Hi, while I am new to Ben's Friends I have been dealing with psoriasis and Psa for about 9 years. Yet just 3 weeks ago my rhuemy(of 2 years)said my fibro could be responsible for everything. He said I have no inflammation showing. Ive only had xrays and blood work. He mentioned doing an mri if enbrel doesn't help. I've been on methotrexate for 9 years plus he has had me on Humira for 2 years. About 2 months ago my symptoms started worsening. He then took me off of methotrexate and put me on prednisone. I returned after 2 months and this is when he tells me my fibro may be responsible for everything. I told him I would hate to think I've been on these strong meds for nothing! He is still not doing a mri and putting me on stronger meds!
I had psoriasis heavy on both my elbows twice 9 years ago. This was before I was on meds. Since then I break out on my hands, back, ears, face and scalp. As for symptoms of PsA I have pains in the joints of my fingers,hands, wrists, toes, feet, ankles, knees, hips, neck and back. The base of my thumbs and toes are oh so tender. I have pains and knotts in the pads of my feet and hands. I have major fatigue and stiffness.
I have gone into all of this to ask this, I was on prednisone for over a year in the beginning as well as small doses throughout the past 9 years as needed, along with methotrexate and Humira, could this be preventing me from showing inflammation and deforming?
Thank you so much for any feedback. They assign counseling for cancer patients and I think that is wonderful and needed. But with a debilitating, incurable disease the dr just says you have this and we can try you on this! Nothing was told to me on what to expect! I've said enough now lol!
Tender hugs!!!!
Hello twgarrett.
I've moved your discussion to the General Discussion section, where I think it will get viewed more frequently.
I think you are right to be cautious or indeed downright suspicious with the proviso that your rheumy may of course be right. I doubt that I'm showing much in the way of inflammation right now .... I am one of those PsA patients who has shown inflammation in blood tests in the past, unlike quite a few of us, but that has been negligible for years. I have some minor swelling, the kind that some rheumys might ignore though mine tends to agree with me, he sees what I see, usually. He also attributes my relatively minor aches and pains to PsA, the one word 'inflammation' is his usual explanation.
As I understand it, x-rays are not great at identifying inflammation. And also I agree that the whole purpose of the drugs you are taking is to control inflammation .... so it does seem highly possible that they are working as intended. Which doesn't necessarily guarantee perfect ease. Compared to what you describe I'm in the pink, sometimes feel fit as a flea ...... Humira and Methotrexate are working very well, but I still have PsA .... I still hurt at least a bit most of the time, I'm still somewhat limited in what I can do.
I'm wondering whether you might need to seek a second opinion. I say this so often folk must think I'm obsessed! But so, so often it is the answer despite being a bit of a hassle. I think I would want more evidence and more discussion before relinquishing a diagnosis and the treatment that would seem to be controlling a disease.
I agree with Sybil on getting a second opinion. You've had psoriasis, sure some of your symptoms could be fibro, some symptoms are OA in a lot of us. That doesn't mean we don't have PsA, too!
My swelling was so subtle, but luckily my rheumy could see and feel it. I realized it after I went on Enbrel and that subtle swelling went down and I can see the bones in my shoulders, feet and hands. My blood tests for inflammation are normal (sed rate, etc).
I hope someone figures this out for you so you can get back on meds that work for PsA. Good luck!
Thank you so much Sybil for putting my post under general discussions! Thank you and Grandma J for your feedback. Grandma J, I should receive my first prescription of Enbrel in the mail Wednesday. I'm praying for relief from it fairly quick! I have really liked my rhuemy and how he discusses options with me which is why it threw me off when he insinuated it may all be my fibro. My thinking is the Enbrel will work letting us know for certain my problem is PsA, right!? ..... Then again I got releaf from Humira and methotrexate for 2 years.
So you're still on Enbrel .... and if it doesn't work that's when you're likely to have an MRI? Thinking about it, that sounds like a good plan.
If you've actually got a good relationship with your rheumy maybe you & he need to thrash things out. There are some key things in this discussion such as 2 years success with Humira and Mtx, concerns about whether steroids have masked any residual signs of PsA that you'd otherwise have, wanting an MRI if that is the best imaging to detect inflammation .... Why not start a list of key questions and concerns, keep going at them till they say it all and then use that as the basis for a discussion with your rheumy? I realise this would require another appointment and that's sometimes the hard bit to arrange, but perhaps you & he need to talk!
Hi there twgarrett, my story in brief is that I was diagnosed in 2012 and after a run of ineffective treatments have been on the biologic Simponi (golimumab) for the last two years. Even though I was pretty sure it was working I still had swelling, aches, pains and tenderness which I couldn't get my rheumy to see me to discuss let alone examine!.
So I got myself a second opinion, this was a year ago, which confirmed my disease activity still wasn't as well controlled as it could be. I changed my rheumy to this new doc who increased my dose of Simponi last October/November and, sure enough, a few persistent problem areas improved. BUT I still have alot of fatigue (worse than ever), stiffness, tenderness and sore knotty bits .... which I reported at my April appointment. These symptoms are what really mess me up these days. But no swelling and no evidence of inflammation (so the Simponi IS doing it's job well). Enter a new diagnosis of secondary fibromyalgia!
I'm still learning about this new foe. My nose is firmly planted in an authoritative tome "Fibromyalgia & Chronic Myofascial Pain" by Devin Starlanyl and Mary Ellen Copeland. It may be hard going but what I'm learning, though, is how to differentiate between what I am now pretty certain is PsA (or PsA damage) in origin and what is FMS .... it can be foggy because as a pain syndrome FMS will amplify any PsA pain. Interestingly, I am learning about a few random FMS symptoms that I can identify with that pre-date my PsA by a long while but I absolutely do not think this was/could have been FMS all along. But I do concur with my rheumy that FMS explains alot of my current residual symptoms that have not responded to PsA treatments.
Ultrasound is the best diagnostic for checking for inflammation. Maybe that is something you could also discuss with your doc?
For me knowledge is the most powerful weapon in my arsenal against PsA and FMS.
Good luck with the Enbrel and I hope you get a good result which will prove it's not (all) FMS.
Insist to your rheumy that it’s more than fibro! Especially since Humira worked for awhile. I’m pretty sure some of my PsA symptoms could have been confused for fibro, but Enbrel made them go away. That doesn’t mean Enbrel will always work, but I hope if not, my rheumy will switch me to a different biologic. Good luck–can’t wait to hear your Enbrel success story!!
twgarrett said:
Thank you so much Sybil for putting my post under general discussions! Thank you and Grandma J for your feedback. Grandma J, I should receive my first prescription of Enbrel in the mail Wednesday. I’m praying for relief from it fairly quick! I have really liked my rhuemy and how he discusses options with me which is why it threw me off when he insinuated it may all be my fibro. My thinking is the Enbrel will work letting us know for certain my problem is PsA, right!? … Then again I got releaf from Humira and methotrexate for 2 years.
I also agree, you could have PSA with FMS. Why not? I don't think these diseases are all or nothing. I would get a second opinion. Read all you can about both diseases and make your oven determination. I feel better and in charge when I come to my doctors with solid questions. We can have a real discuss about my progress versus just tossing some medications at me.
I want to thank all of you for your replies and apologize. I replied aweek ago but something went wrong, I fell asleep and it never got posted.
Great news, Enbrel is improving my symptoms. I had my second shot yesterday and while I still have a ways to go, there is much improvement.
Grandma J and Sybil you read my mind about the fact that the Humira worked for so long. He took me off the methotrexate, which needed to happen, but he failed to replace it and the Humira didn't work by itself in the beginning!
Jules G, I really thought I could recognize the difference between fibro and PsA until the dr threw me that curveball about it all being fibro. I thought oh no, but surely the dr knows! Dumb me huh!I'm just so glad I'm feeling improvement. But you are so right knowledge is power.
Amielynn38 I am fortunate in the fact that both my drs like that I research my decease and the meds offered. The thing I don't like is my rhuemy hasn't really spent time answering questions. Which I really don't know exactly what my questions are. I do go in with paper and pen. I have a list of my symptoms and we never go over it. However, he puts me on the right meds lol.
I guess my next question would be, how long would be common for Enbrel to work?
Thank you all for your replies. Tender hugs! Terri
Twg,
Sounds like things are turning around! Concerning your rheumy not answering your questions, maybe you could bring it up next session. Before he/she walks out the door, speak up. Some doctors see this as belittling their expert opinion but I see it as power. You can have a dialog with your doctor and maybe see why he/she does what he/she does. Though the talks I have had with my rheumy I have found he is just a person, a human, trying to help and sometimes not knowing what to do. It took the "god" doctor complex away. It really helped us both.
I've been on Enbrel for 1.3 years now. I am JUST NOW seeing improvement. For me it was slow little tiny steps. I would at least give it a year.
I'm just going to say that I agree 100% with what these other knowledgable ladies have said and add this: I have seen several rheumatologists, my third, who had not seen me when I was covered with Psoriasis, swollen, discolored joints, asked me if I was sure that I had PsA. At the time, I was reporting a lot of pain, but did not have supporting labs that showed inlfammation. That could have been attributed to the fact that I was on Remicade and an NSIAD and a low dose steroid, but, hey, who am I to challenge the doc? I had to defend my postition and remind him of all those past flares. I think he doubted, because I wasn't getting 100% better, so he thought that maybe fibro was causing all of my pain. I hit the ceiling, I was so upset. However, he did have a point. After some time to reflect and decide that I was willing to try anything if it would help with the pain, I began treatment for fibro in addition to my PsA meds. It was a good decision. So bottom line is that it isn't uncommon for PsAers to have Fibro as well. Being stuck with a fibro diagnosis carried it's own special burdens, but treatment can be well worth the struggle.