Upping my sulfasalazine dose...Ugh..more pills

Had my appointment with my rheumatologist yesterday. I never know what to say when he asks "How are you? Do you feel better?"

I wanted to say " I'm doing fantastic and Yes I feel like the old me!" ...but that would be a lie. I told him my swelling has gone down since my last appointment, but my palms and fingers are still swollen. He looked and felt my swollen hands and asks me what I wanted to do with my meds.

This question confused me...I mean he is THE DOCTOR and I sell BEER for a living...lol...

I am on 400mg of hydroxychloroquine and 1000mg of sulfa a day. He told me I could increase my sulfa to 2000mg a day if I wanted to.

My question to you all is: " Is it normal for your doctor to ask you if you want to increase your meds?"

take care

Sue

16 Replies

oldestnewest
  • Wow!

    I've not experienced that one before. But I am a believer that your rheumy should work with you to find the best combination of drugs. Only you can know if it makes a difference or not.

    I'm three months into 2g daily Sulfalazine - giving it another three months before trying methotrexate and leflunomide .. (Posted what happened with my consultation yesterday for more information)

    All the best sweet,

    Chlo x

  • Hi Chlo

    I also believe that a doctor should work with you. I was feeling good after I left his office, until I talked to a friend. She made me rethink my doctors visit.

    I'm on my 10th week of taking 1gram of sulfa once a day and I do believe I've somewhat improved. Maybe going up to 2grams a day will help me reach my goal.

    take care

    Sue

    Ps..I missed your post. I'll go read it.

  • I generally tell them. :P My GP's favourite line is 'Now what are you prepared to take?'

    He probably feels it wouldn't be unreasonable to up the sulfa, given how your hands are, but is trying not to dictate. If you were happy with things, he made it easy for you to say so. Likewise, if you're not happy with how things are, you have an option to try. To me, it's an example of good doctoring - only you know how your hands feel & if you want to live with them like that.

  • Thanks Livingston, I do like my doctor. I was happy with the options he gave me until I talked to a friend who made me rethink my dr visit..

  • I'm not so sure. My rheumy always asks me what I want, what I would like to do next etc. He asked me this when he diagnosed me - what would I like to get out of this appointment.

    But if I reply that I'd like to try biologic drugs (I did this once) he says this wouldn't be an option for me. Why not? I've tried four DMARDs of my own choosing and failed - my DAS 28 was about 5.2 last time I saw hm so I worked out. He didn't do a DAS score on me ever and yet according to him I had two swollen joints and if he'd have asked he would have found that I had many more tender joints and a high ESR and global assessment score?

    I feel that in my rheumy's case this is a trap he lays for me. Then, when I suggest something he agrees with he seems happy and writes to my GP that I've chosen this drug and he thinks this is acceptable. Then when i have a horrible, rare drug reaction I'm left feeling I've poisoned myself - a kind of self harming if you like.

    I'm going to be seeing a new rheumy in a new area soon and I hope he doesn't ask me what I want. I hope he advises me what he thinks might be worth trying - giving me all relevant information so we can decide together what might work. What I want is not to be in pain or struggling to come to terms with yet another drug reaction. What I want is not to have to think about RA anymore.

    Teamwork is one thing but these guys are trained and paid too much to leave these decisions for us to make - or appear to make anyway - so it absolves them of the ultimate responsibility.

    It's obviously an approach that some doctors think is progressive and inclusive- but it really hasn't worked for me to date I must say.

    My GP doesn't ask me what I want - he tells me what he knows or considers to be my best options and then leaves me to do my research. This approach suits me much better.

    But if you like your rheumy and thought your appointment went well then this probably means your rheumy's approach suits you so don't mind me please! We are all different and the dynamics between doctor and patient are not for others who weren't there to judge.

  • My consultant says what he thinks and then asks if I'm willing to give it a try. It seems a good idea but how can you say 'no'?

  • I'm do think that this is a two way partnership, so I'm very happy that my rheumy asks me what I want to do. She knows that I know my body better than anyone, and that how I feel is as important as blood test results. She does often also give me options, or maps out next steps. I know that if I said I wanted to do something that she didn't agree with, she wouldn't let me do it, so I'm only deciding for myself within a limited range that she thinks is medically acceptable. For example I recently asked if I could move on to 3 monthly blood tests as I've been stable for a long while and she said absolutely no because of the amount of drugs I'm on. But then I do thinks she's a good rheumy and I trust her, so when she says that the next possibility is X then I'm usually prepared to listen. But I have also said no from time to time as I wasn't in the right place to try more drugs.

  • I'm just new to doctors asking me for my advice.

    When I stop to think about it, I must admit, I do like the fact that he asks me how I feel, I guess I'm still hoping for a "magic" pill...I can dream can't I? :)

    My hubby says for me to only worry about an obgyn asking how to do a c section. lol

  • Relationships with Rheumatologists and GPs become so all important don't they? My rheumatologist tends to be rather authoritarian so I become the good listening child and feel about 12 years old, and my GP is rather kindly and inclusive and I become the knowledgeable expert. Somewhere in the middle would be just right! As far as the Sulphasalazine goes, I am on the full dose (2,000 daily) since March this year and it really seems to be doing the job so long as take care of my side of things. Why not ask your guy which brewery you should get your beer from and see what he says!

  • Hahaha thanks for the laugh. It's good to read that sulfa is working for you. Maybe sulfa 2000 daily will be my "magic pill" too.

  • I think my answer to him/her is i want to feel well and pain free,your the dr you tell me.xxxx

  • Just had another thought. Apparently there's a big problem in diseases like ours of non-compliance, ie the patients don't take the drugs they've been prescribed. Which I can understand as since they take so long to work and don't make any difference on a day to day basis then it's easy to think that they're useless. But it then does make sense for docs to check that you'd be prepared to take them before giving them to you. After all not a good idea to have unused MTX floating about in people's house.

  • This is so true. I have to admit, when he added the sulfa to my hydroxy back in May, the pills sat on my dresser for 2 weeks. I was just hopping the extra time was all the hydroxy needed. I was wrong.

  • My GP usually tells me what he wants me to take, then looks at me and asks "will you take that?" LOL! I'm notorious for telling him what I will and won't do. My Rheumy is a nice man, but not as personable as my GP, so I don't kid around with him at all. He tells me what he thinks I should do and then asks how that sounds to me. Both types of personalities work for me, I'm pretty flexible. :-)

  • Yes! I would be disappointed in a Rheumy if he made all my decisions without asking how I felt about it, if it was necessary even. True, the options should come from the one who knows the implications, the likelihood of a particular med being the better option or if an increase is necessary but to develop a good patient/doctor relationship I believe discussions like this are necessary. Maybe not quite so much left up to you but given options certainly. Case in point - a couple of weeks ago I saw a Registrar I'd not seen before, he decided I needed another DMARD adding & "decided" it should be hydroxychloroquine. I questioned my suitability as it was the first DMARD I tried & it worked for a while both on it's own & with MTX (which I'm still on) & that I felt having tried it maybe it wasn't the better option. He was insistent I try it despite my protestations, explaining the side effects i had I wouldn't wish to have again considering I am still having headaches (one of the side effects I had) which my GP is trying her best to solve (neck issues). We left it that I would try the increase in MTX & discuss again in 4 months which I was happy with as I'm unlikely to see the same Registrar. I'm not trying to be confrontational but the lack of continuity means he doesn't know my history but to still decide I needed HCQ just isn't the one I think is correct for me. This is a bug bear with me you might have guessed!

    For future appointments it may help you to prepare a bullet point list of what has changed since your last visit. It helps me greatly when asked how I've been since the last meet & saves valuable appointment time I find. Blood tests don't always give a Rheumy a true indication of how you've been but that & pics of unusual & changes that come & go help.

    I'm sure you'll form a good relationship if he's aware you need him to take the lead a little until you understand the ins & outs of meds a bit more while still having the option of giving your opinion. :)

  • Thank you for your opinion, Nomoreheels. I do feel comfortable around him. He is a very nice man and very personalble. Writing down changes in swelling and pictures of changes that come and go are excellent ideas. Thank you

    Sue

You may also like...