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#463829 - 02/28/12 02:47 AM Enbrel what would you do??
aussiegirl Offline
Steel_AS_Kicker

Registered: 02/27/10
Posts: 1107
Loc: QLD Australia
Hi all.
You may remember my first Enbrel injection was delayed because of an outbreak of ulcers.
I finally had my first injection last week and apart from a few flu like symptoms for 2 days and pain in my eyes, it was all going well. I have overall felt a bit better.

Now I am due to have my second shot tomorrow but the dreaded mouth ulcers have flared up something crazy. My lower lip is covered as is the area above my top lip all the way to my nose.

Two things cause my ulcers. Acidic foods and stress/exhustion.
With a crazy month just gone and a crazier one to come I would expect to have the ulcers the whole time.

So my question is would you/should I continue to have my Enbrel shots?

I know I am going to be very very tired after this month. This weekend I have miss 15's Branch titles for life saving. The following Thursday through to Monday I have master 13's State titles. Then Friday after that I have Miss 15's state titles and when I get beack from that I will head off for Miss 15's Australian titles.
With all that in mind I ask again, should I continue with the Enbrel shots?

I want to have them because if they work I should feel a lot better pain wise but I know I will be exhusted at the same time.

Any advise would be greatly appreciated thanks.
_________________________

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#463830 - 02/28/12 02:53 AM Re: Enbrel what would you do?? [Re: aussiegirl]
ineptwill Offline
Titanium_AS_Kicker

Registered: 03/31/02
Posts: 4982
ask your doctor

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#463832 - 02/28/12 03:05 AM Re: Enbrel what would you do?? [Re: aussiegirl]
aussiegirl Offline
Steel_AS_Kicker

Registered: 02/27/10
Posts: 1107
Loc: QLD Australia
Well duh! haha
Yeah was going to do that I just wanted some more 1st hand experienced opinions. There are lots of things the doctors recommend us not to do but in reality we have found that it is ok.
Does that make sense??
_________________________

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#463843 - 02/28/12 05:50 AM Re: Enbrel what would you do?? [Re: aussiegirl]
ineptwill Offline
Titanium_AS_Kicker

Registered: 03/31/02
Posts: 4982
well i take enbrel and when I have had odd issues with it, I ask my doctor. I sort of think he might know better than the lay folks on KA.

I can however, easily sort out your wayward C# minor melodic scales, that's what I am trained to do.

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#463865 - 02/28/12 11:22 AM Re: Enbrel what would you do?? [Re: aussiegirl]
rumble Offline
Royal_AS_kicker

Registered: 01/31/09
Posts: 3828
Loc: NE Oklahoma
Ask doc, but since you say the ulcers break out due to stress and acidic foods, that implies it's not an infection, per se. I might be tempted to try the injection and see what happens. Explain to the doc what causes the sores. See what he says. If they get worse because of the Enbrel, you can always skip the next injection.
_________________________

DX: psoriatic arthritis, osteoporosis, DDD, psoriasis
Meds: MTX since Oct 2009, 15mg/week--Started Humira March 2013
Epidural steroid injections x4; Lumbar radiofreq ablation
SIJ steroid injection and bilateral radiofreq ablation x4

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#463882 - 02/28/12 01:30 PM Re: Enbrel what would you do?? [Re: aussiegirl]
avonldy Offline
Major_AS_Kicker

Registered: 02/26/10
Posts: 2143
Loc: N. Sacramento Valley
With all the swimming you are doing and your time spent outside, I am wondering if the ulcers on your lips could be caused by exposure to sunshine. I get ulcers, or cold sores on my lips if I am out in the sunshine and/or wind. Try to stay out of the sun as much as possible and use a lip balm or chap stick type of product that has a good sunscreen in it. I don't think that the Embrel has anything to do with it. Try to rule out everything else first, before giving up the Enbrel.
_________________________
Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,

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#463889 - 02/28/12 02:03 PM Re: Enbrel what would you do?? [Re: aussiegirl]
Winter Online   content
Third_Degree_AS_Kicker

Registered: 12/01/10
Posts: 281
I get mouth sores too. I use alcohol, hydrogen peroxide and then Campho Phenique. Sometimes, I take a Valtrex too if it is really bad. I got them more on Enbrel because it suppressed my immune system. Also, being in the sun brings them on. I use a hig SPF waterproof sunscreen with lipstick over on my lips, which seems to help. I didn't have to stop Enbrel due to mouth sores only.

Shari
_________________________
Meds: injectable MTX, Simponi, Prednisone

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#463899 - 02/28/12 03:25 PM Re: Enbrel what would you do?? [Re: aussiegirl]
aussiegirl Offline
Steel_AS_Kicker

Registered: 02/27/10
Posts: 1107
Loc: QLD Australia
Thanks for your responce.

You know you may be right with the sun exposure. I do use a realy good sunscreen and normaly I use zink on my lips because it is one of the only places on my body that will burn. (I got 2nd degree sunburn on my lips years ago when playing vigoro in 47 degree temps)
Even though I did not get burnt on the weekend I did notice that I should have used more cream on the weekend at fastest man on sand and then on Sunday at my boys club champs also at the beach.
The week before when I had the ulcers I had spent the weekend on the beach for my boys Branch titles. hmmmm.

I know wearing myself out does bring them on so I always just put them down to that after a big weekend but the sun thing all fits now too. Because of my skin type I don't realy ever burn so I am not always great when it comes to re-applying sunscreen. I will pay more attention now and see what happens thanks.

Will see what the nurse has to say this morning, she will ring Enbrel support also.

Thanks again.
_________________________

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#463901 - 02/28/12 03:49 PM Re: Enbrel what would you do?? [Re: aussiegirl]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 19181
Loc: Upstate NY
can't advise regarding enbrel, but i will say i get mouth sores when i start to flare, and only when in a flare; am learning they are one of the early subtle clues before things really take off. had them at the end of last week, started prednisone on sunday and they are now gone. so if they are due to the inflammatory process like mine are, then whatever helps the inflammatory process, i'm assuming would help the mouth sores, that's only a guess though. as alan said, the rheumy should have the experience to advise.
_________________________


sue

USpA
Humira (no more methylpred or Aleve?)
LDN/zanaflex/flector
vits C, D. probiotics. fish oil. CoQ, Mg, Ca
chiro
walk, bike
no dairy (casein sensitivity), limited eggs

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#463914 - 02/28/12 06:07 PM Re: Enbrel what would you do?? [Re: aussiegirl]
Pea Offline
Gold_AS_Kicker

Registered: 02/24/11
Posts: 1568
Loc: Pacific Northwest
Ask the nurse too if they can put you on an anti-viral for herpes simplex 1.
_________________________
Pea
Diagnosed with A.S. 26 year's ago.
Diagnosed with Fibro 9 year's ago.
Sulphasalazine, Folic Acid, Remicade

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