So many decisions, how to choose?

[Lala1618]

Hello, I was diagnosed with Crohns about 10 months ago. I am 44 and have been misdiagnosed with IBS and stomach flu, etc. for years. I was having issues for about four months and the previous meds for spasms and diarrhea (nulev, lomotil) had not been helping and I went to a GI doc. He seemed to immediately know what was wrong, set up a colonoscopy, daignosed and had all the testing done to make sure I could take the Humira. Had me up and a lot better within two months. I had gone on 60mg Prednisone, 12 Pentasa caps daily and Humira. After on Humira, I was tapered off the Pred and then the Pentasa. About 3 months in with the Humira I started loosing a lot of hair (thinned halfway and I have fine hair to start with). That being said, I stopped taking the Humira. I figured I had lived with this for at least 2 decades without any major treatment, I would get past it and keep what thinning hair I have left.

A couple months off the Humira and I am back to having a horrible flare. My GI doc relocated and I went to another on Tuesday. After reading so many horror stories, I feel like quite a baby and very nervous about different treatment options. The new GI doc gave me several different options to look up (since I need to stay within a budget I can live with for meds). He started me back on 40 mg Pred, and 75 of 6 MP (I started that yesterday). Have not really noticed anything yet, except like I was going to be sick momentarily a few times, but it passed. I go back on June 4. The other medications he had me research for price are Asacol HD and tablets. Linalda, methotrexate injections, Cimzia and Remacade. Well, while looking up these options, the side effects seem just as bad and I am wondering if I should just continue on the Humira and deal with the hair loss since I know what to expect. I seemed to be pretty much in remission and much better than I am now. Not to mention I hate to say it, I am medication forgetful and just one injection every other week is easier for me than pills throughout the day.

I also have H Hypothyroid (18 years) and just that in the morning to remember is a challenge. With the Humira card and my insurance it is also the cheapest option for me. The other that I would be able to afford is the Methotrexate (did like those side effects either.) They way it seemed was, like he is starting me on the prednisone and 6 MP then, taper me off Prednisone when 6 mp builds up enough in my system and then add one of the others for maintenance. Does that seem about right? I guess when I feel better, I forget just how bad I feel without the medicine. Except I am not looking forward to this predinsone ride, it makes the rest of me feel horrible, while getting the Crohns under control. I guess since this is my first actual experience with these types of medications an evidently untreated Crohns seems to just get worse with each flare it has to be controlled, I have to take something and my though is if it was working and I stopped it for just one negative side effect, I may be just trading for a lot worse.

Any opinions or insight greatly appreciated. I'm sure new Doc is great, has been around for a long time and a lot of docs say he is the best. Just feel like I might have jumped the gun. He says he has had no actual good results with Pentasa, prefers the 6MP and I guess trying to give me other alternatives to the hair loss, but from what I have read, could be worse. Have no idea if I explained this right. Thank you for listening.

 

[David]

Hi there and welcome to the forum! I'm glad you joined and I hope we can help you out!

First off, do you know specifically where your Crohn's Disease is located in your digestive tract? That can help us a little with some of our recommendations. For example, if it's only in your small bowel, then the Lialda and Asacol wouldn't be high on my list.

Should you take the Humira and deal with the hair loss? I can't answer that, only you can. It's weighing remission versus hair loss.

Another option I suggest you look into would be enteral nutrition. If it's something you can stick to, the remission rates are as high as prednisone without the side effects. Another interesting option is Low Dose Naltrexone. You'll find subforums dedicated to these under our treatment section.

Are you on any vitamin supplements such as vitamin D or vitamin b12? If not, have you had those levels tested as people with Crohn's Disease are commonly deficient.

Again, welcome to the forum

 

[Lala1618]

Hello David, and thank you for responding. I have the report for the sigmiodoscopy, although the test could not be completed due to "the activity of of inflammatory bowel disease present to minimize the risk of perforation". Says exam performed to approximately 20 cm fro the dentate line. Acute inflammatory bowel disease was noted with severe mucosal congestion, hypermemia, touch friability, rake ulcerations, and nearly complete obliteration of the lumen with inflammatory findings with fixation of the sigmoid colon. Says distal to this, the mucosa cleared considerably. There were areas of skipped inflammation and superficial ulceration from 20 cm to the dentate line. The rectum was relatively spared.

I really am not exactly sure what that all meant, just know I felt worse than I had ever felt. I do take several vitamin supplements, and they do include B-12, calcium, and folic acid in them, although not sure if amounts are adequate for condition. Before I was diagnosed, on routine blood work my B12 was always pretty low.

I hope this will help you be able to help me a little more. Thanks again!

 

[Angrybird]

Hello and welcome to the forum. Defintly get your B12 levels checked and get the actual number from the doc, I doubt the supplements you are taking are enough to get this to an acceptable level (I think David likes it to be around the 500 mark if possible :biggrin

With regards to the Humira I can only agree that it is up to you about weighing up the improved tum against the hair loss, have you had a chance to look at the other optioins David mentioned? What are your thought on these?

Hope you can be feeling better soon

AB
xx

 

[David]

It means that, as of your colonoscopy, your bowel was in really bad shape. I'm not surprised you felt so terrible.

If you're taking a multivitamin and that is what includes the B12, then no, it would contain nowhere near as much B12 as needed for someone who is deficient as a result of Crohn's Disease.