wonder when i will get my new treatment .

[pottypam]

Saw my Rhumy on the 9th July and told he wants me to have Toximibi???? lol memory rubbish and spelling getting worse . well anyway just been waiting for my assesment for the treatment . Then had to see my doc about the sorness in my mouth and the terrific pain in my neck and shoulder , and after being told ."You will have to tell your rhumy about neck as I do not knw what to suggest and he has recommend new treatment " I mentioned that not heard from them yet about the new meds and he looked atme all stroopy like and said "They have to get it authorised as it is very very expensive you know " and made me feel that I had had enough spent on me already . I really think this doc not like me much lol, but that goes both ways . I ask questions now that once I never did . and I dont think they like it . ,but made me feel de awkward . this why i hate the going to my doctors , actually got called a drama queen when i went about an eye infection ,this from anurse never seen or talked to before , but she thought it was so funny . she said it 3 times . then gave me antibiotics . Think it bugging me today as in pain and ache and face gone numb and hands not working right , so please excuse spelling as it takes ages to go over it to correct it . and just sooooo tired ....... want a good day again please .

[Hidden]

Hi Pam, there's nothing more frustrating than having having no control over your own life and waiting on this new treatment must be awful for you. It sounds like you have the same wonderful relationship with your doctor as I do with mine. I actually think if I dropped down dead in the office they'd just call in the cleaner to shift me and not bat an eyelid. I wish Dr's were more like on tv lol, I'd quite like to be on the list of Doc Martin as he seems to know about everything. Not too sure about his bedside manner though either! That nurse sounded a bit out of order too calling you a drama queen, how dare she! I think these people catch us off guard at our low points and make matters worse. I think I'd like to grow a thick skin and start biting back a little. Hope you feel better soon and good luck in securing your new meds.

Paula x

[sciqueen]

Hi

The biological has to be approved by you health authority, once you have passed the assessment criteria. This could take anything from two - to a few wks depending upon how quickly your health authority pass these things, and whether or not your consultant has rushed it through. There is normally a waiting list.

The cost is to your health authority as they (your rheumy team) authorise it and it comes out of there budget. As I understand it anti tnf is authorised & distributed via rheumy team and gp are not authorised to prescribe biologicals, hence I don't think it comes out of their budget. However I suppose there could be gp surgery/units that do this. My health delivery thingymajig nurse told me the above.

Your gp team have no reason to treat you that way and make you feel uncomfortable. Unfortunately some surgeries are like that. It does not cost anything to offer good manners & kindness.

I think the drug you are after is called "tocilizumab". You should of be given a info leafIet & shown how the drug is administered. I've copied a couple of links to give you further info on it.

nras.org.uk/about_rheumatoi...

arthritisresearchuk.org/art...

Hope you feel better soon & get the authorisation soon,

Take care Sci x

[pottypam]

Thank you sciqueen,, yes that is it , I do have a leaflet ,but as with most things with me if not put in the wallet I keep for these things at once I lose it .. My memory is getting worse and words get jumbled ...and as toungue get numb mmm side effect of something or just me lol

I have had 3 other lots of these type of drugs , Infliximib, Humira and Rhumicib? and the waiting time was not very long ,, think I am just impatient at mo and tired , as usual thinking shall I go to the docs about the pins and needles in my hands feet and arms and face or my neck pain and know will feel bad when there .as they make me feel a waste of time . they know they can not do much for me but a bit of respect and reassurance and understanding would be good . People used to moan about my previous doctor , but after got used to me he was great to me ,, he knew me understod me and always took an interst and offered advise . If I had not moved UI would still have him am even thinking of trying to move back tothat area . But the thought of moving again soon knocks that idea on the head and so dread the docs and still only go if I have to .

I wonder if he thinks I am getting alot of late as the lung probs mean I have to see the respirtaory nurse , my optician has requested an appt with an eye specialist (recieved today ) and due to my treatment from radiotherapy I have a weak bladder and bowel so need treatment at a clinic for that and they wanted my doc to prescribe a drug to help but when I rang them as told they had not heard anything but the clinic said they had sent it . so I give up chasing and wil se them at clinic soon and push them to find out rather than again ring my doctor . At this moment just want ot hibernate and wake , well when they can cure it lol, but prob be too old to apreciate it lol

[Hidden]

Oh Pam I'm so sorry you have to cope with all this health crap and also get no kindness or respect from your health professionals. It makes such a difference when people are respectful and kind I know.

I think some surgeries just forget to keep compassion in their manifesto/ protocol - they leave it behind somewhere, if they ever had it to begin with of course - and then they just turn into cynical jobsworths.

It makes me feel so lucky because I see two GPs - one who is kind and funny and the other who is a bit more Doc Martin but very good looking with it and not nearly as blunt. I go to him if I want answers and if I'm needing a bit of certainty and a bit more knowhow about all things rheumy - and if I need more time and compassion with a bit of humour then I see the woman. Both are pretty good I have to say and the practice nurses are fine. I don't expect sympathy really but now I read your blog I realise that I'm very fortunate and it does help enormously with a disease like this. We have enough problems dealing with a chronic condition and all the misunderstandings that go with it - don't need vile people calling us drama queens etc? If they knew how it felt to have RA then they would lean to zip it when necessary I think.

I believe my GPs and rheumy are what we should expect from the NHS and if we get less then we should make it clear that this is not okay. I once had a really horrible GP - he was up here for years and he had favourite patients and dissed the other GP who was sweet and was my usual GP (now a consultant anaesthetist). They were both in charge of my 3 maternities and around when I had little kids so I saw more of them than I'd have liked because I was quite ill for the first pregnancy and then had lots of threatened miscarriages etc. The foul one once left the door wide open (wedged it with his foot) and proceeded to humiliate me about an inner ear infection that kept coming back. It turned out that his wife had booted him out the week before and was having an affair. Well the following week I was in agony and once again landed this man and he tried it again. I stood up and looked him straight in the eye and said "do you think I'm a masochist? Why on earth would I be sitting here seeing you - the nastiest doctor in town - if I wasn't in extreme pain?!" and he went pink and immediately climbed down into being doctor. He gave me a drug - the ear popped a few days later and lots of clear fluid appeared. I phoned to check this was normal and got my usual GP who said that the nasty doc must have known exactly what was wrong because he had given me a very specific antibiotic. He said this was one of the most painful infections it was possible to get and very closely related to Meningitis. What a complet bas**ard!!?

I tell you this tale to show that these people need standing up to. We pay our taxes and they get extremely well paid form them - even the practice nurses have good jobs which puts them the fortunate category in my book. So please don't let these people get you down too much. You have quite enough to cope with. Tilda xxx

[sylvi]

Girls,you should expect respect from your health proffoshinals(can't spell) and if the don't then contact your practise manager as as far asn i'm concerned it is bad practise. You want to ask them would they like you to treat them like that.

At the end of the day they want to remember that their wages are paid for by us the tax payer and as such we pay their wages. That will give them something to think about.

Give them hell. Sylvi.xx