Saw the disabilty doc today.... (2024)

In reply to mindy40's comment

Hey there. I believe you are exactly right in the fact that the way he demonstrated his personal reaction to your condition is much to be desired coming from a physician. No matter how awful you look or feel a physician should not demonstrate that your looks cause him to react in any particular way. He should definitely demonstrate compassion in your situation. It is not going to determine your complete ruling either way. He is after all a physician who took a huge oath. Which in part means to do no harm- which can also be determined or interpreted differently depending on the situation but he doesn't need to make a patient feel uncomfortable or self conscious. In the line of work he is doing for the SSDI evaluations these aren't his only form of employment. He may be retired or picking up part time work as an ER doc routinely does, etc. so they have seen bad looking or terrible sights with patients. This was just not right but you will probably get a favorable ruling I would think. I am sorry you were treated that way though. 😊🙏😥

Blessings and hugs to you. I have been there and luckily got approved.

Pam

25% directly to Disability Specialist atty ........ http://www.disabilitysecrets.com/question16.html

In reply to JULIAinFLA's comment

In reply to FalPie01's comment

and

Besides the $25%, Attys charge expenses of............. HUNDREDS of $$$ for "expenses":

driving (gas), phone calls and many other expenses.

yes it is robbery, BUT w/out it many would get it

and notice how ling it takes to be qualified and collect 1st Lump Sum payment?

well unless it takes about YEAR or more there is not enuf profit for Atty.

The larger the 1st Lump Sum the larger the % they get paid,,,DIRECTLY to Atty from Soc Sec!...Client has no say!

Ill bet there R other pay-offs here!

In reply to a comment that has been deleted

In reply to SkinANightmareinSD's comment

I imagine living in South Dakota doesn't make your condition much better in the winter. Even living in Texas, mine gets worse in the cold and the dry air. I know "cold" is relative when comparing Texas to South Dakota, but you know what I mean. I'm glad the Otezla is helping you. I know not having insurance is a major inhibiting factor to access to certain medications that are more specifically targeted to the areas of the immune system responsible for the psoriatic inflammatory processes. Even people with insurance are often denied access to some treatments because of costs. I'm covered under my partner's health insurance at a major US airline and because they are so big, their health plan is self funded so they essentially tell the insurance company what to cover and what not to cover. When I was started on Stelara, I was SHOCKED to find out that each injection is about $10,000. Thankfully that is only taken once every twelve weeks, but for those without insurance, even one shot is out of the question, or people with high deductibles, etc, it can be cost prohibitive. There are some copay assistance programs, and coupons, but it still leaves it out of reach of so many. When my body began developing anti-drug anti-bodies to it, and it began failing, Consentyx was just approved by the FDA and I was one of the first three people to start it in my city. It is monthly, at home injections, but they are $14,000. I know it costs billions to develop new medications, but I think drug costs are outrageous and condemn many to misery because they simply can't afford them. I will tell you this.

When I first started Cosentyx, I was contacted by Novartis by their representative and they told me they provide the first "load doses free" while they seek authorization from your insurance company. They didn't know that my insurance covers everything, but they still went through the approval process. Your first doses are WEEKLY for five weeks and you get your first injection at the dermatologist's office, then your next four weeks are sent to you overnight and you inject yourself at home for the remaining four weeks. After that you move to monthly injections. I was told by the Novartis representative that even though they provide your first five weeks of medication free, ($70,000 worth of medication), if you don't have insurance, or your insurance denies you, they have programs to continue to get it for free or at a significantly reduced price. Talk to you doctor about this. Once you fill out the Cosentyx paperwork at your dermatologist's office, it triggers a system where a Novartis Cosentyx representative contacts you, explains the free "load dose" program, they work with your doctor in getting insurance approval, and they contact you from time to time to check on you. In my case my insurance approved my injections for a $25 copay, and I don't even have to pay that because Novartis still has a copay assistance for that $25 so I get it for free, so I never had to explore the program they have for non-insured/under-insured people. You may still be able to get it if you're not insured for free, or very cheap. I just never had to go to that second tier of their program. They are trying to get this medication out to as many people who qualify and they try to make it affordable. I don't have to have lab work as often as I did when I was on Humira, Enbrel, Remicade, and Stelara. It still suppresses your immune system, but at much more specific site in your immune response chain. Most people do just fine on the Humira, and Enbrel, and never need to escalate to the other sronger medications like I have. Check with Abbvie Medical regarding Humira, or Amgen regarding Enbrel to see if they have free or greatly reduced cost programs, like Novartis does with Cosentyx.

Unfortunately, it appears I'm beginning to develop anti-drug anti-bodies to Cosentyx because I'm starting to get plaques again. The Novartis rep AND the nurse from the specialty pharmacy that sends me the Consentyx, along with my doctor are all telling me that this could just be a little "break through" because the priority is 52 week and 104 week results. They remind me this isn't a cure, it's just a treatment, and they are right. Sometimes I get a little too excited when the FDA approves something new and get my expectations too high. When you're desperate, that's easy to do as I'm sure you know very well. So I'm staying on the Cosentyx and using topicals for the plaques that break through.

Another thing I would like to suggest to you is to reconsider your doctor's offer for anti-depressants if you can afford them. People like us face TWO serious comorbities with severe psoriasis and psoriatic athritis. One is severe depression, and suicidal thoughts, and severe heart disease. When my psoriasis got well enough that I could stop my Fentanyl and morphine, I still had a considerable amount of pain that my Cymbalta helps with. I'm on Cymbalta for my depression, but it is also known to be a pain reliever. I know my story and advice is better geared to those with insurance, but I don't know what your budget is, and what your threshold for spending is, but even though you don't have insurance, I know there are programs like Novartis', and copay assistance programs for so many medications out there, that you may not HAVE to be stuck with just oral medications like the Otezla you're on.

If your dermatologist doesn't have experience with the biologics like Humira, Enbrel, Remicade, Stelara, and Cosentyx, he/she may not know about the financial assistance available out there. My dermatologist didn't have anyone on Cosentyx or know anything about it because when I started it it had only been on the market a month, so what he did was refer me to a dermatologist who handles a lot of biologics, had him start me on the Cosentyx, they had conversations over the phone, then my original dermatologist took control of my care back so I didn't have to totally change doctors.

Although I've written this comment as a reply to SkinNitemareinSD, I know many others of you are reading this. I hope the information is helping you too. Even if you don't get SSDI, and are not insured or barely insured, do some research. There are programs out there to get you the more advanced treatments for psoriasis and psoriatic arthritis either free, or considerably cheaper. I've heard, but have no experience that even if you get SSDI and have to use Medicare, they don't always cover some of the more advanced biologics or they have very high copays. On SSDI they provide Medicare part A coverage (hospitalization) free and that's mandatory. If you want Medicare part B, which is the medical doctor part and Medicare Part D, the drug part, you have to pay a monthly fee out of your SSDI benefits. I use my partner's insurance and not Medicare. When I've had to be hospitalized, his insurance pays first, then Medicare part A covers what little out of pocket I had after my insurance paid. Because you MUST have Medicare A and it's free.

We are a unique group that often feel the need to hide in the shadows, dress like it's winter in the summer, our condition comes and goes seemingly whenever it wants to and many of us suffer a great deal of pain, ruined clothes from cracked and bleeding skin, others treat us like we're monsters and contagious, our condition causes fatigue, depression, anxiety, and many of our medications cause terrible side effects that only make the way we act, feel, look, and can perform even worse. Trying to get a job with all of that going on, and performing well, and as expected is difficult. We have frequent doctor's appointments, lab work, we peel and have large flakes of skin dropping out our clothing in front of people and it can become too much to bare. I consider myself very lucky. I must have had an angel on my shoulder because my initial SSDI request was approved and it only took a little more than a month. This January when they reevaluated me, I was immediately recertified, but I appear to be in a very small, lucky group. I know people who have psoriasis and psoriatic arthritis as bad as mine get and they have been denied.

My doctor and I have written to Social Security trying to bring attention to this issue, and trying to get their medical decision teams to take this more seriously. As embarrassing at it was, I allowed my doctor to send pictures of my body from different angles with my medical records when Social Security requested my medical records. I think that helped, because it does cause people to recoil and gives them an image of what we deal with. When your whole body is covered, and yours is painful, you can't find a comfortable sleep position, you can't sit in one position very long, you'll start bleeding from somewhere and have to track it down, you are susceptible to secondary skin infections, and frankly, people are afraid of you, and do not want to hire you. I think too many people hear "psoriasis" and think of those who just get a few patches on their elbows or knees or maybe a plaque or two on their shins, and they think "why can't someone like that work?". They don't realize many of us have coverage >75% or more on our bodies, and it hurts, not just itches, we crack and bleed by just moving, and if you get the arthritis, your misery is just multiplied.

But if you or anyone reading this is denied your SSDI, PLEASE continue to find treatment and financial assistance programs like Norvatis has with their Cosentyx. I'm 48 and have been dealing with this for about 25 years. It finally got overwhelming and I had to go on SSDI 10 years ago. That's was not easy. I was making good corporate money but companies don't want people who are sick, miss a lot of work for appointments, treatments, and frankly, the way we look sometimes. Not one of us decides to leave high paying jobs, for a small monthly check because we're lazy and don't want to work. We give that up because we can't work, and others don't want to work with us. I encourage anyone who is at the point where you have to make the decision, or it's been indirectly made for you that you just can't work anymore, to apply for SSDI, and if denied, go through the appeal process. AND BE HONEST!!!! If you are suffering from the major depression and anxiety that can come from dealing with a chronic illness, and if you've thought, "I don't know if I want to keep living like this.", speak up and tell your doctors. Too many fellow sufferers have given up and taken their own lives. Many because of the disease, the inability to access good, affordable treatments because they can't work and can't get insurance or good insurance, and the way the general public can treat us. If you're suffering the secondary problems of having bad, life limiting psoriasis, say something. Find doctors sympathetic to your condition. My doctor and I are finding networks in my area for other severe sufferers. Don't suffer in silence. Apply for SSDI, and appeal your denial if you're denied. Contact pharmaceutical companies and ask about financial assistance programs. There are no cures, but there are treatments out there that will provide some much needed, although not permanent relief which gives you brief periods to relax, collect your thoughts, get things you've put off done, rest, and prepare for the next round, because you know there will be one.

Best of luck to all of you-John

I haven't had any doctor say anything about my SEVERE psoriasis, (except that it is severe), but I've heard nurses comments and they are usually, "Oh, the poor thing!" I get more pity comments than anything else. I don't really blame them, because you have to admit, it DOES look ugly and contagious! But, you would hope that people could be more careful in how they reveal their feelings.

I always thought that if anyone tried to molest me, my best defense can be my psoriasis! (tongue in cheek, ha!) I could just tell them that disease I have is VERY contagious! :)

Patricia

In reply to PJK222's comment