Copy of letter from rheumy to my GP

jordan7j

Hi everyone, after my appt on 27 Nov I received a letter regarding my treatment etc. The main points were as follows:-
The patient says she is not getting any relief from pain with the mtx or tramadol
She has swelling and inflamtion in ankles,knees, elbows and wrists
This may be due to the fact that she is a childminder to young children
She also has a purpuric rash on legs which is non blanching
With regard to other symptoms and tests, she has Raynaud's and Sjogren's
To continue with 15mg mtx and tramadol
Review in 3 - 4 months
(this is a shortened version, but the main facts)
Does this seem right? I had hoped for something added, or at least some pred, My ESR was 66 last time, which is the highest its been, and was in alot of pain.

Are they just not taking me seriously as I still work? If this goes on I will have to stop anyway. When I saw my GP she agreed that if the mtx was going to work it would by now and that I need to be firm when I am seen, and she will try to get me an earlier appt. What does everyone think?

lindalegs

jordan7j wrote:

Hi everyone, after my appt on 27 Nov I received a letter regarding my treatment etc. The main points were as follows:-
The patient says she is not getting any relief from pain with the mtx or tramadol
She has swelling and inflamtion in ankles,knees, elbows and wrists
This may be due to the fact that she is a childminder to young children
She also has a purpuric rash on legs which is non blanching
With regard to other symptoms and tests, she has Raynaud's and Sjogren's
To continue with 15mg mtx and tramadol
Review in 3 - 4 months
(this is a shortened version, but the main facts)
Does this seem right? I had hoped for something added, or at least some pred, My ESR was 66 last time, which is the highest its been, and was in alot of pain.

Are they just not taking me seriously as I still work? If this goes on I will have to stop anyway. When I saw my GP she agreed that if the mtx was going to work it would by now and that I need to be firm when I am seen, and she will try to get me an earlier appt. What does everyone think?

Hi Jay,

I think they are taking you seriously and it has nothing to do with the fact that you work. They've just mentioned it in the letter as this could be a cause of some of your swollen joints. I feel they're probably floundering a bit with your medication as sometimes it's hard to find meds to suit. An earlier appointment is a good idea especially as you're suffering - they need to know this.

If you don't hear anything keep putting pressure on your GP so that she in turn puts pressure on them, this way you should get a result.

Luv Legs

skezier

Hi Jay,

I totally agree with Legs there. I promise you mine tell me out right when they think my way of life (its not really work though i is hard work sometime ) is really aggravating the bone things.

If the gp isn't too helpful (mine never are) don't forget you can always ask the rumo's secretary for an earlier appointment........ I did that once and they couldn't have been more helpful. You take care and ((( ))) Cris x

jordan7j

Hi thanks for the msgs, I forgot to mention that due to having other symptoms, they are looking at mixed connective tissue disease too, as an overlap syndrome (lupus and the myositis diseases) so this may also be why they are being careful about what meds they give. My GP surgery is a bit varying in help, as it seems it depends on who you see, the previous one I saw before Christmas gave me the amtitriptyline, and suggested looking into a course of pred and maybe pain patches. This one said to wait until I can get another appt with rheumy, and wouldnt give me anything.
So its a waitng game again, I do feel like they dont listen to me though, or take me seriously, and that maybe thats because I dont really come across as very assertive, this will have to change, or I think it will go on forever, and I cant keep working the way I feel now. Thanks legs and Cris x

lindalegs

Hi Jay,

If you're not very good at being assertive, imagine you're talking for someone else, who you're desparate to help, as very often we're not prepared to stand up for ourselves but would willing help someone else. Also, as we always say, write down what you need answers to and start writing today, then you'll be well prepared by the time your appointment comes.

Hope this helps.

Luv from bossy Legs

jordan7j

Hi legs, or "bossy" legs if you prefer!!!
Its not that I cant stand up for myself usually, i.e in shops etc, but when you see the junior doctors they either look scared to death, or dont seem to listen.
Will write it all down, I have before, but they dont give you time to go through it, its always a rush, but I know I must say soething, and get them to listen properly. Thanks, love Jay x