Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Question about AS

Yes

Oh Stormy, I finally see her tomorrow, it has been such a long time with all the passing around I have had with the Rhumatologist. My physio is very highly qualified and her position is considered prestigous here in England. She works for the NHS

I don't know how it is in the US, I do feel the set up is different but I have to kind of guess your system, if you see what I mean

I know that in America not all your key doctors are paid by the governement like they are over here. The NHS is rather out of date compared from what I see when I look at American hospital and when I speak to folk that live in the US

For instance in the UK acupuncture, is very rarely available on the NHS, often only experimentally. Chiropractics, as far as I understand it are never available under the NHS and they are considered to be 'quacks' by most workers there, and I have been told to stay away form them.

There is only one diet in the NHS and everybody has to follow it and that is the low fat diet. Holistic therapies are not even discussed.

There are many people trying to modernise things and make the NHS less rigid and more open, my Physio is one of these people but she has told me that she feels she is very much on her own and she does not tell her collegues that she uses alternative therapies herself because she is feared of ridicule

I trust her implicitly, it was her that found the issues with my sacrioliac joint, my lower back, legs and so on. All of her suggestions to improve my mobility have been really useful, and to be honest a dream come true would be to be able to remain with her much longer

But because I am not considered, 'genuinely arthritic', by the Rhumatologist, I only have two or three maximum session with this lady and I will be o my own again.

I am going to talk to my Physio tomorrow and she will I am sure sort an x-ray out for me, she may even be able to arrange a scan, I am not sure about a blood test. I will know more tomorrow. But the other thing I am getting increasingly worried about is if this Physio continues to keep caring for me as well as she is will she become a target in this madness. My Rhumatologist was adiment that my Physio's explanations of my back problems were exagerated. She kept refering to that study she did at University where she found that all her cliets with Fibro were carers. It was as if she believed carers can only have psychological problems and that it was actually impossible for carers to get physically ill

Anyway, Stormy, please do not worry too much about me. As much as I am facing another unjust situation I am not stupid enough to allow all this to get back to how it was in the old days

I was very young when all the psychology rubbish went on and I did not understand things in the same light that I do now. I know I am still lacking the correct terminology for things, and I even recognise that my concepts of the illness are somewhat subjective, and I am open to learning. But I am not stupid enough to get myself trapped in a mess with this Rhumatologist

I already have certian things in place that will lead me to a more desirable position

Here in England we have an orgaisation called NHS Direct. They are of course part of the NHS and not independent but the folk there have been very helpful. They told me about this site, and about NASS and Arthritis UK and they also had data on their system about the LSD etc

A lady from there has conducted some reearch for me and she has found me a list of Rhumatologists that she thinks may use the diet and a few that deal with both AS and Fibro and some other stuff that I am examining now

Arthritis UK have been very supportive. The lady I spoke to there said many women phone their helpline daily complaining of similar treatment to that which I am facing. She told me how best to deal with this and said if i stand firm I will eventually find a suitable treatment, but she also told me not to drop this Rhumatologist because the system will take longer that way, instead she said it is better to persue as much physical evidence as I can here, like x-rays etc, and to learn about athritis in general (dont forget for 20 years I have been told fibro is not a form of arthritis, when in fact it is and is described as such on the Arthritis UK website). Plus another thing I have only just foud out is that Fibro commonly appears with other kinds of Arthritis, this is another thing I did not know about

Anyway, as long as I do not develop a sense of urgency with all this, the NHS is always very very slow, no matter what we are dealing with. I take my husband dad and sister there enough to know that is so. And they have very old fashioned ideas about care, but there are the odd one, like my Physio, so if I am patient I will find a rhumatologist who is more in touch with current ideas, and as long as I am willing to travel, more opportunities will be made available for me. I just have to keep searching

I only thank God I have you lot here to help me. My total eduction regarding all of this before I came here was zero. For twenty years I have had all the symptoms of arthritis but I have been explaining to folk how it is not real and how these things were all in my head and how my limp and gait etc where all being caused by my thinking, and other stuff that seems so crazy now

Only this week at the Fibro support group that I attend a young lady arrived there with the same story, how her symptoms are all being caused by her emotional problems and how she has had to isolate from the world because she cannot cope with anything, and how when the winter comes and she cannot walk it is all down to depression and so on

I wish I could help these people, but right now I have to keep my focus on my own treatment.

Over all I feel I am doing OK. I have had some back pain today, but that is because I have bee liftig my husband out of bed. I have also felt a little more of my limp, but it is no where near as bad as it was, and my neck pain is also less severe.

I do think all of these things are being improved because of the excercises my Physio has been giving me, and because I have lost weight. So because things are over all psoitive I am trying to focus on the positives and in the mean time just learn what I can so I do not make statements that get me back in a muddle with the system. My plan is not a battle with the NHS, my plan is to get the care I need

Thank you for listening, I know that sometimes I do go down and get a bit emotional but it is hard to talk to my husband about any of this because with his brain injury it is difficult for him to comprehend what is actually going on

May appreciation as always

Love Joanne

Habib, thats a really interesting question. I don't have a firm diagnosis yet, and as such am limited to treatment with NSAIDs. I'm beginning to realise that the maximum dose of diclofenac I currently take just isn't doing enough and I'd love to have some more aggressive treatment. The answer that someone else gave that the effects of NSAIDs can wear off and you might need to change to another is useful to me, and it might be an option while I wait for confirmed diagnosis and the possibility of anti-TNF drugs. I do worry that I am continuing to get worse and do somewhat blame the fact that I don't have access to the full range of treatment, but I think I need to realise that even if I did, things might not be much better. I guess what I have realised is that the most important thing is a good rheumie who has your interests at heart and who has followed you up for long enough to really understand what is going on for you and what is likely to work best. I'm still looking for this miracle person!

My doctors have advised against biologics for me, because my family has excessive cancer deaths. For most people, it seems that biologics are pretty safe. I'd take humira in a minute if I could. Of course, I'd take NSAIDS, too... if I hadn't developed an allergy to them. For now cymbalta and LDN are managing my pain and mobility problems, so I'm enjoying this period of relative painlessness for as long as it lasts! I also take D2, Bcomplex, and Cod Liver Oil.

I usually have to change NSAIDS every 2 years. It seems that after a while, they just slowly stop doing as well as before.
Donna

Hi habib,

I don't believe that there exists a true DMARD (disease-modifying anti-rheumatic drug) that has been proven to modify the course of AS progression, yet, unfortunately. The new class of biologic meds may prove to slow progression but I think the jury is still out.

I am surprised to read of others who feel that nsaids are known to become less effective over time. If that is true, then it's not something that I've been aware of. In my case, I have been on Voltaren (an nsaid) for 28 yrs/daily, without side effects or problems and it still seems to work as well as it always has.

Reactions do vary between individuals and of course stomach ulcers can be a real concern for some, but side effects are not a given. The one I take has never been able to bring my inflammation under control, but has certainly helped to a worthwhile extent. Biologics also can be extremely helpful and can be taken in combination with nsaids, if needed.

I hope your doctor will help to explain your options and help you work towards a solution that you are comfortable with.
mig

hibib i have been on indocin for over 30 years .this AS affects everyone different so you must keep trying to find something that works for you.All meds have side affects.Hope this helps the NSAID were a life saver for me.
Bradford

I've was wondered the same thing.

By the way...I tried the NSD very recently and it sent my ulcerative colitis into a tail spin. It probably isn't for me.

I think that is a valid conclusion.

It is not that I feel that they become less effective over time, for me, this is a fact. I switched from daypro to indocin and the pain vanished over a period of 3 days. I have even spoken to my pharmacist and she confirmed that loss of effectiveness is a possibilty for some, not all, but for some. God knows I wish I don't have to change again.

P.S.
As for the LSD/NSD regiment oftened touted on this board, I am diabetic and as a lifestyle change have made my eating habits as a whole a low carb/ low glycemic index menu. This change has lost me 50 pounds but not the pain and stiffness. So I concluded that for me, the LSD has improved my weight and my blood sugar control dramatically but has had little to no effect on the AS.

Sorry Taberge, that was a poor choice of wording on my part! I did not mean to discount your valid experience at all. I was just very surprised because I had never heard of the possibility until now. Or maybe I did but have forgotten. Now I know - thanks to you!

My best,
mig