I need input from others to determine if I should see another rheumy or continue seeing my current doc. After years of fibro pain, spondylosis, neck pain, psoriasis occuring on my toes, toe nails and knuckles on one hand. I went to a rheumy and asked to be assessed for PsA, my pain has worsened in the past year to include hip, feet fingers, ankle, knee lower back and shoulder joints and muscles. He took blood and did x rays of hands, feet and lower back. He said I have mild to moderate osteo arthritis and increased inflammatory markers that show that I have possible auto immune issues but he has "seen worse" in other patients. His plan is to put me on osteo- arth meds. He wants to wait and see if I improve since I don't have joint damage on x rays that would occur from PsA. I am somewhat confused because everything I read points to the fact that my history is pointing towards PsA. I am wondering if there is anything else I should have done to confirm a positive diagnosis. I just don't want to miss something and be sorry down the road. I seem to have flares often I can't walk well and have pain and very slight swelling in my hands and feet along with constant pain in my neck and shoulder. I am 52 and feel my symptoms are severe for osteo arthritis. Thanks for any pointers you might have.
Best thing you can do is find a doctor that you are comfortable with. If you feel he's putting you off till you get worst, find someone that will listen to you now!
A second opinion seldom hurts the situation. I agree with Shutterbug - find a doctor whom you feel listens to you and takes your thoughts into consideration. You know your body best.
I would look for another doc who isn’t waiting to see joint erosion first before he treats you…my doc explained that the whole idea was to treat PsA as soon as possible to prevent bone damage and disability. The only damage I have is to my shoulders…pain I had for years before diagnosis. My hands and feet were very painful for a few months and showed no erosion on xrays although there is calcification of some tendons. When I asked advice about starting MTX from my GP I was told it was either take meds or risk being crippled.
You will need to have the sort of relationship with you Doc where you can trust what they say, be honest with and who will listen to you. Saying he’s “seen worse” is not appropriate in a consultation that’s about YOU! If you’re not happy with him have a look around, at the end of the day I wouldn’t want to wait until I had extensive bone damage before I received proper treatment.
Good luck
Definitely get a second opinion even if it is to assuage your mind. The response may be the same, however if you are in doubt with your current Dr, then don’t wait for joint damage to occur.
Im going thru the exact same thing, your story very similar to mine, same areas of pain. rheumy gave me a 2 wk dose of prednisone & it helped alot, total difference but she told me its fibromyalgia & tendonitus. Derm wont diagnose me with psa but had me on 6 (2.5) mtx tabs for p and really didnt do much for psa or p, so she raised it by 1 tab. Been 3 mos. P is 80% clear but joints still hurt. Will see rheumy again on wed. She said she was curious if Mtx would help. None of the anti inflammatories worked for me either. I will be reminding her that the prednisone helped. Shouldnt that be a sign?? I say go get a second opinion, i am if i dont get anywhere wed. I dont want to be crippled.
Absolutely, withour question seek a second opinion. Best of luck.
I am so sorry for your pain. You should not be suffering like this! I agree with previous posters that you definitely do not want to see joint damage before you start treatment. You want to get on a disease modifying drug BEFORE there’s damage. Any damage that can be seen on plain X Rays is too much damage, because X Rays aren’t very detailed images. Different people present with different symptoms, but your symptoms sound a lot like others’ with PsA. Find a new doc pronto! Hoping you have better days soon. God bless.
I believe fibro is just a catch phrase for "we don't know what is wrong" It is so frustrating! I have always been pretty cautious when it comes to taking medications. I try to deal and have been dealing for 15 years with pain by getting acupuncture and doing yoga. I have had tendonitis and took prednisone, it does work great short term. Were you diagnosed with psoriasis recently? My current rheumy looked at my path results from the biopsy of my toe which my podiatrist said was positive for psoriasis 2 years ago and the rheumy is discounting the findings. It is infuriating to finally get a diagnosis and then have another doctor take it away without a clear explanation. I am seeing the nurse practitioner to go over all the test results tomorrow. I believe they are going to tell me to take aleve, like I haven't already figured that one out! Any ways good luck to you, I am sorry for your situation but it makes me feel a little less crazy to hear you voice the same concerns!
Dee said:
Im going thru the exact same thing, your story very similar to mine, same areas of pain. rheumy gave me a 2 wk dose of prednisone & it helped alot, total difference but she told me its fibromyalgia & tendonitus. Derm wont diagnose me with psa but had me on 6 (2.5) mtx tabs for p and really didnt do much for psa or p, so she raised it by 1 tab. Been 3 mos. P is 80% clear but joints still hurt. Will see rheumy again on wed. She said she was curious if Mtx would help. None of the anti inflammatories worked for me either. I will be reminding her that the prednisone helped. Shouldnt that be a sign?? I say go get a second opinion, i am if i dont get anywhere wed. I dont want to be crippled.
Yes, I had a diagnosis from a podiatrist 2 years ago who biopsied my toe skin and toe nail, it was positive for psoriasis, I also have dry red callused skin on my right knuckles which just began in the last 6 months. My knees are very dry and silvery looking but not red. I think the psoriasis is worsening along with the pain. Maybe I will go to my dermatologist and see what she thinks, I never really thought of that because I see her for cosmetic type issues. But she is very thorough, I will call her this week. The rheumy I went to is trying to down play the psoriasis diagnosis that the podiatrist gave me , even with a positive biopsy. This doc would rather label me with lupus when I don't have a positive marker or any other signs of lupus other than an increased antibody level in my blood which could be caused by any number of issues. It is seriously mind boggling trying to keep it all straight! I have a medical background and am very guarded when it comes to doctors, you are right about being your own advocate. Although at times I give up trying to get answers since it costs money and gets me nowhere fast!
mimiB said:
I am so sorry you were dismissed ! have you tried a course of prednisone to see if it helps you ? This was one of the things my rheumatologist used to see how quickly I would respond. I have completely normal blood work. It has taken me 6 months to get a diagnosis of PsA, 6 visits with this rheumy and 2 consults with dermatologists. I am now on methotrexate and 7.5 mg of prednisone daily. Let me also say that I suffered from what was thought to be fibromyalgiqa and trochanteric bursitis for 4 years before I was referred to a rheumatologist. I believe I have had PsA for at least that long.
One thing I have learned is be your own advocate ! Be the squeaky wheel ! Early and aggressive treatment is crucial to your health. Have you considered seeing a dermatologist to look at your nails ? That is the only symptom of psoriasis I have...nail changes.
I just went through the exact same senario. Wow. I had friends, this group, family, and counselor encourage me to get a second opinion as I was too discouraged to. I did, and within first visit got the prescription I hoped for. The psoriatic arthritis started in the tendons in my feet, i believe. It's been over a year and a half since I've been able to walk my dog without pain for days. I lost my job that I had had for over 10 years due to pain and disability. I hope to be much better when the cold kicks in up here in Idaho. I started with an older doc who had years of experience, and a young doc who is just out of school, and up on the latest research, meds, treatments, journals, etc. I went with the young guy. Good luck to you and I hope you are well soon.
If I were you, I'd get a second and/or third opinion. I strongly believe that no doctor knows it all. PsA is not a common disease, and some doctors never had a case to easily identify it. Some drs. deal with it regularily, and can identify it immediately when they see you.
I saw a dermy once that said that they usually deal with minor skin conditions and some skin cancer patients. That is what is common. Psoriasis and PsA may require of some dermys who deal with diseases and not-so-common ailments.
Hey, coming from a teacher (me), doctors can copy on tests as well as anyone else. Trust me, they do NOT know it all.
Well at least in sounds like you have a good rheumy, I think my dermatologist will at least listen and do her part to help. It was a good idea that I got from reading your post to maybe check with my derm. I go mostly to vanderbilt docs so they have a system where anything that you get done from a Vanderbilt doc is accessible to anyone in the system. Otherwise I know how painful it is to try to get records, why is it so difficult! When you have health issues and go to docs often you realize what a mess and how time consuming it is when office staff and doctors cannot follow through.
mimiB said:
PsA has enthesitis as a clinical feature. So when a patient presents with signs of psoriasis and bursitis and or tendonitis, you would thing a light bulb would go off in their heads ! Maybe they need a cast iron skillet. DUH ! Oh, and about the dermatologists I visited ....would you believe that neither one of them sent a report to my rheumy, even though I specifically asked them to ? The rheumy told me that if he had to drive over there, himself, to ask for it, her would ! He could not believe that they both dropped the ball.
What you said, is soooo..... true! Thanks.
Gelita said:
If I were you, I'd get a second and/or third opinion. I strongly believe that no doctor knows it all. PsA is not a common disease, and some doctors never had a case to easily identify it. Some drs. deal with it regularily, and can identify it immediately when they see you.
I saw a dermy once that said that they usually deal with minor skin conditions and some skin cancer patients. That is what is common. Psoriasis and PsA may require of some dermys who deal with diseases and not-so-common ailments.
Hey, coming from a teacher (me), doctors can copy on tests as well as anyone else. Trust me, they do NOT know it all.
I would definately get another opinion. If you have some type of skin psoriasis the odds are that you are more likely to have PsA.
Trouble is it is not that easy to diagnose as there is no specific test. My toes swelled up and that only relates to PsA otherwise I wonder wether I would have a diagnoses of PsA. I was sure that my pain was more than Osteo as people with Osteo seem to be able to get this under control with meds so much easier.
Go with your gut feeling!
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I am a firm believer in 2nd opinions. We searched every avenue before deciding on the recommended medications. The first rheumy diagnosed my daughter with RA (at age 20) - then the second one diagnosed her with PsA. She continued to go to the first rhuemy with the new diagnosis, which he accepted. He never seemed to care or take an interest in really helping Lauren through this journey. We were impressed with the hour long discussion the 2nd rheumy gave her - and the care she took to explain Lauren's options for treatment. Needless to say, Lauren has moved home just to be under that 2nd rhuemy's care and get a handle on her disease. I am looking forward to Lauren finally getting some real care from someone who does care.
The osteoarthritis markers are different than those for PsA and ARE recognizable on x-rays. Increased "inflamatrion markers" from blood work while indicitive of some type of autoimmune disorder are generally NOT elevated with PsA. While you may have PsA, you DO have every indication of osteo.. "Swelling" is not the word usually associated with PsA (or spondy) its different than inflammation. Sswelling IS a part of OA. The initial treatment for BOTH is identical, except there are a number of things that can be done for the joints with the osteo treatment. If I read your initial post right he said he was going to START and see how you respond. Treatment is a process, based on experience as well as some diagnostic criteria, while self Dx based on reading the internet is helpful, its not a substitute. Its possible (trust me to have BOTH)
A second opinion is a ll well and good but it is an opinion with no more basis in fact than the first opinion. If you are anywhere near age 40 you probably have OA anyway, its not going to HURT to treat it,m and you might even feel better. Even those of us that clearly have PsA age and get the problems associated with it. I'm not disagreeing with all the other posters, but I just caution you to calm doen and a go a step at a time. I fyou can get relief ANY OTHER WAY than PsA treatment for gawds sake do it. The treatment for PsA changes your life SIGNIFICANTLY.
It is fully possible that your primary issue is osteo-arthritis. Not everyone who has psoriasis develops PsA. My husband is a perfect example. He's been treated for psoriasis for years, with it all over his body, and no arthritis. I have patches on my elbows and knees, and have PsA.
I have also been developing osteo-arthritis on top of the PsA. While inflammatory arthritis can be a contributing factor to osteo, there are other factors as well. I wish you lots of luck with this. With no joint damage, as long as your progression isn't extreme, it seems reasonable to try out treatment for osteo first.
I am not a fan of medication and have been dealing with my issues for years with alternative medicine. I have a very high tolerance to pain, so when I started having issues with walking and every joint not muscle in my body continuously aching and also with the diagnosis of psoriasis I started wondering if there is something else going on. I completely agree with you about starting meds and that is why I am trying to use diagnostics to help me decide what to do. At the moment my game plan is to drastically change my life style and go back to eating gluten, dairy and soy free. I am going to hire a personal trainer/ nutritionist to help me come up with a plan since group classes do not work for me due to all of the restrictions I have. Due to aevere pain and depression over my pain I did what I guess is stupid and normal but stopped taking care of myself and I have gotten much worse. I am back to massage, acupuncture and upper cervical care. I will listen to the nurse practitioner today and decide if I want to try the meds they are offering, depending on the side effects. I really try not to even take aleve, chinese herbs have worked in the past so I am going to go back to that. I plan to keep a close eye on my symptoms and proceed with a second opinion if I continue to worsen. I agree with you that the chance of being told the same thing as the first doc is very possible. I have a little different perspective on disease and believe that there is a place for pharmaceuticals but in general disease is called by an imbalance and if you can correct it and change certain factors you will rebalance your body and won't have a need for drugs. Like everything I practice this with informed opinions from health professionals as well as alternative medicine practitioners. Thank you for your thoughts and warning about jumping into a diagnosis.
tntlamb said:
The osteoarthritis markers are different than those for PsA and ARE recognizable on x-rays. Increased "inflamatrion markers" from blood work while indicitive of some type of autoimmune disorder are generally NOT elevated with PsA. While you may have PsA, you DO have every indication of osteo.. "Swelling" is not the word usually associated with PsA (or spondy) its different than inflammation. Sswelling IS a part of OA. The initial treatment for BOTH is identical, except there are a number of things that can be done for the joints with the osteo treatment. If I read your initial post right he said he was going to START and see how you respond. Treatment is a process, based on experience as well as some diagnostic criteria, while self Dx based on reading the internet is helpful, its not a substitute. Its possible (trust me to have BOTH)
A second opinion is a ll well and good but it is an opinion with no more basis in fact than the first opinion. If you are anywhere near age 40 you probably have OA anyway, its not going to HURT to treat it,m and you might even feel better. Even those of us that clearly have PsA age and get the problems associated with it. I'm not disagreeing with all the other posters, but I just caution you to calm doen and a go a step at a time. I fyou can get relief ANY OTHER WAY than PsA treatment for gawds sake do it. The treatment for PsA changes your life SIGNIFICANTLY.
tntlamb, I value your posts so much. Can you elaborate what the statement "the treatment for PsA changes your life SIGNIFICANTLY" ?
tntlamb said:
The osteoarthritis markers are different than those for PsA and ARE recognizable on x-rays. Increased "inflamatrion markers" from blood work while indicitive of some type of autoimmune disorder are generally NOT elevated with PsA. While you may have PsA, you DO have every indication of osteo.. "Swelling" is not the word usually associated with PsA (or spondy) its different than inflammation. Sswelling IS a part of OA. The initial treatment for BOTH is identical, except there are a number of things that can be done for the joints with the osteo treatment. If I read your initial post right he said he was going to START and see how you respond. Treatment is a process, based on experience as well as some diagnostic criteria, while self Dx based on reading the internet is helpful, its not a substitute. Its possible (trust me to have BOTH)
A second opinion is a ll well and good but it is an opinion with no more basis in fact than the first opinion. If you are anywhere near age 40 you probably have OA anyway, its not going to HURT to treat it,m and you might even feel better. Even those of us that clearly have PsA age and get the problems associated with it. I'm not disagreeing with all the other posters, but I just caution you to calm doen and a go a step at a time. I fyou can get relief ANY OTHER WAY than PsA treatment for gawds sake do it. The treatment for PsA changes your life SIGNIFICANTLY.