Appointment today

I'm really nervous about going to see my rhem nurse this afternoon. I have been going every month, and each appointment they seem to give me a new yucky drug to take and tell me its going to work .... I am struggling to type and walk this week. 

My pill stash seems to be getting bigger and my joints seem to be getting worse!!

Really hoping the nurses can help this afternoon.

Hope everyone has a good day x

14 Replies

  • Unfortunately it can take some time and changes of drugs to find the ones that suit you and control the disease.  Be totally honest with them about how much you can do as they can only see the joints not how they are affecting you.  Make a few notes (bullet points) as reminders as often as soon as you go through their door and your mind goes blank and forget to say something you wanted to.    Good luck.  Farm

  • Thankyou farm, I have just made a few notes :) 

  • So sorry to hear that things aren't good. Just wondered if you have ever tried changing your diet? Eliminating meat, gluten, sugar or dairy has helped lots of us on this forum. Eating less processed foods and more organic? Could be worth experimenting with if you haven't already. 

    Or perhaps seeing an alternative therapist if you can find one that's been recommended by a friend? 

    But maybe you've already done all of this? It's helped me which is why I suggest it. My wrists swell up within 24 hours if I eat bread and jam as I did recently on a French holiday!

    Gentle exercise can help you feel more positive. Have you tried yoga ever? Good for calming the nerves and helps with relaxation.

    Hope your appointment goes well and you find ways of coping with fewer drugs.

  • Hi Matilda,

    Yes, I love yoga and frequently go for long walks and gentle jogs. Shocked to hear that jam and bread could have such an effect on you! i am careful with what I eat and have considered going gluten free, still not convinced though.

  • The only way to find out is to give it a try. A couple of weeks should give you a good idea if it's helping. Often a clue is to ask yourself what would you find most difficult to give up! And then go without it.....prepare yourself by having some alternatives....hope it works! 

  • The AIP diet has worked for many in decreasing inflammation and pain. For me it worked well took away my fatigue and decreased my pain and inflammation notably, need only occasional pain medication. The point with this diet is to eliminate food that you may be allergic to and then slowly reintroduce them when your symptoms subside. Its a hard diet to follow, especially in the beginning but it is worth a try, if it works, so much better than hard meds. Look at AIP on google, lots of info. Also Dr.Chris Kresser has a lot of good advice and info on the subject. Good Luck😊

  • You've probably left for or even had your appointment, if so I hope it went well. It is unfortunately one of those things, not everyone reacts to treatment the same & nobody can predict how well we'll react plus you're not long diagnosed, it can be so frustrating. It can be disheartening too, normally we take a tablet & it helps, not so with RD, as you know we're trying to remodify to help stop our system attacking itself so it's little wonder a medley of meds is required. Many of us have tried double therapy, triple therapy even but I'm sure your team will do their level best to get you controlled. Being seen monthly is excellent, I'm not sure that happens often! Nevertheless the disease certainly tests your patience at times! If it helps, I have RD, OA & slightly raised cholesterol for higher risk category due to RD, I take 11 different meds, 9 of them daily.

    There is no doubt eating healthily helps as does keeping well hydrated but you may have enough in your plate just now trying to get your head around things? Certainly something to explore once you're settled into your meds & feeling the benefit. Did you not start to feel better after your MTX dose increase?

    Do let us know how your appointment went.

  • Thank you, I was just waiting for the nurse to call me when I read this x

  • How was the appointment? ccw93 Did it go well?


  • Hi. As previously mentioned perhaps making a list of questions you might want to ask the consultant.  It has taken me years to reach a point of various drugs to try which on a positive side has bought me into the biological  group. I fear it is a difficult area as what works for some doesn't work for others and the consultants aren't miracle workers . It's a about trying drugs to find one that helps. Good luck.

  • How did your appointment go ccw93? I hope your Rheumy nurse was understanding of how you're feeling?

  • Morning,

    Not too good. There is no real plan of action. I have to wait until May (as I will have been diagnosed for 6 months by then) before they will discuss the next options drug wise. In the mean time they advised that I just dose up on pain killers. The next available appointment to see a consultant isn't until the last week of may.

    Which is frustrating and not productive at all! not to sure what the next steps even are. It just felt like another wasted appointment. I had a little cry and then went for a small walk and watched the sunset over dartmoor and slept very well.

    Any tips?

  • Oh, that's not what I as hoping to hear. Do you have a good relationship with your GP? If so I would ask if he/she could review your NSAID & pain relief, naproxen may not be tackling your inflammation quite well enough & maybe even ask, if it's not offered, whether a short course of steroids could help. I know it is not ideal but you need every bit of help at the mo. A month's worth can be helpful to bridge the gap until your next appointment. I'm not sure where you're up to with DMARDs, are you still on MTX & has SSZ been added? If you are still on MTX it could be they're wanting you to stay on it for the 6 months to enable you to have it recorded as a fail, possibly forward thinking treatment wise? Have they not discussed what might be considered treatment plan?

    In the meantime I'd ordinarily suggest you take things easy & rest up but with your trip so soon that's unlikely! I do think work need to be informed how you're struggling though, particularly with the long hours. If you present the appropriate person with the booklet, you can explain you will improve with the correct treatment but just now you're not controlled & finding things difficult, ask for what you think is acceptable & doable & try to work out some kind of plan between you.

    Have you tried either hot or cold on your worst affected joints? I have an electric heat pad & an electric foot warmer as I find heat helps but cold can be equally effective for some. A bag of frozen peas wrapped in a towel for 20mins at a time or if your hands & wrists are affected the wine cooler sleeves you put in the freezer are useful particularly if they're the ones which open up & fasten with Velcro so you can wrap round knees, elbows etc. What both my h & I have also found helpful is Pernaton gel, it takes the edge off sickening pain & the bonus is it works within minutes. You can reapply it as often as is needed too as it's not NSAID based like most topical joint creams or gels, so it's not contraindicated with any meds. My h had a heart op in February 2015 then has had terrible pain since August following sternotomy dehiscence reconstruction & debridement, due to placement during the op his shoulder dislocated & it's gone some way to help recovery as he's only able to tolerate paracetamol.

    I hope at least some of this helps & you're taking it easy today? x

  • Hello,

    I moved house back in feb and am meeting my new gp tomorrow, so fingers crossed they are nice and helpful :) 

    MTX ans SSZ made me vomit so im currently just taking 2 hydrochloriquine a day. Which isnt having much effect. Hopefully in a months time more effective medication will be available. and then a medication plan can be put in place.

    Sorry to hear about your husband. I shall definitely look into Pernaton gel. very good tip about the wine coolers I have a few at home!

    Not taking it easy today, back working at revising today. looking forward to a big bubble bath when I get in! xx

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