So here is my story; I have been dealing with this pain for a year and a half and went through many different doctors till the Rheumatologist I am with now finally diagnosed me with PSA in February. Since then he started the lowest dose of methotrexate (which has not worked) added 5mg of steroids(which did not work but caused me to gain 35 pounds) and in July added lefaunomide which also has done me no good. Injury had me get a TB test and chest x-Ray with the promise of trying Humira, I have jumped through all these hoops I went to my August appointment and was told now we have to do 6 more months of lab work to see what these meds I am currently are on which are not working are doing to my body other than making me anemic . When would you say enough? I do not feel like he is listening or believing me!
From what you say, I would consider changing to a different rheumatologist in your position. But first I would want to know more about how the current rheumy is thinking. In particular I don't quite understand what is meant by the need to do lab work to decide what the meds are doing to your body and perhaps you don't either! Do you have any other health problems other than PsA and anaemia? Are there concerns about particular side effects?
There is such a thing as anaemia of chronic disease which is the body's response to ... well, the disease, and nothing to do with iron deficiency or indeed the meds. I had this for some years, just mild anaemia, but once I started Humira my Hb returned to normal. I wonder if this is what you have.
I would ask him to explain exactly why he thinks the lab work is required and wouldn't leave until I'd had an explanation I could understand. And I'd also ask why he wasn't starting me on Humira immediately.
Also, what injury do you have? Are we talking PsA related damage?
I have never been anemic before this, from what he says he wants to monitor kidney function from the methotrexate. This is for PSA related damage as we have yet found anything to stop the imflamation and pain. I cannot take NSAIDs. The meds I am on are not working at all. He has even several times now mentioned how clean and good my skin is for a psoriasis patient, I had to bring pictures in of my flair ups to show him.
Definitely sounds like you need your present Rheumatologist to sit down for a discussion with you about your treatment plan. I’ve always found it helpful to have looked into what the medical communities guidelines are for any condition I might have. Here in the UK that’s the National Institute of Clinical Excellence (NICE) I’m sure you too must have clinical guidelines? Then at least you have some idea idea of what you should hopefully expect from your doctor. Obviously doctors don’t like patients telling them what to do (God forbid!!) but letting them know you have some insight into the guidelines and the odd phrase like “duty of care” dropped into a conversation sometimes works wonders in my experience:)
So have blood tests shown problems with kidney function? I don't actually know but I assume that a real kidney problem thought to be caused by Mtx would need to be investigated and monitored.
But then perhaps, just perhaps, progressing to a biologic might be safer. So I would ask 'what kind of kidney problem do I have? How serious is it? Would I be able to take Humira safely?' Do you get any written record of what is discussed and decided in appointments? Sorry for all the question marks! But I reckon you need detailed info. from this guy. If you can get anything in writing, then run it by us on here. There are quite a few health workers amongst our members who I'm sure would help with understanding any difficult bits.
I am sorry you're not able to get the pain under control. How is your PsA generally at the moment?
Starburst said:
I have never been anemic before this, from what he says he wants to monitor kidney function from the methotrexate. This is for PSA related damage as we have yet found anything to stop the imflamation and pain. I cannot take NSAIDs. The meds I am on are not working at all. He has even several times now mentioned how clean and good my skin is for a psoriasis patient, I had to bring pictures in of my flair ups to show him.
Everyone on our sort of meds should have kidney function blood work done every couple of months routinely as the body’s main way to eliminate the drugs is though the renal system and Liver. And as we all say drink plenty with MTX to help the body cope with the elimination process.
Aha! Thanks Louise! I was under the impression that Starburst had been left without meds at all .... now the penny has finally dropped that she is staying on Mtx .... so yes, totally agree that the regular monitoring is vital. But 6 months ... when it's not doing much? Seems a tad excessive if there are other options such as Humira.
Sorry if I complicated things Starburst. Stay with the monitoring for sure ... but you still need to ask about treatment options I reckon.
Louise Hoy said:
Everyone on our sort of meds should have kidney function blood work done every couple of months routinely as the body's main way to eliminate the drugs is though the renal system and Liver. And as we all say drink plenty with MTX to help the body cope with the elimination process.
Sybil said:
Aha! Thanks Louise! I was under the impression that Starburst had been left without meds at all .... now the penny has finally dropped that she is staying on Mtx .... so yes, totally agree that the regular monitoring is vital. But 6 months ... when it's not doing much? Seems a tad excessive if there are other options such as Humira.
Sorry if I complicated things Starburst. Stay with the monitoring for sure ... but you still need to ask about treatment options I reckon.
Louise Hoy said:Everyone on our sort of meds should have kidney function blood work done every couple of months routinely as the body's main way to eliminate the drugs is though the renal system and Liver. And as we all say drink plenty with MTX to help the body cope with the elimination process.\Yes I am still on these medications, he wants me to do the tests every month (178 dollars a pop after insurance) for the next six keeping me on the medications that do not work and mind you not only cause the anemia but also cause white mouth sores for three days 2 days after taking it. These sores come with severe burning in the mouth as well. He is not concened about this side effect however everything I read says to take these symptoms to him immediately.I did some digging as well on his ratings by doing a search and I found that he is getting a 2.5 out of 5 as a doctor rating from all of his patients. All of the write ups state exactly what I am going through that he promises meds that may help and talks them up and sends you for the tests you must have before them only to decide not to go those routes after you do the necessary blood work.When I have attempted to talk to him about my concerns he gets very defensive and tells me that I am free to have someone else treat me.This concerns me as well.
I think if a doctor is not willing to have an open and frank discussion with you, and in turn that causes you to loose trust in him…Well, its a relationship that’s not going to work. We often get left in what has been termed “the gap” where a treatment regime hasn’t yet worked or isn’t working for you. Its a frustrating and lonely place where you feel you’re never going to get better or get any relief from suffering. Its a horrible place to be. Doing some research on other specialists isn’t going to hurt. 
Starburst, I relate complely to you. I have only had diagnosis for a year and symptoms that were bad enough to seek help for about a year and 4 months. I was on MTX with increase to max dose after diagnosis only to have severe side effects that regardless of minor releif prevented function. I was prescribed sulfasalazine as well but I was allergic to it. I did blood work monthly and had predisone (steroid) prescribed in taper form which is less likely to increase weight as much but it makes sleep impossible for me. It helps some but not enough to take unless I am unable to work and desperate for anything. My rheumy moved me to Enbrel right after my TB test and tried for 5 months but just recently moved to Humira which has a lot of potential for me. I am seeing real results for the first time now. Your rheumy is prescribing all the right stuff so far but I agree with you the timing seems long. Three months of anything with no change is enough according to mine. I stayed on Enbrel longer to be sure because of personal choice. Yes, she listens to me even when I should have listened to her and switched sooner. The gap sucks! I would suggest doing a search on this site and reading what comes up because you will relate to a lot of it guaranteed and also see you are not alone. You have a choice either to be much more assertive with your current rheumy or find a new one. Either way your health is worth it and we are here to help you. You sound fed up which is totally acceptable now you just need to decide where to direct that energy. Nothing about this is easy but the end result will be a better quality of life! Hang in there and let us know what you decide.
Great advice here. For me, the really short rule would be:
You change rheumatologists when you are not getting better and your rheumatologist has no plan (or won’t discuss the plan) for what the next steps are.
If your rheumatologist has a plan which, for you, has unacceptable timelines, you consider whether anyone else might be able to do better, given that a test run of two DMARDs (which most insurance plans ask for before the will cover a biologic) takes at least six months. IMHO, they need to have a pretty well-thought-out plan and rationale if the process goes beyond about six months.
In my case, my rheumatologist’s plan was to try four DMARDs, each for 3 or 4 months. I was OK with that, figuring that I should start feeling better within a year. (This timeline would not be acceptable to me knowing what I know now, but at the time it seemed reasonable.) After a year, I wasn’t feeling better. The rheum thought that I was showing signs of improvement. I didn’t. I asked for a biologic. She refused. What did I do? I felt I needed to trust her, and I aaccepted her word and went home to continue my suffering. THAT was the point that I should have bolted, but I didn’t.
Instead, I waited several more months before seeking another rheumatologist. And it was another six months before I got an appointment with a new rheum. They slapped their foreheads and said “You have severe disease and a lot of damage and you need a biologic ASAP.” And that was when things turned around for me. Unfortunately, that delay resulted in joint damage.
So: A rheumatologist who won’t explain the treatment plan? Switch. No vision for a treatment plan beyond about six months? Switch. That is what I would do. But you’re not me.
Great advice Seenie!!!