That's the problem throughout the US - Rheumatologist tend be all in one practice. No point in switching. My dermatologist treats my PsA better than my rheumatologist.
I totally agree with Michael and Shelly that Lamb’s is an excellent post, and essential reading. But I think there is another angle to this: if a patient walks away thinking “The doctor hasn’t heard me, and doesn’t want to help me”, then I don’t think the doctor has done all of his/her job. The rationale for not changing meds or intervening in some other way may be ethically sound and medically correct, but if the patient hasn’t understood why it is the way it is, then the doctor has missed an essential part of the process. Despite all of his/her technical expertise and medical competence, they haven’t finished the job.
I don't disagree with you Seenie but Patients don't hear what they don't want to hear or aren't ready to hear. Unless a patient is willing to learn (not parrot what they read from strangers on the internet as gospel) enough to ask intelligent questions in a non accusatory manner, or generally advocate for themsleves, the doctor are going to assume that if they say "We need to continue what we are doing until your next appointment" and not much follows. The patient knows all they need to know. He has no way of knowing who wants more information and who doesn't. All Rheumies have been teachers at one time or an other. No body needs stay with a doc they don't connect. Sometimes being an advocatre is as simple as saying "why" explain that to me or sucking them into the deadly questions:
One of the key questions to ask any physician, (because it really pulls at their ego, and you have to have a lot of ego to a physician) and you want something more is "Is that you speaking or your (or insurance company) quality control committee pretending to be doctors speaking?" With the right tone subtle smile/sarcasm you can get most anything you want.
One of my other favorites is to suck them into the "If it was my own spouse I would....... " comment. You answer "Yeah I've felt that way about my wife a few times too, but I've always come to my senses in time............
Wow Lamb that was very helpful I will re read it. As for the inflammation I’ve had it all over my body knees, ankle, wrists, elbows, fingers, hips. I did give the Humira a long time to work. It used to work good for me mixed with methotroxate. I know there’s a few places here that have rheumatologist in one building. I just don’t feel like he listens to me at all. I mean I don’t even want a lot of pain medication it scares me my mom had osteoarthritis and was on Loratab 10’s for 6 years her Dr never did blood work on her. She passed away a few years ago because of liver damage from them. I might need to go see a therapist and talk about depression and anxiety and panic attacks and stress.
tntlamb said:
You may be right, Although I read it several times. It was easy when I was young. There was no treatment, maybe a bottle of aspirin. We had heat, cold, and exercise. One thing also different is as you age you learn you can function with a lot more pain than you think. When you have no other options, you do what you have to. It gets better. learning to that is the tough part. Don't ever have the misconception that the right drug combo will make you "pain free" There will be some of those times for sure, but ther will be those other times as well.
I don't know what Amelias doctor's thinking is but let me offer a bit of a different perspective. there is only one major Rheumy group in the Huntsville area and they are excellent. well trained on the edge. not that that is helpful when you feel like crap.
Rheumys frequently get bad reviews. When it it involves 'mis-diagnosed." I quit paying attention. The diagnoses doesn't matter for the most part as the treatment is the same for all 100+ arthritis's. Co conditions are different and they have to think out of the box, but the last thing anybody with PsA wants or needs is a FM or similar DX unless its right. Mis diagnosed from patients is usually "code" for I want to be better and if you just give me the right disease, that will happen because there is a cure for it.
The most dangerous drug we take is Prednisone. As knowledge increases its use is becoming even more infrequent especially with young people and young women at the height of their"hormone years" damage may not be known for years. Whether you like it or not he is looking out for you. It fascinates me that patients will refuse treatment because of SE fear, but get PO'd at a doc who won't give a treatment for the same reason.
Pain medications don't work for arthritic pain. Thats not to say there isn't a place for them but they don't help most of pain and can make it worse. Very few rheumies will prescribe them and in most states a PCP is limited to between 120 - 160 morphine equivilants per year. If you have a doc who won't give them, its not becasue he is a bad doc or a doc who doesn't care.
Now the tough one.... My biologioc 'isn't working" Pain doesn't mean the biologic isn't working. In the newbies section there is a chart of the enthesitis points. If there is no evidence (or scant evidence) of active inflammation, no ethical doctor will change Biologics. These are not pain medications, the y are designed to alter one part of the immune response. They can be working very well and you still may have a lot of pain. Changing without strong evidence of active inflammation is considered unethical. The new med can take 6 mos to work and the only has 50 50 chance (at best) of working. You are subjecting a patient to a lot of risk with no good reason.
Inflammation may not be what you think it is. Your doc is looking for systemic inflammation because the biologics are systemic drugs. Your big toe may be so inflamed you can't get a shoe on or walk. In fact all five of you toes may be inflamed. That isn't systemic inflammation, he won't change meds (voltaren is a good option) He needs 3 widely separated joints on the same side of the body, five on both sides, or elevated ESR or CRP. You may not know this but he does have rules to follow.
The reason we take NSAIDs in addition to a biologic is to take care of these other areas. The reason we take DMARDs is beciase of periperal problems (bios really are best to treat axial symptoms) Unless there is strong evidence of systemic inflammation the docs will play with these meds. keep in mind if you change bios, your docs hands are tied for 3 months as to doing much of anything else. Go to another doctor for medication without his knowledge and use it without his knowledge will NOT be good. All of his work is undone. He will either blow you off, fire you or quietly try again.
A Rheumy does not treat pain, he treats inflammation. It takes months if not years for some parts of your body to recover from the effects of inflammation. Generally the only things that will have an effect on that process are weight loss, physical therapy, and changed mechanics. There may be some surgical options but that isn't as frequent as you may think. Rarely you may get reffered to pain management, who will generally NOT prescribe narcotics without physical evidence of pain, and only then after injections, blocks, physical therapy, and weight loss fail. If you have mobility aids NOT prescribed by a doctor, they will do more harm than good. pain management will take them away in most cases.
Now this may or may not apply to anyone here specifically but I would suggest you digest it read it several times and at the very least consider it as a base for questions/discussion with your doc.
Also ESR and CRP very much are important measures. They may never be abnormal but over the course of your treatment they will vary enough to be a very accurate barometer as to whether or not your inflammation is systemic.
Incidentally unless you are a teenage boy with Chrons disease cancer is not a risk from any of our meds. Melanoma is a slightly higher risk, but everybody with PsA need checked yearly anyway.
NotGivingUpMyLife said:I think being young with PsA is detrimental to our treatment. Which is the worst thing to risk with more years then most ahead of us to fight this disease. We also seem to be more apt to avoid going in for a few years, which means uncontrolled joint damage. I put it off for 3 years.... Luckily, my rhum has me on a biologic now, but I am still in the gap. This current flare is killing me. I can't even care for myself, let alone my kids. But yet, it's like pulling teeth to get anything to keep my pain under any bit of slight control, and therefore keep me sane. I know there are young people who do just want drugs, but you'd think the diagnosis, current visible symptoms, and obvious lack of control over the disease right now....would be enough. I'm sorry you are being treated so poorly! I also am having a hard time finding a new doctor, but I have hope for my primary care doctor to take over my pain "treatment" at least. Maybe you can find a similar arrangement until you can find a new rhum? With a diagnosis, they might even start you on a biologic.
Nothing is more harmful to a professional relationship than lie - it doesn’t matter what party it comes from. Not informing the other party of a finding isn’t any different than not telling the truth. Not telling the truth is an excuse to avoid confrontation. If the party involved doesn’t agree with a decision, they are free to take their business elsewhere.
If you want to maintain professional relationships you always tell the truth and follow through on consequences.
Amelia, it sounds like you have been through so much in the last few years. Stress can play a big part in pain, how you perceive it, and how you deal with it. I think going to see someone about your depression and anxiety and panic attacks is a really good idea. I wish your doctor had talked and listened long enough to explore that possibility with you.
I’m sending my best wishes for an easing of your pain.
I have been through a pretty good bit I know a lot of people have been through worse I just think I’m a fighter I can do this! I have my ok days like today not in as much pain because it stopped raining we all know how that feels. But I am honestly truly happy I found this group y’all have really helped me so much with the short time I’ve been on here. I try to listen to music a pretty good bit it helps a little at least take my mind off the pain especially The Beatles I’m a big fan. I do have a question though I was told that Lyrica would help with a little bit of the pain but I thought that was for people who have pain from diabetes? It would be great if someone could let me know. So much stuff in finding out that could help with PsA like diets and cutting back on a lot of sugar I’ve been drinking water and I do feel better when its not raining I’ve been eating more chicken and staying away from red meat. I think I’ll stay with my rheumatologist a little longer and try to talk to him more. Everytime I go there I have questions and he rushes out of the room so I have to call the nurse later on or if I see her and ask her the questions I had. I have insomnia I hardly ever sleep and I talked to them about it all they said was just go to the store get some over the counter sleep aids I did and nothing happened. Maybe I’ll be able to sleep better when I get on something for the arthritis. I’ll look into seeing someone about a lot of the problems I have. I’d rather not take anymore medication than what I’m already on 2 Humira shots a month 8 methotroxate a week 4 ultram a day 2 voltaren a day and 1 folic acid a day. I should get some more vitamins and take those too. Anyone try acupuncture?
Seenie said:
Amelia, it sounds like you have been through so much in the last few years. Stress can play a big part in pain, how you perceive it, and how you deal with it. I think going to see someone about your depression and anxiety and panic attacks is a really good idea. I wish your doctor had talked and listened long enough to explore that possibility with you.
I’m sending my best wishes for an easing of your pain.
Amelia! The Beatles? That music is really old, just like me … I love the Beatles too!
It sounds to me as if you are really thinking out of the box for how to get yourself functioning better. That’s great. Have you seen the complementary therapies section of the site (under discussions?) Bear in mind, complementary therapies are just that – they complement the medical treatment which is the only thing proven to slow the progress of this disease. If you are wondering about acupuncture, put that in the small search bar at the very top of the page and do a search. You might also look up our resident acupuncturist, robsamben, who is happy to be a resource to us.
A suggestion for your next visit to the rheumatologist: write your questions down, and take them in with you. You could even tell him that you have some questions, and would he mind having a look at them? Then you could use it kind of like an agenda. Or alternatively, make two copies of your list of questions, and give him one. Even maybe drop it off the day before your appointment. Take control! It’s your medical care and your body. He needs to do the job you expect him to do.
Hope this helps get you thinking!
Oh yes i love The Beatles!I grew up listening to them a lot. and a lot of rock music. i play video games and i have The Beatles rock band for my Xbox 360 such a fun game! Hmm I haven’t done that I’ll look at both! Yeah and I was thinking about making a pain journal saying keeping daily logs about my pain. Yeah I really try to think of some way to feel better I think I’m going to start taking vitamin D and fish oil. Maybe vitamin K too. Be great when my hands feel better can’t wait to play my guitar again! Oh yes a lot of stuff I found out about on here has me thinking lot!
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Seenie said:
Amelia! The Beatles? That music is really old, just like me … I love the Beatles too!
It sounds to me as if you are really thinking out of the box for how to get yourself functioning better. That’s great. Have you seen the complementary therapies section of the site (under discussions?) Bear in mind, complementary therapies are just that – they complement the medical treatment which is the only thing proven to slow the progress of this disease. If you are wondering about acupuncture, put that in the small search bar at the very top of the page and do a search. You might also look up our resident acupuncturist, robsamben, who is happy to be a resource to us.
A suggestion for your next visit to the rheumatologist: write your questions down, and take them in with you. You could even tell him that you have some questions, and would he mind having a look at them? Then you could use it kind of like an agenda. Or alternatively, make two copies of your list of questions, and give him one. Even maybe drop it off the day before your appointment. Take control! It’s your medical care and your body. He needs to do the job you expect him to do.
Hope this helps get you thinking!
Hey all I am new here. Just have to say I have learned so much already! Thought I knew a lot but clearly not :). Thanks lamb for your reply was extremely insightful!
Amelia I can definitely relate to what you are saying about your doc not listening!! I had exactly the same issue with my rheumie! I moved to a diff one but then she immigrated and I had to go back. Was very uncomfortable at first!!
My issue was that all of my blood tests would look great and to him my mobility was good too (I was a gymnast so to me my mobility was horrible). Finally after going for a scan to detect inflammation he started believing me. The scan showed inflammation in every single joint except for my one ankle.
That was about 5 years ago. I am now in the same boat again. He has become too busy and just like you I can’t get appointments or talk to him. And now after reading all of your posts I am starting to think that he’s not that great. I have been on prednisone constantly for 7 years and I am only 29!! He just believes medication. He’s solution to flares is prescribing more meds. If I mention excercise or supplements he just says ‘yeah if you think it will help go for it’.
I think making a list like the other people mentioned is really a great idea. I have noticed that when I feel the doctor rushing through my appointment that I start forgetting things. I don’t know if your doc also does that - the rushing or just makes you feel like your time is up. If so what I’ve done is to try and not let it bother me and ask my question again if I didn’t get a sufficient answer or didn’t understand it. Otherwise you walk out even more upset then when you walked in.
I have tried accupuncture in my back and it worked really well. The only issue was that I had to go regularly (weekly or biweekly) otherwise things would just return to the way it was.
Nicolene, welcome here. I’m glad that you’ve learned a lot already, and I hope that we can continue to share our collective knowledge with you.
If you haven’t already done so, please read the Prednisone article in the Newbies’ Guide. Prednisone is a very effective medication as a “stop gap”" measure, and invaluable during “The Gap”, but it really isn’t a good idea to be taking it on the long haul. I’ll let one of our nurses address that issue in more detail.
There are many complementary therapies that can make you feel better (we have a whole section of this site devoted to them), but make no mistake about it: the only treatment that has been proven to slow the progression of this disease is medication. Unfortunate, maybe, but true.
Great that you’re posting! See you around!
Hi Nicolene and welcome!
I am one of the nurses who is a mod as is Grumpy Cat. I am sure you will see us all over here.
I see you were on Humiria and Enbrel and methotrexate and Arava. Did you stop them or are you taking Prednisone in addition to them?
Most of us on here are on a Biologic (Humiria and Enbrel) a DMARD (mtx and Arava) and a NASID such as Celebrex or Naprosyn. Biologics are the only ones proven to stop joint destruction. The DMARDs may slow joint destruction and help the Bios work.
Of all the drugs we take prednisone is the scariest. Most Rheumatologists only use it to bridge the gap while waiting for the Biologics to work. The make us feel better but the joints continue to get damaged and prednisone has the most serious side effects of all the meds we take. NASIDs have the next worse side effects. Funny how people fear the biologics and they are actually the easiest on the body.
D you have the book Seenie recommends above under Book reviews? It is the best!
I would recommend you have an appointment with your Rheumie. Bring 2 copies of a list of your questions (1 for him, 1 for you) and don't let him/her leave the room until they are answered. Read them out loud to him until he answers.
When you leave your appointment make a follow up appointment for 3 months. If you try to do it by calling in they will blow you off. They are very good at that around the world!
Be sure and check out our Newbie's section. Welcome and be sure to post any questions you have; someone else may have the same question.
Hi Nicolene welcome I am too new here and thought I knew a lot about PsA just like you I was very shocked about some of the stuff I’ve learned. im sorry your dr is being like that too. i agree with what everyone else says 
they always give great advice. I tried predisone once a few years ago it did help but my dr said i couldnt be on it for long. I remember being on it and was always wanting to eat. I’m only a few years younger than you too! I remember when it wasn’t that bad I’d always say I’m not getting depressed over this but it’s really hard not to. I’ve been listening to music and closing my eyes when I’m in a lot of pain. I was actually talking to my aunt about Humira today she asked me how do you do those shots? I reply well I’d rather be in pain for 30 seconds and a little sore on my thigh than be in pain from the arthritis. It’s very true though!
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Nicolene said:
Hey all I am new here. Just have to say I have learned so much already! Thought I knew a lot but clearly not :). Thanks lamb for your reply was extremely insightful!
Amelia I can definitely relate to what you are saying about your doc not listening!! I had exactly the same issue with my rheumie! I moved to a diff one but then she immigrated and I had to go back. Was very uncomfortable at first!!
My issue was that all of my blood tests would look great and to him my mobility was good too (I was a gymnast so to me my mobility was horrible). Finally after going for a scan to detect inflammation he started believing me. The scan showed inflammation in every single joint except for my one ankle.
That was about 5 years ago. I am now in the same boat again. He has become too busy and just like you I can’t get appointments or talk to him. And now after reading all of your posts I am starting to think that he’s not that great. I have been on prednisone constantly for 7 years and I am only 29!! He just believes medication. He’s solution to flares is prescribing more meds. If I mention excercise or supplements he just says ‘yeah if you think it will help go for it’.
I think making a list like the other people mentioned is really a great idea. I have noticed that when I feel the doctor rushing through my appointment that I start forgetting things. I don’t know if your doc also does that - the rushing or just makes you feel like your time is up. If so what I’ve done is to try and not let it bother me and ask my question again if I didn’t get a sufficient answer or didn’t understand it. Otherwise you walk out even more upset then when you walked in.
I have tried accupuncture in my back and it worked really well. The only issue was that I had to go regularly (weekly or biweekly) otherwise things would just return to the way it was.
Thanks everyone. I have updated my medication on my profile so that you can see what I am on now and what I have tried in the past. Currently I am on Enbrel as biologic and arcoxia as NSAID and then also 5mg of prednisone. The lowest dose I have been on was 2.5mg of prednisone. But I have stopped taking it yesterday after reading all of your advice. My doc just keeps telling me that it would be good if I can leave it but never told me I should or any of the serious side effects. In south africa the docs love pushing drugs. I read the other day that we are one of the countries with the most resistance to antibiotics due to doctors over prescribing them. I am not taking a DMARD at the moment as my husband and I would like to start a family soon (I will post on this soon as I am very scared with all these meds to start a family). I have been of MTX for about a year now. I will definitely read all the newbie posts - my concentration levels are just at an all time low as it is winter here, and you guys know how this disease reacts towards cold weather.
Amelia I have also been listening to more and more music the last couple of months. I feel it really helps to lift ones spirits. It really sucks being so young and feeling so old (no offense to the older people on here :)). I remember when all of my friends wanted to go clubbing - I was always the one looking for a chair to give my burning knees a break, and off course they don't get it at all. I have to say one thing I have learnt was to try and keep busy as when I am thinking about my pain it's almost like it gets worse.
I noticed a few years ago music helps a little but I’ve always been a huge music fan liking anything from The Beatles to Ac/Dc kiss Nirvana Nine inch nails msi hellogoodbye falling in reverse piece the veil. I’m into so many rock bands but I grew up around a lot of it. I’m glad you stopped the prednisone! I know it can make you feel a little better but so harmful! Try to listen to music that puts you in a good mood that helps too. Oh I know what you mean being 25 I feel like I’m 80 (sorry to any older people) but I know exactly what you’re talking about with that.
Nicolene said:
Thanks everyone. I have updated my medication on my profile so that you can see what I am on now and what I have tried in the past. Currently I am on Enbrel as biologic and arcoxia as NSAID and then also 5mg of prednisone. The lowest dose I have been on was 2.5mg of prednisone. But I have stopped taking it yesterday after reading all of your advice. My doc just keeps telling me that it would be good if I can leave it but never told me I should or any of the serious side effects. In south africa the docs love pushing drugs. I read the other day that we are one of the countries with the most resistance to antibiotics due to doctors over prescribing them. I am not taking a DMARD at the moment as my husband and I would like to start a family soon (I will post on this soon as I am very scared with all these meds to start a family). I have been of MTX for about a year now. I will definitely read all the newbie posts - my concentration levels are just at an all time low as it is winter here, and you guys know how this disease reacts towards cold weather.
Amelia I have also been listening to more and more music the last couple of months. I feel it really helps to lift ones spirits. It really sucks being so young and feeling so old (no offense to the older people on here :)). I remember when all of my friends wanted to go clubbing - I was always the one looking for a chair to give my burning knees a break, and off course they don’t get it at all. I have to say one thing I have learnt was to try and keep busy as when I am thinking about my pain it’s almost like it gets worse.
it really is I just figured I’d give him a little more time since I’ve been on here learning more about PsA. Change a few stuff when I get better I wanna try yoga I heard it really helps but I’m not going to over do it. Thank you all for your support and knowledge on this wish I found this site much earlier.
sybil said:
it it reallySo hard, Amelia, to get the energy and motivation to seek a new doctor. But it does sound as if it might be worth it and if you decide to try that we'll all be here for you along the way.
Amelia said:That's what I was thinking both of them. I live in Alabama and there's not many rheumatologist outside of my rheumatologist office. It's always a nightmare just to get a appointment there! I think it is time for a new rheumatologist.