Update......

[honeybee13]

Hi All, I wanted to let you know what has been going on as last week you all gave me such warm support.

I rang the hospital and told them I was not happy with my consultation and needed to talk to somebody as I felt so awful, nurse specialist rang me back and last Wednesday had an appointment with her. The consultant I saw the previous week was a locom and left on Friday!!!!!

Natalie was brill, methotrexate to be reduced, probably will go into flare as have high disease activity but this will help towards going onto biologics, on a positive note I may not. Suspicion is I may have seronegative spondyothropathy (need to do some research on that one). I don't mind what has to be done just need a better quality of life

[Barrister]

I too have spondyloarthropathy along with lymphocytic colitis, hypothyroid etc, etc, lol! Started Humira 7 weeks ago and seems to be working pretty well, I'm pleased to say. The first couple of doses gave me splitting headaches and awful neck pain but the last one was fine and my joints are getting better by the day with much less stiffness. The injection stings really badly but that's not nearly so bad as the usual pain so I can put up with that. Good luck. Clemmie

[honeybee13 in reply to Barrister]

Thank you Clemmie, hope it continues to work

[Hobbits in reply to Barrister]

Barrister I am so happy to hear your positive experience on Humira, albeit a rough start at the beginning.

[Barrister in reply to Hobbits]

Thanks Hobbits, it all seems to have settled down although have had headaches today. And shortly after I started Humira I had a flare of lymphocytic colitis but I suspect that was caused by Brufen which I was taking for the headaches!!!! Am now on a course of Budesonide (steroid for stomach/bowel ) and it has settled and the plus is no weight gain!!!! Clemmie

[nomoreheels]

I'm so pleased you've had a positive appointment but not in the least surprised the locum you saw has since left. I would think there have been others who had similar appointments & let's face it if he can't communicate with patients he'll have difficulty securing a permanent position in the UK.

A positive thing has come out of this & that's you have the start of a relationship with a Nurse Specialist which can only be a good thing as we see Rheumy's so infrequently. If you do start to be less controlled on a reduced dose don't hesitate to ring her, I'm sure she'll be compassionate & professional & suggest whatever will help you through it to get back on track, which I really hope you do from now on.

[Jeanabelle60 in reply to nomoreheels]

My Rheumy nurse is worth her weight in gold....don't know how I got through the last 4 years with her.

[honeybee13 in reply to nomoreheels]

Thank you, not really looking forward to the next few months but a journey that needs to be made but at least with Natalie I know someones there

[honeybee13 in reply to nomoreheels]

I must admit I do feel sorry for the patients who went before me as they were quite elderly and one lady came out and said "no bed side manner"as she walked out! Anyway moving on he has gone and hopefully the next will be better.

Thank you I do have a journey to make but do not feel alone now

[nomoreheels in reply to honeybee13]

.....& the less likely to complain possibly, but maybe his failings will be noted & the next one will be up to the job.

[hatshepsut]

So pleased to hear that you have seen the nurse, and she listened and helped. Just such a shame that you had to go through all that hassle. It's really not good enough, and what about others who may have had the same sort of experience, but had no support afterwards? What is the NHS coming to when a locum is allowed to wreak such havoc??

Still, as nmh says, at least you now have a specialist nurse to contact if you need to. My clinic has two, and they are absolutely great, they've helped me on many occasions.

Hope things go better for you now. M x

[honeybee13 in reply to hatshepsut]

Thank you

[Corsav7]

I've been diagnosed with Spondyloarthropathy and waiting to go on biologics as my liver function test results are constantly too high. The rheummy nurses seem to be really good and very helpful so glad you managed to speak to them. Good luck with your treatment xx

[honeybee13 in reply to Corsav7]

Hi Corsav, need to do some research on this as up till last week thought I was dealing with RA. Can you get both and does biologics treat both?

[Corsav7 in reply to honeybee13]

I believe so for both. Am on the waiting list for biologics and can't wait as really suffering. Only on painkillers and am exhausted x

[honeybee13 in reply to Corsav7]

Fingers crossed it comes through before Christmas for you xx