How is Everybody Doing?

Hope everybody is ok or at least as well as they can be. My life sure sucks nowadays. I have a lot of osteoarthritis as well as psoriatic arthritis. I used to be as strong as a bull from all the years of farm work and 23 years of metal work now I am lucky to open a sealed jar. Is it just me or does anyone feel that there has not been much progress with the new arthritis drugs. I am currently on Humira and methotrexate which has made my psoriasis worse but has improved my joint pain somewhat. It was Enbrel and Arava before that for about 4 years which the Arava seemed to make my hair fallout. Just wanted to blow off some steam

I am not so great this year either. But I have had so really great years in the past and expect to have some in the future! This year I am taking it slow, getting plenty of rest and keeping the holidays low key. There are some new drugs it trials. I have great hope for them. Right now I am starting Remicade. I have been on Humira, simponi and enbrel in the past. After about a year they no longer work for me and Remicade is the next for me to try. Keep your fingers crossed we will all find one that works!

Oh my, sorry you are having such a difficult time. I have good days and bad. My infusions seem to help me a lot. Plus I have been learning not to try to do too much. It gets hard to do at this time of year. I just want to do so much. But it will only bring on a flare. So I do a little bit here and there. It works out a lot better that way. Hope you are feeling better soon.

I'm eagerly awaiting my next Remicade injection and hope it gives me some relief. My pain and exhaustion are taking their toll, but I'm trying to stay as positive as I can. We have Advent activities keeping us busy, and it's nice to have some slow low key days this month.

I totally hear you. I've had down years and up years. Sometimes the meds work great and I'm energetic and doing all kinds of things. Sometimes I'm hobbling to get to the bathroom and back like a 100 yr old person (actually, I'll bet there are 100 yr olds more active than me sometimes lol). Right now I've run through all the biologics, and I'm waiting for the new meds coming on the market soon. It's been a very bad past 6 months for me. I developed soft tissue inflamation for the first time, and it is severe full body enthesitis. The Arava is only keeping it somewhat in check. After 30 yrs a whole new set of problems (before it was just joints and occassional plantar fascitis) is very demoralizing.

BTW, I grew up on a farm and if you did farmwork I understand how being strong and able is such a core part of your identity. Coming to terms with the "new normal" is really tough. Hang in there and thanks for venting. Sometimes we just need to let off steam.

Thanks to all of you for the encouragement. I think it’s mostly the meds that are sapping my energy. It’s just hard being in my 40’s and feeling like my age is really like I’m in my 80’s or older. This time of the year is also a demanding time. Knowing that the want to see family is over ridden by the fact that I just don’t feel like visiting.
Thanks again.

It’s like reading my own story above ! I am always exhausted, still have pain and the rheum says “we are getting there”. No we are not!! I have surgery on Dec 20. for shoulder debridement and possible bicep tendon reattachment. Have been trying to get rid of plantar fasciitis for 6 months now( walker boot x2 month, cast x1 month, 8 weeks of pt) and was almost scheduled for surgery when they found posterior tendon tendinitis , so no surgery . Am waiting for a custom 1200.00 custom brace to wear x6 months! So in spite of methotrexate, sulfasalazine, Celebrex and enbrel, I AM NOT seeing the same improvement that Dr Big Shot is! Extremely frustrating , feel like the Grinch right about now…want Christmas and everyone to go away…I DON’T FEEL GOOD!!

Thanks Babs. Part of my problem is that I am allergic to Celebrex and suplha medicines went into anaphylaxis shock after being put on Celebrex. So I am limited on most of the NSAIDs meds which would help with my joint pain and yes I know the grinch feeling.

Amen. I am Mrs. Grinch this year!

Handiman.... My story and yours are very simular. I grew up across the Lake in the Adirondacks. I am an avid outdoorsman and have been for all my life. I vomited blood when I took Celebrex, but I had been on high amounts of NSAIDs for 12 years after severe auto accident that resulted in multiple Fx's in my right leg, and eventually a fused right ankle. This year I was taken off enbrel because of infection. When I was put on Sulfasalazine, to make up for going off enbrel, I began with a rash on my leg. I went to my doctor, rheumatologist and then the ER dr. and none of them thought it was a reaction to the meds. In fact the ER dr. put me on a sulfa anti-biotic for 10 days. All of this resulted in me not being able to do my job in my own company. I became depressed and began having anxiety attacks. In spite of all that has happened I feel quilty because I do not feel I will be able to provide for my family. I am 45 and planned on working until I was 67 and collecting (hopefully) the SS that I have paid my whole life. I feel very lucky to have my family to help me through this, and my family on this site. I think the fact that I can't do what I used, and that I will never again be able to, is very hard to deal with, especially for men ( no offense to any women).I took 2 days to put up a few strings of lights outside. I spent 2 hours 2 weeks ago lying flat on my back in the middle of the woods, I was supposed to be deer hunting! I really do wish you the best, keep your head up and lean on those closest to you.

Handiman38 said:

Thanks Babs. Part of my problem is that I am allergic to Celebrex and suplha medicines went into anaphylaxis shock after being put on Celebrex. So I am limited on most of the NSAIDs meds which would help with my joint pain and yes I know the grinch feeling.

Well, I hope no one gets mad at me for this reply! I am so filled with compassion for all of you...i have gone a different route with this disease...there is just something in me that always wants to avoid drugs if possible...and I will until I have to go another way. I do not judge ANYONE for using medication...this is just my journey. I'm 48, been dealing with PA (pretty severe) for over 5 years. Right now I am working on calming my immune system down, I have made some mistakes which sent me backwards several times. Even natural supplements can rev up our immune systems even more & make symptoms worse. I'm learning & studying every day...: ) I just love it, should have been a Naturopath or something I don't know! : ) I have tried Vegan diets...made things worse. Now am strict Paleo & noticing benefits. Lots and lots of veggies & veggie smoothies...keeping body alkaline as much as possible. Exercising daily but over exercising. Lots of calm, deep breathing. Enemas... : ) Most people don't even know I have this disease because of my energy, but of course my family does, and if one looked at my hands they definitely see the problem! I have permanant joint damage on several fingers. Scares me some days but drugs scare me more. Most people have no understanding of what we go through, even our families don't really know. On bad days people ask how I'm doing...they want to hear that I'm better, I usually put on a brave face and say ok...but some days I really wish someone really understood...I know all of you do...: ) Grateful for days that are better than others! I wish the very best for all of you, and you are in my prayers! Cathy

No reason to get mad at you. Every person makes their own choices in how to handle their bodies. If this is what is working for you, then I am glad to hear it.

Well, I for one am here to listen to what people have tried, what has and has not worked for them. No one should judge you on how you have decided to deal with the disease. We are supposed to be here to support one another, that's all.

its ok...I think it was a kind of feisty forum on another site! : ) Someday i may have to try a drug...helps to hear what you've all tried & had success with, although I know it can differ from person to person. I have a friend who went in to complete remission with oregano oil...did nothing for me.

Well, I feel like poo...I just turned 43 last week and feel much older. I hurt everywhere. I have had psoriasis since I was a little girl and for 20 years I have known I had PSA, the doctors all blew me off because of my age. 2 years ago I had an awful flare and I haven't had a break since. I cry alot, not only from physical pain, but the emotional pain also of not being able to do the things I once did. We all know if you overdo it, you pay for it....that being said, you can't just stop either, so I try to go about my day best I can. I am hoping to be approved for my disability as my back and hips are just shot out. I can't drive very far anymore. I can't walk or stand for long. I don't have alot of friends but my mom and boyfriend do what they can to help me. That really bugs me, I should be taking care of her.....I know I probably complain alot, it's just so damned frustrating. I am on 15 mg of MTX a week, 3000 mg of Sulfasalizine,Ultram, Flexiril,Gabapentin, Celexa and 10/650 Lortab. My old doctor gave me enough pain meds to take every 8 hours if needed and the new one thinks 1 every 12 hours should suffice. I say he should try my hips on for size. I am one of those who will fall through the cracks I fear as I have been out of work for 2 years now so no insurance....The meds are not working best I can tell, but my rhuemy swears I would feel even worse without the MTX..hard to imagine!

I am glad you jumped on to let off some steam :slight_smile: We all do it.
I think we all feel in a bit of a rut at different times, sometimes for a bit longer than usual when our drug combo is taking its time. Just remember, if the first few combos don’t work, the next one may be the jackpot.

I am not having too good a time at the moment ...well it is winter. I also have osteo (pins and plates in leg & hip don't help) but I do consider myself quite lucky because I know this is a flare up and although it is wearing me (and prob those around me) down I feel at least we have some light at the end of the tunnel albeit in the form of injections/meds, I (we) get part time relief so thats a bonus. I wouldn't cope as well if I lived in a constant flare up, no sir.

In any case I do hope you get some relief soon my friend as it makes life more bearable for sure and if not just vent on here, as this helps keep me sane ....good luck to you

Thank you for your kind words. It helps knowing others understand and realize what it’s like walking in these shoes. I truly wish you and your family a Merry Christmas and a great New Year as well as everyone else on this group.

Thank you Brett, and the same to you and yours ...with bells on lol

Next year is not far away and I am hoping for a better year now that I have started on Enbrel. A screwdriver in the kitchen helps me lever the side of the jar lid to let some air in and then it is easy to open. It it is still difficult sit the jar upside down in hot water and that might help.

I so often wonder how bad can this PsA get and how am I going to cope. I keep on telling my Rhuemy I can hardly walk and I feel like I need a wheel chair and he keeps on telling me it won't come to that. I know I need one now and I keep on putting it off in hope that a change in my meds will make a big difference.

Hang in there as tommorrow may be a better day for you.