New to group and have a lot of questions?!?

I don’t even know where to start. I feel like I am not getting the answers I want from my doctor. Can’t change due to insurance and money. I have been on Remicade since April but still having trouble walking. My legs are in a burning type pain all the time and my knees give and I completing everyday task is really hard. I am praying about quitting my job because it is stressful high paced and somewhat physical and I can’t keep up anymore bur without it insurance is gone and that means no treatments. I guess my questions are. Does anyone else feel like it is their connective tissues that bother them and have normal MRI’s? Does anyone work a full time job with small children and still able to come home cook and clean and take care of kids and what’s your secret? Does anyone have trouble walking? Does anyone ever feel like it gets in their lungs? No one around me understands and I am starting to feel like I am letting everyone around me down! I hope all this makes sense.

I have heard of people doing very well. Back to normal? I just cannot believe that. Maybe if you found it super early. My kids are grown but I know raising 3 while undiagnosed I was a mom of mind over matter and full time worker. Now that I have the best treatment I could find, I am still very run down and everything aches, though not excruciating and not terrible as often. Sometimes I am not fatigued, I look forward to the good days. I thought it took a really long time to get results and am on enbrel and celebrex, hope you get better enough to get along. I have really good days sometimes. I hope you will too. It takes a long time for others to get it. I think it gives some some insight into who the caring people are in your circle. Don’t give up on them it’s hard to understand even when you are the patient.

I haven't had any MRIs for this, so I can't help you with that part. I was diagnosed when my second child was 1 yr old. I work part time from home. My younger one is now going to be in school full time next year (he's 6 1/2). I cook, wash, etc. But my husband also does a lot of work around the house, and I only work part time, so I have the opportunity to rest when needed. The summer time is tough, because my kids are home more, so it's harder to find time to rest.

As your control gets better, you will likely find it easier to manage.

I have experienced your same symptoms for three years now. I take Humira/ Cymbalta/ and sulfasalazine. The cymbalta has really helped with stress and pain management. I have stretches of 6 to 8 weeks between ‘flare-ups’. I accept that this is natural progression of the disease and try not to let it limit me. The best thing is to not give in to the overwhelming feelings of despondency. Accept the flare ups and tell yourself and your supporters it WILL pass. Until it does, modify your day and again, accept that it is good. Look for humor in your situation. If you can’t physically bake the cupcakes for your kids’ classes… BUY THEM! No apologies! Good luck.

Where I go, my cane goes with me. :) It helps with keeping me on my feet. I had trouble breathing before being diagnosed with PsA. I went to the pulmonologist and was diagnosed with adult onset asthma. My children are older and have learned to help me with anything and everything without being asked. Ask your kids to help you with age appropriate tasks. Everyone in my household knows that I need the help and they give it. That help didn't happen overnight, but it did eventually happen. I had given up on anyone understanding what was going on with me, then my brother was unfortunately diagnosed with PsA. So I now have someone to talk to. I also plan everything, cooking, cleaning, etc. because I have to take breaks while doing those tasks. I hope this helps and I wish you the best. I know you have heard it before, but it will get better.

First off I am sorry that you had to look for this site, but now that you have found it welcome.

My dr. used ultrasound to view my joints. So I do not know how it works with MRI's although I have had my share of them. If you are feeling tired it's because you are. Listen to your body. This seems to be the best time of year for me. I live in Northern Utah where the winters are cold. So right now the weather is pushing 100 deg. f. which is working for me. I have sever sleep apnea so if I do not get a good night sleep I try to sleep all day. I have to think about breathing or I wouldn't. I work from home now because I can not the things I could do. I am now having problems working from home. I am hoping that I can start Humira soon. I am on 0.8ml Methotrexate (MTX) each week, and many other drugs.

I do hope you find some relief and help!

I was in a position a few years ago where I could hardly walk a few hundred meters.

I am on methotryxate and Humira. I have been through a number of treatment regimes, and I've only been on the Humira for the last 18 months, but I'm able to jog, work a fairly stressful job and live a very normal life. It's been a massive life change for me. The disease was the worst in my late 30's - I could hardly get out of bed some mornings. I'm 42 now and feel 10 years younger.

I have a three year old as well.

There is hope. Don't stop praying. Don't stop looking for a solution that works for you.

Thanks everyone! It is good to hear I am not alone. I think the hardest thing for me right now is my job and not being able to function fully. My coworkers really get punished and have to work hard to take up my slack. They have already asked me to think about going PRN but I only work for insurance purposes. Thanks for the responses! :)

My doctor said Psoriatic Arthritis doesn't always show up on an MRI. See if you can get a new doctor or a referral to a dermatologist. I don't think your doctor knows what they are doing. Treatments like Humira would be free in the states if you lost your insurance, they have a special program for that. I will have to do some digging but, I can find the link for you.

From another group this was posted " the Abbott Patient Assistance Foundation and had 0 out of pocket."

http://www.psoriasis.org/Page.aspx?pid=1328 - for financial assistance with prescriptions

Even if you get free anti tnf's there are many many ongoing expenses. Hang in there until at least January if you can.You are at the point if Remicade was going to work, as a mono therapy you be just STARTING to see results, so take a really thorough inventory of whats going on now and what was going on in April. You might actually be surprised. Remicade takes longer than any of the biologicals to get to a therapeutic level. despite the fact they stack infusions at the beginning. As a rule of thumb multiply the frequency times 4 to get to the point where the meds. So if you take something once a month it take 4 months before it can start to work. Remicade is a beautiful drug in that it can be modified greatly in frequency and amount.

Have you talked to your doc in the meantime or are you on the "try this and check with me in 6 mos routine?" There isn't a thing blood tests and MRI will do to help you. You have a dx so ALL that can happen is the Doc can start to figure out which one of several THOUSAND possible combinations of drugs will help you. YOUR reportin and communication is all that can help. make friends with his nurse. They can make things happen. Be a squeaky wheel but not a complainer/whiner. FWIW well 90% get significant relief IN TIME

It isn't all drugs. Much of it is desire, tenacity bull headedness, exercise, PT, OT, and need. Those are the really HARD things.

Its been a bust day for me so missed some posts earlier. It is unacceptable to solicit personal contact. (not to say you can't make friends or message etc) Believe it or not we have from time time spammers trying to sell diets, vitamins devices etc etc. Its impossible to know whats real concern and whats not so we just don't do it.

Mimi,

I think you should re-read my response. My advice is based solely on MY experience :-). Any time you are putting anything into your body, food, drink, medicine, etc. you should ALWAYS be careful.

Your comment : "There are also people who give advice with no research to back it up" I think is and was unnecessary. If my experience can benefit the OP then why not. You yourself agreed with my food/dietary choices at the end of your email. We should all try and stay positive here. Lord knows this disease gives us many opportunities to be negative.

Now, in my experience most - 90% of people are unable to follow a strict diet regime like I am suggesting. My father has RA and he is one who cannot fathom a major dietary change, sadly he is on a slew of medications. For this diet to help, you have to make significant lifestyle changes and stick with them for months to years. I saw very little improvement the first 2-3 months. Then things changed, the flares were fewer and the pain less. I am in no way, shape, or form "cured" yet. I am however 70-80% better. I am SO happy I said NO to the drugs which I felt came with the worst potential of side effects!

So again if the OP or anyone else would like to contact me I'd love to try and help!!

Be nice to others mimib :-)

Bryan

The potential side effects to ENBREL http://www.enbrel.com/possible-side-effects.jspx .

mimiB said:

Hi Steffani ! Sorry to have to meet this way, but glad you found the group ! There are lots of very knowledgeable people here.

There are also people who give advice with no research to back it up, so be careful ! Make sure you learn as much as possible from your doctor and reputable sources that can back up their claims with peer reviewed studies.

As Dot said, this disease is confusing, even for the sufferer. It isn't easily understood because our experiences are all unique.

Daddyschmitty, I am not aware on any credible evidence that a specific diet has been implicated in either worsening or improving to PsA symptoms. Can you share links to peer reviewed studies within the last 5 years ?

There may be small risks of certain types of cancers with TNF inhibitors, however, people with PsA are at higher risk of cancer and other comorbidities, such as high cholesterol and lymphoma. Risks do not appear to outweigh the benefits of treating the disease.

I choose to accept medical treatment and eat as many whole, unprocessed foods as possible, not because I think it will cure me, but because it just makes good nutritional sense.

Hi Steffani, I hear you. My connective tissues seem to be just as involved as my joints...Including the fact that my neck muscles and tentons have tightened up so badly, it looks like I have wings, and can't turn my head anymore. I have been on a wide variety of meds, mostly to little avail. My Rheumy is decreasing my Prednisone, which has been a life saver for me for the past two years, but it has terrible side effects after such long-term use, so has increased my pain meds again. That, in turn, makes me sleepy and loopy. I am a single mom od a (wonderful) 13 y.o. boy, who is very helpful and understanding. I am lucky.

I use a cane or wheelchair, when necessary. It sounds as if your support system doesn't have a great understanding of this disease...I found a wonderful video online, after being dignosed, which was so helpful to both myself, and the people who love me. It was basic, from the patient's mouth, and easy to follow. I will try to find it and post it for you. It really REALLY helps, if the people around you understand this process, as it is not commonly known. In the meantime, please try to cut yourself a break...I know that feeling of letting everyone down, but I got over it, after learning that if I don't take good care of myself, it is impossible for me to take good care of anyone else. I'll try to post the video, as soon as I find it. Hang in there! Kris

I do have to say any exercise is going to benefit! I was in so much pain and I started slowly and for sure exercise has made it so much better. It is just very hard to start doing and you never want to push it too far. If you feel pain then ease off it for a day and try again. A lot of people enjoy Yoga and Aquatic Aerobics for PsA. :-)

I wasn't offended I just felt the comment unnecessary.

Mimi, please try and relax. I believe stress, paranoia and negativity make our disease worse.

I have nothing for sale :-). I just really want to help people with PsA.

I DO believe in trying everything else before jumping into pharmaceuticals. What if I started ENBREL four months ago as recommended by my doc? What if after starting this drug I developed a nasty fungal infection in my lungs or worse? Drugs should not be something we accept as correct. No one knows what causes our disease. That means all we do with these drugs is play the guessing game. The doctors "try it to see if it will work". What do these drugs need to pass the American College of Rheumatology standards? 65% positive results? Ummmm that's not encouraging me. This means your doctor may prescribe a drug that doesn't work for you and at the same time causes cancer or opportunistic infection.

What I am doing is working so far and I am soooo happy.

Have you done any reading on "leaky gut" ? Not saying I agree completely with it but you may want to try and remove dairy from your diet mimi. See if it helps. Obviously we didn't evolve drinking milk. If memory serves me humans began to drink cow's milk less than 10,000 years ago and certainly not in the quantities we do now. We evolved NOT drinking milk/dairy products over millions of years.

We weren't meant to sit inside buildings with fluorescent lights and type all day either - just saying. What we do to our bodies without second thought is very scary.

B


mimiB said:

Brian,

I am sorry I offended you. I was not pointing you out specifically, and I am not being negative.I was stating my opinion, just like you. We don't have to agree. In fact, I do not eat the same way you do, in that I do eat dairy, lots of it. Your email address made me wonder if you were selling something. Are you ?

The paranoia comment stemmed from the "are you selling anything" comment. Maybe you don't even see it as paranoia. Now that's kinda scary :-). Hopefully you won't become paranoid about being paranoid - kidding of course.

Think it will be hard to find evidence based diet research as its really not done. No profit to be made.

Here's a little poke with my diet stick saying "give it a try mimi". It can't hurt you so why not?

Fun talking , good luck and wishing you many pain and flare up free days.

B


mimiB said:

I think a lot of us have read about "leaky gut", but I am interested in evidence based treatment.

No one is negative or paranoid or stressed, as far as I know. We are all entitled to our opinions. I am glad that what you are doing is working for you. I would just encourage everyone else to do what works for them and make sure any advice you take can be backed by current research. Lamb is the research guru around here :)

Hi steffani, I hear and feel your pain. I too have a terrible time walking and working and doing simple things I once enjoyed. My achilles in both heels make walking and working pure torcher but I also have no other choice life must go on and hopefully the right treatment will come soon for both of us, hang in there!!!! Beth



4hooves4me said:

Hi Steffani, I hear you. My connective tissues seem to be just as involved as my joints...Including the fact that my neck muscles and tentons have tightened up so badly, it looks like I have wings, and can't turn my head anymore. I have been on a wide variety of meds, mostly to little avail. My Rheumy is decreasing my Prednisone, which has been a life saver for me for the past two years, but it has terrible side effects after such long-term use, so has increased my pain meds again. That, in turn, makes me sleepy and loopy. I am a single mom od a (wonderful) 13 y.o. boy, who is very helpful and understanding. I am lucky.

I use a cane or wheelchair, when necessary. It sounds as if your support system doesn't have a great understanding of this disease...I found a wonderful video online, after being dignosed, which was so helpful to both myself, and the people who love me. It was basic, from the patient's mouth, and easy to follow. I will try to find it and post it for you. It really REALLY helps, if the people around you understand this process, as it is not commonly known. In the meantime, please try to cut yourself a break...I know that feeling of letting everyone down, but I got over it, after learning that if I don't take good care of myself, it is impossible for me to take good care of anyone else. I'll try to post the video, as soon as I find it. Hang in there! Kris

Hi Stephani
I’m a mom of 3 young children and I also work in a high stress at times physical (lots of standing and walking). My pain levels have been almost intolerable. Walking almost impossible. There are days where working sucks the life out of me. There is little energy left to cook clean or be a mom. I’m pretty new to the PsA diagnosis. I’ve been on sulfasalizine for the past 6 months. I will be switching to mtx the weekend. My hope is it will help and I can regain my life. But I’m learning one day at a time. And trying not mourn the life I had. But hope I can enjoy life again soon

All of this makes perfect sense. Everyday tasks are a chore. Sometimes during a flare up, just getting out of bed is a chore. It will make you feel useless. You will be depressed and even sometimes think about suicide. Dont give up. You will get a lot of support here. We are all going through similar situations. No one understands your day to day struggles except you, your family and the people on this website who have the same issues. I will pray for you. When I first got diagnosed, I was missing one to two days of work a week (and I am not one to miss work). Can you suggest Humira to your Rheumatologist? I am about to start taking it. My doctor told me that 90% of his patients with Psoriatic Arthritis go into remission on Humira. Remission sounds awesome. You can look into diet as well. I found out that I am allergic to gluten. When I do not eat Gluten free, I REALLY feel it. God Bless You! Educate yourself! I believe Psoriatic Arthritis is so rare that some doctors really dont understand it. I went to the foot doctor today. I am only his 4th patient with it. He is putting me on Lyrica. He thinks it will help the pain and inflammation in my feet and ankles. I guess time will tell.

Tehawk, be sure and check out the lyrica with your Rheumy... Its an unusual drug to use with Humira. Its a drug for nerve stuff not inflsmation. Its been known to cause arthalgia (non inflammatory joint pain) when used with Humira. I'm not saying there isn't a reason to be using a fibromyalgia drug, but not usually from a podiatrist....... Inflammation is your rheumys job.

This is not an easy disease for us to understand until research is done, and even then, some of us have some symptoms that others don't have. Yet, I still do not excuse a dr. that cannot diagnose it at least as an autoimmune disease.

Living with PsA for a while gives us the right to talk about our daily struggle. Never hesitate to ask any of us.