Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group newbie- general advise please

This makes me absolutely livid, but I really don't know what can be done about that kind of treatment. I'll probably get shot down for saying this (by someone here who thinks the NHS is completely wonderful with no failings at all), but your story is not at all uncommon in the UK, and it is a real failing of the NHS. I've lived in another country with a national health system and it was streets ahead in terms of patient accountability and service (though still with problems of long waiting lists and budgets). NHS is great when you have an easily testable disorder, or one that can show up on a single round of basic tests. Its hopeless if you are trying to get to the bottom of a long term disorder, particularly one that you have put up with for years, or one that requires building up a clear picture of the clinical symptoms over a period of years.

Having said that though, you deserve a lot better treatment than you are getting. For a start you need to be seeing a rheumatologist that has a special interest in spondyloarthropathy (spondyloarthritis, or just generally inflammatory arthritis). Not all of them are up to date, and specially not with the way women can often present differently or much later. There also does seem to be a prevailing opinion that it is much better NOT to give someone a diagnosis (whether its neuro, or rheumatology or many other areas) than to say "suspected" or "probable" whatever. That is just so totally wrong because it cuts you off from getting treated or followed up appropriately.

I think if your GPs are generally supportive of a strong level of suspicion of AS, then you could definitely ask one of them to find out who the inflammatory arthritis specialists are (or you could ask who your relatives see and trust, or phone the advice line at NASS and get a name from them) and get referred directly to them. You are totally entitled to a second opinion in the NHS, but you need to make sure you are seen by the right person otherwise it may not get you any further. You could also look at talking with PALS (patient advice and liaison service at your local hospital) to see how they could help you get appropriate treatment or this second opinion. Its just not good enough that you are being dismissed and left like that.

Another thing to consider doing is to take someone with you to appointments - friend or family member, who can make sure that you remember to ask all the right questions, and who can take more note of what the doctor is saying. It sounds awful, but every time I have had someone else in with me, I find I get treated completely differently - far better, and the doctors go out of their way to listen to me and explain things properly and do adequate examinations.

I'm still shaking my head over how you have been treated. I can't get very far with treatment or diagnosis myself, but with your family history? wtf!!!!! Why can't they see it?????? What is going on here?????

The UK National Ankylosing Spondylitis Assocation website is here http://www.nass.co.uk/ if you want to phone them and find out the names of rheumatologists with an interest in AS in your area (or anything else about AS).

thanks so much louise/inky made me laugh lol. yer think i do need a better rhuematologist maybe one from the present century.

and thanks so much cemc il give them till the end of the week for results off the xrays then i will ring on fri the NASS and get a name of a decent specialist and ask for a ref straight to them like you said. they already know i have fusion round the sacriol watever (lol i know am rubbish at all this lol- im sure il b a genious by the end of it) sacriloitis? i dunno, so obvs there is something going on that they should be looking into more. just hoping i can get back to work properly soon.

i tried to do a client tonight and it was pure agony unfortunately xx

thanks so much guys

oo iannah i looked up those links they are very helpful thank you xx

the meds they have me on atm are:

Naproxen 1000mg a day bin on it for 7 weeks and not felt any relief yet
omprazole (7wks)
tramadol as and when needed (7 weeks)
co-codomol 4x a day 30/500mg (7 weeks)
and now ametripteline 20mg before bed. (2days)

in the past i have been given diazapan and cocodomol when i have had severe periods of pain. (i tend to have back and hip pain 24.7 with flares every few months or so.

when i was in hosp (this is the first time a flare has hit every joint, in the past its been one joint for a couple of weeks and iv just written it off as a sprain i now think its been this all along) they had me on morphine (oromorph), co-codomol, diazapan and something else i didnt ever grasp the name of.

xx

just hope something starts to work soon.

thanks so much guys x

Hi lizzykarma - this might help: http://www.rlbuht.nhs.uk/Physiotherapy/Pages/Rheumatology.aspx
Royal Liverpool Hospital. They have a specialist spondy dept and arre associated directly with NASS. Run spondy physio sessions at the hospital.

Women do get AS. Please see the forum here on Highlights Spondylitis Research - this will kick you off re the HLA-B27 gene (you do NOT have to be positive for the gene, though given yr family history, bet that you are! I am negative, as well as many KA members, we are still diagnosed with AS) : https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=452362#Post452362

Here is the Handbook - http://www.asas-group.org/education/ASAS-handbook.pdf

Update to above handbook : http://www.the-rheumatologist.org/detail...OARTHRITIS.html

Women WITH Ankylosing Spondylitis : http://www.spondylitis.org/press/news/549-women-with-as.aspx
This is from the SAA - Spondylitis Association America

This is useful - starts off in German then goes to English language : http://rheumatologe.blogspot.fr/search/label/M.%20Bechterew
- excellent. Answers many of the questions that so many ASers ask - like, Diagnosis. Why and Wherefores - WHY are there no real ground level protocols for DDx - seems there are no real concrete answers - the discussion is open *with that hoary ole chestnut scattered. A definite one to print off and bring to any rheumy who is dead set for HLA-B27 positive to BE 'the' DDx for AS.

Reasonable assortment of papers from NASS including one for a good laugh for YOU "Managing Pregnancy with Ankylosing Spondylitis"...ask that prat of a rheumy you saw how a man gets pregnant!! http://www.nass.co.uk/NASS/en/research/published-clinical-papers-2012/

http://www.nature.com/nrrheum/focus/spondyloarthritis/index.html

https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=468480#Post468480

This is one hell of an exercise. A plethora of information. Check out the library - just downloaded and printed off a very interesting paper on 'AS in the 'elderly'' - Ha. That includes HLA-B27 positive AND negative. Useful information.

http://sfr.larhumatologie.fr/ModuleEventPublic/viewPresentation.phtml?about=rc%2f2009%2f22esfrhuma%2fposter%2f20091029-080253-1319%2f_container

20th French Congress of Rheumatology 2007 Paris
The Student's Book - Rheumatology

Summary
Rachidi, Mkinsi - Casablanca - MOROCCO
Spondyloarthropathies are a group of chronic arthritis that occurs rarely in the elderly; forms a late expression is less than 10% of all spondyloarthropathies.
The aim of our study was to report the characteristics of this disease in the elderly over 55 years through a retrospective study over 13 years.
These 10 patients or 4.7% of all spondyloarthropathies (210 cases), the average age of onset is 59.6 years (55-70 years), sex ratio is of 1H/4F. This is 7cas psoriatic arthritis and ankylosing spondylitis 3. The peripheral arthritis is present in 10 cases (2 cases in oligoarthritis and polyarthritis in 8 cases) with an axial involvement in 6 cases. General signs to kind of fever and altered mental status are generally found in 2 patients. Biologically, the inflammation is important in all patients with an average VS at 90 mm (60-120 mm H1) and HLA B27 was positive in 1 case. Radiological findings are similar to those seen in younger patients. On the therapeutic level, an inadequate response to anti-inflammatory drugs (NSAIDs) is found in 5 patients.
Spondylarthropathies in the elderly are rare forms that are characterized by female predominance, the frequency of psoriatic arthritis and the severity of the clinical importance with general signs and presence of oedematous forms, the inflammatory syndrome is generally very sharp and the response NSAIDs and incomplete.
Keywords:
Spondyloarthropathy; elderly;

IF one were to read every single item referenced and linked to, then reckon a few years entailed of solid reading. Superb compilation - guy must be driven!

N.B. You'll need to access an auto-translate - above is auto-translate.

http://sfr.larhumatologie.fr/docRhumato/themes/index.phtml - library

Women WITH AS :-

http://www.spondylitis.org/press/news/549-women-with-as.aspx

Ankylosing Spondylitis Research Survey: Survey Focus - Women with Ankylosing Spondylitis

(BTW - Women with AS present differently to men)

Here's another good one for you : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077878/
Role of MRI in Diagnosis

http://arthritisbroadcastnetwork.org/2012/05/what-is-ankylosing-spondylitis/
Look what I fell over today - very interesting. This is the Canadian Arthritis Research Network. Many interesting links that one can follow up - this section is on AS. Good job (as my physio would say!)

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OK. You've probably got brain ache by now! In a nut shell:-

Women get AS
Women present differently to men
Takes an average of 10 years to get diagnosed (DDx) - got to keep kicking em
Initially X-Rays will not show anything much, not UNTIL damaghe has taken place
MRI Saggital STIR tau1, tau2, fat supression is the way to go in INITIAL diagnostics
Family, familal AS background (IF applicable). Yours IS. (That rheumy you saw needs desperately to go BACK to med school - he's a DANGER to ALL AS patients. Put in a complaint to the hospital).

Now, go and read ALL those papers. You'll soon start to get the hang of the language. Use yr computer for sections, words etc that you don't understand. Ask questions here on KA - There is a WEALTH of knowledge here on KA. The gang will help you over the boulders and to climb this Everest. Have you setting yr flag on the top.

I'll search out a rheumy name for you - know there are a couple up yr way - members of EULAR (European League Against Rheumatism - yes, agreed, naff name!)

Take it easy and take your time. Meantime also visit the diet forum. A check in on the Alternatives forum mmight be interesting - but really, first off, you need to get to grips with the basics of this AS condition.

Right. There ya go. Homework time - but don't get brain ache.

Molly C (France)
Ex-Pat Brit - Keeping on Keeping on

Female. HLA-B27 negative. Familial AS. Older age group - don't have to be young to develop it! Etc etc etc

Hope there are not too many typoes...

Take care

thankyou so so much molly! amazing links there!

im going to print off some and take to my gp see if i can get another referal or something, fingers crossed. xx

thank u sooo much and yeah it is really overwhelming when you first strat reading up on it all so much to take in.

my aunty is on an alkaline diet and that works really well for her and one of my cousins so iv been looking into food diets, il take a peek at the pages thanks again

liz x

Hi back - just a quickie. Your doctor may NOT deny you a referrel. First though,let's find out a name for you to ber referred to. MUST be a rheumy *specialising in ASA - not too many of those around who KNOWwhat they are doing.

Phone NASS first thing.

That will be a start to get the ball rolling.

IF you want a few papers for your GP, then the one on Females and AS will be good as will be the EULAR Handbook - keep him busy.

There is an excellent EULAR 100 questions answered. Will check out a link for you. Can print that off for yr GP as well.

OK. Late now, and am tired. But watch this space. Remember. phone NASS to discuss suitable rheumy specialising in AS first off. Know of an excellent one in |Keicester - my NHS one. She is TERRIFIC. And there is a superb one in Bath - private though. So v. expensive! But they BOTH know what is what. Experts in their subjects - AS specialists at International level.

Speak again later -

http://publications.nice.org.uk/adalimum...ed-and-practice

Useful - this is from pp2 - but read the whole paper - monograph. Will see at the end the line up of persons associated with the paper - three from NASS. (Women get AS!!)

P.S. Take out a membership of NASS - it is cheap - will be useful for you, AND get onto your nearest group. Participate in the physio that they have set up for spondys - at the L. Hospital. Start kicking gal -

Manchester - Read this lot - they know what they are doing. Manchester is pretty much on yr door step...s
ee the slide bar? Check through that whole section.
http://www.medicinenet.com/ankylosing_spondylitis/manchester-nh_city.htm#topic

There is one International guy, just trying (!) to remember where he is stationed...bugging me!

NASS - group, Manchester : http://www.nass.co.uk/branch/manchester

http://www.medicinenet.com/script/main/art.asp?articlekey=16694

Ankylosing Spondylitis and Pregnancy

Medical Author: William C. Shiel Jr., MD, FACP, FACR

The influence of pregnancy, delivery, and the post-partum period is a common concern of persons with arthritis and related conditions. Although ankylosing spondylitis occurs predominantly in men (two to three times more common in males than in females), women can and do develop the disease.

This topic of pregnancy and ankylosing spondylitis was studied and published under the title "Ankylosing spondylitis--the female aspect" (J Rheumatol 1998 Jan;25[1]:120-4). I think this study serves well as a review of pregnancy issues in women with ankylosing spondylitis.

In collaboration with the Ankylosing Spondylitis International Federation, a questionnaire including clinical data and details on past and recent pregnancies was sent to the female members of national and regional Ankylosing Spondylitis societies in the USA, Canada, and 11 European countries. (It should be noted that questionnaires do have shortcomings from a research standpoint, including inaccurate completion of the forms, lack of personal interaction, and accurate interpretation of both the questions and the responses.)

Nine hundred thirty-nine questionnaires were completed. The researchers found that the average age of the responding women at the onset of their ankylosing spondylitis was 23 years. In 21% of these women, the onset was related to a pregnancy, either occurring during or immediately after the pregnancy.

In this group, the frequency of accompanying features of ankylosing spondylitis was as follows: 45% had inflamed joints away from the spine (peripheral arthritis); 48% had inflammation of the iris of the eye (acute anterior uveitis); 18% had psoriasis; and 16% had inflammatory bowel disease.

Six hundred forty-nine of the responding women with previous pregnancies had on average 2.4 pregnancies per woman, of which 1.4 pregnancies were during periods of disease. Of these pregnancies, 15.1% of women with ankylosing spondylitis experienced a miscarriage. During 616 previous and 366 recent pregnancies, disease activity was unchanged in 33.2%, improved in 30.9%, and worsened in 32.5%. Improvement of disease activity during pregnancy was correlated with a history of having peripheral arthritis. It was also observed significantly more often among those having a female rather than a male child. (It would have been even more interesting if the researchers had compared the activity of disease over the same period of time of patients with ankylosing spondylitis who were not pregnant.)

Delivery occurred at term in 93.2% of cases. The rate of cesarean section was high and due to ankylosing spondylitis in 58% of cases. The majority of the newborns were healthy and had a mean birth weight of 7.4 pounds. Ankylosing spondylitis had an adverse effect on being a mother and a caregiver as a result of active pain and stiffness.

A postpartum flare of the ankylosing spondylitis within six months after delivery was experienced by 60% and most often with patients who had active disease at conception. This is consistent with the known frequency of flare-up of inflammation in a majority of patients in the postpartum period. It should be noted that active disease at conception was a predictor of a postpartum flare.

In the particular study above, there were no control groups. The results of this study would have been even more powerful if some of the key numbers had been compared to a control group without pregnancy or without ankylosing spondylitis.

Ankylosing spondylitis does not seem to adversely affect fertility, the developing baby in the womb, or the newborn. It seems that improvement during pregnancy occurs more frequently in women with a history of peripheral arthritis and those with a female fetus.


Last Editorial Review: 3/5/2007



Please print this off and send to that rheumatologist whom you saw - and *don't bother seeing him again - dump him. Get thee to Manchester. (When I'm visiting Liverpool area, I go to Manchester to see my ophtho-Optomertrist and to the Ophtho dept of the hospital over there. Journey is reasonable)

Emphasis are my own.

http://aolbroadband.search.aol.co.uk/aol...0-%20manchester

Here's yr google for AS in Manchester - lots of activity - especially BY WOMEN FOR WOMEN - and blokes as well as -

Right - night.