Hidden13 years ago

Hiya,

I was shocked to read your blog, you've really not had the best of treatment!

I feel quite angry for you that you have been suffering and not knowing all this time, I was lucky as I was diagnosed only weeks after onset and now have weekly checks with physio, bloods and monthly with consultant. I feel confident that everything is been done and I only have to ring the nurse if I can't handle the pain, this must be awful for you.

I'm new to all this but I am on the same meds as you since Feb, yes I did feel really tired but as I got used to them (around 6 weeks) and I believe this is a common side effect.

My physio nurse gave me some tips on how to move legs through the night without causing so much pain, this has helped especially with my hip.

Mine started just like yours did, one morning sore feet and by the end of the week I couldn't do anything for myself, but with the right advice and support I am feeling much better now. You really need more support from your consultant or doctor.

You need a second opinion for sure...

You'll get some great advice on this site everyone is a great support.

Good luck, I really hope this gets sorted for you.

Take care

Hidden13 years ago

Hi Sandy

You have had a rough ride. I think you should try to get to the consultant again, - do you know if you had to see a specialist rheumatology nurse? What were the blood results telling them? Have they just made a diagnosis from looking at you, because I had that once. I visited a consultant about 2-3 years ago and he hadn;t even had an up to date blood test, but just looked at my hands and said I didn;t have it! I used to suffer awful with my feet, tendons, on the bottom, my tops and tops of my feet (metatarsals?) they used to feel stiff and were puffy. Had swollen ankles and painful hips at that time, The only other joints were my knuckles and fingers, which used to swell up intermittenly at that time, but of course when I got to see the consultant the first time, they were not swollen!!! Hence he diagnosed I had OA. Things got worse gradually, and I was told to take more diclofenac, but this made me dizzy and fetl sick all the time (even with a stomach protector omeprazole) So just after I was diagnosed with RA and before I took the MX is came off the only med I had had for 2 years and this let the RA in Big Time! I had a flare from which I think i am beginning to recover. I so wished I had pushed more 2-3 years ago when I saw the consultant. So if you are still in pain and a bit of quandry I would keep going back to your GP and try and get back to the consultant and find out how they are diagnosing you?

Good Luck and keep posting and let us know how you get on.

Julie x

sandyb13 years ago

Morning, thanks to you both for replying, I see the nurse for drug monitoring & monthly blood tests. My consultant is not easy to talk to when I asked him why they did not agree with the diagnosis & then he changed his mind, he got very agressive towards me & told me if I was not happy with the treatment I was getting before he could say anything else I told him I wasnt getting any as he had just stopped the steroids before they could work. Since then he doesnt really tell me much when I saw him in March when my foot was swollen, I had a letter from my GP & he didnt read it he said Oh I dont know her, gave me some steroids for a week, I have an app with him in May but I have asked my GP to refer me to someone else for a second opinion. He doesnt even write to my GP when he sees me says he doesnt have to .I was seeing his assistant for the last 6 months but she has left to have a baby so I had to see him again, I have had 3 scans on my feet in the last year & they show inflamation & damage in my metatarsals , when I asked him the results of them he says he doesnt take any notice of scans. Even my GP doesnt understand it.

Rhumatiod factor showed up once in my bloods at th begining , doc says it was boarderline, but since then its neg .

I have app with nurse this week but she just asked me if I have any side effects & have a blood test.

I will call my GP on Tuesday see what he thinks at least I can talk to him.

Hidden13 years ago

Hi Sandy

RA can be difficult to diagnose as the symptoms can be representative of so many other disorders. However that isn't reason enough for you not to be treated appropriately.

Rheumatoid Factor is a waste of time and should not be used as a diagnostic tool. It can be positive but would not necessarily mean you have RA, it can be negative (as was mine) yet have very aggressive RA (like me!). If it hasn't been done I would be inclined to ask for an anti-CCP blood test. This will give a definitive diagnosis of RA if it comes back positive with antibodies.

Steroids will not treat the RA but will help to control the inflammation. Plaquenil is a disease modifying drug that acts on the disease itself and helps to bring things under control. Methotrexate likewise and is a highly regarded and effective treatment in the world of RA.

Any joint damage needs to be avoided which is why it is so important that an early diagnosis and suitable meds are prescribed early. You have done the right thing asking for a second opinion and I would press to get this as a matter of urgency. Make sure you keep your own record of symptoms, medication and questions you want to ask so that you get the most from the appointment.

All the best for a positive outcome

Lyn x

Hidden13 years ago

try to get a podiatrist appoint at your hospital if you have a podiatrist there

sandyb13 years ago

Good Morning,

I am now waiting for a referal app with a new consultant.

My podiatrist did make me a pair of innersoles but they didnt really help, Now its summer I find the most comfy shoes to wear are Fitflops as they have a thick sole under my toes as this is where most of my pain is, its like I am walking on pebbles.

Sandy

Hidden13 years ago

am wearing a comfy pair of sandal type flip flop things as I type this,, they are called tamaris active leather cushioned insole so comfy n

nice on feet.. think they are a german make.. my podiatry dept suggest as model dolly type shoes with strap across ankle and v flat heel.. yes i agree need ankle and foot support as my ankles not vstrong.. but sometimes you just need something soft and comfy round house etc.. some people were those crocs...hope this helps bought i nice confy pair of filled in shoes padders.. look at this company on line got mine from there jdwilliams.co.uk the padders.. the tamaris active were less than 25 quid and might have been less than 20 cant remeber the shop owner told she still had hers two years later.. the shop was at tewkesbury in gloucestershire but other people might well stock tamaris active