Hi all ,hope you are all having a pain free day or getting some kind of relief,
i wanted to share with you all some good news !!!
I have just had a call direct from my rhuemy consultant who rang me at home to see how i was as when he saw me on Tuesday i was in a really bad way , unable to walk, due to my knees being badly swollen, my wrist, my hands and fingers were extremely swollen,which is how i had been left since Dec 11th after having a very poor consultation for the whole of 3mins with a rhuemy nurse who couldnt be bothered to give me the time of day. He was concerned and wanted to know if the steroid had took effect. I told him i was alot better than i was, just suffered severe pain in the lower part of my back after the injection and that i had pain in my shoulder and neck now.
He said they were going to move fast on getting me sorted on my meds as my bloods had come back with very high activity more than i'd ever had before. He also said he had spoken to the rhuemy nurse whom i had complained to him about on Tuesday when i saw him ref the 3 min consultation she gave me in December ref how i was getting on with meds and my examiniation and telling me to continue on with them even though it should have been quite obvious to her(his words not mine ) i was suffering severe side effects she had sent me away and told me to carry on taking them and it was my poor Gp who had to sort the mess out.He apologised to me and said that i had suffered badly because of the careless attitude of the rhuemy nurse and that i was one of 5 people who were treated in this manner that day. (Could give a girl a complex if i had of been the only one lol :)) that it was not acceptable. He said she claimed she was stressed and over worked and was extremely sorry for her actions. He said she wanted to phone me to apologise but he wouldnt let her till he spoke with me first . He has said that due to her carelessness i have suffered uneccessarily and he was so sorry for this,( Maybe thats why they are moving fast on sorting my meds out?)
To be fair he is a lovely consultant who always gives genrously of hs time. To be honest im glad its been sorted out because i lost total confidence in the nurse. He has given me a telephone number to contact him on if i need to ref any concerns or anything to do with my meds and he will call me back. Maybe i have made noises in the right place at last something got done. To be fair the whole rhuemy dept are brill and very warm and friendly the nurse is not over friendly but never treated me the way she did that day. so just a word to the wise if yo are badly treated as i was complain to your consultant it may get you some where as it did me cant promise tho.,How good it made me feel that some one actually listened,after all we are takinng powerful drugs and not something to be treated lightly, especially if having severe side effects. But at least its been dealt with and wont happen again to me or anyone else in future.
have a pain free day all love lena xxxx ps sorry for going on a bit xxx
Your blog is a joy to read. (Now your consultant is on the case) I sincerely hope your RA will now be sorted out. Thank the lord your consultant is so dedicated. xx
Thank you miss, i was so shocked that he personally phoned me. You know how hard it is to get to see them but i must say yes he is very dedicated to his patients, he is a lovely consultant never rushes you and takes the time to listen to you . I agree its good to know he is on my case. I was so pleased i was taken seriously. i dont normally complain in fact i just told him about what happened on my last visit so wasnt really complaining just saying how it had left me and how i felt. gave me hope at least.
These Rheumys have been getting a good press here recently & yours sounds wonderful. I agree that they often do respond well if you have concerns & maybe all the more so because it's a relationship for life, unfortunately ...... unlike with a lot of diseases they are going to see us again & again over the years so need to listen when things go wrong or it could all get a bit unpleasant!
Well done for standing up for yourself & getting a result!
Luce x
in reply to
Thankyou luce, i am new to all this only got diagnosed september so together with that and trying to come to terms with the disease and the state i was in i must say the way she treated me left me feeling really low and untrusting of them.its only because i talked to a rhuemy nurse over the phone when i got home that i went back. She couldnt get me in to see my consultant till tuesday gone and i refused to see that other rhuemy nurse as she was the one i was assigned to so i struggled on in pain not knowing what else to do and i didnt know about this site then. I think they need your trust in them in order for them to treat you. So that you feel confident in talking to them and letting them know how you feel and in trusting them to give you the right meds. I am annoyed that now things have progressed to a worse state of affairs but they may have still done this even if she had changed my meds. I'm just glad its sorted and i can continue my care with my new rhuemy nurse. To be fair the meds are powerful drugs and not to be taken lightly especially as we are the ones taking them and any severe reactions need to be addressed medically as well as in a professional manner which wasnt done in my case. So i'm glad that i did say something now. xxx lena
I have just replied on your question about Certolizumab but just seen this and wanted to say how thrilled I am that your consultant took the time and trouble to phone you. That is really refreshing to hear. Just wanted to say that maybe you could take up his offer of phoning and talk to him about your worries about the Certolizumab/steroids. Hopefully he would then be able to put your mind at rest a bit and make your decision about the drug an easier one.
Thank you tilly i did discuss it with him today briefly he knows how scared i am and is trying to help me we are going to discuss it further but still wanted to get everyoes point of view as it us that actually take the drugs and have experience of them. Tha.ks tilly your so kind xxxxx
My private rheumatologist is like that - actively checking up, really caring and desperately trying to help me (without a lot of success given that I am reliant on the NHS to provide me with the treatment recommended). Unfortunately the NHS rheumatologist is more like the nurse you describe - he seems to want to ignore me as much as he possibly can between appointments, and do the minimum he possibly can get away with at the appointment.
Great news, it makes such a difference to have support, Take care Xx
That's wonderful - you are very lucky to have such a good consultant who obviously cares about his patients. Earthwitch and I share a consultant. He's good at getting back to me via a physio but that is less than ideal really and we have no rheumy nurse up here. An unsolicited phone call from anyone in my medical team would make me feel a whole lot more accepting of this disease and the RA meds I must say. I hope they find a treatment that works and doesn't give you awful side effects soon. Tilda x
Thank you all for your kind words,
i'm just still finding it difficult to take in all the information on RA and still there is so much to learn and seek advice on as its been said its a long road to travel and i have a long ways to go yet. I smile and put a brave face on it all but really i am not really dealing with it inside, i feel like i am struglgling to keep my head above water. I know i have to learn to accept it. lena xxx
thank you , as i said to jojo i did feel sorry for her we are all human and capable of error after all. So i am willing to forgive and forget . xxxx
Fabulous consultant! He sounds wonderful, please clone him and send his copy over to the Isle of Man please. I need someone like him
So pleased for you, this is excellent news, that your Rheumy took time out to ring you personally, sad that the nurse felt so overwhelmed that she treated everyone on that particular day in a less than caring manner. Of course we appreciate how overworked and stressed our NHS nurses are and we all have 'off' days but when you're sick and in need of help and reassurance, a few curt words and a dismissal can leave a lasting mental scar. As if we don't feel low enough already!
Wishing you a pain free day with gentle hugs
JoJo xx
in reply to
i did feel rahter sorry for her i think she her self was under pressure as it is a large clinic and she has to see an awful lot of patients, so i did feel sorry for her on that respect , but as you say we are on powerful drugs and low in ourselves and need the support and help. But i have held no grudges i would have gone back to see her after the chat with my consultant but she is not there at present, maybe she was going through a crisis of her own i dont know and i had been seeing her previously and she had been okay with me, so i am trying not to be too critical of her after all we are all human and can make mistakes. Just need to be careful they dont effect peoples health. thanks jojo. hugs lena xxxx
Dear Lena, glad you have some progress and a great rheumatologist! The nurse should be very ashamed of her behaviour. (It takes me five minutes to get my coat off/settled on the chair so I would have had zero consultation with her!!) I am lucky to have two great nurses at the mo but it hasn't always been the case. Previously I had one who phoned me up and shouted at me at home, and on more than than one occasion. I think you won't have that nurse trouble again now a good Rheumy is on your side. Good luck with your treatment and appointments and hope for much better days soon.
Julie x
thank you julie sorry i'm late replying, i think that was disgusting behaviour from the nurse who rang you and shouted at you . I wish i couold have been there i'd have sent her packing with a fly in her ear, i'm okay protecting others not always good at it when its baout me tho, the cheek of her. hope you okay and have found a nice rhuemy nurse now. hope you have better days hugs lena . :))
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