first post

[rdss13]

I am a 44 year old male diaognosed 7 months ago with P and PA after 3 years of docs, hospitals, tests, and pain.

Been through the usual meds with little success. The mtx was aweful. i have been on Humira for about 3 months now.

Swollen fingers, pain in my wrists, feet, toes, hips, ribs, neck. Some days i can hardly walk and some i can hardly move. Truthfully i am very discouraged.

I have a lot of pain for which i have been given hydrcodone but i am not comfortable taking it, though sometimes i have to. Advice, should i just take it and stop worrying about it or avoid it.

This has really effected m life. I was so active, a runner. Now everything is pretty much a struggle.

What really bugs me is that i am only 44, if it is this difficult to function now how will it be over the next 10, 20, 30 years.

As you can tell the humira isnt helping, I thought it was the top of the line. It seemed like forever to jump through the hoops to get to it.

Oh well, i guess i just needed somewhere to unload. Thanks to anyone who might be listening or reading as it were

Robert

[rosy3939]

Hey Robert welcome to the boards. This is a great place to vent, ask question, and meet other people who like you are suffering from P or PA or both.

I am one of the lucky one I was hit with a double wammy. I have P & PA. I am currently on Raptiva and my6 P is doing realy well. As of now my PA is mamageable but I am always watching for signs it getting worse as Raptiva does little or nothing for it.

Once again welcome to the borda and hope you become a active member here.

Mitch

[rdss13]

I am curious about one thing, what should my expectations be? Am i expecting to much from such things as Humira.

[SandraJean]

Hi Robert,

Welcome to the boards, but I'm sorry to hear of the problems you are having with your p and pa. There are alot of people that post that will come along and help give you answers to your questions and will let you know of different treatments, etc that has worked for them.

P and PA reacted so differently with some many people and the treatments are different for different people. There's a saying that what works for one, doesn't always work for another.

I have both p and pa and I was able to be in a clincial trial study for Humira from Nov 2003-March 2006. It has helped my pa alot as when I first started the study I had 98 joints affected and within 6 months I was down to 36 joints affected. Usually if you haven't noticed any improvement within 3 months, it might not work well for you. Again, some people might take longer. Have your rheumatologist mentioned any other treatment besides Humira? I know alot of people are having very good results with Remicade for both p and pa.

Being it's the weekend, sometimes it might be slower on the boards. I'm sure more peple will respond during the day.

I also have a prescription for oxycodone and I try not to use it much either, but when the pain is unbearable, I take it. Don't hestitate to take it when you need it. I've also used a thermaphore heating pad which works wonders and I've bought those ThermaPatches that you can adhear to your skin to keep the warmth in a joint for up to 8 hours. They also make those patches with ben-gay, etc. Some people will alternate between warm and cold compress also.

Good luck and please keep posting and let us know how you are doing.

Take care,

Sandy

[RichJ]

hi robert,
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.

try and have a good day all

richard

[mamaooch]

I am a 44 year old male diaognosed 7 months ago with P and PA after 3 years of docs, hospitals, tests, and pain.

Been through the usual meds with little success. The mtx was aweful. i have been on Humira for about 3 months now.

Swollen fingers, pain in my wrists, feet, toes, hips, ribs, neck. Some days i can hardly walk and some i can hardly move. Truthfully i am very discouraged.

I have a lot of pain for which i have been given hydrcodone but i am not comfortable taking it, though sometimes i have to. Advice, should i just take it and stop worrying about it or avoid it.

This has really effected my life. I was so active, a runner. Now everything is pretty much a struggle.

What really bugs me is that i am only 44, if it is this difficult to function now how will it be over the next 10, 20, 30 years.

As you can tell the humira isnt helping, I thought it was the top of the line. It seemed like forever to jump through the hoops to get to it.

Oh well, i guess i just needed somewhere to unload. Thanks to anyone who might be listening or reading as it were

Robert
Hello Robert,
I am a 44 year old female, ex runner that was diagnosed with PA and pppp in January, but I have had rib pain for 2 years before they figured out what was wrong. I have been on Enbrel, Humira and right now MTX and I have my first Remicade infusion on Tuesday. I know where you are coming from especially when it comes to pain and the inability to run, and exercise. I have found that indoor cycling helps loosen up my joints and keeps me active and light yoga helps too. The only pain med the Doc gave me was Ultram it's non-narcotic and I only take it at night to sleep, because that is when the pain hits me most. When I was first diagnosed I was very angry and upset, but I have a wonderful husband and 3 boys (19,17 and 14) who deserve better. I just take it one day at a time. I get up, shuffle to the bathroom get ready for the Y, do what I can to make my body work and after a while I noticed that I was able to more each day. It is not without pain, but I never give up, I can't. It is had to believe that 3 years ago I ran a marathon.
I have a wonderful Rhemy at Duke and he is being very aggressive in my treatment, thus the Remicade infusions. You can read my journey under the thread PA of the ribs on this forum. If you have any questions you can PM me anytime.
It's okay to vent, we are here to be supportive, and this place has been a life saver for me. You are not alone and I am sorry you are hurting.

Take Care
Cindy

[Mama Moose]

Hi Robert,
Welcome to the board! :) I'm glad you found this board, because it's a big help when you need someone to talk to, cry to, or vent frustrations. There area a lot of wonderful people here that a super nice. I know you'll enjoy the board. Welcome, and have a great day! :)

[abbyroad]

Welcome to the boards Robert,
you truly will find alot of wonderful support here....whether it's questions you need to ask or just need to vent...we are all here for you!
As you will see, everyone's p and pa is different and so individual....good luck with everything and see you on the boards.

:)

[rdss13]

Thanks for all the good words. I think all of this just kind of overwhelms you in the beginning.

Any suggestions for the rib pain?

[mamaooch]

Thanks for all the good words. I think all of this just kind of overwhelms you in the beginning.

Any suggestions for the rib pain?

I have constant rib pain, what seems to help the most is heat. I use one of those heating pads that you micowave. I also take a med called Ultram that helps me sleep at night. I hope this helps. I hope you find relief soon. I also find that it is more comfortable to sleep in the recliner than on the flat bed.

Take Care
Cindy

[cordiod]

I am curious about one thing, what should my expectations be? Am i expecting to much from such things as Humira.rdss13,

Proceed with patience and caution. I do not have PA (knock on wood) but I had gone through 3 biologics with an erythrodermic flare thown in for good measure before I found my magic potion.

I know that although I tried, I could not help but put "all my eggs in one basket" when I was on my first biologic. It failed...no results, nil. It was at that time I was absolutely devastated. One can only hope that things will work, considering all those hoops and money you have to go through to actually take a biologic treatment.

The best advice I can give you is just maintain guarded optimism.

Hopefully the tide with turn with Humira. I think that that third month is often times a turning point with many biologics.

Best,
Diana

[Kimbercat]

Hi Robert,

I'm glad you found us, but sorry for the reason. This can be such a frustrating disease. I've also been on Humira through a derm trial for about 3 yrs now with wonderful results on my p. I don't have pa, so I can't attest to it's efficacy with that, but I see several others already have. Some drugs just don't work the same as they do for others, as I'm sure you're finding out. If you discover that humira is not the drug to help you, don't give up....there are many new drugs coming along that are getting better all the time. It has to be terribly frustrating going from being an athletic person to feeling like you've been sidelined. I can offer encouragement though, as there are several athletes who have had serious p and pa knock them on their butts, but now have it under control, and are able to return to their active lifestyles. I guess my point is to hang in there, and keep trying to finding what will work for you, but don't be afraid to use pain meds when you need them. Statistically, anyone who uses them for legitimate pain has little chance of becoming addicted to these drugs. Don't let yourself suffer needlessly. Good luck, and I hope you find your winning combination soon.

[Stillworking]

Hi and welcome. It seems that you are on the right track with finding the right combo of meds for you. I'm on Remicade and it has been working well for the past 18 months, although I'm not pain free, I am able to function very well in the world. This is one very nasty condition and it effects each one of us differently so no ones meds are exactly the same. These biologics do take time to get into your system to do their job. If you don't feel that Humira is working for you, talk to your Rheumy about trying another. I found that quite a few of the people here were very athletic and active prior to this, now we are still active and athletic, just remove the very. My Rheumy told me that you can only go forward from here, you can't go back. I found new hobbies and interest to keep my mind and body as active as possible. Good luck.

[nla]

Hello, Robert and WELCOME (although I am sorry to see you have to join us!). You will find a wealth of information here, great support and make some wonderful friends.

Try not to get discouraged. You are right....in the "beginning" this stuff is totally overwhelming to deal with. We all seem to have our setbacks and our "moments". I'm sorry your Humira isn't doing the trick. With your PA (some unsolicited advice here) you MUST find something that helps to slow it down. As you know from how you feel, PA can be devastating and disabling. I have been on Enbrel for 2 1/2 years now for my PA and it has helped that tremendously. There was a time in the "beginning" that I never thought I would be able to keep using my hands to work. It was one of the most frightening things I have gone through. Enbrel hasn't done too much for my P, but as long as my PA is under control I'm happy with that. I know it's difficult, but you MUST work with your doctor (and insurance :mad: ) to keep trying to find something that helps you. I know you will eventually find what helps, it's just so discouraging sometimes during that journey.

We're all here for you!

Nancy

[baldwin123]

Hi Robert,
As the others have said, it can take some time to find the best treatment out there... Humira is one of a couple of biologics used to treat PA- if you are not seeing any improvements, maybe you can see your doctor again to discuss if it is working? If your fingers are swollen and you have that much joint pain, maybe you need a more aggressive treatment plan... you can also try ice or moist heat on the joints that hurt the most... and are you on an anti-inflammatory? The Arthritis foundation has a 2006 Drug Guide (free brochure) which outlines all the drugs approved by the FDA to treat arthritis- I thought that was a useful reference to know what meds are out there... I also wonder sometimes how much my meds are helping and how the disease is going to progress, but I have seen enough slowing of the progression of joint damage and inflammation on my current meds (biologic, anti-inflammatory and DMARD) to feel sure they are doing some good... call your doctor and see him or her to discuss how the meds are working...
Take care! Hope you start to feel better soon!
Jen

[rdss13]

Wow, this is an amazing board. Its the first time i have been able to communicate with anyone who even remotely understands the toll PA takes on the simple living of life. Fatigue pain, pain fatigue. this med that med this thing that thing.

Thanks to all

[Jor-EL]

rdss13 -

Did your doctor recommend getting a Blood-Allergy test for possible food allergies?

[GitOverIt]

since you are new...have you read some of the threads on here!?

here is one to read that sounds promising.....

http://www.psoriasis.org/forum/showthread.php?t=20555&page=1&pp=25


also read the TURMERIC thread........some good stuff in there too.

welcome to the boards! :D

[MikeK]

Hi Robert,

Welcome to the Board! Nice to meet you. :cool: I'm sorry that you're going through such a rough time. :( As you can see a lot of nice and helpful people post here. More imporant, you're no longer alone! You no longer have to suffer in silence. I hope and pray that you find a treatment that works for you.

Good luck. Keep us posted and I hope that you feel better soon.

Mike