I am so confused! I have had this on and off joint pain for 13 years now, but this flare the last 4 moths have been unbearable. I am usually able to manage the pain with drugs, but now I am in a panic because suddenly I am in so much pain it is unbearable and scary. I scarmbled to find the right rheumy, but I am having bad luck. The first one gave me a bottle of steroids to take as needed, then the next one said OMG steroids can't be perscribed that way, but this doctor was also rude and walked out on me mid-sentence after less than 5 minutes of talking to him. He was very cold and didn't give me nearly the time I deserve. Geez, it costs $250 and he turned his back on me after 5 mintures!!! I went to UCLA to a highly recommended doctor, but he sent me away saying he didn't think it was PA at all because I have no visible swelling and nothing turned up on the xrays. He thought it was celiacs, but I can't check through a blood test because of an immunodeficiency I have. Then a doctor said don't waste your time going after celiacs because this looks like RA. I am so confused and my steroids are running out. I have been on them for 4 months, so I know it's time to come off, but I am stressing about that. It is the only way I can function! No one is able to diagnose me, and I don't even know what doctor to see now. I am a little picky about finding a doctor right now because I need some serious help. I don't want to be shoved out the door. I am suffering bad and need help. You know how it is, when you are healthy and happy you'll see whoever for the little nasal infection or whatever, but when something is seriously wrong with you that cold doctor that makes you feel like a huge burden because you have 4 whole questions just won't do. I live in Los angeles if anyone knows a good rheumy. Anyone have so much trouble diagnosing. I don't know what to do!!!
I was misdiagnosed for 10 years. No visible arthritis on xrays and no visible swelling. Had to get through 4 rheumys before I finally found someone who put me on Humira and then switched to Enbrel! What a difference! Good luck! Hang in there and follow your gut. Dont settle for poor care.
I am so sorry! I don’t live in LA and cannot recommend a Rheumy, but I will be thinking of you and praying for you. I, too, live in daily level 10 pain…my question is this: have you had a doctor look at your CRP levels? They should be less than 10 mg/l…mine range from 30 to 50 , and I am sure others is much higher. It shows inflammation. It proves you are suffering! This can be the start of a pain management program. Good luck.
wonderful post, this will help a lot of people too.
I go to a Rheumatologist in Corona. It’s about 45 minutes to an hour from where i live but I love him because he gave me the right diagnosis and listens to me. He increased my medication which is more appropriate for PsA and wants to start me on a biologic. I used to see one 5 minutes from my house but she didn’t do anything for me, so it’s worth the drive. He might be too far for you but if you’re interested his name is Attia.
Can't help you as I live in Cda. But I can sympathize with you. Fifteen years ago I walked into my family doctor's office, with joints wrapped, limping, and running a temperature...a fever I continued to have for a few years, more or less. I also had a small coin shaped skin irritation on my arm which I also showed the doctor which I now know was psorisis. Went through a gamut of blood tests which all came negative. My doctor basically told me nothing was wrong with me, that I was healthy, and that the joint pain was probably due to stress!!! She didn't say anything about the fever though. Of course things progressed for quite a few years and thought I was going crazy. Two years ago I was diagnosed with psoriatic arthritis. No surprise there. One only has to look at my fingers now (deformed a bit) and skin problems. Must say though I'm not in much pain anymore. Stiffness is always there in the morning for an hour or two but other than sporadic days of pain, I feel fairly good. Exercise is essential though, at least for me. Helps with the pain/discomfort. Hurts a bit at the beginning but the pain really eases. And avoidance of stress. Now that's a hard one. Still trying to deal with handling stress. I've been relunctant to take meds but I don't know now. My skin is a mess - breakouts on both hand as well as on my leg.
Wishing you all the best
Be VERY careful not to stop your steroids cold turkey! You need to titrate yourself down over several days, if not weeks, depending on how high of a dose you are on and how long you have been on them.
A rheumatologist needs to be the one to diagnose PsA. The gold standard for dx is the 'sausage digit' - where one of your fingers or toes swells up so badly that it is hot to the touch and turns purple. Yuck!!
Psoriatic Arthritis does not have any definitive blood test, however, as mentioned before the CRP, or the ESR "sed rate" are markers for inflammation, AND Psoriatic Arthritis is known as a seronegative autoimmune disorder with a marker on the MHC B27 (fancy letters and numbers for antibody testing). It's still basically the same as Rheumatoid Arthritis but it has a negative RA factor.
Most drs will start you out on anti-inflammatory meds and/or prednisone to manage the inflammation.
Next they would start on the DMARD - disease modifying anti-rheumatic drug - like Azulfidine.
Then they will bring out the bigger guns of the biologics - Enbrel, Humira
My main concern for you right now is managing the use of the steroids you've been given.
If you are unable to find a rheumatologist who cares enough to see you, let them know that you are about to run out of your steroids and what do they recommend. I *think* legally, if they know you are on steroids and about to stop cold turkey, they will be responsible for your care if they *don't* do something to intervene. Check that out before quoting me please. (I just know that if I were to refer a patient to the ER and they didn't go, *I* am the one responsible for their care of getting them there.)
Another option might be to go to your PCP and keep asking for referrals, or at least get your PCP to monitor your use of steroids (I'm assuming it's prednisone) and perhaps do the necessary blood tests to bring with you when you do see a rheumatologist.
Best wishes!
Fantastic info…can it be PsA without the sausage finger? I have inflammation and pain…stiffness…and psoriasis, but no red or hot joints.
Yes Amy you can have PSA without sausage digits. I was diagnosed about 9 years ago without digits swelling. But now when I get bad I have a few toes swell.
Hi LC,
I checked our Dr referrals on 3 different BF groups, with no luck, but I did post on the Lupus and Fibromyalgia sites to see if I can find http://www.justaskanurse.net/you a good Rheumie in LA. Hopefully this idea will be a success.
http://www.ra.com/find-rheumatologist/search.aspx?cid=ppc_ppd_hum_ggl_rheum_7751
http://local.yahoo.com/CA/Los+Angeles/Health+Beauty/Doctors+Clinics/Rheumatology
http://local.webmd.com/local/california/los-angeles/rheumatologists.htm
Here are some other options, but will let you know if anyone responds. Hoping I can help!
Wishing you well,
SK
Amy, my sausage finger does not turn red or purple and it's not warmer than the rest, but it is humongous!
LC, I heard a person once say that when you don't get satisfying answers from a Dr., just keep searching-seeing other drs. until you find one that gives you the answers you need, or make you better. I went to Mayo Clinic and Cleveland Clinics here in Florida and they did not have answers. The best answers I heard were, "I know there is something wrong with you, but I do not know what." I kept searching, trying different drs. and treatments, until I found the right team of drs. with the right dx and treatment. It did take a while and a lot of resources I did not have, (a lot of copays) but I still kept trying. I chose not to give up. I did not have a support group then, as I do now. You have us now 24/7.
Do not dismay. Have faith and keep making appointments. I used dr. referrals, online near my house (read their comments), phone books. Use networking-tell your family and friends of your need for a good Rheumy. I searched for a dr. online at the AMA (American Medical Assoc.), who referred me to his best Rheumy student. He is my dr. now.
LC,
Cynth has given you some crucial information in her response. Absolutely do NOT try to stop steroids suddenly; the dosage must be taped down slowly. Steroids such as prednisone depress the activity of the adrenal glands, and you have to let the adrenals "wake up" slowly. Not only can it be very uncomfortable to stop steroids suddenly, it can be down-right dangerous. The time involved to get off steroids will vary by the amount being used, and the length of time you've been using them.
One of the most frustrating things about PsA is the lack of definitive tests that prove its presence. There is no single blood test or x-ray that diagnoses this illness. Sometimes, it's a diagnosis of exclusion (rule out other stuff, must be PsA); other times it's the clinical picture (which joints are involved; the time of day the pain is worst; how much stiffness is experienced; are joints swollen intermittently on both sides of the body, or are the same joints on both sides swollen at the same time; visible psoriatic lesions). Most doctors will evaluate a combination of these factors, plus the medical history of both you and your family.
It can be extremely difficult to find a rheumy who is a good fit. I probably went through five or six over the years until I found my current doctor, who is wonderful. (Unfortunately, she's in WV, which is no where near you.) When I first began to have symptoms, many doctors I saw had never even heard of PsA. That was plenty discouraging. What I learned from discussion forums such as this one, is that for many (if not most) of us, it sometimes takes years and lots of sleepless nights before a diagnosis is finally reached.
It's a tough job changing docs--it's expensive, time consuming and frustrating. But, so is staying with a doctor who isn't helping you. If you give up, you don't give up on them, you give up on YOU. Hang in there and keep reminding yourself that YOU are worth it. There's no point in paying someone to compound what's already a bad situation.
I wish you the best in your search for a doctor who will show competence and compassion. I also hope you feel better soon. Keep us posted.
I agree.
Byrd Feeder said:
LC,
Cynth has given you some crucial information in her response. Absolutely do NOT try to stop steroids suddenly; the dosage must be taped down slowly. Steroids such as prednisone depress the activity of the adrenal glands, and you have to let the adrenals "wake up" slowly. Not only can it be very uncomfortable to stop steroids suddenly, it can be down-right dangerous. The time involved to get off steroids will vary by the amount being used, and the length of time you've been using them.
One of the most frustrating things about PsA is the lack of definitive tests that prove its presence. There is no single blood test or x-ray that diagnoses this illness. Sometimes, it's a diagnosis of exclusion (rule out other stuff, must be PsA); other times it's the clinical picture (which joints are involved; the time of day the pain is worst; how much stiffness is experienced; are joints swollen intermittently on both sides of the body, or are the same joints on both sides swollen at the same time; visible psoriatic lesions). Most doctors will evaluate a combination of these factors, plus the medical history of both you and your family.
It can be extremely difficult to find a rheumy who is a good fit. I probably went through five or six over the years until I found my current doctor, who is wonderful. (Unfortunately, she's in WV, which is no where near you.) When I first began to have symptoms, many doctors I saw had never even heard of PsA. That was plenty discouraging. What I learned from discussion forums such as this one, is that for many (if not most) of us, it sometimes takes years and lots of sleepless nights before a diagnosis is finally reached.
It's a tough job changing docs--it's expensive, time consuming and frustrating. But, so is staying with a doctor who isn't helping you. If you give up, you don't give up on them, you give up on YOU. Hang in there and keep reminding yourself that YOU are worth it. There's no point in paying someone to compound what's already a bad situation.
I wish you the best in your search for a doctor who will show competence and compassion. I also hope you feel better soon. Keep us posted.
There is a classification of PsA that I found recently, its in one of my blogs( Psoriatic arthritis the facts) The classifcation is called CASPAR (ClASsification of Psoriatic ARthitis). It was born from a study in 2006 …the easiest way to find it is to either google it or look on medicalcriteria.com. It may help
Dr Daniel Wallace, Dr Bluestone at UCLA.
Another Lupus member is giving rave reviews for Dr Wallace, affiliated with UCLA and Cedar Sinai.
Also one for Dr Nathanial Neal in Long Beach.
Another Lupus member recommends Dr Chitra Bhakta in Santa Ana on Tustin Ave. She has a thriving family practice and is highly recommended.
Hi LC,
Is the joint pain localized? Is it in one joint or systemic to many joints? If localized then try going to a physical therapist and ask for an "interferential treatment". Note this is not "tens" but much stronger. You should find relief in the joint in less than 5 minutes with no use of meds. If so a P.T., Chiro., ATC as well as any good pain clinic using electrotherapy may help you in those very painful time periods.
Good luck.
I was thinking about this last night.
When you do go to see the rheumatologist, be sure to have everything documented on paper and give this to the physician.
List the dates of pain, when it started, what you've done to try to alleviate the pain, what worked, what didn't work, how long did the pain last... list any other symptoms that may be related to the pain such as gastrointestinal distress, mental function, headaches, intolerance to temperature changes... anything at all. Don't worry about coming across as a hypochondriac - this will show in black and white what you've been experiencing and you will have the clarity of documentation instead of trying to state your story over again and leaving out pertinent information.
List out what other physicians have tried (such as your course of steroids) and any blood tests and lab results. Just make a notebook of your health care.
I hope this helps.
Another recommendation for Rheumatologist in LA area
Samy Metyas, MD
150 N 3rd Ave
Covina, CA 91723
626-■■■■■■■■