Everything is wrong. I am so frustrated and I’ve had it up to here. I dont know what to do at this point. The brief history is that I started a huge flare in late October. Went to rheum who d/c’d Humira and put me on Remicade. I will have my first full dose on Tuesday. Rhuemy went on maternity leave on Dec. 1st. Today was the first I have seen her since then. Her partners refused to see me unless it was an emergency. I TRIED on 2 occasions to make appointments. While she was gone I have had severe pain. I had no one to follow up with other than my Pmd and they had no idea what to do. I felt like rheumy left me twisting in the wind. Tried pain mgmt for2 visits and hated it. Went to PMD and she agreed to do my pain mgmt for 3 months. I can’t take prednisone as I had a nasty reaction to it. So, I have ibuprofen, Cymablta, Vicodin and opana ER for pain control. This only works so well. It’s the Remicade that needs to be fixed so I’ll feel better. The other drugs are a heavy bandaid.
So I went to see Rheumy today. I confronted her about the lack of care and how i felt abandoned. This made her unhappy and she told me “that is how practices work”. I may have said something stupid like, “by not caring for patients?” Then she called my primary while I was in the room; she told me that she wanted to follow up on how i have been doing. She told my PMD that I was seeing multiple docs for pain (not true. When I left pm, I called them, terminated my contract, called my PMD and told her about it, and notified my pharmacist). The only docs I have seen have been the pm doc, his nurse practitioner that he referred me to, and 2 docs in my primary care office. All of these folks are on the same page with my pain meds. I also take my meds as directed, and only when i hurt! She also told my PMD that the remicade should be working by now and doesn’t know why it isn’t. Then she told my PMD that I was requesting drugs from her (SO VERY UNTRUE). After she got off the phone she criticized me for taking meds that were prescribed to me. She says she has no way of knowing now that I take pain meds if my pain is PsA related or other. Then she tried to tell me that I have fibro. When I told her that I have no fibro sx, she tried to sell me on chronic pain syndrome. I don’t have that either. I have pain, redness and swelling in my joints. I felt a little better until 4 weeks after my last infusion. Then the symptoms went from a max of 5/10 a day to 9/10 a day. Sounds like PsA to me. She never asked my primary about my condition over the last 2 months.
I confronted her about what she said to my PMD. She said she was just trying to follow up since I felt I had not been cared for. I have never been so humiliated by a doctor before. I left in tears.
What do I do now? I had a list of questions that never got answered. I didn’t get the aquatic PT referral that I need. I didn’t get to ask her what her goal is for treatment. I didn’t get to ask about other meds to control the PsA. I didn’t get to show her all of the symptoms that I have documented, or show her the photos of my inflamed joints. I am left twisting in the wind again. I can’t go back to her for care AND now I need to see if my PMD will still see me for pain. She may have ruined that relationship. I am so lost.
Oh you poor girl, my heart goes out to you, I’m not sure how your health system works, but it sure doesn’t sound very nice, I think unless you have Psa yourself it’s very hard for people to understand how we feel, I’m on humira and my rhumy give me kenalog shots which work on every joint as he says it puts out the fire:) I’m in a flee at the moment and wl be seeing him on Tuesday, I’m in ireland, I feel your pain and keep fighting for what you want it’s your pain and you know what you need and it’s not the total lack if care you are getting at the moment, all my love
Sheila xxx
I am so sorry Grumpycat. You shouldn't have to deal with this on top of having PsA out of control. Can you see a different Rheumatologist? Have you had any MRIs you can point out the damage on? Just brain storming. I hope you find your way through this. You are smart and have medical training. Something will go through....I am sending you prayers and gentle hugs in the mean time.
Hiya Claire,
so sorry for your troubles… my docs aren’t great either… my primary doc is very sarcastic and even called me back at night 2 weeks ago when I had the flu and said “What are you whining about now?” Talk about unethical! My rheum is very young and too quiet. The patients I see in her office each time I’m there have a good 20 years on me and the treats me like I’m 75… which would be OK except I’m 51. She put me on remicade after ahumira lost it’s “oomph”. My 2nd infusion is net Tuesday.
I don’t know how your skin is but. mines fine so unless I happen to have a swollen joint I appear healthy. Not the case! I too need to start searching for new caregivers who GIVE CARE!
all the best finding the right team for you…
Good Days…
Grumpy, I so hear you! Managing (or, for many of us, not managing) this condition is a colossal job. And a frustrating one at that. Try this, try that, this works, keep going, this stops working, on to the next “patch”. Your rheumy is treating you in an extremely unprofessional manner, and I’m not defending her. But it must be very frustrating for our doctors as well, even the ones who are used to these slippery diseases. Doctors like to feel competent. They became doctors (one presumes) because they want to help and heal. And then they are confronted with a patient for whom they still haven’t found the solution. Or the solution stops working. A patient who is in pain, and they don’t know why, or how to help. Add to that being overworked, and in your rheumy’s case, probably sleep deprived. We all like to feel competent, and in this situation, your rheumy felt anything but! The recipe for a perfectly unprofessional storm.
All that said, her treatment of you is appalling and inexcusable. Part of being a professional is being able to maintain your professional demeanour, no matter the circumstance, or how tired or frustrated you feel. I’d be looking for a new rheumy, that’s for sure. The time it takes to find the right one will be so worth the investment.
In the meanwhile, fingers crossed that your PMD will still see you. Let us know how this plays out for you!
In the midst of your Rheumys inappropriate rant there were some kernels of truth. I got lost in the acronyms. Do you have a primary care doc that you trust? If so ask him to manage your care and start over. The words "ibuprofen, Cymablta, Vicodin and opana ER for pain control" all in one sentence is scary. It is amazing that with all of those you have a gut OR pain control response at all. It is hard to tell with all of those what the remicade is doing and chronic pain syndrome is certainly a possibility. She should have been incensed at the pain management docs not you. They seem to be more of a pill mill than pain management specialists.
I feel for you and the spot you are in. You WILL be able to get this done. keep us posted. This is a painful disease, but it should NEVER be so out of control that its Opana painful NOT EVER. Someone needs a trip to the woodshed (not you)
Chronic pain Pain syndrome is not a disease, it (in my opinion) is evidence of poor medical care. Bottom line is with chronic pain syndrome your body is hyper sensitive to pain. Even stuff that isn't normally painful. Occasionally there is an organic cause (although its often called fibro in those cases) but more often than not its caused by over zealous prescribing of the narcos.
I've been there and beaten it BUT one of the resultant quirks of that process is another quirk to my personality making me stranger yet. I'm like an ex-smoker towards pain meds..... Modern pain management professionals use very few narcos and Rheumys even fewer yet.
I have my wife go to each appointment. I have so much pain and she can describe what I am going through to my Doc's. She can tell the Dr weather she thinks I am improving or not. I has been a great help because I have trouble just remembering where I put the card with the next appointment on it. But I have may issues other than PsA. I to have had problem with Dr's not treating me the way I felt they should. I felt like no one understood my pain. My Primary sent me to Pain Management after I had a fully documented theif of my perscription pain medications with a full police report with a full confession. I felt like I was not trusted. It hurt my pride more than the pain at that point. I now have to spend 2 to 3 hours in the waiting room to see my Pain Management Dr. But in the long run it was the best thing ever. My Pain Management Dr. sent me to other Dr's who found other issues that I am now being treated for. So do not write this off as a problem until you get past it and find out if it was a possitive move or not. You may find that it was for the better.
I am so sorry. I have dealt with all this for so long. Truthfully she had a temper tantrum dear. She took it personally and telling your Primary what she did was purely retaliation. She knew it was the worst thing she could do to you. Find another if you can. This is not how clinics should work. You have to keep in mind that these places are just like any business - there are bad ones and good ones. They lack the incentive to give good customer service that we pay for because they have us by the short hairs. We pay through the nose for a service and they do not have to provide it. Health care is not a right in America so they can refuse to see us or treat us. They are also human and get just as petty and vindictive as anyone else. It is very hard to find a good doctor that values your quality of life. Sometimes they just don’t know what to do and often do not believe we are in as much pain as we say we are. Finally realize that she just had a baby and having had a child I know what that means - sleepless nights, hormones raging, and I-just-want-to-be-home-with-baby syndrome.
You did not do anything terrible and you are right that she was out of line. Take a deep breath and see your primary and work on damage control. See if your health care provider has a care coordinator that can help you - they help to manage what you need within their system. They are great for talking to about this sort of thing.
We are in a difficult position - this is a lifetime of negotiating with doctors and weeding through the bad ones. Once in a while you get lucky and find a good one that is willing to put the effort in.
You will be in for a bit of a rough time for the moment but keep telling yourself that this is a temporary setback. Get back in there and keep hacking away at them.
I had a friend and her husband that was an addict. He had 13 doctors and 13 narcotic prescriptions for his “back pain”. That is drug seeking and doctor shopping. That is not what we are doing. We are trying to get treatment and relief for real ailments. We have the right to be treated with dignity and fairness. We have a right to find a doctor we can communicate with.
My dose of Remicade is 6mg/kg ever 4 weeks - the max dose for anyone as I understand it. It actually is too little the 4th week and I have trouble getting through that week. Two weeks out of the month I can resume light activity but even shopping is too much. This is a very painful condition and not everyone fits the mold of 3mg/kg ever 8 weeks. Trials are done with humans and rely on them being able to effectively communicate results. In my mind this means that as patients we have the same ability to effectively communicate results. Logically one could argue that if we are not the same as the people they tested it on then the results would not apply to us anyway. Since the assumption is that the patients they tested it on are a representation of the general populace, i.e. us, then we are also able to effectively communicate results. Thus doctors should absolutely rely on us to tell them how the doses are working for us as individuals.
My heart goes out to you...some doctors should be veterinarians instead, since they act like you can't talk. I guess the first thing to do is go ahead and have a good cry, take a nice warm bath and take a nap. Then, when you wake up, make your game plan. The most important thing you need is a rheumatologist you can trust and communicate with. Can you ask your primary doctor who he/she would recommend? You need help dealing with your PsA, and not fighting with your doctor! I hope you get one right away who will be concerned with helping you, not his ego. And thank you for your comments on my discussion post about infusions. I will say a prayer that you find the right doctor.
I am so sorry that you were treated that way. I have been there and it stinks. Every patient has the RIGHT to be treated with respect, and it makes me so angry when we are not. I know that there are quite a few bad apples that have paved the way to make it more difficult for those who have a real need and have genuine pain, but that is no excuse! Even people with an addiction have the right to be treated with respect and like a human being. Having pain is made even worse due to the stigma attached to pain patients and the treatment.
Thanks for the idea to bring my husband. I don’t think that my doctor would have acted that way if there had been a witness. Also, I just need someone to be there with me and advocate for me. I had thought about hiring a nursing student too.
The problem with this pain is that, unless folks know what they are looking for, we look pretty normal. You can’t see how bad my feet are, and most people don’t notice that my fingers shouldn’t be that swollen. The only people who really understand are my family.
Not Understood said:
I have my wife go to each appointment. I have so much pain and she can describe what I am going through to my Doc's. She can tell the Dr weather she thinks I am improving or not. I has been a great help because I have trouble just remembering where I put the card with the next appointment on it. But I have may issues other than PsA. I to have had problem with Dr's not treating me the way I felt they should. I felt like no one understood my pain. My Primary sent me to Pain Management after I had a fully documented theif of my perscription pain medications with a full police report with a full confession. I felt like I was not trusted. It hurt my pride more than the pain at that point. I now have to spend 2 to 3 hours in the waiting room to see my Pain Management Dr. But in the long run it was the best thing ever. My Pain Management Dr. sent me to other Dr's who found other issues that I am now being treated for. So do not write this off as a problem until you get past it and find out if it was a possitive move or not. You may find that it was for the better.
Thank you so much for your response! It makes me feel a little more sane. I just emailed my primary; I’m trying to do a little damage control. I let her know the situation I am in, and gave her the phone numbers of my pharmacy and pain management doc so that she can verify what I have told her. I also gave her permission to check my insurance records. I also let her know that I am thankful to be a patient in their practice.
After my ordeal yesterday, I wondered if the Rheum’s hormones had gone whack-a-doo. Maybe she needs to take off another month.
Gimpsalot said:
I am so sorry. I have dealt with all this for so long. Truthfully she had a temper tantrum dear. She took it personally and telling your Primary what she did was purely retaliation. She knew it was the worst thing she could do to you. Find another if you can. This is not how clinics should work. You have to keep in mind that these places are just like any business - there are bad ones and good ones. They lack the incentive to give good customer service that we pay for because they have us by the short hairs. We pay through the nose for a service and they do not have to provide it. Health care is not a right in America so they can refuse to see us or treat us. They are also human and get just as petty and vindictive as anyone else. It is very hard to find a good doctor that values your quality of life. Sometimes they just don’t know what to do and often do not believe we are in as much pain as we say we are. Finally realize that she just had a baby and having had a child I know what that means - sleepless nights, hormones raging, and I-just-want-to-be-home-with-baby syndrome. You did not do anything terrible and you are right that she was out of line. Take a deep breath and see your primary and work on damage control. See if your health care provider has a care coordinator that can help you - they help to manage what you need within their system. They are great for talking to about this sort of thing.
We are in a difficult position - this is a lifetime of negotiating with doctors and weeding through the bad ones. Once in a while you get lucky and find a good one that is willing to put the effort in.
You will be in for a bit of a rough time for the moment but keep telling yourself that this is a temporary setback. Get back in there and keep hacking away at them.
I had a friend and her husband that was an addict. He had 13 doctors and 13 narcotic prescriptions for his “back pain”. That is drug seeking and doctor shopping. That is not what we are doing. We are trying to get treatment and relief for real ailments. We have the right to be treated with dignity and fairness. We have a right to find a doctor we can communicate with.
My dose of Remicade is 6mg/kg ever 4 weeks - the max dose for anyone as I understand it. It actually is too little the 4th week and I have trouble getting through that week. Two weeks out of the month I can resume light activity but even shopping is too much. This is a very painful condition and not everyone fits the mold of 3mg/kg ever 8 weeks. Trials are done with humans and rely on them being able to effectively communicate results. In my mind this means that as patients we have the same ability to effectively communicate results. Logically one could argue that if we are not the same as the people they tested it on then the results would not apply to us anyway. Since the assumption is that the patients they tested it on are a representation of the general populace, i.e. us, then we are also able to effectively communicate results. Thus doctors should absolutely rely on us to tell them how the doses are working for us as individuals.
I'm late to the discussion GrumpyCat, but I really feel for you. I (briefly) saw a rheumatologist who blamed ME when the meds she prescribed didn't have the results the drug company promised. She was horrible, I often left without getting a chance to cover my concerns.
I've very glad you are being proactive about the pain management thing. I would RUN from someone accusing you of seeing multiple dr's for pain. Getting a red flag in your chart would be really frustrating. The fact is, we have a painful disease. We need treatment for that.
I'm glad you posted. Sometimes knowing you aren't alone really helps.
I feel for you and your frustrations and know have experienced my own fair share of frustrations with the medical profession.
First think you need to do is calm down, the more stress the worse you will get. Meditation, relaxation techniques, go for a walk and do what it takes. You will then think more clearly. Your PMD needs to work with you and your Rhuemy talk to him/her. If your not satisified, your left with no other alternative than to find someone better.
Write a list, this may help get it out of your head. Make an official complaint if you feel that might help.
Find another Rheumy, your PMD may be the first place to start to get another recommendation. Is there an outpatient Rheumy at a hospital. Not my first choice, but might be better than you have got. If you get too bad, go to the Emergency Department at a hospital. Choose the best possible one in your area.
Ask others about a Rheumy in your area. It took me a while to work out how to work with my Rheumy. I get a 7minute appointment and I make every second count. I still believe he could not care less about anything I say and is only interested in working with the results of my blood tests as that is how Western Medicine works today with so many of them. They have lost the ability to see beyond test results.
Another suggestion is there is more types of medicine other than Western Medicine available. They look at healing rather than just trying to treat the symptoms and they look at you holistically.
Persevere, it will pay off. Look at different approaches. It is the fault of the doctors that make it so difficult.
I am sorry that you went through this... it's not easy but in my opinion no one should need to defend themselves this much when they don't feel well. The appropriate response should be by your professional should have been more empathetic. These specialists should also know that PSA also greatly affects you emotionally even causes depression and that their role is not to judge you or criticize you because this only adds stress and makes your condition worse. A doctor shouldn't make you feel worse after you visit them, at a minimum they should at least give you hope even if they aren't sure what's going on.
I have PSA and I'm also an rph. I've learned that everyone is different, you have to have patience trying to figure out what "works" and there is no magic recipe. I personally find myself in a constant battle to fight fatgue, constant pain, frustration at not be able to do things I want to do and I often feel a burden to my family despite having some medical knowledge.
I do have a couple of thoughts/questions which might give you some ideas to discuss with your doctor (or new doctor?) First of all, it takes weeks or months (sorry to tell you this) to see real benefit from a lot of these drugs. I saw that "it takes four weeks" above and I am puzzled by that information you were given considering the time it takes awhile to modify the responsiveness of the immune system. If it isn't working weel enough, there are other things to try...
I didn't see any discussion by your doc around disease modifying agents or DMARDs eg. methotexate as an option. Did you try these drugs first before Humira or with Remicade? They can be used with TNF inhibitors (like Remicade Humira..etc) also... In fact, originally these drugs were to be used with methotrexate.
Also, prednisone and the other gluccocorticoid steroids are good "rescues" for flare-ups to stop the immune system immediately which you said you can't take. Is that due to an allergy or anside effect? Unfortunately, these drugs are very good at stopping the flare and can be used with the TNF inhibitors and don't necessarily have to be used chronically.
Another mention is high dose chronic acetaminophen. It has benefits over NSAIDs for autoimmune diseases like PSA but MUST be monitored for liver function every 6 months and again takes about 4 weeks to see full effects.
Anyway, good luck and I hope you get relief soon!!
I know it took three rheumys to get it right for my daughter. Even this last one had no bed-side manner. But, guess what.....he was pretty smart and very organized. He even sends a follow up narrative of the visit to remind her of what she is supposed to be doing. I found that sometimes the physical therapists in town know the rheumatologists pretty well. See if you can get a recommendation from one of them - they see a variety of patients who use these doctors and have an hour of physical therapy with you to "get the scoop" on doctors.