Those of you with PA?

It's been awhile since I have posted anything, but thought a few of you might be able to help me, or at least rationalize what I am feeling/thinking. I have only been diagnosed for a little over a year with PA. It started with one swollen knee, then progressed to a toe. I've been taking a nsaid twice a day for over a year now. In the beginning I was also taking sulfasaline but after 3 months decided it was not doing anything for me except making me miserable and decided to switch over to mtx. I also over the course of the summer avoided all gluten, nightshade and adopted a anti-inflammatory diet that also seemed to provide little to no relief. Every time I have seen the doc we have up'd the mtx dose, and last visit before the holidays it seemed like things were slowly improving, but since then it really seems as if things have just gotten worse. My apt was not for another month, and under convincing from my wife decided to call today to see if I could get in sooner. Sure enough someone canceled and they were able to get me in tomorrow. The swelling has not only spread to my fingers now, but I have have pain in both hands where up to this point the pain had only been on one side of my body. I just can't deal waking up in the morning not being able to even make a fist, and spending all day in pain, and so tired. My health insurance sucks, and I am not sure what else at this point I am going to be able to do/afford. I feel like a wuss having to call the rhumey and complain about being in pain, but at this point I do not know what else to do. I certainly do not expect him to snap his fingers and make everything better, but my quality of life has got to be better then this. Do I really have to suffer like this everyday or can it be better?

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You are not a wuss your pain is real and making your life miserable.Great that you got an appointment straight away and you have every right to ring and get another appointment if you think your treatment isn't working.I certainly wouldn't hesitate to ring and try and get in earlier if I was in pain.Hopefully your Rhuematologist can come up with a treatment plan that helps you.Keep trying different options you just haven't found what works for you yet.You can get better with the right treatment that works for you and the help of your rhuematologist.You didn't say what dosage of MTX you are on .I am on 15mgs and that works for me but some people take a higher dose for PA . I hope you can get something to help you soon.Good luck.

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I can completely relate to your situation. I am quickly getting worse on MTX not better and ALSO have a dr appt that I begged my way into tomorrow lol... The best thing I can say is see what the dr says, something like Enbrel (which is what I am hoping for) have programs to help with payments (also what I'm hoping for :) ) Keep us updated on what the dr says tomorrow, My thoughts and prayer will be with you that your doctor can find something to at least offer some relief.

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i am so sorry for you, but i can relate 100%! i have no quality of life and cannot believe i have been suffering in so much pain for two years, it's crazy! mine started when i woke up one day and couldn't walk, then it was a year of tests and switching doctors and the emergeny room and half the docs would not help me and thought i was just looking for drugs....it made the depression from this even worse when i was accused of being a drug addict a few times and refused help. it is a miserable thing to live with and i am in awe everyday that nothing more can be done for the pain! i've tried mtx and now i'm on humira, but nothing is helping! seriously, the sheer suffering i go thru every minute of everyday and then sleepless nights is just crazy.......

my hands and feet are the worst, but now i'm having issues with my right leg and shoulder

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I feel your pain literally. I have PA in both feet, ankles, knees and now my shoulders. I'm on Enbrel, Mtx and diclofenac twice daily. The only time I have had any relief was when I was on prednisone. Apparently they don't want you taking prednisone for long periods of time. I am on 10mg a day with very good results. I don't care what the side effects at this point. I just need the relief. I do believe that at that low of a dosage it can be taken for a long time. Good luck my friend ! Keep us posted and don't be afraid to bug the Doc.

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Having had psoriasis for 35 years and psoriatic arthrits for 20 i can empathize with you. I find that if I make myself get up and get moving I feel better for the rest of the day. I also went to a hand doctor who devised a splint for me to wear at night when needed. this really helped. Have had two back surgeries, two shoulder surgeries and one hip surgery which has allowed me to stay active. I visit the orthopedic doctor when I have really bad symptoms and go to physical therapy when I can't get my joints to work correctly.

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I don't think anybody realizes how debilitating it is to live in constant pain....Debilitating in both mind and body.
Non-sufferers can empathize and wonder, but nobody can fully grasp how terrible it is...unless you have actually lived with it for a while. Yours sounds very similar to mine...mine started in my big toe, then ankles (had to walk with a cane)...then the hands...then the knees, then the elbows. And the pain was never in the same place...it seemed to float to different areas...it traveled from one joint to another and the tendons or the muscles in between each joint ached...and the pain never...ever stopped.
You get to the point where you just want to scream "ENOUGH....PLEASE....NO MORE PAIN!
Of course you plebe is always met with silence...and more unending pain.
I went through the normal drug course...Sulphasalazine, MTX, gold injections, N Saids...none of them worked...some gave me some pretty awful side affects. Finally I was put on Humira...about a week after my first injection, I woke up and noticed that something was different....I made fists with both my hands...bent my legs....wiggled my feet....something was missing....for the first time in 5 years...NO PAIN!
It was a life altering moment...the sensation of having no pain...a sense of ease washed over me that I can't fully explain...I didn't realize how tired I had become through years of fighting the pain...I just lay there moving my various joints...enjoying every pain free movement.
I have lumps on my knees and elbows...those did not go away, but the Humira stopped the pain and the further degradation of my joints. Enbrel and Humira don't work for everyone...but you really must do everything you can to get your doctor to get you on a Biologic...as soon as possible. They are expensive, I am fortunate in that they are covered on my extended medical and Fair Pharmacare (in Canada). It is different in every country...ask your doctor about it.
Humira has given me the chance to lead a pretty normal life...perhaps it can do the same for you...living with pain was the hardest thing I have ever had to do in my life, I understand what you are going through...you need to do everything in your power to find the drug that works for you....GOOD LUCK.

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Thank you all for your encouragement, its comforting knowing its not all in your head. I did discuss adding a tnf blocker today with the rhuemy, but with my health insurance paying 1500 out of pocket every month is not really an option. decided up to up mtx dose to 19mg and add couple weeks of predisone again and see if that helps out. Every time I go in there he tells me there are lots of options and not to get discouraged, but its hard not to. He made sure to remind me how much worse I would be without the meds! SO I guess for now, just gonna hang in there and hope for the best.

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VT,

Can you take pain meds or an NSAID? I really feel voltaren or dicofenac works well. It can be hard on your gut at times but one or two extended release a day is not too bad if you don't have any conflicting issues that require you to avoid it. I also inject methotrexate equivalent to 8 pills per week. Couldn't do oral and my rheumy does not feel 10 pills are better than 8 pills per week based on a study...idk but that is my two cents. NSAIDs relieve my joint pain better than narcotics usually. But the pain is real that is for sure.

Feel better,
Pam

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Oh yeah. Being in pain all the time keeps your cortisol levels up. This makes you more tired and gets into a viscious cycle that in order to correct requires you to be given as much options for relief as possible. If not you are fighting an uphill battle that does not play fair.

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Yeah I take diclofinac twice daily, honestly I wonder if it does anything at all, but then the days I forget to take its amazing how much worse I feel. I am a carpenter, and I think if it were not for all the daily exercise and physical nature of my job I might be in worse pain. When I am at work is when I feel the best, but I also know the physical stress could be contributing to more pain when i am at home. Its hard to get going in the morning, but once I loosen up staying active does help a lot.

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Heres the deal man.

1. Get with the encourage foundation and get on there program for Enbrel. They will send you medicine to your door once a month or so.
2. Make sure to get the self injector and not the auto push pin
3. Your pain will literally dissolve within the day. 3 days later and your back to normal.

If Encourage doesn't work try Humira. Welcome to the world of pain and psoriasis. I'm 27 and have been on this ride for 20 years.

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You should be able or your Doc should be able to get ahold of the company that makes the drug and see if there is a way they can help you pay for the med the worse they can say is no. Check with your Doc and see if there are any studies for mess you can get into the place doing the study and everything to do with it is paid by them not you. Good luck let us know!

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Hi! I'm Aloma. I can relate too! I have PA and the Prednisone (15mg/pd) plus 6 Methotrexate tablets per week does not really help! I would also like to go on Humira or Enbrel but do not know how to go about it here in South Africa for my Health Insurance to pay for it! As I just came back from Israel after about 3 yrs, I am still without a Health Insurance. I now want to apply for one but do not know which one would be 'friendly' to my situation! Any suggestions from SA sufferers would be appreciated! thanks for this forum and all the comments!

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VT,

Seriously, I'll bet you can get either Enbrel or Humira for next to nothing if your insurance either doesn't cover it or if it costs a lot for you. I have taken both of them and I'd choose Humira over Enbrel because you only have to inject it every other week and because I (and quite a few other people) definitely caught a lot more colds, stomach viruses, etc. while taking Enbrel. Oh, and a strike against Humira is that you have to get a TB test yearly while you're taking it. It apparently makes some people more susceptible to TB so if you live in an area that has a problem with TB that's something to take into account.

for Enbrel assistance: http://www.enbrel.com/pay-for-ENBREL.jspx

for Humira assistance: http://www.humira.com/myhumira/financial-assistance.aspx

These are really GOOD assistance programs. I have good health insurance with no deductible for in network doctors and I have good prescription insurance and Abbott still pays part of my Humira co-pay - I pay less than $100 per year for Humira.

At the moment, it sounds like you're in a pain crisis and could maybe use some narcotic pain relievers even if only for a few weeks. I did that once just 3-4 months before I finally got diagnosed and started methotrexate and it helped a lot. It was like my pain receptors got "reset" for a while and my pain level was way lower after I stopped the narcotics than when I started them. I went to a pain specialist associated with a medical school. She was extremely helpful. Your primary care doctor can also prescribe the pain meds but I know they often don't want to or they don't prescribe a high enough dosage.

Best of luck to you. You're at a low point in the diagnosis and treatment of the disease now - it can get much better.

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guys/gals.... Stelara works differently than both Enbrel and Humira..

Enbrel, Humira, MTX, and all the others stopped working for me as well. I'm in bad shape now P and PA wise... hoping for the best when starting Stelara next week.

I could almost feel the emotion (from others) in this discussion...I know the feeling. Winters are the worst. (pain wise)

have hope, stay strong.

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Thanks for all the advice and suggestions on how to take advantage of drug assistance programs. Honestly, as bad as I feel some days I am not sure I am ready to go on Biologics. I have only been dealing with PA for a little over a year, and thought of having to try the "big guns" when it comes to medical treatment is not only scary but depressing. I think I need to accept that at times I'm gonna really hurt, but I'm lucky in that I have lots of family support. Perhaps having a 1 month old in the house now is creating a new level of stress that is gonna take some time to adjust too, although she is a very good girl. Other then the physical pain, I think I am really struggling with the mental aspect that I am use to moving/carrying thousands of pounds a day at work, contorting my body in unusual positions, and battling the elements, but on a Saturday morning I can hardly squeeze a can opener or twist open a lid on a juice container. I am still not use to the fact that PA has the complete ability to rob strength from your body despite how hard you fight it.

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Dear VT,

Hi, just read your most recent post. I don't think I realized you were taking methotrexate. I personally found the possible side effects from that lots scarier than the biologics but if it's working to keep your joints from swelling then that's good.

I was just going to say to keep an eye on any joints that swell. I ended up with severe damage to my left thumb and wrist (I'm left-handed) before I got on methotrexate. Even after the swelling went away, I was left with much diminished use of them.

I can type but I can't garden any more or the pain and swelling will come back (I think it may be due to mechanical friction in the joints now.)

So just keep an eye on your joints!

Best of luck to you in finding a way to deal with the pain. If you're still having that awful morning stiffness, your disease may be more active that you would like. Looking back, though, I think I took Celexa for a year along with the methotrexate. I think it takes much longer for the methotrexate to have full effect than it does for the biologics. It worked really well for me once it got going, though.

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Hi VT....just read your last post.
Just one last thing to consider with respect to the Biologics.
The damage caused by the PA inflammation is irreversible...if you don't find a drug that works for you....if you don't stop the inflammation...you will end with joints that are deteriorated, deformed, immobile...your hands will lose their gripping power....irreparable damage on all fronts.
I have a big toe that has 20% movement...both of my knees have lumps the size of a golf ball...I have large lumps on my elbows (if I bump an elbow on something it feels like someone stabbed me with a hot knife). All of my deterioration and deformity only took 5 years....and of course I was living in extreme pain 24/7.
A week after I started Humira the pain went away, the swelling in my joints wet away, I was able to bend my ankles for the first time in years...it was a miracle...BUT....the big hard lumps stayed...the Humira stopped the PA in it's tracks, but it couldn't repair the severely damaged joints.
I don't know what your aversion is to the Biologics...potentially they can change you life in a significant way...why would you choose to live in pain if there is a drug out there that could stop the pain and stop the degradation of your joints.
I can say this without hesitation, the good far outweighs the bad.

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Hi, I am a first timer to this support group so be patient :). I am Australian, a Occupational Therapist, my husband is a medical specialist, have been diagnosed with P.A for approx. 6 years, but believe to of had symptoms for over 15 years, thinking symptoms were due to the nature and conditions of my job. Recently I think I have finally achieved (in my mind and physically) the best control of my symptoms/condition. To clarify, I do not have "corrosive" (bone and joint destroying) P.A rather most of my symptoms relate to joint stiffness and pain, muscle tendon pain and stiffness, and generalised aches, pain, swelling, weakness in specific joints e.g fingers and wrists, small muscle/ligaments in the eyes causing eye movement stiffness, jaw pain and stiffness, etc etc etc. When bad I wake up in the morning with the feeling like I have "rust" in all my muscles and joints....I feel like I am a cat stretching out/mobilising everything before getting out of bed!

Medication wise: As recommended by hubby I have always tried to maintain a steady dose of long acting paracetemol (safer for tummy) or ibeprophen (e.g Advil or old fashioned Brufen) for ongoing pain relief twice daily. I have also maintained a high level of fish oil once daily (want take enough capsules to reach the documented recommended range for Arthritis relief). I have tried to avoid corticosteriods (e.g pregnizone) for acute out breaks due to possible long term damaging effects on normal bone replacement. I have tried Sulphasalazine caused tremours, pins and needles, hair loss and eventually a peripheral neuropathy; Arava increased my BP, rash and made me feel sick all the time; MTX...got up to 20mg once/week with Folate 5mg 12 hrs before and 12 hours after (helps absorption) but got constantly nauseated, metalic taste in mouth, constant thrush etc etc etc.

Finally jumped through enough hoops to receive federal gov. funding for Humera. This included documented use of other prerequisite medications, number of large joint involvement, blood test results and screening by a Biologics public hospital clinic. Since Humera is immune suppressing had to be screened for TB, hepatitis, aids, etc. Also had to have a up-to-date chest xray and breast screen.

Humera has been wonderful, appears and is documented to be safer than all the other stuff I have taken particularly MTX. Complete Self injections fortnightly and it took 3 injections (6 wks) to really start to feel benefit. Now only taking injections, fish oil and advil in mornings to help with residual joint pain before warming up!

Down side so far includes a localised skin reaction at injection site which I manage with icing and 1 anti histamine pill before injection and 24 hrs later. Another minor problem is that the Humera requires storage in the fridge making travelling long distances a planning issue but the drug company supply's in Aus a travelling kit with a freezer/ice pack. In Australia our national medicare scheme (you people in US should really support O'Bama on this issue) means I only pay approx $40/2 self injections with $1700 on the package label indicating the real cost with no funding.

From a O.T point of view...learn to pace yourself, maintain some form of exercise (swimming is great), buy a jar opener, take on some stress management strategies and find a good rheumatologist!

P.S spoke to another O.T with PA and plaque psori with no benefit from Humera but great results from Enbrel instead.

Hope my story helps someone? Happy to answer any questions. Regards.

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woke up this morning and realized my hands did not hurt. In fact, there seemed to be a total lack of stiffness and pain everywhere. Could this really be a result of starting predisone? Its been almost 6 months or so since I last tried a round of predisone, but I must say I feel great today. Its refreshing to not feel fatigued and in pain.

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