Hi my name is Julie, this is my first blog. I am not brill at spelling as you are about to see but I will try my best.
I was diagnosed in January 2010 with Sero Negative Inflamitory Arthritis, I had been suffering for at least 4 years before diagnosis with multiple health issues that now I know can all be linked to RA, I had bilateral Uveitus on three ocassions, I had back pain, neck pain, leg pain, feet pain and hand pain these were all diagnsoed differently whoever I saw I was told I had siatica, trapped nerves, pulled muscles and rsi anything but what it was!
I only got things moving with a proper diagnosis in Novemeber 2009 when I became so bad that I ended up in hospital as I was flaring bad and had a lot of swellings, knees, hands,fingers, feet and ankles. This flare was one off the worst I couldnt lift my own head off the pillow due to pain and fatiuge. Only then was I not treated as a hypocondriact and tests were done, but by this time damage had been done and I couldnt even get to the toilet on my own.
When I say damage had been done I can no longer bend or move my right trigger finger and right thumb both have fused due to damage, I have limited wrist movement in right hand and damage shown on MRI's also in lower back disc's worn away, my feet arches have dropped and knees show damage all things that if were checked out five years ago could have been no-were near as bad. When the first blood tests were done in hospital they checked Rheumatiod factor I didnt have it, but then they checked ESR which was at 180 and CRP which was at 48. Both of these meant nothing to me at the time but now I know these readings are very high. As soon as they asperated the fluid from my knee's and they had my temperature back down they sent me home from hospital with a referall so see a Rheumatologist. My appointment was booked for the afternoon off December the 18th @ 2.00pm, I was all ready for my appointment in so much pain that day when I got a phone call that morning to cancel my appointment due to sickness, needless to say I spent the rest of the weekend in tears and more pain. My next appointment came through for 5th January at 9.30am, on the morning off my appointment I woke and found we had a massive ammount off snow the kind that was dangerous to drive in. I phoned the hospital and asked if I could rearange the appointment due to the weather, the "lady" on the phone told me if I failed to arrive to my appointment at short notice I could wait a long time for another appointment, so after getting very upset on the phone to her and getting told to arrive or be punished basically then I came off the phone, my partner was still stuck walking home from his job which he works on the night shift and because off the driving conditions he had parked his car and was walking the 8 miles home, so I begged my dad to take me as no taxi's or buses were running either. We arrived at the hospital a journey which would normally take 10 minutes took three times that even though we only seen 4 other cars on the road proved how crazy we were. I arrived in the rheumatlogy department and the nurse who seen me walk in looked really shocked and said oh we are just in the middle off cancelling all appointments at which point I just burst into tears and my dad who had already been dug out off snow twice on our way to this appointment told the nurse what I was told when phoning, the nurse went to see who answered the phone, I seen one very red faced receptionist who obviously lived round the corner and walked. The nurse came back appologised and said I had two choices to wait to see if any staff turned up or to go home, so I decided to wait an hour later as I was ready to go a rheumatologist came in on foot, she wasnt the one I was booked in with but I didnt care, I just wanted help. She dried off we were made a drink and she invited us into her office were she examined me and asked questions for over 2 hours. Then she gave me a prescription for much stronger pain killers (heaven a little relief), and more steriods, then she sent me straight for x-rays, blood tests and a MRI scan things I would off had to wait for appointments normally but as not many others were mad enough to be out in this weather I got seen straight away.
I was phoned a week later and another appointment was made for me the next day as they had all my results, this time I seen the rheumatologist I should have seen he read throught the notes from my prevoius visit, did a quick examination and dianosed me with sero negative inflamitory arthritis, and then proceded to drain the fluid from my knees again.
I was given Methotrexate at 7.5mg per week and then to gradually build up to 15mg.
After 6 weeks I was seen again still no improvement I was prescibed Sulfazalazine I took these for 4 weeks untill I could cope no longer with the migraines they gave me, then I was advised to stop them and increase mthx to 20mg. After a further 12 weeks I was seen again and there was a slight improvement but not enough so I was told to up to 25mg of mthx.
I was then not seen for a further 12 weeks again, apparently due to sickness in the department, I was still in lots off pain and my das score was still showing that it was high diease activity. Which is still worrying me as this means its still working hard at damaging my joints further.
I was seen this time and told I had chance off being refered for anti-tnf drugs, the process for this has taken at least 6 months due to sickness in the department and even though I was told three weeks ago that I have qualified to start Enbrel I am still waiting as my rheumatologist is off sick again and he needs to sign the prescription I was told to wait a further 2 weeks and phone back if Ive not heard anything.
So at the moment I am still in daily pain, flaring frequently and really hoping for these anti-tnf drugs to work when I get them as I belive they are my last chance of any improvement. If you have managed to get to this point without falling to sleep or getting fed up off my spelling mistakes then thank you for listening and hoping you are all having a pain free day xxxxx
Julie, that was a very informative blog. With regard to the cancellations etc it makes me angry what we have to go through. As for you having to get to the hospital through heavy snow and bad conditions is unbelievable!! After all that to find no staff!! So glad you waited to see the rheumy though, and get stronger pain meds. I hope you get the script signed for the Enbrel soon. Lets hope your journeys continuation with RA begins to get better. Take care
Julie - just read your blog which I didn''t see before you commented on mine. and you called me superwoman. It makes me mad and furious at the way people are treated. You read the leaflet and it makes it sound all so bloody simple. You get a diagnosis, you get the treatment, you get better and start leading a normal life. My arse! I think the way you have been treated is abs bloody lutely awful (excuse the language) It makes my blood boil. I have recently read somewhere that someone who has been diagnosed for years has been told they must wait months and months between seeing their consultant because they are giving newly diagnosed patients priority because they have more chance of pushing the RA Into remission. IF ONLY. I do hope you start to feel better soon, and don't wait too long, If you are in pain moan at someone until they do something about it. Phew, sorry off the soap box now. Look after yourself x
Thanks ladies I look forward to sharing information with you all on this site but will try to shorten my blogs a little lol.
Julie I agree if you read all the leaflets you are lead to belive you will be ok to get on with life after 12 weeks, I was convinced it was me after I had no improvement and my pig ignorant rheumatologist made me belive it was too, needless to say Ive seen another rheumatologist since and he is so much more understanding, but seeing one is so few and far between its untrue.
I was in so much pain whilst waiting to see the Rheumatologist for the first time (3 years ago) I found his secretary's phone number online and rang her, in floods of tears, explaining that I thought I was dying! At that time no-one knew what my problem was and I and was desperate to know if it was RA or not! All the while none of my blood tests, even for for RA, came back positive with anything and although I flare my ESR is never any higher than 11 now - frustrating when they keep telling you that it's good but you're in agony!
They make you wait for so long and then treatments prescribed take months to begin to work and all that time damage is being done which freaks you out even more! It's rubbish, the whole darn process is silly so if you can find a way to cut corners (me and my gp are now in cahoots and she gives me the right contact info - ssshhh!) then just do it! Keep bothering them til you get seen, the longer you wait for them to come round to organising an app the worse you'll be.
People who don't or won't even try to understand our situation make me so angry. Even some of my family members refuse to find out about RA, they think it's all in my head and that I'm really fine. Which isn't at all helpful, luckily I have fab neighbours and friends and of course my lovely mum who have seen me at my worst and are happy to help me out.
Hope someone gets their bum in gear to get you sorted with meds soon, if not give them what for! Pain free hugs! x
Hello, yes on the silly process. I nearly got knocked off my anti-TNF because my diarmids score was too low. I didnt know the answers I was supposed to give and what they were measuring. I was actually knocked off them by a new consultant and had to go back to my old one who smoothed things over. But I think they were as concerned about maintaining good relations within the RA team as making sure I didnt relapse! So when I dont forget I never answer questions when I'm not sure what they are expecting.
Hi RA Fibro
Welcome to the site. Don't apologise for writing long blogs, this is the place to let it all out. I have learnt so much from a couple of weeks on this site, all the other bloggers are so helpful and do really understand.
I was diagnosed 2 years ago after eight months of pain and struggle, lost my job and am still not in remission. I am due to see the nurse in 2 weeks with a view to starting antitnf injections, however I have been at this stage before and then the rheumy changed his mind!!
Like most people I was told I would be in remission within months and all would be well. I am not, it is not. It's more a case of you have it now live with it.
This site has given me new hope if only because people undderstand and I know I am not alone or going queitly insane!
Hope the injections help, do keep us posted. take care xx
Hi, gosh that is an awful story regarding the drive in the snow etc. I hope you get the right treatment very soon. I was in that place where I thought I was dying, but thank god I got treatment quite quickly. I have to say I paid for it all cost thousands € first year, and luckily my company pays for my health insurance. It just shows you the unfairness of the system. At one point when I thought I might lose my private health insurance, my aunt a long sufferer said well you will spend your days queing at the hospital and seeing different RA specialists and they won't give you injections. That is the situation in the Rep of Ireland. However, anti tnf biologics are only available thru the public system which is akin to U.K's N.H.S. I wish I had a site like this when I was newly diagnosed, it was so isolating and frightening. 'The Rheumatoid Warrior' an American blog is excellant also, very informative. I notice most people on here are prescibed embril, I was advised Humira which is what am on (adimulab). Does anyone know what the difference is?
Gina I am not sure what the difference is but I was offered Humira, Enbrel and Cimzia, but I found more people on RA Chicks website giving Enbrel better reports so my choice was Enbrel also because it was weekly and easier to remember if it was on the same day each week.
Wonky it really makes me wonder if remision is possible when I read others storys.
I dont know about all off you but I get sick off the mircile cures, copper braclets will cure me and cider viniger and honey! Yeah right thats why the doctor prescribes all these expensive drugs!
Really nice to meet you all, doing this today has really cheered me up on what was otherwise a very painfull day.
My doctors say I'm in remission - am on infliximab 8 weekly + methoxitrate. What that actually means is that I do still have aches and pains and chronic fatigue a lot of the time, but I am good walking wounded. I lost 5 kilos during the autumn/ winter and that has helped a great deal. More would be good.
But it has taken me about 8-10 years to get to this stage. I think focusing on myself more, tryiing to get more gentle exercise and losing weight has done a lot. But its not 100% - and I dont know how much more progress I'll be able to make. Maybe I can keep pushing myself.
One thing I do find - I'd be interested to know what others find - is that I am worse on the aches and pains when I've got a cold.
Cathie I so agree with you if I have a cold I am 100 times worse on the aches and pains.
i am a nurse,so all the medical staff i come into contact with assume i know everything..but actually rheumatology is not my speciality and i come away not having full info.
My consultant is very nice,but no speciallist nurse at all to call for advice..i was started on hydroxychloroquine and methotrexate then told to go back in 4 weeks to be told consultant is away and i would have to wait 7 weeks . Had a flare,( unbenown to me at the time ) and had all meds stopped..left with nothing.
Thus felt very ill again, fluey badly and short of breath with muck from chest..saw Gp given antibiotics x2 courses as would not go..3rd course given my consultant (at 7 week point) at this point taking paracetamol ( not great) for pain. Did sputum culture through my work...had Haemophillus influenzae..the one we protect kids with in vaccine form!!! All brought on by the RA it seems.
I really am greteful to the nras,i joined in desperation during flare number 2 and emailled for help...almost return email a fantastic and very supportive and helpful reply.
Hoping for speciallist nurse soon in unit..just for the safety blanket really.
oh by the way,am 40 this year,married 15 years 2 children aged 16 alomst and 12 live in middlesex.
ra - fibro just read your first blog.... sulphasalazine hospitalised me, had ct scan and lummbar punture cos head aches were so severe..., I am desperate to get ant -tnf.. on 3rd CRAPPY dmard up at 1.40AM this first blog is outstanding, only just ready it as was searching on tags of anti tnf
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