Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hi I'm Paula from Devon, England!

Thank you fonzy - happy new year - Paula

Thanks Lisa, dont worry I will be going as I'm so fed up will do anything. Happy New Year - paula

Wow thanks John - a mine of information! No one has ever discussed HLA B27 with me so I dont know if I'm pos or neg. The diet stuff sounds really interesting and something I am going to read more about. How have you managed to get 10 years of remission? Is that common? I didnt know As could do that! I obviously have a lot to learn! Happy New Year - Paula

Quote: "I was taken off the Enbrel because they thought the skin condition was an infection. It took them a year to diagnose the PG, during this time I have been reluctant to consider going back on TNF drugs because I felt the PG could have been a side effect of them, but the doctors refuse to even consider this as a possibility."

IF you went back on the Enbrel and the same thing happened...then...side effects. It could very possibly BE a side effect to taking the Enbrel, medics don't know everythng and everyone reacts differently to drugs, and 'some' with really nasty side effects. You might be the only person to EVER throw such a side effect but it should not be dismissed out of hand! Unfortunately, to so determine, you'd need to go back on it...

Trying to remember a case last year where a patient had a horrific reaction to 'a' drug, and she has been one of only 3 cases world wide 'ever' to have such a reaction, had the doctors puzzled for months. And it was a family member who pin-pointed the fact!

And, just been speaking to my brother in Canada. His wife was in hospital with cancer. She threw a mighty reaction, and a rare reaction, to one of the drugs she was on! One that threw her lungs into a spin, took the medics two months to sort out the cause - and that was? Over medicated! Ho-Hum. But, 'who' suggested this as the cause? My brother! The hospital asked him if he'd be prepared to enter on the case conference... (He's a scientist). But he demurred.

So, never take anything at face value.

Good luck with your own case conference - positive thoughts for Thursday.

Molly C (Brit ex-pat France)
Keeping on Keeping on (you bet!)

hi and welcome

regarding the low or no starch diet,do your own research and draw your own conclusions....

Paula - Suggest that you check out these inks:-

Links

ASAS Handbook: http://www.asas-group.org/pdf/ASAS-Handbook.pdf (numero uno on AS)

http://www.asresearch.co.uk This site summarizes the lastest research in ankylosing spondylitis (excellent information site)

http://www.nras.org.uk/ The National Rheumatoid Arthritis Society

http://www.rheumatology.org.uk/ The British Society for Rheumatology

http://www.arthritisresearchuk.org The Arthritis Research Organisation

http://www.patient.co.uk A patient information site

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You will note that these are all UK sites. There is a very good one for Australia - follows the ASAS one closely; reasonable site for America SAA; and a good arthritis site for Canada. ALL well worth checking into. Apart from that, KA is a wealth of information world wide. Any questions you might think up is probably answered in a thread somewhere here. See the search engine top right hand side. Otherwise, just ask - there will be many here ready, willing and able to offer research, links and answers. Oh yes, and check out the Diet forum - and might check out the Alternatives forum as well.

Go well -

Ex-pat Molly C (France)

Hello Paula and welcome to KA! You have had a rough go of is. I'm so glad you found us.

Hugs,

Hi Paula, it's great to have you aboard. This kickas family of ours is the greatest as you will quickly find out. Oh, and Molly is our research queen always comming up with lots of info. As with Molly and John here, I also have mild psoriasis issues, have been told it goes along with the AS with some people. Those ulcers on your legs sound painful, you poor girl. I would really like to know what they come up with for you. I've been the center of 30 drs. at one time but have been the center of unusual surgery that had a crew of 15 drs. in the OR with me. A bit overwhelming to say the least. Keep us informed.
Cindy

Hi Paula,

Welcome to the most informative and supportive forum on the net!

I have a client (I'm a physio) who has had recalcitrant psoriasis, and I know her dermo finally put her on Hydrea and Neotigacin to get it under control - and it worked! They sound like scary drugs, but they broke the vicious cycle, so now she can hopefully be managed with meds like methotrexate (a little less evil...).

Now she has been diagnosed with psoriatic arthritis, so she may show up here herself soon!

Good luck with the case conference - I agree that all those heads together should be able to come up with a workable PLAN for you!

However, I would also strongly support John's (Dragonslayer) suggestion of reading about and seriously trialling the No Starch Diet. It seems to take a while to show solid results in some, others see small gains quickly. For most people there needs to be some trial and error "tweaking" to get it going smoothly, but the way I feel about it, you have *everything* to gain and very little to lose, except often a few pounds of weight initially. Initially it is NOT EASY to follow such a regimen, but the benefits far outweigh the down side (no pasta, no bread, no 'quick fix' comfort food!) and it really does become second nature after a while (and many of us cheat - and pay the price - from time to time...

Head on down to the No Starch Diet forum, and start reading and asking questions.... there are some who find that *eventually* after a couple of years of healing their gut that they can manage their symptoms on a Low Starch Diet, but if you can see "some" light at the end of the miserable tunnel you seem to have found yourself in when you cut the starches, it is a lot easier to get through each day with less pain and skin problems and not crave the grain-based products and starchy veges.

Hi Paula! Welcome here. I don't have the same kind of arthritis as you, but I will say that this place has given me a new lease on life and a much better outlook to boot. There are lots of knowledgeable and supportive people her. Again, welcome.