Deterioration and feel like a prisoner

Hi there I havent been on here for a while because I have had alot of problems, firstly when my methotrexate was put up to 12.5mg I came out in a rash and had blisters on my hands in between my fingers. I had to see my GP urgently and he stopped the metho immediately and took bloods and sent me to my Rheumatologist. The disease itslf had been getting worse, there was no improvement on metho. When I saw my Rheumatologist he just said that we will try something else, now I am on Avara. I take 20mg a day and hoping and praying that I will stop being in so much pain, he diagnosed that I have plantar fascitis in both my feet and also examined my very painful neck and said that the disease was probably in there too, so now I have it in my hands, feet, back, chest, neck but just about everywhere hurts, I walk like a freak because it just feels like things are ripping in my feet. My Butrans patch is up to 10mcg, and I take Amyitryptiline 50mg at night and painkillers throughout the day which give me a wooly feeling in my head, I have had to check this that Im trying to type about ten times to see if it makes sense (aplogies if it doesnt) Have any of you been on Avara and what do you think of it?

Sorry you feel so bad, and are having so much pain. I’ve not been on Avara so can’t help you there just want to send you a hug x

I was on MTX for 6 months, and it did nothing for me. I was switched to Arava almost 4 months ago, 20mg/day. After 2 months of it, we cut back. The medication was working fantastic! No more naps most days, and the only pain was osteo. Even my tendon inflammation went down. We cut back to every other day because I was having problems with diarrhea. . . . Like losing an hour plus most days going back and forth to the bathroom. Plus my hair is thinning, with some small bald spots.

Here is the thing, my pain level and inflammation have come back a good bit, but the stomach upset is much less. I'm willing to keep trying to balance out side effects, because it just worked so well for me at full dose, but clearly that level of stomach upset was not acceptable.

Praying for you! I hope you will get relief soon! Methotexate isn't working for me either. I truly hope Avara works for you soon!!!

Hi and thanks to all of you, its interesting to hear what you have got to say and also knowing others are going through the same thing is comforting. I havent had a stomach upset yet but only started on 20mg on Friday have been on 10mg to start off slowly. Do you all have pain in other places as well as where you have been diagnosed with PSA. I have it in hands, feet, chest neck, and back but I hurt all over, is that because of referred pain do you think? Lots of love and thanks to you all xxx

I'm with Louise... I have no experience with Avara but plenty with pain. It's tough to separate ourselves from the pain but in here you have shoulders that you can lean on and cry on while your doctors work on coming up with the right combo.

Hang in there!

It actually took a week or two to start having stomach upsets, and another few weeks to build up to daily issues.

PsA is a systemic disease, so while one or two joints may have been the ones that brought you to the doctor, it can involve MANY joints. And tendons. So while I initially started with my hands, I've gone through way more than that now, including ankles, shoulders, hips, elbows, feet, etc etc.

lynbo said:

Hi and thanks to all of you, its interesting to hear what you have got to say and also knowing others are going through the same thing is comforting. I havent had a stomach upset yet but only started on 20mg on Friday have been on 10mg to start off slowly. Do you all have pain in other places as well as where you have been diagnosed with PSA. I have it in hands, feet, chest neck, and back but I hurt all over, is that because of referred pain do you think? Lots of love and thanks to you all xxx

Gentle hugs!

No experience with Arava here either. I'm on Remicade, as my PsA is particularly aggressive and I have it in just about every joint.

One of the most difficult things to deal with with this disease is the feeling of isolation as we need to limit our activities, our outings, and therefore our interactions with others. I've found it helpful to surrender to my limitations and make the best out of them. If I can't get out to see people, I invite an understanding friend or two over for a potluck. I provide beverages and chips. One friend of mine who is chronically ill once hosted a get-together at her house and made nametags for everyone - hers said, "The Hostess with the Leastest."

Not on Avara but that is the next step. Could you also have fibromyalgia? That would explain the all over pain or it could be a side effect of the meds. Do you have inserts for your shoes to cushion your feet? That could help as well as doing some foot stretching and excercises. I have plantar fascitis in both feet and when it got to the worse level when I though I would have to crawl because walking was not an option, I called my rheumy and got an evergency couse of steroids, I felt the best I had in years butt eventually it started to come back. Hang in there!

Im on the Methotrextate and Diclofenac.. its not working for me, and my GP is pushing antidepressants. I dont feel "depressed' in the classical sense but BOY OH BOY I get the "feel like a prisoner" statement!!!

Believe it or not, I've been off the diclofenac since I started taking Arava, after MTX didn't work for me. I did add in a turmeric supplement, and that was how I weaned myself off the NSAID. Since then, I've had to take it for short stretches only. I refuse to go back on it for just the osteo-arthritis in my wrists.

Never quit - I say that with absolute love! I have no experience with Arava but plenty experience with pain. fatigue, depression... I have pain in most areas of my body. Among many natural things I do to self manage, I just wanted to share 2 things that help me personally that you may want to try. I only do natural therapies for myself now with occasional over-the-counter painkillers - after severe reactions to meds - but that's a personal choice.
1. Meditation - going deep within to find a silent place - is very beneficial to manage chronic pain and associated disorders, like fatigue, depression, anger, anxiety, frustration etc.
2. Positive thinking - keep a close vigil on my thoughts to check and change any negative thoughts into positive ones (this can of course be very challenging but if I don't check this regularly - especially during a flare - then the downward spirals can wipe me out for days. Determination helps me here.

I'm sending you lots of love and light for ease of stress, reminding you that you are a powerful soul and supporting your journey... you are definitely not alone :)

I had an ah ha this holiday season. my only hope for my 21 year old daughter is that she adapts to her condition and owns it. I have been trying my best to fix things for her…make life a little easier. I have to let go and let her deal with the psa in her own way and be there to encourage and rub her back. all you out there need a miracle. I am on my knees praying for that miracle.

Hi there and thank you to all who have replied, It is lovely to hear from you and to receive lovely replies. I try to keep positive and think that today the PSA is not going to beat me, I want to beat IT but then I have a period of complete exhaustion and sit down for a rest, then after when I go to get up and cannot do it first go, it takes several attempts to get up and I then walk around like a little old lady for an hour or so. Stoney you and I sound quite similar how long have you had the disease for? You sound so positive I really admire that! Im hoping that we all can achieve that positivity and have more good days than bad. Thanks againx

I was diagnosed 5 years ago, and was caught fairly early, so I don't have a lot of permanent damage. It makes it easier to keep active most of the time. I've had just a touch of psoriasis since I was a kid, but never had to do anything about it. Still don't unless my knees get really bad.

my arthritis is in all the areas you have mentioned and more. my feet/ankles/knees are the worst. I have been on almost every arthritis med and have had some sort of reaction. The best treatment for me has been Remacaid, I take 500 mg by I.V. therapy every 6-8 weeks, it really works for me, I do go through bouts of problems here and there, re: fatigue, so tired and sleepy afterwards. But for the most part has helped me have a better quality of life, sometimes I flare everywhere regardless and those times are so trying and difficult, that is when my Doc puts me on prednisone for awhile-it really helps me sometimes I say can i just stay on these? But you know they lead to obesity which leads to other diseases, so we try not to keep me on them for long just enough to give me a better quality of life. I have a wheel chair for the hard times and a scooter, as my feet/ankles are a mess (ANkle fusion is in my near future then a total knee when that is healed both on the same leg) I'm a 'limper' too at times lol but you can't help that so don't beat yourself up over walking like a 'freak' you are in pain and I understand that statement so much. My ankle is caved into the floor and it is throwing off my entire system, so I feel your pain! I hope they find the right combinations of meds that will work for you and help you feel better. I also know what it is like to feel like a prisoner, I push myelf as I have always been an acitve person and this stupid disease has slowed me down so much and sometimes takes away my spirit, it's easy to feel depressed at times and it's a struggle to focus on 'happy things' when your hurting so much, I still do though, I can't let this stupid disease get the best of me, as hard as that is sometimes. I am now on disability at 50 yrs old :( I flare at the drop of a hat sometimes, the weather is a factor, my worst times are oct-dec then I seem to get a break, those months are our hurricane season times and it really kills me every year. Anyway I hope they find something for you! ask about the Remacaid, for me, it was a wonder drug! (of course we'll always have flare ups bad and horrible) I also know exactly about doing things even in pain and getting so tired, relaxing and when you go to get up...forget it! I can hardly use my legs sometimes and I cry or yell out when I first get up after being on my legs/feet for awhile, it's the after affects that are so painful too. I have had arthritis for 26 yrs now some good days some bad and some just plain evil. so I focus on the good ones and be thankful. i was asked recently if I have been diagnosed with MS, my legs feel so weak sometimes due to all of my problems I feel like I might fall, sometimes my knee just 'gives' i ahven't fallen yet but this is something new I'm facing.