Hi all. I would like to share this with you. My last visit to Consultant was 4 months ago and my disease level was active but not as bad as the time before. I had a steroid inj in my shoulder 7 weeks ago and have been great ever since. A bit of stiffness here and there but no pain anywhere and I feel fantastic. I know the roof might cave in soon but very happy right now and being very positive. I saw my consultant yesterday and she said I looked great and I said I felt great and she asked me what I had been doing so I told her nothing but prayer and antioxidants. To cut a long story short, she checked my joints and apart from one or two that were a bit sore everything was fine and I was smiling away thinking she was going to say well that's amazing but she said that my disease activity level was the same as 4 months before and that we still needed to look at biologics. I am shocked. How can that be? I don't want to take anything else while I feel so well. She agreed to let me carry on as I am for now and see me again in another 4 months but that although I have no pain she can tell that damage is still being done to my joints. Has anyone else experienced this? It has knocked the wind out of my sails but I am still positive and determined to prove her wrong although I think she is wonderful and I know she is probably right. I would be grateful for any comments.

Sheila

I'm afraid so, Sheila. I feel reasonably OK, too, apart from the twisted knee amd sore hip but according to my rheummy last Wednesday the RA (which had been in remission) is back and he is putting up the drugs. There seems to be no rhyme or reason to any of it, does there? However, I did have quite high levels of inflammation in the my blood results, so I expect he was going off those. I know it's a kick in the teeth, but keep on practising the cannon shots and I'll see you on board on the 29th!

Take care lovely
xxxxxxxxx

Hi Ceri, Jean and Jenni

Thank you all for your comments. Ceri - I had my bloods done at the same time so don't know what they are yet. My Consultant said that the joints in my hands were swollen but they don't look swollen to me. I am so grateful for not being in pain and long may it continue but I am a realist and I know it won't last forever. Jenni - I agree with you. Right now, there is no way I am going to take biologics. I will consider increasing mxt but will have to see what my bloods say. I don't see her again for 4 months so no doubt all hell will have broken lose by then (or not.) I am a great believer in prayer and have a strong faith so I will continue to ask for help from above. Jean, I know you have just been in remission and now things are bad again. What a weird disease this is but your support and the support of all of you is very appreciated but please Jean can I have my parrot back?

Sheila x

hi Sheila,

if it were me and i was feeling well .. i would also ask for longer before having to decide about change of drugs. mainly because i hate change.

i know there are no guarantee's with RA, and things might be different four months down the line,

hopefully four months in the scheme of things won't do untold damage.

good that you are feeling well,

Suzanne x

Hi Suzanne and Doreen - Thanks for your comments. That's exactly how I feel but it's good to know you feel the same. I am definitely not changing anything for the next four months. I am completely staggered by what she said. Fortunately, I am going to the Fylde NRAS group meeting tonight for the first time and as luck would have it there are two speakers and one of them is speaking about biologics and how they benefit patients with RA. I am going poised with pen and paper and questions. Will let you all know what he says.

Sheila x

Hi Sheila,

Lovely talking with you today, I do hope you get the good news you are hoping for tonight. Surely if you feel good and there is no obvious swollen joints your bloods will show that. I pray you keep really well without any joint damage.

Take care Lorna xx

Hi Sheila,

I`m sorry your rheumy gave you a bit of a shock. As you feel so well in yourself, I would probably hold off on the biologics too, certainly until your next appointment : were I in your shoes that`s what I think I`d be doing. With me, starting the biologics was Hobson`s choice, as everything else had failed and I was stuck in a wheelchair.

Keep practising that Sailor`s Hornpipe - do remember that when you actually dance on The Day, the music will be played at the appropriate speed, ie very fast.

Kathleen x

Thanks Kathleen, Rose, Lorna, Jean and Amanda. (Nice to meet you Amanda)I don't understand it either. I didn't get much more info at the meeting last night either. Rheummy nurse there said that it is the case that even if no pain the joints can still be inflamed and that causes the damage. I am thinking I have got the wrong end of the stick but on my previous visit Consultant gave me a book on biologics to study before my next appointment. Anyway, I am just going to carry on as I am for the next 4 months unless I have to seek extra treatment before then. Who knows with this cruel disease? Jean - It was so busy at the meeting last night, apart from a wave I didn't get chance to speak to Lyn.
Kathleen - just discovered record on 78 rpm.No wonder my joints are swollen!

Sheila x