Sorry to bother all of you with this, am due to see the rhumy tomorrow for the first time since being prescribed methotrexate, I started on 15mg, and I have had big problems with the side effects, mouth ulcers, bad headaches, sickness, upset tummy, dizziness and two weeks ago ended up at em doc with an infalmmed painful rash all over my face. I am on folic acid, and I am trying to think what to tell her tomorrow. i go blank when I am in there with her, appointments terrify me.
I am on painkillers 8 paracetamol a day and tramadol three times a day, the swelling has not got down, and neither has the pain, it started in my hands and fingers, and in the last month or so it has affected my shoulders and the top of my spine.
I have had two steroid injections already, and I have read somewhere that a low dose steroid with mtx may work with early diagnosed RA there was an article somewhere, my head is in a whirl,
I am having problems carrying shopping bags, holding pens, peeling and chopping vegies, and it has messed up my mental health problems. Do i ask her about splints to protect my joints when carrying bags, and to give the hands a rest when they are playing up, only to wear for an hour to give the hands the rest. I am not sure what damage I am doing, but i am finding as time goes along that i cannot repeat actions with my hands, and in the lsat few weeks cutting up food, holding a cup is proving really hard. it got to the point on occasion some friends have had to hold cups for me because i could not to drink from, and cut up my food as i have not been able to. What a wuss I am feeling. The feeling hot and crap has come back, i need some aids to help at home, it is my indpendence, just want to do things for myself, you guys know what I mean, I feel you are the only ones who understand, and I have read a lot of your posts and you have helped just by reading most of them. I have to deal with hypermobility joint syndrome with the RA which is a conflcit, having loose joints with stiff ones, makes no sense but hey that is life. Any thoughts would really help, I am aldreay getting anxious which is not helping the RA. I feel so green as I was only diagnosed just before Christmass, I know the majority of you are going through far worse than me, and I feel crap saying all the above, it is like seeing it written down it is real. Was hoping she has make a mistake, but everytime I look at my hands and feel completely exhausted deep within myself I know she hasn't. Thank you for letting me vent, take care all of you xx
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Jetblack
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I'm not experienced enough to help you on this but I think it might help if you printed off the paragraph in this blog about the things you have most trouble with and give it to her?
As she has diagnosed you already it probably won't be a very long consultation and she will just be looking to see how active the disease still is and whether the Methotrexate is working well or not. She might be considering adding a new DMARD in to keep the MTX company as this would be in keeping with current NICE guidelines about halting the progress of the disease. Hopefully she will give you plenty of time, but going by my two appointments to date she might well not.
Be glad to get to see the rheumy at least - I've been on MTX for 5 months now and have never had my disease activity checked since starting on it and don't have any idea when I will next see a rheumy or which one I will be seeing.
I am surprised they started you at such a relatively high dose as 15mgs - I was started at 7.5mgs and have worked up to 15mgs slowly but you obviously have tolerated the most important safety tests so that's what matters. Be sure to tell her about the rash - or show her if it's still a problem. RA is not the only type of inflammatory arthritis as I'm sure you're aware and she needs to see any new developments for herself.
As tilda says stay calm,write down all questions that you want to ask. There are aids out there that can help,eg; two handled cups,chunky knifes,forks,spoons. Get a shopping trolley to help carry things.
Write down how your feeling,where it hurts, what your body,joints feel like eg;hot, cold, what sort of pain your getting and where your getting it. Tell her about the fatique that your getting,how are you are sleeping, whether your up with pain.
Print off what has been advised on from things that you see and and best describes how you are.
You'll be fine, they are not monsters you know,they ae there to help you.
I think the best thing to do is to take a friend with you and write a list of what you wanna ask, cos the last thing u wanna do is get stressed and start of fyour bipolar symptoms cos then u wont take anything in, if your like my sis!
I know when you go for the BP appointments they tend to be a bit stressful but i have found the opposite with RA appointments, as they just wanna go by how your swelling is, what problems you are having and what your DAS scores are. I think honestly if you print out what you have written it explains it all as Sylvie says. I had problems with methotrexate but they changed me onto other tablets then onto biologicals and so far i still have the symptoms but no real joint damage which is good for the future.
As far as the chopping etc ask them if you can see the occupational therapist and they can help with splints if they will help you, theres also gloves on the market that can give u a bit of support, by the way you havent said what ur bracelet is yet.
You rest tonite, take your meds and try to think of your creative stuff and then make sure someone wakes you tomorrow and have the alarm on so you dont miss the appointment( done that got the teeshirt) lol!!! lots of luck and let us know how it went?
, cyber hugs Axx
Take your list of problems and questions and ideally some one with you too xx
good luck for tomorrow.
Ask to be referred to an occupational therapist too, they will help with things such as holding cups and peeling vegetables etc xx
Thank you for all your comments all of you, my husband and a friend are coming with me, and we have complied a list of things to mention, thanks for all your support all of you and will let you know how it goes. Take care all of you. xx
Good luck, hubby will be great for prompting and remebering to ask things and also remembering what consultant says to you. I always get stressed at appts I think I have white coat syndrome so I know how you feel. Try to keep your breathing under control ( helps me in these situations) let us know how you get on. Take care xxxxxx
Lots of great advice, sound's like you've done what you needed to, wrote a list and taking hubby and friend to listen to the answers for you too. I remember seeing an ENT cancer specialist a few year ago, I couldn't remember anything she said (good job I had my friend with me to listen/hear what was said), she kept me right and explained to family what had been said.
I hope the appointment goes well today. You've been given some really good advice in terms of writing down your questions and having people with you to take notes for you, and as you can see, you are not alone in going blank when you go into the appointment. This is perfectly natural, but hopefully having people with you will help.
There are so many elements to your blog that I wonder if it might be worth discussing this in a bit more detail with someone on our helpline? We are closed over Easter but back in on Tuesday and our normal hours are Mon-Fri 9.30-4.30 on 0800 298 7650.
Just briefly, I think from what you've described it might be worth asking if you can be referred to an occupational therapist with regards to splints etc.
Kind regards
Victoria
(NRAS Helpline & Information Coordinator)
Hi again Paula (jetblack),
I have been planning to write a blog detailing my wrist surgery and rehab. It is going to be awhile before I have full use of my right hand. But I will try to tell you the things I have done to remedy being single handed in the kitchen. Look for it later today, Loret
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