Psoriatic Arthritis

[jonnyfive]

I am worried as hell. Reading these posts has brought me much comfort. I have had psoriasis for roughly ten years, since i was 14. I have also had problems with my back for about two years.Maybe today finally a smart doctor figured it all out. I've finnaly had enough of the pain and went to the doctor about it again.( A different doctor) He mentioned after noticing the scales on my elbows that i could have psoriatic arthritis. We are going ot meet next week after he and i research it a little more. I'm becoming scared after reading the facts and comparing them with symtoms that i ignore and dismiss to getting older. What my question is, is about insurance. I do not currently have health insurance and I wonder if the wisest thing I could possibly do is to go get some or is the costs associated with psoriatic arthritis not too expensive. visits, and tests and the such? Any help or suggestions would be appreciated. Thanks

[JesseLou]

I live in a state with no HMO's, so the costs here may be somewhat more than those where you live.

My first 2 appointments with a rheumatologist totaled $330.00. I went twice before starting treatment, because I had lots of additional questions. I will have to see him every two months, at least for the time being. That would add up to about $900.00 per year.

He put me on Methotrexate, 12.5mg inj once per week. Three months worth of medication and needles was about $30. - best deal in meds I've ever gotten!

He also put me on plaquenil, 200mg to start, then 400mg after the first month. A 90 day supply at 400mg costs $51. I am happy to be taking this - I have pustular psoriasis, which is extremely difficult to treat, but I have only one patch on my hand. Plaquenil can cause severe psoriasis outbreaks. I have had only a (drug, not p) rash on my psoriasis hand twice, and I can control it with benedryl. The plaquenil does a lot for my swelling and pain.

And finally, when on MTX, you must have blood tests every month, according to my doc. I was amazed to find that a simple CBC with liver enzymes costs $118. That would be $1300. a year.

I believe, though, that this is by far the cheapest way to go for psoriatic arthritis. It's all deductible, depending on your income, but only you can decide if you can afford it out of pocket.

BTW: All these meds have scared me at least as much as the PA, but I have to tell you, I am in soooooo much better shape than I was before I started, and I'm told the earlier you jump on it, the better chance you have of controlling it.

You're lucky your doc knew about PA - I sat with my orthopedic surgeon husband in another ortho's office, and neither of them had enough experience with PA to say that was what I had. I'm thankful though, that my husband is now really alert to this, and always asks his patients if they have psoriasis when they present with arthritic-like symptoms....one doctor at a time!

[MikeK]

From what I've read on this site, the cost of treating the more severe forms of PA can be very expensive. :( Most insurance policies won't cover pre-existing conditions. :( You might be able to obtain coverage since you haven't been officially diagnosed yet. Start looking for an insurance policy a.s.a.p.

Good luck and please keep us posted as to how you are doing.

[jonnyfive]

I will keep you all posted and thanks for the advice.

Jonnyfive

[PJ Leary]

Hi Jonnyfive,

By my math, you are about 24 years old. If you do in fact have PA, settle in for what may possibly be a long haul, like the rest of your life. Please take that possibility into consideration as you explore your options, now and in the future.

I would suggest you do as MikeK suggested, stop going to any dr's, and get ANY coverage you can. Wait six months before going to any dr for this. Even though Congress passed the Patient's Rights Bill, there are loopholes I have seen many insurance companies use concerning pre-existing conditions.

To begin with, get the least expensive comprehensive coverage you can purchase and afford. No insurance will help you if part way through the plan you have to drop it because you can't afford it. Then, DO NOT go to the dr, even for a cold, and have it billed through your insurance. If you get sick, or need to go, pay cash.

Ideally, you want to switch to another carrier after six months, upgrading your coverage as much as possible. This plan you will use. The first carrier is required by law to issue a "certificate of insurability ". After the first 30 days on the new policy, you should be able to begin processing claims for the PA.

From this point forward, as long as you maintain constant coverage on a health plan, pre-existing conditions no longer apply. If your coverage lapses, for any reason, you can have some big problems.

As to the suggestions that you jump to the systemics and/or biologic medications, I would urge you to proceed with caution. Get all of the information concerning the potential side effects, including organ damage, before making any decision. Remember, there will always be some quick fix opportunity out there, but carefully weigh all of the costs. Take into consideration the sources of information available, and make judgements based on your research .

I am now 42, and have had both severe psoriasis and pa since I was 16. I do not think of myself as crippled, but my dr's often do, depending on my current condition. I use a cane, but not all the time. I can park in handicapped spaces if I need to.

In closing, I would just say that information is power, so learn as much as you can. The NPF is a great resource.

Regards,

PJ Leary

[web63]

If you need to begin the expensive drugs, there are several programs out there.
For instance, I think there are some here on the NPF site. Just search the net, and you'll find them.
Methotrexate (MTX) would be a very common drug to start on. It has been around for years, therefore it is cheap. In fact my insurance does not cover it, and I pay about $38.00/month. Do alot of research, and get back with us.

[JesseLou]

PJ - I'm sorry my wordiness led you to believe I was recommending treatment. I was simply using my own experience to tally up the cost of one kind of treatment regimen.

It's worth saying that all drugs have potentially harmful effects: taking aspirin on a regular basis for arthritis pain can get you a bleeding ulcer. Vioxx can give you kidney damage.

Choosing a treatment is all about risk vs. benefit.

My choice is mine, based on my age (53) and my desire to stay on my feet for another 30 years, doing what I love. MTX is the best known of all the drugs used to treat arthritis, so it works for me in my situation.

Your advice on insurance was right on.

[calumsgirl]

This site has been a God-send. I started falling in love with Calum last December. He has psoriasis on both hands. I didn't think about it that much ( It didn't repel me or anything). And, he never complains --even though it looks really painful. It cracks and bleeds. Anyway-- he told me that last year- his knee swelled up mysteriously and ached and none of the doctors could diagnose it. They drained it and then it got better on its own. I think that maybe he has PA. And now I am vey worried about him. Also, his hands are basically untreated. He has some cream from the internet that he uses, but his hands can get very bad, and bleed etc. Anyway-- I am just worried. He is 37.

Katie

[Kirk]

Originally posted by calumsgirl
This site has been a God-send. I started falling in love with Calum last December. He has psoriasis on both hands. I didn't think about it that much ( It didn't repel me or anything). And, he never complains --even though it looks really painful. It cracks and bleeds. Anyway-- he told me that last year- his knee swelled up mysteriously and ached and none of the doctors could diagnose it. They drained it and then it got better on its own. I think that maybe he has PA. And now I am vey worried about him. Also, his hands are basically untreated. He has some cream from the internet that he uses, but his hands can get very bad, and bleed etc. Anyway-- I am just worried. He is 37.

Katie

That does sound like the PA. I had the 'mystery knee' and a lot of toe pain as my first onset. He should see a rhumetologist next time he begins to ache. They should know what the score is. My regular Doc sent me to an orthopedic doc who couldn't make heads or tails of it. Finally a rhuemy did! I've been able to manage mine with Vioxx so far as it keeps the inflammation down.

[calumsgirl]

Thank you for your reply....

I am reading so much and learning so much from the site. He has also said that his left fingers ache, and they do appear to have some swelling. Both hands seem a little swelled. It sounds like he needs to see a rheumy doc. The only prescription meds he has used are cortisone and he said that after a while his skin got so thin it would bleed at anything. I think that for whatever reason, he has not had good doctor care in England. I am so grateful to find this site and think that he will see some improvement. I am hesitant to mention the PA, as I don't want to worry him before he can see a doctor to discuss it.

[MikeK]

Hi Calumsgirl,

I can understand you not wanting to give your boyfriend something else to worry about, but, from what I've read here, PA is very hard to properly diagnose and is missed by more than a few doctors. (Quite frankly, I never heard of it until I discovered this site and I've had P for almost 39 years.) I think you should tell him what you suspect. That way he can discuss it with his doctors and hopefully get the proper treatment.

Just a thought.

Mike

[calumsgirl]

Hi Mike,

I think I will mention it to him. I have scheduled an appt with a doctor that I found here on this site for when he comes back over from the U.K. He is looking forward it, has been in a lot of pain the last few days. Now that I have brought it up, he is acknowledging how much it hurts!

I hope you, and everyone else on this site today, is having a good day!!

Cgirl

[ladyandy]

I'm glad to hear you'll be discussing this and will consider him getting to a rheumatologist.

It is true that PA is often misdiagnosed (as I just typed out to another poster :) ). It also has a tendency to sort of jump around from joint to joint, or to come and go without any real reason, especially early in the disease progression.

When my PA first became active, I would be limping around for a couple of months with a hip or knee that was hurting without any apparent reason. Then it would just stop hurting and I would be able to put it out of my mind and forget about it--until the next flareup.

The problem is, as long as that joint is flaring, there is permanent joint damage happening inside the joint where you cannot see it. In time, that damage can build up to the point that it becomes a real problem and can only be repaired surgically.

You don't want that to happen. Instead, there ARE effective medications that can control the disease progression.

This link will take you to some specific information on PA and how it is diagnosed and treated: http://www.arthritis.co.za/psoriasis.html This website is written and maintained by a practicing rheumatologist and has all factual, science-based information (and nothing for sale). I'm sure there are also similar pages around the NPF site, but I'm afraid I don't have them submitted to memory.

Hope that helps! Invite your friend to join us one of these days! And please do keep posting... we like to hear the followup.

[jonnyfive]

Thank you all so much for the info. I am supposed to go to the doctor this thursday but on second thought, I might just wait. I've found some student insurance that is pretty cheap that I can use for another two years. Hopefully it won't get much worse and in another year I'll finally be able to go see a rhuematologist. However one spells it.=) I'm very comforted by the fact that I'm not alone and you guys are very helpful. Thanks so much.

Jonathan