down but not out

hello all sorry I was missing for a few weeks a computer virus killed my computer and when I got it fixed after two weeks I was admitted to hospital with a flare up of epic proportions and after 14 days of tests lumbar punctures mri scans cat scans biopsies and every other test they could think of they started me on infliximab infusions after it was discovered that the humira was pretty ineffective I had my first infusion while an inpatient and I must say that for three days after I was pretty miserable but low and behold I started to feel a hell of a lot better I had my second infusion last Tuesday but I was sick as a small hospital for five days after the second infusion but again as the misery faded the feeling good effect has set in and hopefully this will continue fingers crossed some strange side effects have happened but with this stuff you are bound to get some of them.i am down to 25mgs of pred a day as opposed to the 40 I was on pre infliximab I am also on folic acid daily and back on b12 injections and 100mgs of dapsone daily plus all the usual smarties the neuro docs have diagnosed me with neuro behcets so the whole deck of cards has been played but on the plus side once you get over the first few days after the infusion the difference is incredible so that's the end of todays blog and once again hello to all and I missed the community and welcome to all the new members keep fighting and never give up kindest regards chris

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  • Hi Chris, glad to hear that the infliximab is hitting the spot for you!

    Must have been a bit of a bombshell to get the neuro behcet diagnosis ... As if behcet isn't rare enough you find yourself part of an even rarer subset.

    My thoughts are with you, and heartened that you are feeling brighter.

    Lots of love Jill x

  • Hi Chris,

    I am also very happy to hear that things are turning around for you :) That is great that the Remicade infusions appear to be helping, and I pray that they continue to help you out even more as time goes on. Take care and stay strong!

    -Jenna

  • hi jenna hope your keeping well ,thanks for the post so far so good on the remicade the side effects are pretty severe but worth it when they wear off, heres hoping it stays working,

    kindest regards chris!

  • hi jill thanks for the thanks for the kind words and so far so good on the infliximab and as for the neuro side I was pretty bowled over by diagnosis but as you well know behcets has its own plan and all we can do is keep trying and get on with life heres hoping that it stays under control for a while

    hope you are keeping well ,

    kindest regards chris

  • Hi scruffy,

    Do you know how they diagnosed the Neurobehcet's? Was it on the basis of the brain MRI alone? I have a long history of severe migraines. An MRI some years back showed a few non-specific hyperintensities. At the time Behcet's was not on the radar, but now I am concerned I may have the Neuro type.

    Regards,

    AusBehcet's

  • hi AusBehcets,

    I had the mri and a ct scan and a lumbar puncture the mri showed small spots on the brain but the neuro docs said it was lesion damage and because the meds I am on surpress the symptoms its likely that if I was not on the meds the lesions would be very visable and coupled with that the spinal fluid had raised protein levels and had increased pressure in it.I have really severe headaches and memory loss poor concentration levels etc so it may be worth your while getting it checked out if only to put your mind at rest,

    I hope this helps,

    kindest regards and good health

    chris.

  • Hi chris,

    I've already seen two Neurologists who have downplayed my symptoms, which are now getting worse. Also having a Neurogenetics Prof's work up. See her again in June. Seeing an Immuno/Rheum/Opthal Prof in Aug. It's taking too long to get a diagnosis & access to treatment. Probably have had this all my adult life, with progressive insidious fatigue, lifelong headaches/migraines, skin problems, folliculitis, mouth ulcers (only as a teen & in early adulthood), chronic nasal septal ulcers, chronic sinusitis, stomach & oesophageal ulceration, no genital ulcers but have had anal fissures, perianal folliculitis.

    One seizure (1 min tonic clonic) accompanying Pneumonia & high temp. several years ago. Now have poor memory, poor word-finding, lack of speech, hesitant speech, lethargy, low mood, poor sleep, episodes of insomnia, confusion, poor concentration, slowed thinking. Have fibromyalgia, dry eyes, episodes of eye-balls shrinking, some pressure at back of eyes & popping episode behind eyes. Dehydration & thirst at times.

    Regards,

    AusBehcets

  • Hi Chris,

    That's so wonderful, the Infliximab working. Ya hoooooo. I can hardly wait for my daughter Jaida to feel almost brand new. It's great you are reducing the meds etc. I'm not sure what you are like during the IV but my daughter becomes agitated then compleatly wiped out. The folowing day she is still pretty horrible. It's so heartbreaking to watch, but hearing how well you are is wonderful.

    Just wondering did the neurologist put you on B 12 for headaches? My daughter was put on this 2 years ago & it worked for her headaches.

    Regards, Michelle

  • hi michelle,

    when I am getting the iv I feel pretty sick and the last one I had I felt exhausted and sick for a couple of days but when it passed I felt as good as I have felt in a long long time I really hope that it works for jaida.it will if it does work give her back some normality and she should feel a whole lot better,as for the b12 the meds stripped it out of my body and without it I got completely run down so I have regular injections after a first dose of 5 injections in two weeks and now I get an injection every 2 months to maintain healthy levels I haven't really noticed a big change in the headache department ,I hope this info helps and if jaida is off for a few days after the iv that's normal I know as a parent its so hard to watch but take it from a fellow parent you are doing a great job and you have jaida on the right road she will feel the benefit sooner rather than later I forgot to mention I was given folic acid when I was in hospital and when I asked what it was for the rheumy told me that if you are on steroids you should be on folic acid as the steroids strip the iron out of the body and I feel this has also helped fingers crossed for you and jaida and let me know how she gets on with the infliximab,

    kindest regards,chris

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