Oooo Barbara this sounds horrible for you. The sooner Monday comes the better.

Thinking of you Barbara , hope you can get some help on Monday at the hospital

Sophie x

Barbara,

Have just caught up with whats been going on. Hope you are not getting any worse?

Take care,

Nina x

Thanking you all for the kind replies,

I saw the rheumy reg on Monday who did not know what to make of the pustular spots on my feet which are painful, and have now spread to the palms of my hands; they look awful . I was seen my a consultant dermatologist the next day who told me the rash could be a form of "psoriatic arthritis" and not a reaction to the anti tnf. However, I then bumped into my rheumy nurse who took one look at the spots and said it was a reaction to the Humira and told me to stay off of it until the spots have cleared up.

I really don't know what to think, all I know is that I am feeling pretty awful and can't walk far on my swollen spotty feet which look disgusting! I am SO tired and can hardly keep my eyes open for fatigue, and seem to sleep most of the time.

I need to stop thinking about how my life has changed, and try and adjust, but as soon as I think I'm coming to terms with what has happened to me over the past 18 months something else happens, and feel as if I'm back to square one again.

Some of you know about my hair brain ideas, and I am very serious about this one; I am planning to take myself off to India to an Ayurvedic retreat in Kerala for at least a month, and if the treatment goes well possibly u pto 3-6 mths. I'm thinking I might be better off suffering in "paradise" than stuck here at home trying out loads of drugs that are making me ill and are doing nothing for the RA. I know I am being looked after well by my rheumy team, but have been told I am difficult to treat because of my numerous drug intolerance's and dodgy liver. So with this in mind, I feel I'm not left with many options other than to try out another anti-tnf, and to keep my fingers crossed that one will be found that I can finally tolerate.

Jean my lovely, I have been thinking of you and did try to call you yesterday and today, but our local telephone exchange is not working because of a fire. I will try and call you when the telephone lines are functioning again.

love,

Barbara
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Oh Barbara, just catching up with the news here, what a tricky time. I think all your hospital specialists coudl do with having a case conference and talking to each other, then writing a summary and info pack to your poor gp practice. They can't expect your GP to manage such advanced medicine, really. If you go to Kerala, can you please take me in your luggage. I think it's a truly brilliant idea. The climate there (outside of monsoon) is so, so healing in itself and whether or now ayurveda works, I bet a couple of months of fresh air and rest, clean healthy (usually veggie down there) food and lots of their healing feeling therapies would be a joy. I hope I can do something similar when the boys are old enough to do without me for a week.

I love Kerala. Though I think I'd skip the caffeine enemas they did to some celebs on TV once

I hope you are managing to keep your spirits up a bit. If you're at all mobile in the next two weeks, I'll be taking my boys to the zoo a couple of times, could we meet? xfx

Barbara, I'm so sorry your rash (although it sounds much nastier than just that) hasn't started to go down yet. You don't seem to be having a very good time of it at all lately.

As for your trip to India, I think it sounds fantastic!!!! And as you say, even if it doesn't heal, you'll certainly feel better just for having the experience of it. How exciting ... I'd definitely do it if I were you.

Have a good easter weekend and sleep loads if you need to

x x
Joanna

Eleanor has suggested that I should not go out to India on my own, does anyone want to join me?http://www.aryavaidyasala.com/%28S%28ybuuh0555nmhuj455pmt0a55%29%29/index.aspx It's not that expensive when one considers that one would need to find £900.00 for 28 days stay at the hospital inclusive of treatments, board and food, and then the air fare which should cost no more than £400.00.

I'm a seasoned traveller, and dare I say would make a good travelling companion. I'm thinking of going when the winter sets in, or if the anti tnf's fail, at the end of the summer. Any dare devils out there, am I tempting you?

love,

Barbara
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Oh, Barbara, I'd give my left arm to go with you! Unfortunately, two little people would require my presence at home. What a fabulous opportunity though!

Joanna