Rheumy appt yesterday
jordan7j
Bots Posts: 346
Hi, saw the consultant yesterday. He took a full history yet again!! then asked how I was, and I told him I felt worse than before I went on the mtx in July, he asked if the injections had helped, but they hadnt. I told him a went for a private consultation, as I need to keep working, and wanted to find out about alternative meds, as the mtx isnt working. As I do a physical job I have to be mobile, and at the moment I'm not! He read the report, which suggested adding sulfa and planequil to the mtx and to have a course of prednisolone to kick it in. He examined my hands, which are not my worst joints, and said not much activity, but my gp had already prescribed the pred at 30mg for one week, reducing down to 5mg and this was the last day of the 30mg, so this would make a difference. I told him that since being on them I feel so much better, he just looked kind of surprised. He also said that just having a positive RA factor doesnt mean i have RA. So I asked then why have I been treated for it? He looked at shoulders and neck which are getting worse, knees are getting worse, he looked at x rays and said he could see that. I told him my main problem is my feet but he just did reflex tests. He then said he would up the mtx to 20mg and add planequil at 200mg which I cant take until I get an eye test and have more bloods done in 2 weeks time. So I think getting the private consult was probably a good thing, otherwise I think it would have gone on and on like this. The private consultant said he doesnt understand why my RA isnt being treated more aggressively so that if I need the anti tnf eventually we will have tried 3 DMARDs already. Makes sense really!! Does anyone else find that the consultants are reluctant to prescribe more aggressively or is it just my lot??! Well, they want to see me again in 2 months, if I can get an appt!! the receptionist didnt know how to do it, so will have to call them to remind them. Also I didnt get the results of the bloods from November, as I forgot to ask for them. Well, thats about it, sorry its so long.
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Comments
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Hi Jay,
Its good that you are being treated a bit aggressively as I understand it its better to hit it hard to get it under control?
My Rumo certainly is reluctant to prescribe too much but I have other problems. I also had a very bad reaction to preds last time I was on them (that was for the IBD) an well i really don't think mine is under control yet...... May be in May eh?!
Good luck with the new treatments when you get them and let us know please. Hey don't work too hard. Luv Cris x0 -
Dear Jay
I was interested to read your thread. As I do not have RA I got a little lost, but my braincell is having a rest as it is the weekend! I understand that you were really pleased that you went privately and that you feel this consultant is not helping you as much as he could. That is a bit much the receptionist not being able to do her job of booking appointments :roll: Could you phone for your bloods to find out the result or would that again be too much ask? :roll: Shame you cannot see the private consultant you saw on the NHS..... I presume he only did private practice......
Chin up,
Love and hugs
Elna x(())The happiest people don't have the best of everything. They just make the best of everything.
If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.0 -
Elna, sorry I confused you!!! yes, RA should be treated aggressively, at least thats what the books etc all say. But, it seems the consultants disagree.
The private consultant has actually agreed to take me on his NHS list at another hospital. I e mailed him, and he phoned me back and said hed be happy to take me on his list. I have an appt with my gp on Tuesday and will ask for a referral letter.
I really dont think I would have been given the extra meds if not for the report from Dr Kaul. Although I suppose he didnt like the fact that I went to see him, at least I got information, which it seems that my clinic dont want us to have. I told him that I went for a second opinion as I need to be able to work, and that at the moment is becoming impossible, and my usual clinics answer is to just give up. Whereas, Dr Kaul suggested adding the meds, and the pred to give it a boost. Then hopefully I should be able to continue to work with the right combination. I just feel that its a case of its a need to know basis, and we dont need to know!! The prednisolone has helped as its taken down the inflamation, and therefore the pain is less. I know its not a cure, and that it has to be lowered, but at least it gives me some chance to be able to move more easily and spend my week end doing something other than resting due to pain etc Will let yoou know how it goes x0 -
Dear Jay
I am so pleased for you that you are getting some relief at long, long last and feel better in yourself. You had been suffering far too long. Knowledge is power my lovely and in your case you did the best possible thing by paying out and going private. You should not have to but for you now there is a way forward. Thank goodness you saw someone who was "on the ball" and you trust and get on with and you will be able to work as a team. That is what it is all about.
Enjoy the rest of the weekend, Jay and thank you for letting us know.
Lots of love and hugs
Elna xThe happiest people don't have the best of everything. They just make the best of everything.
If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.0 -
I'm so glad you've got some answers and action at last! You have waited and been patient with them for so long and like you, I cannot understand why your present consultant has been so reluctant to take things forward. It makes no sense to me whatsoever.
Hopefully you can now look forward to a much better year and if we could just all get some warmer weather, it would be soooooo nice.
Love
Annie0 -
Hi Jay,
Glad to see you're getting somewhere at last and good for you for taking control
I was put on Mtx many years ago but only 2.5mg a week,which at the time I believed was doing me some good. My, then, Rheumy stopped it altogether and I was discharged from his care. A flare then gradually built up in my body, which at it's peak, I was hospitalised for 4 days to get it under control and I was taken under the wing of my present Rheumy who started me on a 'proper' dose of Mtx. Compared to my first experience I think that your consultant was treating your RA aggressively with Mtx as your dose was over 12.5mg.
I hope your new one will help sort you out properly it's time you got some relief.
Luv LegsLove, Legs x
'Make a life out of what you have, not what you're missing'0 -
Hi Jay,
I was diagnosed with RA in April 2009 after several months of a lot of pain especially feet, wrists and left knee.
My consultant said her approach was to treat it very aggressively from the start and after chest x ray and blood tests and scans she put me on methotrexate and plaquenil (hydroxychloraquine) plus vit D3 Forte as my vit D level was low.
It took a few months but things seem to have settled down and I have not had a flare since last summer, though I get the odd twinge and a bit of sciatica. Compared to how I was a year ago I am a different person altogether so I would agree with the aggressive approach - worked for me.
I cannot understand though why there is such a difference in attitudes by different consultants. Surely there should be a standard approach to treating RA once it has been diagnosed? :?
Hope you get your meds sorted soon and start to feel better.
Kat0 -
Hi Jay,
Glad you've found someone to help you dismantle the brickwall. Hopefully it will be all 'up' from here on in. Good luck.
Kat,
Could the word we are looking for be 'cost'?
Dolittle0 -
dolittle wrote:Hi Jay,
Glad you've found someone to help you dismantle the brickwall. Hopefully it will be all 'up' from here on in. Good luck.
Kat,
Could the word we are looking for be 'cost'?
Dolittle
Hi Dolittle - I think you may be right, sadly!
:roll:
Kat
x0 -
Hi everyone, yes, I think its true, that is the cost, cant think of any other reason. The original consultant said that he wanted to wait to see what the mtx would do before adding anything else, to see if there were any side effects. The new consultant said it needs to be treated aggressively to stop further damage, which make sense. I also said I need to work, which apparently doesnt even occur to them. Well, time for a change, will keep you up to date0
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