2nd opinion

Hey folks, I hope you are all doing well.

About a year and a half ago I was diagnosed with Behcet's. I was really fortunate because my doctor was well versed in the condition even tho it is very uncommon. He was my PCP and sent me to a specialist in my area. She threw me on 40mg of prednisone and 2000 mg of cellcept. All symptoms of the disease vanished. Then I noticed my eyesight changed, after talking to a great eye doctor he pulled me off the prednisone because it hurt my vision. My vision got a little better but my prescription changed. I still have 20/20 after contacts thankfully. I had the same prescription for over 15 years at -1.75 now its -2.75.

So I went to my specialist who didn't seem to care that I came off the meds. After a few months I noticed I didn't heal well from simple cuts and they looked pinkish for ages before they went away. I spent the next year asking my doctor to take me down on it or off it. I stepped down on it without her consent to 1000mg which helped me heal better, still lite to no Behect's symptoms only ulcers if any. Well I guess I got on her nerves, she told me to come off of it if I want but that she wouldn't be responsible for anything that happened. I then asked how I should come off of it. She then said in a rude tone, just don't take it more and see what happens. Which seemed odd to me since it took me 6 months to get to the dose I was on.

I lost all faith in this doctor. They even threw a fit when I asked for my records. When I told them I wanted a second opinion she told me no one would try anything else because I was on the right meds.

I have a very supportive family which is the best. We decided to make it a vacation and go to The Mayo Clinic in Florida. In September 2015, Hopefully my PCP will take over my care after that because I can't work with this specialist anymore.

I've been a member on here a while and I feel like my condition is very lite compared to most of everyone here. BAD Mouth ulcers and occasional bumps on my legs were about it. I feel like the meds I am on are too risky for someone my age (28) I am able to work out daily, hold a full time job, college and 3 kids. This disease won't knock me down. But I fear that with a little time drugs like Cellcept will.

What do you guys think? Am I right to search for a better med solution. Is Mayo good at this? I've also herd that this can get better in time. Really the first 5-7 years are the worst. I've read a ton of material. I sure don't feel like I have a nasty rare condition. For those who don't have it bad, do you just take meds during flair ups? Or are you on low doses?

Your opinion matters to me. I am still new to this.

8 Replies

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  • Hello there- I agree, DO NOT continue to see this doctor! There are plenty of specialists who are willing to listen. I personally was diagnosed a month after my flare just by verbally telling the MD what my symptoms were. I am curious to why cellcept right off the bat. What symptoms were you having? Most doctors will do prednisone to calm the flare and then start on something "mild" such as colchicine and then move up the line of immunosuppressants. I am on colchicine. It took me 6 months to get to half a dose of colc. with huge thanks to Joanne Zeis, a BD 'specialist' here in the USA.

    I am like you as well, active and living a pretty healthy and happy life right now sans children (I am 27).

    Best piece of advice for you, rest as often as you can and as much as you need. This is honestly the best preventative and treatment. Second best- cut all unnecessary stressors and obligations. Seriously. Thirdly, assess your diet- clean it up. I cut all processed and sugars from my diet and incorporated an anti-inflammatory diet (google) and I have never felt and looked better. I also take probiotics daily (acidolphilus and nexbiotic 19 strain (available on amazon for cheap). Lastly, I eat coconut oil daily whether it be pill or with cooking (I swear by it and notice a difference within a few days when I do not take these supplements (joints, stomach and skin). Other than that, I take aleve from time to time now and my half dose of colcrys which makes ulcers very small and cuts healing time to 2 days usually (I used to be on an arthritis med and a ton of other antibiotics and antifungals).

    Any other questions let me know- and welcome?

    Continue to feel well-

  • I'm on the same page with the rest and low stress. I may have a high energy life but it has very low stress. I definitely feel like I'm on level 9 meds for a level 1 condition. Pre diagnosis I was still able to maintain a very good quality of life.

  • That was a great post. Thanks for all the advice about meds and diet.

  • Hi Miataman,

    At this point in my life, I have a really mild case of BD. I'm almost 60 now, but got my first symptoms when I was 23. It took 17 years to get a diagnosis, and I've been helping other BDers ever since (you can see the table of contents for my latest book here: bit.ly/1vgpeNM -- NO pressure to buy anything, because your local library may be able to get a copy for you).

    If you're going to Mayo in Jacksonville, I hope you're going to see Dr. Butendieck in Rheumatology. He worked with (and then took over for) Dr. Calamia, one of the top BD docs in the US. Here's his info: mayoclinic.org/biographies/... I've never met him, but I've heard positive things from other people who have.

    I'm surprised that prednisone caused a problem with your eyes -- it's used as a first-line attempt to help with uveitis and other BD-related eye issues. If your prescription changed, it may have nothing to do with the meds you were on at the time, and more to do with BD sometimes changing the shape of the cornea. These changes can temporarily affect the ability to wear contact lenses because they may no longer fit properly -- but it makes sense that it could also affect a person's glasses prescription. According to the NIH, "the cornea contributes between 65-75% of the eye's total focusing power."

    If you want to ask your doctor about this, here's the journal article reference:

    Sañudo-Buitrago F, González-Méijome JM, Bueno-Jimeno I, Navarrete-Sanchís JN,

    León-Jiménez N.

    Topographic and refractive changes in a patient with contact lens intolerance associated with Behçet disease.

    Br J Ophthalmol. 2008 Mar;92(3):438-40.

    doi: 10.1136/bjo.2006.101014. PubMed PMID: 18314409.

    I've heard from several people who were suddenly not able to wear their contact lenses because they no longer fit correctly, so this article makes a lot of sense to me.

    Hope this helps. Hang in there!

    Joanne Zeis

  • I've read your book, it has helped me a ton. My family has read it too, it helps them understand what I deal with. The eye specialists was very convinced the prednisone was a factor to my vision. I was on 40mg a day for almost a month before I realized what happened. This eye doctor is the best in my side of the state. He is very good, he talked to me more about my condition than my main doctor. So far contacts fit, thankfully I don't like wearing glasses.

    I'm excited to go to Mayo, I'm even more happy to have such a great support team with me.

  • Hi..my friends wife was on prednisone for Lupus which caused glaucoma in her eyes and I his dr mentioned that its one of the side effects of prednisone.

  • Well that sure doesn't sound fun.

  • It has been a while since I have posted anything here. I have a long story.

    I decided that I did not trust my local doctor and that I needed to go to Mayo, before my trip I was issue free. Since I thought the level of my condition was low, I decided to come off of all medication. While I was at Mayo, I was great and had been med free for 3 weeks. I saw Dr Wang, who said it was a mistake to come off the drugs completely and that the level of my condition was medium-rare in steak terms.He cut my old dose of cellcept in half and sent me home. Once home my Bechects kicked me hard. I have had an array of problems; worse than when the disease showed it's face a few years ago. I assume that the issue was that I was managed and dropping my meds completely for a short time opened the door to my current problems. I also assume it may take months to get back under control. When not on prednisone I suffer from fever and night sweats. But as soon as I take my 5-7 day flare up dose those issues vanish.

    I feel like I am getting close to being managed again since 10MG of prednisone can make all my problems vanish on the first day of taking it. But this sure is frustrating. There is no local doctor I can see so I have been emailing Mayo and doing some self doctoring.

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