Okay now I am really frustrated. I have been dealing with "this" since February 2014. And I am still not sure what "this" is. Im 37 years old. I awas diagnosed with PSA in February 2014 based on my symptoms, elevated CRP, and family/individual history of psoriasis, and family history of RA.
I was normal before ...would take a couple vitamins a day, would party with my friends, play with my kids, did what wanted when I wanted. Now I'm on a host of medications to include most recently a pain patch which I despise but at the same time fear to take off.
I feel like my life has been on pause for the last 8 months. I have seen 2 different rheumatologist that have a really good track records but still have not been able to really help. I feel confused and so very frustrated.
I do feel better than when I started "this" but not 100%. I have horrible pain (burning) in my L elbow. It hurts on the both sides and at times feels like there is a tight rope around it. It doesn't hurt all the time only when I straighten it or bend it toward my face. And it is really stiff. I can feel that its swollen at times but I can not see it. Last night it kept me up while I applied ice and heat but then finally broke down an took another pain pill and was finally able to sleep. I have stiffness in my ankles, neck, and wrists that is at time more painful than other times. Also my palms of my hands and soles of my feet. but this is all more bearable than the L elbow.
I was so looking forward to the results of a bone scan that I had this week. Thinking that something would show up on it so I could be put on something more aggressive -like prednisone or enbrel- but nothing showed up. I feel defeated. I am sick of going to the clinic and sick of going to the pharmacy and sick being on meds for a disease I am not even sure I have.
ughhh. I'm really sorry you're having such a tough go of things. In many ways each of us has been through some version of this same feeling ourselves. Even with the "right" medications on board (anti-inflammatory, DMARDS and biologics) for some of us there's an exceptionally long lag between starting meds and finding relief. I spent lots of time failing NSAIDs then MTX before being put on a biologic. And I had to endure a LOT of steroids along the way--or rather my partner and colleagues had to endure me on steroids). Seems like a good long sit down with your doctor is in order. Chart your pain and your function (you know the questions about walking and tying your shoes and using buttons that the rheumatologist has you answer...you need to track those things, too). Being on a battery of meds isn't always the best way forward. Being on the RIGHT drugs is. You doc needs to hear from you in what ways you need help and you need to educate her/him about how you're functioning (or not).
I'm certain that below my comments are soon to come a barrage of others saying "me too" and "yeah it sucks" and lots of other helpful things. But remember this one thing--it DOES get better if you can work with your rheumatologist as a well-oiled machine. Good luck and I hope you have some better sleep tonight!
First of all, you are not crazy, and we “get it” here. Sick of being sick, sick of drugs that don’t seem to help, second guessing everything and everyone. Oh yes, we’ve experienced that. And lots of us have had one or more of the symptoms you have. For me, the pain and stiffness in the feet and wrists really struck a cord. We’ve been where you are, and we know it isn’t fun.
You don’t mention what host of drugs you’re on – is sulfasalazine still your DMARD? How many months now? Has there been any talk of stepping up that part of your treatment? When was the last time you saw the rheumatologist? One of the things you could ask for that might be useful is a course of prednisone – if that makes you feel better, it’s a pretty good indicator that inflammation is the problem. There are risks to prednisone that your doc no doubt will discuss with you. You may not need to go to the rheumatologist for that: your family doc may be willing to prescribe that for you.
As for the bone scan. I have been there. There was something wrong with my hip, so they x-rayed. What they saw made them think that I had avascular necrosis (the joint dies and crumbles). I said I thought it was PsA. They said no, AVN. So they did a bone scan. What did it show? Nothing. OK, they said, must be OA. I said I still thought it was PsA. No, they said, this one’s just OA, if it was PsA your inflammation markers would be high. The hip was so bad it needed to be replaced PDQ. The surgeon looked at the x-rays and said it looked like inflammation damage. In surgery, I nearly bled out because the inflammation was so bad that the whole joint had vascularized. It was definitely PsA. I’m not asking for pity, but the moral of the story is: tests can be wrong. When interpreting an x-ray, even the experts can make a wrong call. Just because your blood work looks fine, doesn’t mean you are.
You are not defeated. You know that you don’t feel riight, and you definitely have pain – you wouldn’t be given a pain patch if they didn’t believe you. But pain patches and oral meds are not a solution to your problem. The answer is to find something that puts the brakes on the PsA (or whatever it is, but it sounds like PsA to me). Then you won’t need the pain meds, or at least you won’t need them constantly.
Hang on there, Wondering, and persist. I think you need to go back to your rheumatologist and ask to have your treatment stepped up so that you won’t need the pain meds.
Wow, I'm so glad my rheumy didn't doubt my PsA because my sed rate and crp are always normal, but my cpk is always high. He took into account my long history of psoriasis and then the ugly recurring sore joints, stiffness, weakness, fatigue and inflammation to diagnose the PsA .
So, Wondering, you can tell your doc you know others who are diagnosed with PsA without the usual markers. And Enbrel is working pretty well for me. Not sure if anyone is ever completely pain free, but right now I feel if my back pain goes away, I'll feel good. And I couldn't have said that before starting Enbrel. I always felt crumby and just wanted to give up.
Sorry you have such pain at 37-hope you get a dx soon, because if it is PsA there's a real good chance a biologic would help.
Any chance you have any active psoriasis??? It hides. Derm docs can more easily prescribe the big guns........ If not push for the predi and hope it causes a flare of P (it often does) and have a dermie on hold so it can be seen right away.
I won’t go so far as to say this is “normal”, but very few of us went to the doc, got a prescription, and felt better. LOL
Some people are lucky enough to get a speedy diagnosis. For most people, it takes a while to figure this thing out. And for almost all of us, finding relief took many months. Have you read the article called “Mind the Gap” in the Newbies’ Guide?
Wondering123 said:
This may seem like a dumb question but is this the “normal” for this disease?
Its up above Seenies post... This is called the "If you can't get in the front door, kick in the back door." approach Make an appointment with a dermatologist. Psoriasis is treated with the same meds as PsA well except sulfazine isn't high on the list. Dermies are people pleasers I would be very surprised IF you didn't walk out with a script for Enbrel at the very least a script for MTX. Especially if you ask.....
The comment about the prednisone wasto let you know if you didn't have any active P, a taper of predi will usually flare it up if you need some help kicking in the back door. Not that I would ever suggest being devious to get treatment..............
The dermy can get you a double dose of Enbrel. My rheumy told me Sulfasalazine won't help psoriasis at all....my insurance denied the Enbrel until my dermy sent further info about my PsA, so if your dermy prescribes Enbrel, if your insurance has the same kind of guidelines as mine, they might want the diagnosis of PsA too. Just a heads up!
I also have a Derm and a Rhuem, I use them like a game of ping pong! My GP won't touch me anymore, unless it's a simple cough and cold type thing. I should find a new one.
There is no normal for me. I just survive. I have dealt with skin issues and joint pain since I was 4. So, this is my normal. Right now I am on Stelara and feeling great! This is the BEST I have ever felt, ever, ever, ever. I still need an anti inflammatory on hard days and something to help me sleep.
That's great, amielynn! It's always good to hear positive results from the different biologics! It gives everyone hope!
amielynn38 said:
I also have a Derm and a Rhuem, I use them like a game of ping pong! My GP won't touch me anymore, unless it's a simple cough and cold type thing. I should find a new one.
There is no normal for me. I just survive. I have dealt with skin issues and joint pain since I was 4. So, this is my normal. Right now I am on Stelara and feeling great! This is the BEST I have ever felt, ever, ever, ever. I still need an anti inflammatory on hard days and something to help me sleep.
Such good news, Wondering! To have a doc who understands the disease, its complexities and implications is something that will make a big difference to your quality of life. And the best part is that obviously he believes in aggressive treatment. Bravo! I’ll keep my fingers crossed for you that the Humira works, and fast. Some people get an immediate response, but it can take as long as three months before you’ll know. We’re rootin’ for you!
Such good news, Wondering! To have a doc who understands the disease, its complexities and implications is something that will make a big difference to your quality of life. And the best part is that obviously he believes in aggressive treatment. Bravo! I’ll keep my fingers crossed for you that the Humira works, and fast. Some people get an immediate response, but it can take as long as three months before you’ll know. We’re rootin’ for you!
PS no advice on the Enbrel/Humira choice, Wondering. But I would personally save Otezla for another occasion. Both Humira and Enbrel have been around for a while, and we know the most about them. As for the insurance question, maybe someone else knows about that, I don’t!
I'm so happy for you! I think you can start off with a double dose when a dermy prescribes it. At least, that's what my dermy told me. I started on Enbrel and took two injections a week for the first 3 months. I just started the 4th month and going down to 1 dose/week. So, Humira is usually every other week but if my dermy was right, I think you can get weekly doses for the first 3 months. If so, it may help your severe PsA symptoms a lot better and faster. As far as SEs, I didn't get any worth mentioning from Enbrel, and many people don't. And, I was lucky in that it started working right away. I hope the same for you! Good luck!!!