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Behçet's UK
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My experience with BD

I feel horrible most of the time! I know my family is tired of my complaining, so I keep it to myself a lot to of the times.

I have an appointment with a vascular Dr this coming Tues 8/21/18, so I'm praying for answers that I have!!

I had the worst migraine this past Thursday! I seriously thought I'd die before it stopped! It took 2 Axerts and 2 sodas before it stopped! Migraines will usually respond to 1 Axert for me, but not this one! It was a monster headache!! I was so thankful when it stopped!

I'm praying for better days! I don't like feeling like this!!

I try to smile through the pain, but it's hard at times. But I keep pushing on.

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You have such a positive attitude! It's so hard for people to understand sometimes how bad we can actually feel when we don't look 'that" bad on the outside! Glad you have this space to share with us so you don't have to keep it in!

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I will keep it brief - I take immunosuppressants - worked no migraines for over two years. Post how you get on.

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I have been on Methotrexate for 3 years with no relief, my Dr has changed MG several times to no avail.

Which immunosuppressant are you on?

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Hi Shari. I was told at my clinic that methotrexate makes behcets worse not better. Maybe this is why it’s not responding. I thought it was a big no go in terms of BD. I had the same experience that I took it over three years and when I wasn’t responding they kept upping it.

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Sorry I realised that wasn’t very clear. My previous doctors thought I had lupus hence the fact I was given methotrexate. When I didn’t respond after increasing it to the max, it was changed to azothiaprine and this was much better though I am still ill. When I was finally diagnosed with BD the centre said the reason I didn’t respond to methotrexate is that it is not suitable for BD at all

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Thank you Vicki!

I see a Vascular Dr this Tuesday I'll ask him and if he won't do anything, I see my Rheumatologist a week from Monday so I'll show him your reply.

That was me, they diagnosed me in Feb 2015 with Inflammatory Arthritis, an umbrella term for RA, Lupus, Crohn's, Psoriatic Arthritis. So that's when he put me on Methotrexate, Plus biologics. I'm on the fifth one now because my immune system sabotages them and makes them stop working. Or is it the Methotrexate making the pain worse?! I'll be sure to ask next Monday!!

Thanks again!

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I hope you find some answers. I was told this by the clinic lead at the Behcets centre of excellence at the Royal London.

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Thank you Vicki!

I'll try to remember to update you after I see the Dr! But my memory is horrible too thanks to BD!

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Me too 😂

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Azathioprine - 150mg daily.

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Thank you Sam! I'll ask my Dr about it tomorrow!!

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Hi Sam,

I've been on Imuran 50 mg for 1 month and I've had some relief from pain but no migraines!!!!!!!!!!

I go today for bloodwork and if my blood is okay the Dr is going to up the mgs.

I'm very tiny so he has to be careful with drugs. I'm 5 foot 1 and 97 pounds.

Thanks again for telling me about this awesome immunosuppressant!!!

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I am glad it has worked - keep posting how you get on x

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I'll try to remember but BS, good name for it 😁 is ravaging my memory.

Thanks again for telling me about this med!

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I went this past Monday for blood work, but I've been feeling so much better with no migraines!! Migraines made me feel so much worse!

I'll try to remember what Dr says about blood work results. Like I said if it's okay he's going to raise the MGS of Imuran!

Thanks once again for telling me about this drug!!

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Hi Shari. I'm so sorry for your suffering. Excruciating headaches marked the beginning of my Behcet's journey almost 30 years ago--my MRI revealed multiple brain lesions and my medical team sent me to the Mayo Clinic for evaluation. (I do not live in the United States). Later, I developed near-fatal gastrointestinal Behcet's (in addition to the more common symptoms). This prompted the start of a biologic approved for experimental use. Three years ago when that biologic lost efficacy, I started another new biologic in combination with methotrexate (to reduce the possibility of developing antibodies to the biologic). That combination of medications gave me the best 3 years of my Behcet's-inflicted life. I almost felt normal. Biologic treatment elminated my blinding headaches. I hope you receive effective treatment soon.

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Thank you so much!! I see my Rheumatologist next Monday. I asked him today to look into if Methotrexate makes BS symptoms worse.

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I have Hemiplegic migraines, migraine with brainstem aura, and just regular chronic migraines. I took azathioprine that didn’t do anything, Otezla actually has caused some of my worst migraines. I see a neurologist for mine. He prescribed verapimil, Triptan and migrelief (for now). My migraines cause stroke like symptoms and paralysis, and headache. Sometimes they are comorbid with the disease instead of a part of BD. If you are having such horrible ones, it might be good to see a headache specialist. My doctor specializes in immune related neurology, but consults with headache specialist for my treatment. My active Behcet’s makes it difficult to transfer me. At my worst, I’ve gone to emergency for magnesium infusion, that works miracles! Along with Benadryl of all things. Anyway best wishes! My migraines cause trouble, but I think for me, constant joint pain is my nemesis. I have fibromyalgia too and between the flu pain and joint pain sometimes I just feel like sitting down and crying. I hear ya!!!

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