Advice on rheumatologist

Good Morning,

I was diagnosed with severe RA in December 2015, I have been seeing a rheumatologist and I am wondering if what he doing or not doing is normal. I am on methrotrexate, planquenil, steroids and will have my 4th remicade infusion in 2 weeks. It seems like I am getting worse instead of better. My left middle finger is twice the size and curled and am having daily pain everywhere. I now have 5 RA nodes and all of this got worse when I started these treatments. Does this happen sometimes, are these flare ups or should my rheumatologist be looking into either upping my dose or changing my medicine? When I let him know what was going on, he just said thank you for letting him know. I am thinking of changing my doctor because it doesn't seem like he is doing anything. When I ask him questions he gets mad. Have I not given all this medication enough time or is it just him not doing anything. Sorry this is so long, just not sure what to do.

21 Replies

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  • Oh my does seem a lot a meds at once. I am not a doctor and do not know your situation but one thing is quite obvious that getting " mad" at a patient for asking questions and not being willing to discuss the situation, is a doctor who is not doing his job and yes, if I were in your situation I would look for an other doctor and fast. Good luck😊

  • Thank you :) I wanted to make sure I wasn't jumping too fast, because if I see another doctor and he finds out, he probably won't see me again. Have a great day :)

  • Hello,

    Yes I would change your doctor, they are not experts bur General Practitioners so should refer you to someone who knows about your condition and be helpful. It's only a Rheumatologist that can prescribe specific RA drugs and as you will see from all the various posts one size definitely does not fit all. You need to find what works for YOU and if something isn't right after 3-4 months then it needs to be changed. Unfortunately you need to be clear and firm, but reasonable. Is there a helpline at your hospital? I ring them initially. You need to say exactly how things are and what pain you have and ask what options you have for other drugs. Read up yourself as well if you can - information is power

    When I was diagnosed in 2001 I was initially able to go private. The consultant tried various drugs and I was on weekly blood tests at first to keep an eye on Inflammatory levels. Like you my RA was severe very quickly and he said we must fight this aggressively because most joint damage occurs in the first 1-2 years. My hands are quite affected but I still have full strength and no pain.

    The drugs I take have changed over the years for various reasons, RA does not stand still. You need to be aware that even a small infection can quickly become a major problem.

    Push hard until you get someone you can work with you and be supportive.

    Thinking of you and wishing you the best of luck.

    I'm sure there are drugs that will help you but it looks like you will have to fight a bit to get them.

    I could hardly move for 6 months initially but the right drug combination was like a miracle

    Michele x

  • Did you have a two or three week loading period for Remicade--how many weeks total have you been on it? Biologics can start working immediately for some people but generally take about three months before you notice an improvement. What dose of prednisone are you on and how long have you been on it?

    I guess what I'm asking is how all your meds were given to you and in what time frame? Has your doctor been adding meds every so often depending on your symptoms?

  • Hi, I had a two week loading period for Remicade and now am going for my 4th infusion. I am now on 5 mg of steroids, I went off of them for 3 weeks but I couldn't stand the pain, so I had to start back on them.

    I started with methrotrexate in January 2016, had been on steroids 10 mg since December 2015 and plaquenil(sp?) around March 2016 and then started on the remicade January 2017. I had just wrote him and explained to him a lot of the pain I was feeling in the beginning was coming back and that I keep growing more RA nodes and he said thank you. That was it, I figured he would want to see me before my infusion in 2 weeks and maybe up the dose or change something but he didn't.

  • I am on my 3rd rheumatologist...and finally I have found a rheumy who works with me. Please seek another rheumy.

    I believe my first rheumy was a nice man, but utterly confused at why the drugs he prescribed weren't working. I felt bad for not being in remission. How crazy is that?

  • Wow I hate you had to change so many times, I'm glad you finally found one. I am probably going to have to do the same thing. Have a good day.

  • Yes, I too hated searching for a rheumy, but I'm glad I did. My new rheumie explains everything too me now and even draws me pictures to help me understand what is going on with my body & my meds. lol

    The search was well worth it.

  • You have to feel comfortable with your Rheumy and trust them fully. We are at their mercy really each one of us is different so it's probably hard for them also. Mine is amazing. Very receptive and open to your thoughts also. I was unlucky enough to see another last year after needing an injection and she was younger but had her own views and would not listen to mine at all. Luck of the draw I think! All the best

  • It would be soooo nice to have a doctor that would explain things to me so I understood what I am going through. I have done a lot of research and he hates that. When he ordered the remicade for me, he told me not to research it. I told him I already had, he didn't like that but I am not going to put anything in my body unless I know all the good things and or risks I may be facing.

  • Keep your options open,listen to others and research the hell out of it. I am as well as I have been on years thanks to my research. Still have RA but enjoy any good days I get... good luck

  • Thank you :)

  • Having that many different drugs all at once imho is absurd. My first rheumy pretty much poisoned me and caused lymphoma type symptoms. I was also on mtx, plaquinil, prednisone 40mg, leflunamide, and sulfasalazine. I stopped all but the prednisone and found my symptoms started to reduce quite drastically. My crp has been super high 159 for almost 1.5 years. Prednisone by itself had brought it down to 19 for a bit, thennit cranked back up again. I stopped all meds for a month and went.on humira. Had a very bad reaction (doughnut shaped blisters that were hard and painful) staryed after 3 weeks and lasted for 6 weeks after stopping humira. Stayed off all meds for 6 months and ended up in hospital for 3 weeks with a lymphoma type problem. Huge night sweats and super weightloss. 52# in 7 weeks.

    Was put on low dose 7.5mg prednisone by new rheumatologist for 2 months and then Anakinra. Anakinra is al IL1 biologic and the oldest one out there (did not work for me) did daily subQ injections for 49 days.

    Waited one month then started Actemra. Actemra is an IL6 biologic (Interleukin 6 is a master cytokine in the body and it relates with high CRP. If CRP is high then so is IL6) I get the monthly infusion. Two weeks after the first infusion i finally had enerfy as my body was no longer fighting the inflammation. CRP day before first infusion 159, 2 weeks later 1.7, one week after second infusion and still 4 months later is less than 0.2. I would suggest to your rheumatologist to think outside the box and try something else. You should nat have to take all the dmards at the same time.

    Feel free.to email me.privately and i will explain what i can.

    I am not a dr but have been off work for 1.5 years now and have been researching medical journals.

  • Hi, yes my biggest concern is all of this medication, it can't be good and if it is not working why am I on all of it??? You have been through a lot and the disease is enough without having problems like you did. I would love to email you, any information would be helpful, thank you. Have a good day.

  • I don't believe in a lot of medications. My first rheum doctor wanted to put me on three medicines. I refused to take them. I finally was refereed to two women doctors who specialize in RA. I take a biologic called cimzia which works very well for my RA. My hands and wrist were the worst. I also have pseudogout in my right knee which is a form of arthritis. I have had arthriscoptic surgery which has made it better, but the crystals are in my tissues. I exercise 5 days a week and I am able to function most of the time. Cimzia is an injection that I receive once a month. My insurance approved me for 6 months, but I have to see if they will continue to let me receive this biologic . It is very expensive, but it works. I have a trainer and he works me out with weights and he has pushed me further than I ever expected.

  • Change your rhumatologist. I had to do this once because he upset me so much that I left his office in tears. Your are the patient and deserve compassion not being snapped at because someone's having a bad day.

  • When I was asking him about remicade, that I had heard people become allergic to it because it has mouse DNA in it, he told me I would die from RA before I would ever die from the medication. I was in total shock that a doctor would react like that. I don't complain a lot but try to give him facts about how I am feeling and I get answers like thank you. That tells me nothing, he is very frustrating. Thank you for your advice, it is very helpful.

  • One thing you have to watch out for with anti TNFa drugs like Humira, remicade, cimzia and others is that some people, myself included have had very awful reactions to these medications. Ask the doctor to do a full blood count on you, then ask about your CRP levels, also ask to have your interleukin 1 levels checked, then your interleukin 6 levels. These are two major cytokines in your body that cause an inflammatory response. Interleukin 10 causes an anti inflammatory response. I spoke with a hematologist not too long ago who advised me that if my CRP was high then my interleukin 6 would also be high.

    I started taking Actemra, which is an IL6 biologic and within a week or so my CRP levels dropped from 152 down to around 1 and now they are less than 0.2mg/L.

    It does not hurt to ask the doctor questions as this will show that you are taking some ownership of your situation. My doctor loves that I come in to the office quite informed and listens to what I have to say. We are working on me "together" which works in my case and I get to feel like I am helping him help me.

  • Good Morning, I have been on remicade since January, I do not see it is working real well, but maybe I haven't given it enough time. I have asked my family doctor for a referral to a new rheumatologist, thanks to everyone's advice on here which I am thankful for. I have never been tested on the interleukin 1 levels so I will have to look into that, thank you very much.

    Have a pain free day :)

  • These biologics are supposed to work very quickly once started. If you are not getting relief or benefit from it yet then I woukd be asking your doctor for something else.In Canada, our GPs are not able to prescribe biologics as they arw not familiar with how they work or what they work on. Only specialist drs like rheumatologists can prescribe them as they have the training and knowledge of how they work.

    Anakinra is the interleukin 1 biologic. It is a daily subQ injection. It is supposed to work in the first 5-7 days if you have an IL1 issue. IL1 is generally with a disease called Still's Disease. It looks a lot like RA from the outside. There is no blood test for Still's, they diagnose on symptoms. There is also Castleman's disease, same diagnosis protocol, and Addison's disease. Write down your symptoms to talk to a rheumatologist about it.

    Hope this helps.

  • Too many medications all at once. Change your rheumatologist asap.

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