Let's all welcome, Mary J -- she has some questions about PA and *disability

[MikeK]

Hi everyone,

Mary J introduced herself to us in Kimbercat's "A question for those with pa who have taken pred" thread. I figured that she would get a better response if her introduction to us was in a separate thread. Here's a copy of her post:I am on pred 10mg everyday along with remicade. I was wondering if anyone else on this combo my rheumy told me to avoid anyone who is sick because no immune sysytem. I still have back pain with frequent muscle spasms in ribs and mid back. I refuse most pain meds because I have a 6yo. Can't work as a nurse anymore so no income feel like I'm going to loose it some days but I manage. Has anyone gotten social security disability because of their pa any responses would be helpfulSource: http://www.psoriasis.org/forum/showthread.php?p=259623#post259623.

Thanks, everyone!

Mike

[seedoubleyou]

Hi Mary J: I'm not on disability (although I've been sorely tempted lately) so can't address that issue, specifically, but just wanted to say, "WELCOME!!" I'm a nursing student currently on hiatus due to a knee injury last January which required immediate surgery. Subsequently, I was forced to withdraw from nursing school. :( I'm just now coming to terms with the fact that I probably will not be able to go back -- I'm sure I don't have to tell YOU how murderous the profession is on the knees, back, etc.

Again, glad you're here!! :)

[JodyGK]

Hi Mary J – I'm by no means an expert on disability, but I can tell you my limited experience with it and hopefully it'll be of some help to you.

First, know it's going to be a long process. It takes at least four months, often much longer, after you submit your application to get a ruling on whether you're approved or denied. The vast majority of applicants are denied the first time, so be prepared for having to appeal the decision at least once. I know people who struggled through the system for up to three years and multiple denials before they were finally approved.

The first step is to ask your doctors, especially your rheumatologist, if they will support your application for disability. It's not a requirement, but without their support it's almost impossible to get the SSA to see that you are disabled if your doctor doesn't think you are. SSA will obtain all your medical records from your doctors and have them respond to questions.

Also be aware that SSA bases disability on whether they think you're able to work at ANY job, not just the job you were doing before you had to stop working. Keep that in mind as you fill out the paperwork.

I tried getting an attorney to take my case to increase my chances of being approved the first go-round. No attorney would take my case, though. They all said I had to have not been working for at least 12 months before they'd talk to me. But that "requirement" didn't appear on the SSA website, so I went it alone, figuring I had nothing to lose besides the time it takes to fill all the info out. Some people will apply on their own and then try to find an attorney after they're denied the first time. By the way, attorney representation is regulated by law, and they don't charge anything to represent you unless and until they win your case for you. Then the fees are also regulated by a percentage of what amount you're approved for.

No matter how disabled you feel, your chances of being approved are completely arbitrary. I heard that in some states it's easier than others (and I don't know which are the easier ones). It depends on who's looking at your case. I got very lucky and got approved my first try, but I know people who are in worse pain and have worse joint damage and are still struggling to get approved.

I applied online at the SSA website. It took hours to fill out the application as it's very long and they ask difficult questions. It helped that I had the contact information for my doctors and tests and my prescription information handy while I was doing it. I also had my husband sit with me while filling out the description on how PA has affected my life. He remembered a lot of things that I had completely forgotten about, about all the things he has to do for me or at least help me do. I highly recommend having a loved one help you with that portion of the application.

Sorry for this being so long. I hope I haven't been too discouraging. Let us know if you have any other questions.

Jody

[FlakeyMatt]

Welcome to the boards!


Want to start buying saying this is a great place to learn, share and even vent if you have to! One of the best thing about it is so many of us KNOW EXACTLY what you are going thru.

I do not have disability experience either BUT perhaps I can alleviate your concerns about infection and colds while taking biologics. I have NOT taken remicade but have taken Enbrel and prednisone at the same time. (Been on Enbrel for over three years now) While Remicade and Enbrel are not identical they are similar in how they block specific proteins in the immune system to protect inflammation. Because these medications target specific immune responses they are less likely to cause problems in terms of a weekened immune system vs medications like cyclosporine and methatrexate.

While I did have a sinus infection twice last year it was NOT necessarily caused by the medication. In my opininion, (and I do stress that is my opinion but also shared by many medical professionals I have encountered), the biologics have a fairly safe track record. Patients who do incur recurring problems on them in terms of cold/infection have conditions that predispose them to such issues to begin. Of course, that is a generalization but that as I said that at least has been my experience.

I hope this helps and please feel free to ask any questions you may have.


Welcome to the Family. FlakeyMatt

[ouchyk]

Hi Mary K,

Welcome. sorry to hear your not doing so well.

Jody has pretty well described the disablitity process to you so I won't re-hash but will tell you that I am in total agreement with getting your rheumatologist behind you 100%. This is key. And sometimes even if they are behind you someone with a rubber stamp comes along and says " no " but there is an appeal that one can go thru.

As far as prednisone the " wonder drug " you probably know the side effects can have the potential to be horrendous. It does lower you immunity big time, more so than a biologic. The list from the pharmacy that I get of what to avoid & possible side effects is 3 pages long and the one for humira 1 page. The bio's are very targeted but put them with prednisone and watch out for any incoming germs...

I prefer cortisone injections into the offending area(s) for relief. It doesn't have the same systemic reactions. I don't know if this is a possiblity for you as some areas cannot be shot ie; achilles tendons for fear of possible rupture, etc etc. And some doctors will only let you have so many per year.

Recently, my daughter was ill with what they thought at first was e-coli, being on a bio and prednisone myself my pcp did not want me to go to see her in the hospital, so I called my rhuemy...I figured I would keep calling till someone said yes you can go.. :p I went to see her with some heavy precautions ie; gown, mask & gloves frequent handwashing (I wanted to drink the antibiotic hand soap) I also had to wait a few days so her IV antibiotics had a chance to knock whatever they thought she had back. So I'm sure that there are precautions that nurses take for infectious patients....

There are nurses on the boards who are on a biologic who work still, not sure who has PA. And I don't know that any of them are on prednisone but do know of one who was on MTX while on Enbrel ( she didn't have PA ).

That all said, Cat's description of what a nurse has to do and go thru on a daily basis and knowing other nurses from the boards I know that this can be very difficult if not impossible with PA. A lot of folks here can relate to pa and the pain it causes, even while being treated.

I know you said you don't want pain medication so if not contraindicated you might want to try a nsaid instead of prednisone ( ? ) or I personally find that darvocet is a bit helpful without making me goofy, or goofier I should say lol.

I do hope that you feel better and please communicate what you've told us here with your doctor.

Hang in there Mary,
Karen

[RichJ]

hi mary j,
sorry i can't help much but welcome to the p family and you have met some of the wonderful people on here and will find alot of great info. welcome and nice to met you

have a good night all

richard

[Stillworking]

Hi and welcome. This is the 4th time that I'll be trying to respond and my one finger keeps hitting the wrong key and erasing. I'm one of the nurses with P and PA. I'm on Remicade at 7mg/kg every 6 weeks to slow the progression. They all have a chuckle at work because the infection control facilitator has no immune system. So far so good. Be glad to answer any questions I can. Good luck

[mary j]

thanks for all the info. I filled out the ssd form online hubby helped and like the earlier post there were a lot of things I didn't realize I don't do anymore my 14yo son helps sooo much its not funny. had exam with social security dr couple of days ago and was in tears from the pain had to take several pain pills that day. rheumy increased prednisone feeling little better today my main complaint is the pain in my back is unbearable so can't stand sit or bend for any length of time anymore. I was told by rheumy to avoid crowds and not to go around anyone who was ill or kids who were getting immunizations. sorry to be a whiner but feel like you guys are the only ones who can relate thanks again for all the support will keep you updated

[mary j]

sorry forgot i am an lpn so more hands on than most was working in nursing home and couldn't do pill pass without crying in pain changed to office job 4 hours a day 4 days a week mostly working front desk and was still unable to work (funny thing dr was pain management ) dr said I should be a patient instead of employee. she looked at mri and said she didn't know how I was able to move at all. Why would social security dr ask if rheumy knew what was in mri he asked me three times during my exam?

[Jillian1507]

Hi Mary J -

Sorry that I'm not much help but I wanted to welcome you to our wonderful family! It's unfortunate that we all have to meet via psoriasis, but everyone here is so awesome and helpful!

[mary j]

just an update found out today was denied for disability. Having major issues with depression so get on here and vent. Yesterday was horrible had to take so many pain pills my mom had to tke care of my kids. I feel useless my weight is up (prednisone no activity) why is this so hard? I am scared that my next IV of remicade will be worse reaction last time pretty scarey. Been thinking maybe I need anti-depressant. My husband went back to work this week so home alone now good thing he will get a paycheck bad thing I have to depend on my 70 year old mom. This board is only place I know people understand anyone have any advice

[Kimbercat]

Hang in there, Mary J. I know from experience that that's much easier said than done, but I'm right there with you. I first attempted to receive LTD (long term disability) insurance through my former employer, since they started all this by claiming I was no longer able to perform the necessary functions of my job. But as in most bureaucracies, what one says, the other denies, and so after an appeal of that denial which failed, and the stress of a mediation hearing that only went so-so, I moved on to applying for SSD.

I received my initial denial after applying for SSD via the net (no kidding on the hours it takes to fill all that out!! :eek: ) fairly quickly (applied in March of this year, and denied in June). I understand that process can take much longer. I fully expected to be denied the first time after reading enough here, and hearing enough horror stories from others who have gone through the process. I waited around a bit just in case the LTD might possibly come through, and made two attempts to return to work on a temporary basis (which confirmed in my mind that I just can't do it), and debated if I needed an attorney for my initial appeal (which I also expected to be rejected, as it sounds to be basically a "rubber stamp" process of the initial denial), and then decided to file my request for review on my own after speaking with an attorney.

That second denial came through even faster, being received Sep. 11th of this year. I suppose I've been stalling since then, but I'm finally determined to get all my appeals and information gathered and organized to turn over to an attorney this week, and I've been staying pretty focused on that at this point. I'm sure depression has played a role in my procrastination as well....who wants to be told again that they should be able to manage to perform a "sedentary job", and knowing that they just can't do it?! :confused: :( But I think I'm now motivated enough (and tired of depending on my own 69 year old mother's generosity) to get through what I sincerely hope will be the final and winning stage in this process, and hoping that it too will go as quickly.

So now that I've procrastinated long enough on a break to type this, it's back at it again! :rolleyes: Please do what I've been continuously told, and never give up on this process. It does sound like those of us who are truly deserving and honestly need this assistance eventually get it if our strength and self confidence hold out, and we make SSD as crazy as they make us....lol. I'm hoping to be back here in less than 3 months time (maybe an early Christmas present??) to celebrate being accepted for the help my family and I need and deserve, and hopefully there will be other deserving individuals here to join us in doing so.

Just as an aside: I have been advised by several well informed sources (attorneys and individuals writing "how to" tips for getting your case accepted) that if you are suffering from any anxiety or depression because of this process (and who wouldn't be?!), be sure to mention it, and find a way to seek counseling for it. SSD will seize on even the slightest mention of this to use in your case, so have it documented. If you don't have insurance coverage, find a low cost or sliding fee scale source to find a professional to talk to. I just got mine scheduled yesterday, so my ducks are all just about in a row, and I'm ready for them to come at me! :D

Let's all hang in there together, and we can help pave the way for others who may not have the strength to fight these battles. Best of luck to you.

[sandibg]

Hi :)

As I posted in another thread, I too am filing for disability for my P and PA. I didn't even try and do it myself. I hired a SSD advocate to do it for me. (allsup.com) They will take 25% of my initial payout, but I think it will be worth it to have them jump through all the hoops required by SSD. (I pay nothing if my claim is denied) So far I have been very happy with their representation.

I was told that SSD denies almost 100% of claims on the first try. Appeals are a necessary part of the process.

This website is an excellent resource and they will send you a packet about PA to include with your claim. I had my Dr draft a letter (based on the packet information) outlining my symptoms and prognosys to add to my claim file. My rep says it will be very helpful in getting my claim approved.

Time will tell. I only filed in July and so far I have not been approved or denied. But as I said, I am expecting to be denied on the first go round.

One thing to keep in mind...if you hire a representative, EVERYTHING from social security needs to go through them. Don't sign a form, fill out a questionaire, or talk on the phone with SS directly unles your rep tells you it's ok.

My 2 cents

Sandra

[mary j]

I guess the worst thing that the letter said was my back problems were evident from the mri but it wasn't severe enough to keep me from doing some type of work not as a nurse (my chosen profession for the last 20+ years) the number of limits they quoted was unreal no bending stooping crouching kneeling crawling or very strenuous. What kind of work does that leave it also said because of remicade skin should clear forget side effects makes no sense. Hubby says we will hire attorney now. Going to see family doc for depression have been treated for it in the past so maybe that will help me and my claim thanks for all the input

[Alyssa_B]

Mary J-

As you may know, the Psoriasis Foundation has a packet of information on applying for disability. Included in the packet are some informational materials, a letter from the Foundation with supporting materials describing the disabling nature of psoriasis and psoriatic arthritis to be included with your disability application, and a sample letter for your doctor(s). As others have mentioned, it is important to have your doctors provide you with letters of support as well because they are best suited to address your specific medical condition, past treatments, impact your condition has had on your ability to work, etc.

If you are interested in receiving a copy of this packet, please contact me with your complete mailing address.

Best of luck on your application. Try to be as patient as you can, applying for disability can be a long and frustrating process, but it is well worth it if your case is eventually approved.

Alyssa Brown
Advocacy Coordinator
National Psoriasis Foundation
abrown@psoriasis.org
Tel. 503.546.8407
Fax 503.245.0626

[mary j]

thanks I emailed my info hope it gets there I'm not real good with e-mailing things

[MrsSooners74]

Mary J

Please accept my apology for not posting to this thread earlier... I have not been to the boards much lately as I have been going through some more medical setbacks again.... A dear friend of mine did PM me however to point out this post and I hope I can be some help to you....

First of all.,. I want to tell you I know exactly how you are feeling being so frustrated .. This whole disability process can be very depressing and some days you are going to feel good about it and some days you are just going to feel like giving up. I will tell you however now that you started this Process NEVER give up. It took me almost 3 years to finally get approved for SSDI and SSI and I can’t even count the number of time I have wanted to give up, and if it wasn’t for the support of my family and friends I most likely would have given up a LONG time ago. You are probably thinking 3 years and that is a LONG time but for me it probably had A LOT to do with my age. I am young so they probably looked at it as “how disabled could she be” I know of some people that have gotten approved the first time they applied but the majority of the people that I know who have applied have gotten denied the first time and a lot have been denied on their appeal too. As soon as I was denied I was ready to start my appeal (I think they give you something like 60 days for a “reconsideration”) by myself once again and then I got a phone call from a cousin who lives on the opposite side of the country who is suffering from ankylosing spondylitis and was just approved for disability after fighting for a year and a half. He gave me the name of his lawyer who happened to be Binder and Binder and they are nationwide. And after weighing all the pros and cons I decided to contact them. I will tell you it was the BEST decision I ever made. I knew that if they did not win my case they would get paid nothing... and I knew that if they DID win my case they would get a percentage of my first check. I also knew that if I went with them there was NO giving up on my case because then they would charge me and arm and a leg.... It was a tough process I am not going to lie. There were days that I just didn’t want to deal with it and there were also days where my lawyers would call my house and I would see the number on the caller ID and I would ignore it because I KNEW there was no news. It was just a call that they did every 2 weeks to update me on the progress of getting all my medical things together. I was told in Jan 2006 that they requested a hearing and I waited from Jan to July when I finally got a letter stating that I finally got my hearing date for August... I couldnt believe it took that long. Honestly, I am not sure how the hearing goes because I never made it to mine. I was hospitalized for 10 days with the MRSA staph infection, and my psoriasis went edermic along with other infections and my PA was the worst it had ever been. Thankfully I had a family member take pictures to send to my lawyer who forwarded them to the judge who honestly was very upset that my case took so long to be approved due to the severity of my illnesses. I feel for you that you are on Prednisone..I absolutley hate it.. I was on 140 mgs of prednisone through my IV in the hospital in August and I finally have been able to cut down slowly to 50 mgs thanks to Remicade... So I know its tough... I’m so glad to see Alyssa Brown posted to this thread about the packet for disability. A friend mentioned to me that I sohuld contact her when I found out about my hearing and I did... She was WONDERFUL and sent the packet out right away I sent it right to my lawyer because it has such wonderful information and statistics and really would help someone who isnt familiar with these diseases get a better idea of how dibilitating it is..... I hope I helped you out some and know that I am here to support you whenever you need it... Keep your head up and keep fighting... It will be worth it in the end.... If you have any other questions PM me anytime.. I will continue to follow this thread in hopes that you have some good updates... and FEEL free to VENT ANYTIME you want.. That is what we are here for... all the luck to you...

[mary j]

thanks for all the support I did give alyssa the info and she is mailing me the packet today is better pain less today will keep you posted thanks again