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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi everyone, just received the copy of a letter from the rheumy clinc to my GP, regarding my appt on 27 Nov. It states that when examined I have swollen ankles, knees, wrists and elbows. That the mtx and traadol are giving no relief, and that this may be related to my job as a childminder. I am upset, as I told them from the begining what my job was. It also states that bloods were taken regarding rashes on face and mouth ulcers etc. Also that I have Raynaud's and Sjogren's, which I suspected, but wasnt told. It states that I had a "non blanching purpuric rash on upper shins which are non tender" what does this mean? A rash wasnt even mentioned. The urine sample shows trace of protein, and chest sounds are normal. What I am concerned about now is what happens about treatment, if they are basically saying its my own fault due to my job I thought they could control the pain, which would allow me to work at least part time for a while, even if the swelling remains. Does it mean I wont get another DMARD added or pred offered? My next appt is March, when I get the results regarding lupus/MCTD. Although I already know the results via haemotology. Really worried now, and dont know what to do regarding work. Thanks for reading this, sorry to be a pain everyone!!  BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Barbara
First of all, I don't think for one minute that your consultant is saying "it's your fault" but perhaps feels that your job could make the symptoms worse. There is certainly no way they would refuse to treat you just because you are working.
I'm not a medic, but from memory I think the so called rash MAY (and only MAY be due to something called (or similar to) vasculitis which is another hanger-on of RA and is to do with the blood vessels.
I don't think the consultant will want to start adding other stuff into your drug mix until the results of all the latest blood tests are back. If I were you, I'd pester the GP to chase this up and find out what your next course of action should be. Don't be fobbed off - just refuse to leave until you have received answers to your questions. Quite clearly you can't exist until March next without some proper pain relief. The GP will also be able to explain what exactly the consultant means by "rash".
As for being a pain - of course you're not - we all go through times of great stress with this blasted disease and are sometimes pulled in all directions trying to find a way forward. I've been there more than once.
Please let us know how you go on at the GP.
Love
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Hi barbara
I agree with jean re the consultant is not blaming you. He is on yosur side. He may believe that the work isnt helping adn its good that he wrote to your ooctor becuase if you end up being so ill that you cant work at least you have documentaion/paper trail that you are unable to carry out your work duties. Also he is obligated to copy your GP in with his findings to keep your GP in the loop so she understands whats going on with you healthwise in order to give you proper health care. Did you get a copy of the letter to the GP?
Its best not to self diagnose as it only causes worry and it could be something or nothing but your appointment isnt till March so hopefully you will be told before then what the outcome of the tests mean. If theses rashes are causing you issues then theres a need for them to be treated before March.
Can you speak to your GP or rheumy nurse? Unfortuantely with having RA tests and consultations are never quick to give answers. It then leaves us in limbo worrying about whats happening to us. Please dont spend time worry on this, distract yourself someway otherwise it can get all to much.
Do let us know how you get on.
take care
Mari
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Barbara,
Sorry to hear that you have been left in the dark about your consultation. I am discusted that your rheumy did not discuss his findings with you or a possible way forward. Usually, if my rehumy writes to my GP, they say what they have found, and new drugs and what they might do next, for example, my last one says added hydroxy to mix of drugs and if this doesn't work they are going to consider anti-TNFs. Did you actually get to see the letter and how the rheumy closed it? From what you have said, I would think that the rheumy would be reluctant to add another DMARD until all the test results are back as Jean suggested. I know that Inky has mentioned that some DMARDs can make Lupus flare. I would do as Jean says and see your GP and ask them to clarify it for you - but also to discuss additional pain relief in the meantime. You can't be expected to just drop your job. You need help with the pain until you can get a full diagnosis and the proper treatment.
Take care.
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 690
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Hi Barbara,
I agree with Jean and Julie, best to seek clarification with your GP. I certainly believe that it was not on for your rheumy to send a copy of a letter to you without having it's contents explained.
As far as work is concerned you need to be careful that it does not contribute to making you feel worse, but it definitely did not cause your RA. Have you seen an OT, I saw one and found her very helpful, she gave me tips on how to do things differently whilst at work and on how to conserve my energy.
I know you are self employed, but it might still be worthwhile giving Access to Work a ring to see if they are able to help or advise you. They came and saw me at work and made some adaptations and recommendations to my employer.
Love,
Barbara
XXXXXX
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Thanks for replies, I understand that the rheumy only wants to give as much medication as is needed, and not add others to the mix. Unfortunately, during the consultation he didnt mention what he thought, just that he would up the mtx to 15mg. I am seeing my GP next Tues 5th Jan as I have what I think is an infection on my toe, its fully booked until then, so I can talk to her about it then. I already know the results of the bloods, as I had a haematology appt on 23rd Dec and he looked it up for me, its all negative still. I know its not unusual to get this result with lupus and MCTD, as a friend has lupus and it took 10 years to actually show up!! although she was treated before that. I know the rash on my legs could relate to lupus or connective tissue disease too, just looked it up. In the letter under the management section it states that I have mouth and nose ulcers, and a rash across face as well as photosenitivity and easy bruising (the haem appt) they think there is an overlap syndrome here. The mtx to be put up to 15mg and await the results. BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Barbara, I havent seen an OT, nothing been mentioned but sounds a good idea, something else to ask GP. Was also wondering abnout podiatrist too, as feet one of main problems, thanks x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi ya Barbs so sorry such alot to take in for you hun Would def get gp to explain letter to you,re work no sure hes implying it making pain levels higher therefore not as suitable for you at this moment in time. i ahd to change jobs few times due this not easy i know. I was nanny as you know,then carer of many sorts,cleaner all of these for me were to much. hence im studying to change job. frustrating for you. sorry see you have sjorgens and raymuands they both can be linked to Ra and or Lupus known as MCTD which you did ay he mentioned to you. sorry he did not explain all new diagnosis to you. may be he felt gp have more time and knows yo more to go through it with you. ask me anytime hun and may be good you read up more lupus site re syptoms and this one to for reference and more info for your peace mind.not to much reading though as can end up being of negative effect adding to ones anxieties in my instance. oh ot and feet i did mention to you im sure,but yes gp is oen to do that feet they give a numebr to rign and you self ref for that dont have one at guys at moment unless new and ive not noticed. lv melly  cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Hi Barbara,
I am sure the rheumy is not blaming the job you do on the fact that both those meds are not helping you at present. TBH, the dose of mtx is rather low and 15mg may well help you much more but this will take a good few weeks.
I would definitely ask your GP to go through the letter with you and explain anything you don't understnad. I would also question the rheumy as to why you weren't informed by him of his further diagnosis next time you see him. A patient is entitled to proper and thorough exlanation of any dx, even if it is just a query!
With the addition of (query) Lupus and two other illnesses (Ray and Sjorgen's) the rheumy probably wants to see how your get on with the increased mtx before adding any other DMARDs etc.
Hoping your appointment goes very well on the 5th...
Much love and prayers,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Barbie,
When consultants write to GPs I don't think they always realise that the patient may get a copy so they don't write in a way that the patient can understand!
I'm sure he's not blaming your job for causing the RA.
It could benefit you though to take some time off to help yourself while you are newly diagnosed, just until the drugs kick in properly.
Don't go looking too much up on the net, sometimes people can convince themselves they have symptoms just by reading about them.
I hope your GP can explain things for you.
Love and hugs,
Doreen xx
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