I hope that I am posting this in the right place. So sorry if not... My Rheumatologist keeps using the words "most likely" and "suggestive of" and wrote in a visit summary. "The asymmetry, the tendon involvement, and enthesopathy would be consistent. Encouraged her rheumatoid factor is only 15.9. No assurances made." I received a call today regarding my x-rays and they are "consistent with PsA" Would you mind giving me your thoughts? Do I have PsA? PsA with the chance that it is RA? I have a followup appointment in 14 days and plan on asking questions, but what until then? Please, help?
You are posting this in the right place, but whether or not you have PsA, I’m not qualified to say. But it does sound as if PsA is a prime suspect. What you want is a diagnosis that is solid enough for the rheumatologist to recommend a treatment. Without a solid diagnosis, you are just going to get more “wait and see”.
Here’s an article you may already have seen:
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/getting-the-t-shirt
Do consider getting the book. If the diagnosis is PsA it would be good to be in a position where you already know something about the treatments and you can make a quick and informed decision with your doctor without going away and thinking it over.
The unfortunate part of our disease is that the treatments take weeks, if not months, to work (if they are going to work at all), so if you can avoid uncertainty, you can get treatment on the road and shorten the time it takes for you to feel better.
Stay in touch, and feel free to ask plenty of questions. That’s what we are here for.
Hello LRoland. I'm just dashing off somewhere but my immediate thought is that the presence of rheumatoid factor does not clinch a diagnosis of RA as many healthy people also have it, it's one of those things that is 'suggestive' of RA. As yours is low that could be the case: that you're one of the people who have the factor but do not have RA.
I hate uncertainty! But it sounds to me as if you won't be in diagnosis limbo for long. Whichever disease you have this is a rotten time for you ... the waiting, needing treatment ... but you'll get there. Please let us know what happens either way.
Thank you! I did read that article earlier, but I did not "get it." I just searched for "brain fog" and I swear I have that.... Nothing in that article seemed the same as when I read it yesterday. I do not know how many times over the last few months that I honestly have thought that I was beginning to have dementia of some sort. I was really tired when I read it yesterday and just woke up from a decent night's sleep. Geez, I can just see myself going into Sleep Number to take a nap at the mall to be able to find my car!
I also found an app for my phone that helps track symptoms, I am going to look at those today... if I find the energy....
Thank you!
I called my doctor and he told me that he is pretty certain about the diagnosis, but is going to continue to test me for RA because of my family history. The disease is in the early stages, but he is not sure how fast it is progressing at this point because I have told him that it seems to be a lot worse over the last few months.
Hi Lroland,
It can be really confusing--particularly as you're working to get a diagnosis. PsA tends to be ruled in or out based on a series of factors. After I had some initial bloodwork that didn't show any inflammation (although my body showed LOTS of it!) my rheumatologist called me to reassure me that he STILL thought I had PsA because of my own and my family's history of psoriasis plus all the swollen joints and enthesitis I presented. My understanding is that because there's no dispositive test for PsA doctors will often use language that suggests "chances are good". Kind of like a magic 8-ball!
What country are you in? My Rhuemy told me that in Australia they sometimes leave the diagnosis a bit loose because some of the more effective treatments for PSA are not on the medical benefits scheme for PSA but are for RA. Some of them are $25,000 a year without the benefit scheme so indecisive is not always bad
I am in the USA and have a very high deductible on my insurance, plus I pay 20%. So roughly $5000 (US) out of pocket plus 20%. My maximum out of pocket is $12,000 (US). I am looking for prescription drug coverage to help. Yep, this is going to be expensive.
Hi LRoland! I just wanted to tell you if your doctor puts you on Enbrel, there's "Enbrel Support" and I think anybody who has private health insurance is eligible. Enbrel is very expensive, but Enbrel Support covers a very large portion of the deductible/copay. I have a high deductible policy and the most I ever paid per month for my Enbrel was around $30 !!! (I currently pay only $9 per month.) I don't have information on any of the other biologics or meds, but I wanted you to know about this one. (Maybe other members get similar financial support for other biologics.)
The doctor should have information about any programs you can join to help defray the cost of a biologic, should he recommend one for you. Be sure to ask. There'll be a phone number to call to arrange for it, and you get an Enbrel Support card. I may be jumping the gun here, but it's just a little bit of information that'll come in handy for you later on down the road!
:-)
LRoland,
If you have private health insurance in the US and you are prescribed a biologic medicine then you will likely qualify for a prescription assistance program program provided by the drug manufacturer. Enbrel has one, Humira has one, etc. etc. While the amount varies by insurance plan, the out of pocket portion of the drug is often covered almost wholly by this prescription assistance. For example while I was on Enbrel the plan covered first 6 months fully then I paid $5 a month. I think my current plan on Humira is about $10 a month. These are FREE plans and you can register for them online or over the phone. Your doctor will help you set these up.
Oh, THANK YOU so much! I have heard of programs, but have never been on a medication that required one that was covered. I do have health insurance through my husband's employer. I had been looking for a separate prescription drug coverage plan. Thank you! Thank you! Thank you!
Lisa
This is why we're here!!
LRoland said:
Oh, THANK YOU so much! I have heard of programs, but have never been on a medication that required one that was covered. I do have health insurance through my husband's employer. I had been looking for a separate prescription drug coverage plan. Thank you! Thank you! Thank you!
Lisa
That’s why we’re here, and that’s why this is there:
http://discussion.livingwithpsoriaticarthritis.org/forum/topics/co-pay-assistance-cards
It’s not going to be nearly as bad as you think.