SCI Rheumatoid Arthritis

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My name is Sarah and I am a 31 year old stay at home mother to 2 boys (L is 5, and R is 3) in Baltimore, MD.

In 2010 we adopted a dog who has terrible leash manners and pulled when we walked her. I attributed sore shoulders and wrists and knees to her for a few weeks before realizing something else was going on. I had also received two corticosteroid injections in my foot for Morton’s Neuroma around this time, but never thought it might be connected.

I was referred to a rheumatologist, sent out for bloodwork, and returned for results. She told me I had rheumatoid arthritis and gave me a prescription. I suspected I was pregnant so I never filled the prescription, and a week later a doctor confirmed the pregnancy. The pain wasn’t bad, but I did a little research, and saw where many women have bad flares a few weeks after giving birth. I wanted to be prepared, so I made an appointment with another rheumatologist, who seemed to take great offense to me being pregnant and thinking I had RA. He told me pregnant women CANNOT have RA and if I did have it, I would need chemotherapy, DID I UNDERSTAND?? I didn’t, but I didn’t want to cry in front of him, so I left. My husband and I agreed, maybe it was a good thing, that he was saying I didn’t have it…but there was a nagging feeling in the back of my head.

A few weeks after the birth of my youngest son, I did have pain and saw a doctor who prescribed prednisonse. I felt pretty good, so I left it at that. I thought, if I can manage this with a single little pill, life is good. (Of course, I was also taking a lot of ibuprofen.) I think I only saw this doctor to get refills, because to this day I don’t remember if it was a man or a woman or what. After a year and a half, my in-laws, noted that I must still be on prednisone because my face was fat. One of them suffers from fibromyalgia and had experience with prednisone. I was pretty shocked to realize that a lot of what I attributed to age and having kids, was probably being caused by the prednisone (weight gain, purple stripes on my legs).

So I went to yet another rheumatologist, who put me on methotrexate and hydroxychloroquine with prednisone as needed. I also started having a mild stomach pain, but saw a general practitioner who attributed it to the prednisone use and put me on omeprazole as needed. Things seemed mostly fine, and I continued on taking ibuprofen often.

I had an abnormal pap last year, followed by a colposcopy, and then a cold knife conization to remove a part of my cervix. I had cervical carcinoma in situ. Before the procedure I had to come off the methotrexate, and I confided to my rheumatologist that I was hesitant to get back on a medication that dulled my immune response, when I clearly had a problem with HPV. I asked about the antibiotic protocol and she said that made her uncomfortable. She prescribed prednisone again and recommended Remicade.

My husband and I agreed to find a doctor who would at least talk about the antibiotic protocol and I found an integrative family practice. Our insurance doesn’t pay for it, so I don’t know how long I can keep it up. I certainly cannot afford to continue the LDN. I tried it for two months, without any noticeable results, aside from the gnawing guilt when I had to pay for it. I did begin the Mino, for about a month, while trying to taper off the prednisone.

I planned an elimination diet, and was prepared to start one Monday a few weeks ago, but the weekend before I started experiencing stomach pain, vomiting, and fever. I went to the emergency room, and they believe I had a gastrointestinal perforation due to diverticulitis. They kept me off medications while I was there, aside from the antibiotics they were giving me to calm the infection. Next week I go for a colonoscopy to be sure I don’t need surgery. I did not start back on the prednisone, even though the pain got very bad after the new course of antibiotics.

Now I am trying to get back on Mino. My doctor doesn’t want to go in too strong, since I need to build up good gut flora. I was beginning to feel a little lost and alone, so I thought I would join this board, and maybe be able to talk with people who have insight and understanding. I hope I can also track my own progress.

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I am back in the hospital. I was scheduled for a colonoscopy and the day before began the Golytely prep. About two hours in I developed vomiting and abdominal pain. We were told nausea and cramping could be normal so I tried to hold out but it got so bad my husband took me to the emergency room.

The scan this time shows more free air and possibly not diverticulitis, but maybe ulcerative colitis or Crohn’s. we are still hoping to avoid surgery.

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