New member, 32 year veteran with Psoriatic Arthritis

New member, 32 year veteran with Psoriatic Arthritis.

I don’t know what took me so long to find this site, but I am thrilled I did. I was diagnosed 32 years ago and have been through it all. I began with weekly gold injections and all the lab work that goes along with it. My Rheumatologist told me I would be on disability soon, but I fought that and worked 30 years longer. I fought that by taking a lot of oral medications, from muscle relaxers to anti-inflammatories and pain meds. Since then I have been on many and all PsA drugs and I am currently on Remicade Infusion every 8 weeks, 400 mg. Recently ,September 1st , we added Leflunomide 20 mg every other day. October 1 more lab and an Infusion with liver studies to see how I am doing on the Lef. November 1, more lab and see the Rheumatologist Dec 1st to see the progression. The literature states the effects of this drug usually isn’t felt until at least 4 weeks, maybe longer. It has been 3 weeks and a couple of days and nothing yet so I might have to go on it every day instead.

I was doing well on the Humira with just a few flare ups for which I was given Depo-Medrol 80 MG IM and if needed another dose one week after. This always did the trick. But, in 2009 I had to go on disability as this disease finally caught up with me. After 2 years on disability, I was started on early Medicare benefits. I also have a supplemental insurance. The big issue and I do not want to get too political here, Medicare does not allow for home injections, other than for diabetics. Therefore, I had to go to the Remicade. Of course, it is about 5-10 times the cost but hey, our government knows what they are doing, right? Since I have been on Remicade, the psoriasis has been worse than it ever has, even destroying my fingernails. The literature about Remicade being a great drug for psoriasis? Not in my case. In these past 3-4 years, while on disability, my joints have gotten much worse especially my hands and wrists. My fingers have contractions, and have so for a long time, but the joint damage has been increasingly worse and my hands and knuckles are swollen and painful like an RA patient. My hips hurt so badly at night I have to sleep on my back. I have had injections in my shoulder lately and this has not been the case for over 10-15 years. Over the years I developed no range of motion in my neck and my arms no longer stretch out as the contractures have effected these joints as well.

My wrists hurt so badly today it was hard for me to even drive. I drop things constantly and cannot lift much more than a basket of laundry. My family members are so tired of me complaining I suffer in silence. I have doubled my vicodin intake or I would not be able to function at all. I cry all the time and want to throw things through the wall. Now mind you, this has all happened in the last 3-4 years. I cannot figure out why after all these years; the PsA had morphed in to the debilitating disease that now has limited my ability to have normal everyday activities.

I sound just like a whinny old woman and I hate that. I hope that this “introduction” letter will be it and I can now reap the benefits of communicating with all the other members here.

Thank you all for allowing me to ramble!

Welcome to the group. I know you will find good information and support here.

I am sorry it has been such a hard trip for you so far. Hopefully you will find some things to help with your load here.

Have you tried PT yet? It has made a big difference in my pain levels.

Could you take Humiria at home if you or a family member was taught to inject it?

I will keep you in my thoughts and prayers.



michael in vermont said:

Welcome to the group. I know you will find good information and support here.

I am sorry it has been such a hard trip for you so far. Hopefully you will find some things to help with your load here.

Have you tried PT yet? It has made a big difference in my pain levels.

Could you take Humiria at home if you or a family member was taught to inject it?

I will keep you in my thoughts and prayers.

Thank you Michael! I have tried PT at times and I actually found that a good massage will do the trick. Getting this cover by insurance is a challenge. Sometimes I don't even want anyone to touch me as that causes pain as well. The injection bit is easy as I was a nurse for many years. The problem is Medicare not allowing any home injectable, nor does my supplement Anthem BCBS. If I chose to do this the cost to me would be at least $800.00 per injection. When I was working and had private insurance it wasn't a problem. It's funny how the drug companies offer a discount to take these drugs, as little as $5.00 per month. But once you are off their coverage and on Medicare/ etc., they no longer offer it. I do have a new broker and she is checking in to this for me. She tells me Medicare will approve the injection if done in the Doctors office, and I remember asking about this and they did not offer this. I am ready to research this further and see
what gives. Thank you so much for your thoughts and prayers. I really appreciate it.
Erinsmum said:



michael in vermont said:

Welcome to the group. I know you will find good information and support here.

I am sorry it has been such a hard trip for you so far. Hopefully you will find some things to help with your load here.

Have you tried PT yet? It has made a big difference in my pain levels.

Could you take Humiria at home if you or a family member was taught to inject it?

I will keep you in my thoughts and prayers.

Thank you Sybil , firstly for the reply and second for the encouraging words. I am all too familiar with the NHS in the UK and sometimes I think here it might be easier. That said Obamacare is not the answer. Sorry, off my soapbox now! No one can really know, unless they have PsA how debilitating it can be. To have a family support system in place is pretty remarkable. My daughter has always been of the mind set that doing more will keep me independent. She is correct to some extent. But, she was just diagnosed with Rheumatoid Arthritis and has started her own course of meds, etc. I have no idea where my PsA came from, as no one in my family has ever had this. Unfortunately I passed on this gene to my daughter and over the last year I have really seen her suffer. Both of us developed this in our 30's. She has mentioned to me that she now sees what I am really going through. Believe me I would have rather had her continue to think differently of this disease, than having to now suffer it. Now we compare joint swelling in our hands when the humidity is high. I know what is ahead for her, and it kills me. She is a strong woman but these diseases can bring anyone down.

Thank you again Sybil for the kind words.

sybil said:

Hi there, I just want to say a big HELLO! I haven't got anything helpful to say re. your issues with Medicare, I'm afraid, as I'm in UK & know next to nothing about it. But if there is a way around the problem I'm sure one of the knowledgeable people on here will be along soon with some ideas.

It must be incredibly frustrating having to deal with more debilitating disease after all these years of coping so well. And I think family members so often expect key players in their lives to stay the same, come what may. But if anyone can re-adjust and find a way through then surely that's you? My heart goes out to you but you are pretty damn inspiring too.

All the very best to you.

Hi Erinsmum,

I was dx with juvenile onset PsA 31 years ago, I'll bet we took all the same meds, as there wasn't much on the table back then.

I'm sorry you've had such a rough time in the past couple of years. Is it possible to get your injections in the dr's office, done by a nurse or other medical assistant, for low cost?

Welcome to this great group. So much support and info here :)

Hi, Erinsmum, you’ve had such a long hard road, haven’t you, and now it’s starting to go uphill. I’m so sorry. Like Marietta says, the good thing about having PsA now is that there are so many more treatment options than thee were even a decade ago.

You do not sound like a whiny old woman. To me, you sound like someone who is really tired of battling this disease. PsA is a vandal and a thief, and a wily one at that. Why has your PsA got so much worse in the last three or four? I wonder as well: I suffered the fatigue, aches, depression, irritable bowel, pains and joint problems for somewhere between 15 and 20 years. I soldiered on, thinking that what was wrong was all in my head. At the age of 60, I finally was diagnosed, and the last couple of years have been really difficult. I’m now on Enbrel, and getting some improvement.

Crazy, isn’t it, how Medicare has these nonsensical rules about what kind of therapy is allowed and what isn’t. You’re not the first person here to mention that situation.

I’m glad you found us so that we can support each other through this.

Thinking of you!

Hi Seenie, and thank you for your kind words. Enbrel is a great drug and I hope it does the trick for you. And you are right, I am really tired of all this. My ex-husband was not a great support system and would shows his distain often...especially when we would have something planned and that day I just didn't feel well. Places like Disneyland, that involved a lot of walking was really getting to me the last few years. I would double up on vicodin just to get through it but still had to make a lot of rest stops. He was a very active man and always said he understood but I could tell he hated it. Notice I said ex-husband? LOL..that is a whole other Oprah! I traveled a lot for my job but again I was doubling up on pain meds in order to get through airports, etc. I never went to dinner with employees as I was just too tired. My daughter is of the mindset that the more you do the better your joints will feel. She is now taking a different stance after her recent diagnosis of RA.

How on earth could you suffer that long without seeking medical advise? But to put a name to the reason you had all these symptoms had to be a huge relief for you.

Fingers crossed with the Enbrel. I am scheduled for Infusion Tuesday, but I moved the appointment up so I can get this in me ASAP, tomorrow. This has been the worse major flare up I have ever experienced so looking forward to some relief.

Again, thank you! You are in my thoughts as well.

Medicare won't pay for any meds. Your supplement or part C (or D) will. A and B will cover Office or Hospital procedures. If your supplement or part D doesn't cover self injectables or you don't have part D (or are on c plan) your agent is an idiot and failed to take a history. Even Wal-mart has qualified staff to help you get the right coverage. You have another open enrollment period coming up soon. Go to either Wal-mart or Walgreen with a list of your meds including the Biologicals and ask them which coverage plan D you need. Thrust me they will tell you they would LOVE the Humira Biz.

For most of us with chronic illness, in terms of budget we can cut back on the expense of Med/surgi benefits and put it towards paying better for medications and durable equipment. We may be in crappy shape but we spend little time in the hospital or under the knife Don't count on being covered if you find a doc that will inject you in the office More than one has gotten an unpleasant surprise when the adjuster goets through the claim. They can smell that one. They will cover the cost of injection but not the meds.



Anna said: Self Injections are not a problem as I am a retired ICU/ER Nurse. That said it's a "medicare" policy and most Rheumy offices don't administer Enbrel, Humira, etc. Nor does any Medicare Supplemental Private Insurance. At least non that I have found. They will allow Enbrel, Humira IF you pay the co-pay of anywhere from $800.00-$1000.00 per month.

So basically I am at their mercy. I just got approved for Simponi Infusions (at the Infusion Centers of course) so will starting that April 15. It's a joke because the Remicade Infusions cost $14,000.00 to medicare and my insurance. thus some drug company in cahoots with the FDA is making a lot of money off of this at our expense.

Thanks for your reply!

Welcome, Erinsmum!

Sorry you're having a hard time of it, I think we all can relate. I've had lots of ups and downs in my 3 decades with this misery.
I have a question. You said Medicare does not allow for home injections. Do you mean you can't give yourself a shot at home and need someone to come in and do it for you? Or don't they pay for the medication?
It doesn't sound like the Remicade is working. I hope the other new meds you take will work for you!

Hugs to you!

Anna

Welcome! It sounds like you have lots of experience with PsA and have been having a particularly difficult time with it, and with sorting out medical coverage and medications lately. I hope you find something that helps give you the relief you need, soon!

I've had PsA most of my life but didn't get diagnosed until I was 36 (I'm 39 now). In three months I went from hiking to using a wheelchair to get around - that was quite a shock to my system. It sounds like you're a bit shocked that your PsA has gotten so bad so quickly. It's a lot to learn to deal with!

I hope you find what you're looking for in our community. :)

I don't mean to be political but they have been for several Years trying to "fix" this issue with medicare. One's only option now is carefully chose their part D Coverage.

There was an entire section of the AHC called the Biologics Price Competition and Innovation Act (BPCIA)--which are designed to encourage competition in the market for biologic drugs and move them to part B coverage. The GOP being all about "competition" gutted it. We now have fewer biologicals in development, several projects cancelled etc etc. The gutted law (which was part of the compromise to get the bill passed in the first place) basically allowed anyone to call anything bio similar and bring it to market WITHOUT testing. It turned in to such hoo hoo fest we have no bio similars , no bios for seniors and a general mess in the whole area. We have been three years trying to get the thing fixed. Until they get the Bio-similar thing fixed we don't WANT these drugs generally available. or most of us will be forced to take meds that are less effective if at all effective, have no choice in whether we EVER get the real thing and I could go on for an hour. (When I say most I don't mean seniors only I mean if you are taking say Enbrel all that could be available to you is a bio similar that the manufactures is supplying at lowest bid and claims to be "equivelant" There are only five drug classes that are required by law to be the same as the Brand name. These are calle Orange List. Everything elses needs only be close including your NSAIDS - some are closer than others. Other such as a particular asthma Inhaler aren;'t even close.

We need to be assured that Bio similars if ever on the market are ORANGE LIST GENERICS.