Had an appointment with my Rheumatologist today or so my appointment letter said. When I arrived I was told it was with the nurse. Showed my letter and was told the letter should say the clinic nurse it was a mistake 🤯🤯🤯🤯 I took a deep breath and said fine.was asked how I was getting on with the injections. I said just fine they were easy. So she said ok let’s give you another prescription. I counted to 10 then said they are not working and produced my diary and list of problems. I could see she wanted to dismiss me but she had a student nurse with her😁 and I knew she would have to take notice 😁. So she said she would talk to consultant... I said I would wait as I knew he was in today. 5 mins later was offered a steroid injection... declined had 2 this year didn’t work..... was offered oral steroids... again declined as I felt this wasn’t the answer as I been really bad since February and the methotrexate hadn’t worked so far and I felt the steroids would only mask the problem and any more weight gain wouldn’t help. She went to speak to the Rheumatologist who said start on Sulfasalazine as of today.... everything is so difficult and if I hadn’t been using this site I wouldn’t have the knowledge to fight my corner. A god send this site.Fingers crossed this will help.
It makes me so sad that we have to fight for good care, well done to you for standing up for yourself. I hope you get some relief from sulphasalazine soon.
I start my battle (hopefully not) tomorrow but least first appointment and then chill for rest of the day . Luckily my team very clear nurse or consultant.
I have had experience of taking in written notes or letters from other consultants I am seeing from other hospitals, only to have them more or less handed straight back to me by my rhuemy without being heard or even have them looked at. So I hear what you say. We are not just a condition and come as a whole, a full body. So it is frustrating to feel you are not being listened to properly and felt that you were initially being fobbed off with steroids when they haven't been right for you in the past. As for students I completely understand they need experience, but recently I attended an appointment and it was more or less expected that patients accepted them being there with a sort of blaze oh there are some students observing today. Well actually for once in my life instead of just accepting this I actually said I'm sorry I really need to speak without the students present thank you. You should have seen their faces. Sometimes it can be helpful having them there, but there are times in the past when I have felt like the 'entertainment'...as in guess what's wrong with this woman, feeling like my appointment is taken up by their medical diagnosis of my condition and previous notes and not about what I want to discuss here and now. So good for you J1707 for fighting your corner today. Hope things work out for you on your new meds.
Well done for standing your corner although we shouldn’t have to do it,I had to do it at 1 appointment and haven’t had any problems since,hopefully the sulfazalasine makes a difference xxx
I had a really frustrating appointment yesterday with rheumatologist and she also had a medical student with her, I was really annoyed all of yesterday. Basically she was very sharp and abrupt with me just because I felt the sulfasalazine wasn't agreeing with me. I started it 8 weeks ago to take along side methotrexate, but a few weeks after starting it I've been exhausted I mean literally no energy at all and everything was a constant struggle. Problem is it really was helping my joints but I couldn't deal with that crappy feeling and I lost even more weight on it. She couldn't understand this and said side effects settle after a couple of weeks and that sulfasalazine wasn't the culprit. She felt round my joints and said they definitely felt more improved and she was like you definitely don't need any steroids today. Well I didn't ask for a steroid injection in the first place as I knew the pain had decreased and I wouldn't need it.
So decision was to quit sulfasalazine for 2 weeks to see if I feel better and then to restart them but increasing the dose more gradually. So that's my moan over! Hope the new meds agree with you and help this time round.
Your are right about the letters. This time I made the appointment through his secretary as I haven’t seen him in 18 months and for over 10 months I have really struggled.. I only work One and a half hours a day and that’s all I’m able to do .... housework, family, exercising, socialising have ground to a halt. A bit miffed I didn’t get to see him as he is good but as you say there are not enough consultants to go round.
It can take a lot longer than we’d like to find the right mix of drugs...& even once you find it ....you might not climb that mountain or run that marathon... But you probably would only have thought about doing them anyway!
Relax & look forward to the drugs working. I’m sure all the adrenaline we use up worrying about,when,how & why me (?) ......delays us realising that “Hey today I feel a bit better than yesterday”.
Looking back I’m sure I neglected to use my left hand because it was so painful to move ...then reality dawned that it was less painful..... and I never looked back.
Good tip... Don’t worry about the housework, I bet none of your friends ever said she’s really good at housework!
so sorry to hear this. Administering steroids isn't great, I've now got type 2 diabetes to contend with after long term steroids. Can manage, but its not great to add to problems!
After trying methotrexate and leflunimide neither of which worked well for me, the doctor changed me to sulfasalazine and for the last 6 months I have had no flares. Certainly worth a try.
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Moving forward
I just don't know what to do
Steroid injections, again
Disappointed Rheumy visit today
