Everything hurts.

[jperng]

Everything hurts.. even my jaw joints.. not sure how common that is but it hurts. I am pretty sure Enbrel has given up on me. P spots are poping up left and right. Nothing scary yet but it's getting there. Everything just hurts so much. Even sitting up and typing on the computer is a pain. My appointment is not until 9-12 and I am all dosed up on pain killer (aleve). help me! :(
Well I know you can't but I just need to scream.. ::SCREAM:: ouch that hurts too :p

[Shawn116]

jperng,

Im sorry you are feeling so bad. I have been in a bad flare for about .... well it seems forever. I'm with ya.... lets scream together!!!! I hope you feel better soon.

[LoriASoCal]

I'm sorry you are having problems. How long have you been on enbrel? I was on it 15 months I think and it worked great for 9 months. I am now on remicade. It's about buying time and we are in a good era with new things coming all the time. So, if in fact the enbrel isn't working and it may be just temporary that it's not, there are other avenues and the great thing is we will have more choices very soon.

I understand the jaw pain issue very well. I think it is very real although even my rhuemy was hesitant to admit it might be the PA for a very long time and referred to it as TMJ. But if it were TMJ it wouldn't have improved along with everything else at the start of the biologics. Most doctors tend to disgard what isn't classic text book out of fear, I think.

keep the faith!

Lori

[jperng]

thanks for the replies. yah.. the jaw pain was werid.. thought it was a tooth issue at first.. but nope..it's a jaw joints issue :eek:
I been on enbrel for about 2 years now. Start to feel the effect running away from me since April/May ish.. now I still do the shot every week but I don't feel anything besides the pain of poke myself with the needle. :D
I can't wait to see my rhemy.. but he is sooo booked.. can't see me till my regualr appointment date.. which is 9-12... only good thing about it.. it's not that far.. oh well... I guess I have to tough it up :cool:

[docmks]

Hi Jperng,

I am really sorry you are in such pain. Are you taking any other medications for the PA other than the Enbrel? I was wondering if you were on MTX too. Pain with PA can just be so severe. Lately, my skin is looking really good, so people who see me think I'm "fine" at first, at least, until they see me try to walk. I don't understand why the drugs help with one aspect of this disease, but not the other, at least not all the time.

I am pretty sure I have seen an article about pain in the lower jaw (TMJ) and PA. I definately have heard of people describing this who have PA, and some of my past problems with jaw pain may have been PA.

Hang in there, and don't be afraid to ask for something stronger for your pain if you need it. Let us know how you are doing.

MK

[jperng]

Thanks MK. I am only taking Enbrel for PA atm and regular over the counter pain killer. I dont' know what tirgger the pain or it's just the drog stop working. I guess I will let my rhemy figure it out on Monday.
Hope for the best

[grannyfranny]

I had TMJ and believe me it hurt! BAD Had to take pain relievers with codiene.
If the rhuemy doesn't know,,,check with your dentist. TMJ can be stopped by making sure your teeth are aligned and using a bite guard.

Hope you get relief because this kind of pain will make you cranky!

[Kimbercat]

Jerry,

I'm so sorry you're experiencing such pain. :( It is definitely possible to have pa in your jaw joint. You will probably hear from several people here who have had it confirmed. When I experienced jaw pain, my primary care doc referred me to a dentist who specialized in TMJ and similar issues for special x-rays, which would show any deterioration in your jaw joints. I was fortunate in that mine proved negative, but I would definitely request this type of x-ray in your case.

Sounds like it's probably time to discuss other treatment options with your rheumy next week, and I hope you can find some answers to help you. Good luck, and feel better soon.

[SandraJean]

Hi Jerry,

So sorry you are having such a time with pa and also with the joint pain in your jaw. My daughter and my sister both have TMJ and have said how painful it can be. My sisters doctor told her not to eat anything that she had to chew really hard when it was acting up and try not to smile really big during a flare. My daughter tried massage and it helped around her jaw joints.

Hopefully you'll find some releif till you get to the doctor on the 12th. You'll have alot to discuss with him.

Good luck and let us know how you make out.

Sandy

[mb2]

Sorry to hear that you are having such pain to deal with. Maybe you could phone the Doc's office and ask for something else? I have osteo and psoriatic arthritis and take Mobic as well as Enbrel. Mobic seems to help a lot.

I definitely have PA in my jaw. The TMJ specialist I went to for jaw pain did a tomogram in July and compared it to one from 2-3 yrs ago. It showed wear and tear damage as well as clearly defined PA erosions in the "back of neck and head of the condyle" that had shown up since the last tomogram. I took the pictures to the rheumy who said it was obviously PA. I just found all this out in May. Started Enbrel at the end of May. Seems to be working. Hard sometimes to know if what hurts is OA or PA.

Hope you are feeling better. Hope they keep doing research on this to find something that helps even more.

[RichJ]

hi mb2,
sorry i can't help much but welcome to the p family. you have met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you

have a good night all

richard

[mb2]

Thanks for the welcome Richard. I must be going to a good Doc bec I do not have psoriasis (yet) that they can find. I do have 2 sausage digits--a toe and a finger. They are extremely painful. I basically can't use the finger, but it's the pinky on my left hand so that is good.
Now another toe is feeling like the sausage toe. I think the Enbrel has slowed the spread of the PA, but not stopped it. I wouldn't call it a miracle--and I didn't see a lot of change for almost 3 months, but now it's definitely better. I have also started getting pain in the ball of my right foot, on the side of the same foot and near the heel.
I am exercising as best I can. Two years ago I was nationally ranked in my age group in duathlon (run/bike/run). Can't run due to OA in my knees and now it's starting to hurt more to walk. Can't swim bec I have a torn rotator cuff and swimming makes it hurt more. Am lifting wts, stretching and cycling, but all at a much lower level than before. Hard to adjust to, but I guess I should be glad that I can do what I can.
Thanks for the welcome. It's nice to be able to discuss this with others who know what you're talking about.

Mary

[CarenVC]

If your jaw hurts, it could be TMJ. My mother had that. It's a jaw joint problem. Mobic didn't work for me, but I hear it's great for others. I couldn't get out of bed a few weeks ago..everything hurt. My father told me to take 2 aleve and it helped. I do hope the pain stops for you. Pain sucks.

[crimekate]

Let me add my empathy/sympathy as well.
The pain can be horrendous. Ditto to those who have said not to be shy about asking for stronger pain meds if you need them. Take it when you need it; hopefully you won't need it all the time (and even if you do, it's not the end of the world).

I have the jaw pain as well -- not sure whether it's TMJ or PA. It did definitely get worse/more frequent with this PA flare. Mine comes and goes, and is usually not terribly severe.. hopefully it will pass for you as well.

kate

[jperng]

thank you for all the kind words and info. I guess I will find out exactly what options I have and what is wrong on Monday. Wish me luck. Now I have to drag myself to a wedding that I have to attend... since I was the match maker :) :D

[ouchyk]

Have fun at the wedding! :) Will be looking forward to hearing what happens on Monday.

Good luck, feel better.
Karen :)

[RichJ]

i hope you have less pain jerry.
mary, i hope you find some thing that will stop your pain. i wish you the best

have a good night all

richard

[meghan_72]

jperng,

If you've been on Enbrel for 2 years and it's starting to fail, it seems like you should discuss some of the following options with your doc:

1. Increase the Enbrel dose.
2. Add a DMARD like methotrexate or Arava...
3. Get on an NSAID if you can, there are a trillion different ones and some work better for certain people than others.
4. Discuss switching to Remicade or Humira.
5. Short-term low dose prednisone.

When my jaw was killing me, I used heat and ice on my neck and cheeks. Ice felt better on the joint, heat was good on the neck. My tomogram or whatever that is (like an x-ray but slightly different) showed definite deterioration, but it's been a really long time since I had that taken.

Feel better soon!
Meghan

[jperng]

Thanks again for all the different options and info you guys provided for me. I saw my Doc today. Told him and show him where and how it's effcting me. he wants to put me back on 25mg twice a week to see if it helps first. If it doesn't He is going to switch me to Humira when I go see him on 10/10/05
he was thinking of adding methotrexate to my treatment but for now he wants to see how I would react with enbrel alone before adding more meds to my diet. I am trying to stay away as many meds as possible. So I kinda agree with his decision there. As for now just daily soak of salt bath and bengay/icehot and aleve to ease to pain.