulfasalazine without NSAIDS, have been okay for about a year but arthritis is real problem once again.

My rheumatologist prescribed Humira, a TNF inhibitor (not covered by New Zealand's drug service for psoriatic arthritis); consulted a rheumatologist in Nevada in July and with a lot of finagling between him and my insurance drug company was able to bring back a year's supply of Humira to New Zealand; customs blew their top when we came back through, said I should have gotten a permit from the Health Service, but when they found that the Humira was perishable and valued at NZ$25,000 they eventually let me through because they didn't want the liability.

When I got it here I discovered that the Humira contains Mannitol. Now I had a very bad reaction to a sublingual B12, and had wondered if it was caused by the Mannitol, so went on a Mannitol search to try it, with no success. Finally my rheumy sent a prescription to the hospital pharmacy and I came home with an IV sac of mannitol (it is used to reduce brain swelling). Anticlimax: I tried it and nothing happened. Hurray!! The reason I wanted to be sure I was not allergic to it was because of the following:

The real problem: When I was in high school there was a serious epidemic of TB and it was a requirement to be vaccinated with the BCG vaccination in order to return to school. That means I always test positive on a Mantoux test. In the past I have always gotten around this with a chest x-ray, but since you can get TB in other then your lungs I was given a Quantiferon gold blood test, which came back "indeterminate". This means that I have to be treated as if I have TB and take a 6-month course of antibiotics, because if you have latent TB Humira can kill you. Needless to say, with the precarious state of my gut already I didn't want to take a 6-month course of an antibiotic unnecessarily.

Anyway, I started on Isoniazid, a prescription I had filled 6 months ago, two days ago and I thought I knew all about it. But because I have had it so long I forgot that I had not confirmed gluten-free status with the pharmacist. Of course, I got glutened. Told my rheumatologist I needed to take something else because Pharmac, the govt. drug-buying agency, contracts with only one manufacturer, and there is no gluten-free Isoniazid in New Zealand. Got a call back that she was prescribing pyrazinamide and rifampicin. Trouble is, I cannot take rifampicin because it blocks the action of all beta blockers including the Metoprolol I take--makes my heart stop and start and stop and start

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Jestgar Rising Star
Jestgar
Posted

Gads, how heinous. I feel for you.

Some people find that their psoriasis is reactive to certain foods. Mine flares up with corn. Since you're just hanging around waiting anyway, you might want to try eliminating a few things. When I first stopped corn it took about a week before I was sure my body was hurting less. Now the pain returns 2-3 days after eating too much corn.

nikki-uk Enthusiast
nikki-uk
Posted

Hi Mushroom,

I'm sorry you've been having such a rough time :( and although I'm not sure I can offer any actual help , I can sympathise.

My hubby , like you has Psoriatic Arthritis (probably due to un dx celiac disease?), like you canNOT take steroids (make him psychotic!), nor Methotrexate, Sulphasalazine OR NSAIDS

OH the joys of having a ruined gut eh?

Hubby was taking Humira (worked marvellously!) but had to stop as it made his platelets plummet <_< .... and now is taking Enbrel.

I do understand how frustrating it is when you are taking many different drugs (some which interact with each other) AND seeing many different consultants for different conditions.

:rolleyes:

Just trying to get the docs to communicate with each other can be a nightmare!!!

Have you looked into having a morphine patch if you're PA is v.active at the moment???.........it might give you some relief until the docs organise what to do with their 'complicated' patient ;)

Hope you get some relief soon

:)

Incidently, my hubby's skin condition of Psoriasis disappeared when he went gluten-free :blink:

mushroom Proficient
mushroom
Posted
  • Author

Thanks for your responses.

Some people find that their psoriasis is reactive to certain foods. Mine flares up with corn. Since you're just hanging around waiting anyway, you might want to try eliminating a few things.
jerseyangel Proficient
jerseyangel
Posted

Hi mushroom--I just want to say that I hope that they can hit on something that will give you relief. What a terrible time you've had--I'm so sorry :(

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    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

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      Son's legs shaking

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    • lizzie42
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