Jaida having odd chills that start in the head & travel through the body.

[Michja]

I know all our symptoms vary but some are the same.

Over the last 3 weeks Jaida has been on 25mls & reduced, a 5 day brake then another 50 mls steroids & reduced over 5 days to help with constant pain & swelling in her elbows. Another pain has been sever headaches & 5 ulcers in mouth & 1 down below. We realise this is another flare but yesterday & today things changed. Symptoms of a chill in the body but worse in the head. J also saying that her eyes are blurry & stop focusing. This lasts about 10 seconds then it goes away. Today it was happening every hr but now every 10mins. J also been feeling unwell when it happens.

Trust it to be on a Sunday night that it ramps up, J refusing to go to the hospital. Wanting to wait until morning & if the situation is the same J won't have an option. I'm nervous.

Any thaughts would be appreciated. I'm sorry reading this back to myself it sounds rediculous, I hope you all understand.

Michelle xx

[sian35]

So sorry to hear this - must be a terrible worry. Follow your instincts - sounds as though her eyes need checking out - I usually know when mine are bad. We have a seperate eye hospital which is a bit less daunting then going to main hospital (even thopugh they are on the same site). I do understand how Jaida feels about hospitals but they can be the necessary place to be.

Take care

Kind regards,

Sian

[Bonlynnl in reply to sian35]

I used to get those odd chills during menses. Almost flu like. I didn't get diagnosed with BD until 2012 but am now certain I've had the BD for a very long time as far back as I think my late 20's. I used to bundle up under blankets and a towel over my head to keep warm during those chill episodes. The joint pain grew as I got older.

[CrystalAngel1]

It doesn't sound ridiculous at all. Poor Jaida, it sounds as if she is having such a rough time of it and it must be so tough on you as her mum too. It does sound as if her eyes need checking out and I don't know what facilities you have for getting this done without going through the main hospital but I can understand why poor Jaida wants to keep out of hospital too. The "chills" sound horrid and I have experienced something similar during a flare and the only way I can describe it what I call an "ice cream headache" - like the pain and odd sensation you get when you swallow something cold too quickly - not only do I get pain but also chills down the body (even though I haven't eaten anything to provoke the attack.) I hope that you can find Jaida some relief soon. X

[Hidden in reply to CrystalAngel1]

My neurologist calls those pick axe headaches Crystal Angel. Michelle I can only echo other posters - it's definitely not ridiculous and anything with eyes should be checked out as soon as possible.

x

Tig

[Michja]

Thank you all for the support. I have Jaida booked in for an appt tomorrow so I do hope the rheumatologist listens.

At the BD conference the main paediatric specalist recomended Jaida be on 4 or even 2 weekly Infliximab and low dose steroids to help joints. I do agree with IV but Jaida hates steroids & how she looks & feels on them. It's all so confusing and then we may not be listened to....

Thanks, Michelle x

[sian35]

Hi

One thing I have been looking into recently is anti drug antibodies. My humira has stopped working so well and I asked if I could be on more humira but the answer was no as I had had a kidney infection with me ending up in hospital on IV antibiotics. I think drs can be scared of giving us too much and us getting very serious infections.

After a while we can build up anti bodies to the biological drug so they become ineffective, or the behcet inflamatory t cell response can 'eat' the drug just as t cells 'eat' other invaders in our bodies. I assumed that I could be tested for drug concentrates and also antibodies but apparently these are usually done as part of a research project rather than as routine. Apparently you can get blood tests for anti infliximab antibodies in our local hospital , but not for humira, and there are also tests for the blood concentrate of the drug itself. I am considering taking part in a trial for a new (for Behcet) anti tnf drug and noticed that these blood concentrates were done as part of the trial. I guess they are expensive but in a trail the drug company is paying. Drs can't even fall back on steroids for me as it affects my eye pressure - i am now on 3 anti pressure drops!

If these kind of blood concentrate tests could be done for Jaida then drs might have more of an idea of what was happening in relation to her infliximab. Personally i am amazed that these test are done more routinely given the high risk and cost of this kind of drug. Perhaps you could ask about this aspect so drs would have more basis for decions on doses for Jaida. I share your and Jaida's frustration at taking these drugs and getting the infections which go with this, and still getting flares and all the troubles which come with this. You really feel it should be one or the other!

Hope this info helps. Good luck at the appointment.

best wishes,

Sian