TNF

[tamirra]

Hi, my daughter has been asked if you wants to try TNF as the other meds she has tried have not helped her, she is very worried about the side effects etc, can anyone shed any light on this for her, bad or otherwise. Thanks. x

[tamirra]

No replies

[behcetshurtsbeyondwords]

Hi Tamirra-- do you mean a TNF-inhibitor med like Infliximab...

[lesleyg]

Hi Tamirra my brain is a a bit slow at the moment - I was thinking the same thing - not sure what it was. Gets a bit scary though when the doctors ask you do you want to try something instead of making the decision for you.

Cheers Lesley

[behcetshurtsbeyondwords in reply to lesleyg]

Yes it can sort of leave you feeling a lack of confidence in your doctor-- but I think many of them will ask you rather than tell you, so you can feel like you aren't pressured into it. As long as your dr. discusses with you all the benefits and potential bad stuff about the drug, then they are giving you a chance to make an informed decision-- but I totally know what you mean, Lesley

[ostrea]

Hi Tamirra, Obviously everyone is different but I have been in Infliximab for many years, previous to this I was on around 22 different tablets every day and only Steroids kept the symptoms suppressed, Imfliximab changed my life for the better and not much in the way of side effects.

Medication for the last few years is 6 weekly imfliximab infusion and 7.5mg methetroxate once a week.

[behcetshurtsbeyondwords]

I have been getting infliximab infusions through i.v. for a little over a year, after trying many other treatments and all of them failing. At first, it seemed very daunting and I was afraid, so I can understand yours and your daugter's fears.

The first infusion took an entire afternoon at the clinic (I was there over five hours) because they had to explain things to us, and begin infusing the drug very slowly to make sure I didn't have a bad reaction to it. I did become very fatigued and light-headed during the infusion and about half-way through I blacked-out-- the nurse stopped the infusion immediately and ran and got a dr. from a clinic down the hall--- it turned out to be my endocrinologist who treats my adrenal insufficiency, and he figured it wasn't a reaction to the drug but that I had a low-cortisol crisis and my nurse injected me with high dose steroid, immediately I started coming to again and feeling a bit better. My nurse ended up keeping there for over an hour for monitoring.

The next couple of infusions happened very close together because they are the "loading doses" that help introduce and then build-up the medicine in the body, I also had to remain there for about an hour observation. Then I think my 5th infusion occurred at 8 week interval and I didn't have to stay later for observation.

My nurse also injects 50mg Gravol and 200mg Solu-cortef (steroid) into my i.v. prior to the infliximab infusion to help prevent nausea and to boost my cortisol level. I have met others at the clinic (although they don't have Behcet's) who also get steroid injections prior to their infusion to help their body cope.. if your daughter is already on steroids, then maybe this is something she should ask her dr. about getting to help her out a bit during the infusions.

I now know to expect to become very drained from the infusion and also I get very dehydrated-- so make sure she brings lots of juice with her! The evening after my infusion I have learned to just listen to my body and rest in bed-- sometimes, but rarely it last more than a day-- it's not worth trying to fight the exhaustion because that just makes it worse.

The 8 week interval was too long for me though because I began getting unbearably sick again by 5 weeks or so-- My rheumy ended up increasing my dose by 100mcg every time and I now get 800mcg (nearing the max dose) at 6 week intervals.

I can't say that this has been a "miracle" drug for me as it hasn't really settled down the aggressiveness of my body on itself and I still am in the same bad flare I've been in for the last four years now. But I do know that things would be much worse without it, and my rheumy doesn't have any other options for me at this point.

One thing I want to be honest about is that I have had two lymphoma scares in the last year and my dr's blame it on the infliximab drug-- I have had two occasions now where my "LDH" level in my blood has nearly tripled in a very short amount of time (which is a sign of Lymphoma). The risks of these strong meds are very much real, and I don't want to scare you, I just want you to be fully aware of them. Don't forget that any drug has potentially serious risks, even OTC meds. and also untreated Behcet's Disease is a serious risk in itself.

I wish you and your daughter all the best! and hope that all goes well and she can find some relief from this new treatment Take care

-Jenna

[tamirra]

Thank you Jenna for being so honest, she hasnt quite made up for mind as yet as if to go ahead or not, we are both very worried that if this fails to help then we have hit the end of the road, we are due to see the prof 5th july to have discussions. Thank you so much. x

[Nemoy]

Anti-TNF's I think she will find that the pros far out way the cons, however everyone is different so I can only speak for myself.... I was on Humira for 18 months and got gret results for almost a year.... My bodies now built up antibodies so onto something new.... I took Methotrexate along with it.... There are other things to try after anti-TNF's that work in different ways so do not worry if they don't work however lots of people I know have had great results with Infiximab which I think she will be started on firsts

I will try to find the page on biologicals that they use as a guide when treating with these types if Meds

Good luck!

[tamirra]

Thank you all for your answers, much appreciated.

[Michja]

Hi Tamirra,

My daughter Jaida has had three treatments using Infliximab & 1 week off the next. I will say this, I was nervous starting this treatment especially after hearing the warnings. But after exhausting all other treatments with no improvement & not able to reduce the steroids below 25, the rhumatologis descended Jaida had been through enough. I feel Jaida became sicker before finally the last two weeks we have her looking well. I was starting to become worried & wondering if it was going to work. Telling myself to be patient, I can now see this wonderful medication working on her body in a positive way. Jaida tomorrow will be on the lowest dose of steroids in 6 months at 12.5 & that's so exciting hopefully the puffy body will go soon for her sake. Jaida is still on all other meds but it was the high dose steroids I was worried about.

As far as the treatment goes, it is hard to watch. It begins fine but about 1 hour in Jaida suddenly becomes agitated (not her personality at all) & cross, then another hour on it knocks her rotten. Her eyes glaze over, there are tears & this is where my hugs & kisses help sooth as best they can. We have got in a good routine of taking Jaidas favourite movies & a chocolate muffin, as the treatment start to finish takes 6 hours. As you have more treatments this time reduces by about 1 hour, I think. Her left eye has pressure sitting around 29 & that obviously is an issue, but hopefully as her body improves so will her eye condition.

The best thing to do is have a great chat with your dr so you are fully informed.

I'm hopping I haven't spoken too soon but Jaida has been at school full time for 3 days this week & she is playing a half of netball tomorrow. Life is looking wonderful & we feel in control. NOT BD controlling us.

Good luck, Michelle. X