Hi everyone, saw the rheumy today, and actually got to see the consultant!!! He asked for a full history of symptoms yet again!!! this is the 3rd time of asking, and the 5th visit. I told him my main pain is in feet and ankles, then knees, hips, elbows hands and wrists in that order. I told him my neck and right shoulder is gettig worse, and that it started in November. He then examined my hands and wrists, saying that he wanted to check the state of joints. He also did a hand scan with a portable machine, and said that there is not much activity at the moment, but it could be due to the steroids, as I told him my GP had prescribed the pred for me. I also reminded him that my main pain was in my feet. He then checked my knees and feet reflexes. He looked at the x rays and asked if the pain in knees was worse, which it is a bit. I told him that since starting the mtx in July I feel worse not better. He asked about the steroid injections which I had previously, and I said they did nothing. He then said well it seems that everything we've done hasnt worked then. Yes, thats about it really.
I then showed him the report from Dr Kaul, he seemed a bit surprised that I had gone for a private consult, but I said I need to work, and its a physical job, I cant do it when I feel in so much pain and so tired all the time. He then asked how old are my children. I told him mine are older, its other peoples that I care for. He then decided to put the mtx up to 20mg and to add planequil, which I am not to take until I have my eyes checked, and a blood test in 2 weeks. He asked if I still get the rashes and other symptoms, I said yes, and he said ok, but didnt tell me the results of the blood tests from November, admittedly I forgot to ask. So, basically I do get an added med, which is good, and I am to have a follow up appt in 2 months, which the new receptionist couldnt book, so have to wait for a letter, if he remembers.
I spent 15 mins in the consultation, including the examination, I just think they dont take in what you say, and have so much to do that repeat things over, as in the neck and shoulder pain, he asked me again how long I had it for. So, all in all a better appt, but still not much faith in them, and will see my GP for the referral letter to the Royal Free on Tuesday.

Hi Barbie,
Hmm, like you say, a better appointment but not perfect!

At least he accepted that you'd seen another consultant, are the meds the same as the other one suggested?

I had to chase up my next appointment too, after being told they would send me one!

Good luck with fetting the referral to the Royal free.

Love, Doreen xx

Hope the new meds help you and you finally start to see an improvement!!

Deb x

Hi Barb

So pleased that things are a little better - but still not perfect, sadly.

Everything crossed for an early transfer to Dr Kaur.

Much love

Jeanxx

Hi everyone, yes, the planequil was recommended by Dr Kaul, so they did listen to that, he also suggested sulfa too, but not given me that, although if I do have an overlap apparently sulfa is bad for lupus. Dr Garrood knows Dr Kaul, so did take notice of the report, so that was something. Willl call about the bloods though, should have asked, but such a rush, did have a list, but after getting out report for him to see I forgot about the list!! Will also check about the follow up appt, just incase it doesnt happen. He said 2 months, but probably they wont have any appt for then, so it will be longer. Hopefully I can get the app at the Royal Free by then.

Hi Julie, yes the pred is amazing!!! I have been shopping with Georgia today, havent been able to manage it on Saturday after working all week, soit was great. Dr Garrood still questioned my diagnosis though!!! even though DR Gibson had said it is definitely RA. When I said the pred had been fantastic, he just looked surprised. I just dont get it, why keep going over the same stuff all the time? If it wasnt inflamatory then the pred wouldnt do anything would it? It wont work for OA. I honestly think they expect us to just say oh ok and go away happy. All I want is to be able to continue to work, and have a bit of a lifel, thats not too much to ask surely, when there are drugs to try. I dont expect miracles, but some kind of support would be good!!I dont think he would have given me the planequil if I hadnt gone to Dr Kaul, when he saw the report about more aggressive treatment, he must have thought that he should give it a try. I just dont understand why when there are drugs they can try that they insist on keeping to one which doesnt work, and upping it by one pill every 3-4 months. In his report Dr Kaul said that if 3 DMAARDs are tried early on, then you can go onto the anti tnf much quicker, and at the rate mine is going it would be at least another year. I know it may not be needed, and hopefully it wont, but why make us wait when its there for us?
Sorry, going on again!!
TAke care, hope you are doing ok x

Thanks melly, I think they want us to think we must be going crazy!!! How can you be treated for something you dont have??? Oh well, will call them about the bloods on Monday. Would be good to know if there is an overlap. Take care x

Hi Maria, I really dont understand why we get treated so badly. Surely if someone is in pain, and something can be done to relieve it, its a doctors duty to use whichever meds he feels will alleviate that pain. Why do they send us away time after time with "wait and see if the mtx kicks in" obviously after 5-6 months its not going to is it???
Our nurses are not very good either, it took them two weeks to reply to my msg about being in pain.
The only GP I could get to see had the opinion that I should just give up work. Not only dont I want to, as it keeps me sane to be occupied, theres nothing wrong with my brain (well not officially, anyway!!!) its also good for self esteem. She refused to prescribe anything, saying that without the consultatns ok she could get struck off if it went wrong. Luckily 2 weeks later another GP did give me the pred, its been a god send.
I would definitely go to your GP, but also complain about the way things are at your hospital, I think we dont complain enough.
We have to take charge of our own treatment, as apparently no one else will!!! Good luck x