I had some flare up of my skin psoriasis about a month or so ago. (Scalp, back of ears & all over my face despite Oil & cream to scalp & 2 different cream to my face/neck) Saw a new Dermatologist who was working inplace of my regular Derm who was on vacation. Anyway, new guy gave me 2weeks tapering doses of Prednisone. Felt much better with the course of Pred. But 1-2weeks after the last dose, I started aching EVERYWHERE! My joints always hurt…but it got WORST than it ever did this time! So I went to my Rheumy, she ordered more blood tests, also gave me a week of Prednisone 20mg QD & she called me today for a follow up. She asked how I felt today compared to last week from scale to 0% to 100% improvement. I honestly said that my Elbow which is my most affected joint has NOT changed, my ankles feel about 20% better coz I can stand on them about 1-2hrs longer than I used to last week. So she starts saying that my “CRP & ESR were only over the norm a few points so not really indicative of AutoImmune Disease” plus the fact that I “did not feel better with the week of Pred which usually proves it’s not inflammatory of nature” so she said she doesn’t feel she needs to do any further tests & follow up as it is not in her scope & I should just see my PCP so I can be evaluated to find out why my joints ache & swell as she is ruling out Psoriatic Arthritis. Now she believes that my Swollen Elbow is Tendonitis that my PCP can address when I see him. Now, This is the same Rheumy who gave me handouts last week stating I should read up on Enbrel & Methotrexate so I can learn more about as she is considering putting me on either one to help control my symptoms! Now, I AM TOLD I NO LONGER NEED TO SEE HER AS SHE IS NOT CONVINCED THAT I HAVE AN AUTOIMMUNE DISEASE that she needs to treat but to be addressed by my PCP.
My skin is still symptomatic. My joints hurt— (L) elbow, (L) knee, bilateral wrists & Ankles, ® shoulder hurts. My pain is worst upon waking up. It gets better by mid day. With the recent prednisone, I couldn’t sleep more than 3hrs, then I’m up! Now I’m just supposed to stop my Prednisone! Not even told to taper off! How about that?!?
Okay, vent over! I just had to let it all out or I’ll burst! Thank you all for your time!
Find a new rheumy. They shouldn't be going just by numbers. There are people, including myself, who have never had elevated numbers. I wish you luck with this. I know it's not always easy to find a rheumy, but you need someone who will listen to you, and go by physical exam, history, etc. Not just bloodwork.
Hannah, you will be better off with a new rheumy. One of the quirks of this disease is that in up to 50% of patients, inflammatory markers are normal, or only slightly elevated. (That comes from the book I recommend under BOOK REVIEWS). Start looking for your next rheumatologist asap.
Sorry this happened to you, and I hope the vent made you feel a bit better.
Oh dear! I am so sorry that you had to experience that. I have had my share of poor treatment by Rheumatologists, so I understand a little of how you may be feeling. Take a day to feel sorry for yourself and be P.O.d at the crappy rheumatologist. Then get moving to finding another. Your PCP should be able to help with the taper. Tell her what happened. You DID respond to the first taper!
Anyways, my labs have rarely been raised, and there are times when pred doesn’t work for me.
Remember that you are NOT alone. Plenty of us here have had similar experiences, and have so much empathy for you. We are here to support you.
Just another rheumatologist who doesn’t want to treat a patient without any measurable data. Even if an MRI shows inflammation, it might still be difficult to prove active diseases vs permanent damage. Not your fault. Find another doctor to treat you like a human being.
Grumpy, you’re right about responding/not responding to the prednisone, but it’s better coming from a nurse who has more experience with more meds than I do! I think one of the problems with some rheumatologists is that they regard PsA as basically the same as RA, but less destructive. So a lot of stuff gets overlooked or misinterpreted (like the inflammatory markers). In some respects that’s true, it has similarities to RA, but to get a good diagnosis, I think the practitioner really needs an in-depth knowledge of PsA as a disease separate and distinct from RA.
PS case in point for inflammatory markers. After I was diagnosed with Psa, my hip got trashed. My GP said it wasn’t PsA, but OA, on the basis that my inflammatory markers were hardly elevated. When I had the hip replacement surgery, though, the inflammation in the hip was so bad that I almost bled out when they cut the bone. That extreme PsA inflammation did not show in my blood work. Strange disease, this.
I’m going to make the argument that simply don’t feel comfortable treating someone based solely on patient input. Medicine is driven by assessment and patient input. They assess and prescribe the medication. PsA can be a strange disease - very little to assess.
Sure, some doctors don’t believe in PsA…
I wouldn’t worry about this too much - just move on. Her use of prednisone for a diagnosis was crude and potentially harmful Not something a experienced doctor would’ve done.
I agree, Mataribot. My first rheumatologist assessed me pretty much entirely based on finger and toe joints, and on blood work. By the numbers, so to speak. Her conclusion was “mild”. At the PsA research clinic in Toronto, it was 90% about me, my story, and my symptoms, and, like, 10% fingers and toes. Their conclusion: severe. It really is a devilish disease to figure out, and you have to find a rheumatologist who has a very broad understanding of it.
Apologies to anybody who has read this part of my story many times before, but I think it is a good example of the difficulties of accurately assessing PsA.
Hannah, this one's the medical equivalent of "bad boyfriend syndrome". Her dumping you saves you the trouble of dumping her, which is where this was headed anyway.
The field of rheumatology seems to have its share of clueless practitioners. It also has some really great ones, and I hope you get one of those next time. I sure wish there was a directory of rheumatologists who have some experience with PsA. It does seem to confound too many of them. Could your dermatologist recommend someone? It sounds like he's got his head screwed on straight.
My words exactly, my numbers have never been elevated except for my ana being positive. My rhuemy said that is she went purely by my labs and never physically saw me she would say I was a wonderfully healthy middle aged woman. Find another Rhuemy.
Stoney said:
Find a new rheumy. They shouldn't be going just by numbers. There are people, including myself, who have never had elevated numbers. I wish you luck with this. I know it's not always easy to find a rheumy, but you need someone who will listen to you, and go by physical exam, history, etc. Not just bloodwork.
By strict diagnostic criteria, a diagnoses of PsA of the would be difficult. Your mix of bilateral and asymetrical symptoms is not consistent with PsA. ESR and/or CRP levels would change with as much predi as you had (they don't look at just norms) Just because they don't always elevate with PsA doesn't mean they don't for many other forms of inflammatory disease. A four day burst should have changed something. If nothing else, you should have had a major flare of P when quitting. Your rheumy was looking at many possibilities.Getting a new Rheumie is obvious this one believes you can be better treated by your PCP and Dermatologist at this time.
That isn't bad advice and a lot less stressful. Any treatment the dermie does will also treat PsA if that is your problem, and frankly if your elbow is as acute as it sounds it should be treated by an an acute care doc anyway. There is no need to suffer while trying to find a rheumie. There is nothing going on with you that can't be better treated by your skin doc and PCP. Please don't get into a rush to find a rheumie. Take your time and do your homework. In the meantime work with your dermie and PCP and referals as necessary.