A new survey on biological therapy

i don't take the above

I was diagnosed with Ankylosing spondylitis by Dr Agawall at St Thomases, I paid for an MRI to expedite a diagonosis. I was informed from this MRI that I had AS. After a short while I was put on  Humira after 6 months and a Medical retirement, Sell-up and move to Wales. The effects of Humira was declining. The Rhumatologist I was put under would renew my Humira because he was not able to confirm I had AS. We asked him to contact Dr Agawall and also gave him the MRI disc. I paid for the scan. Unfortunately I was not given the report on the finding of AS on this scan. So my Humira stopped immediately all I was given was 25mg methotrexate and continuance of Prednisolone 25mg. I was then put on Aziothyoprine working up to 150mg. The reason was if this failed, a case could be made for Humira.

Unfortunately Dr Mo Moved to NHS London and his replacement told me to reduce my steroids. Although difficult and over a long period I am down to 11mg. My methotrexate was reduced to 20mg. My original symptoms have now returned I find it very difficult to move without pain all over. My own GP has given me Two Steroid injections to help with the discomfort but also to reduce the steroids still further. Target is 10mg. I am still not having any medication for my AS just Painkillers anti depressants and Warfarin as I have Hughes Syndrome, which was diagnosed by Prof. Huges himself. I have learned that I have adrenal insufficiency. The results getting worse over time and two synathacen tests.

I feel at the end of my tether and am getting nowhere. My wife and I have discussed paying to see another reputable Rhuematologist, but am stuck with, Do I go to Bath English NHS, or to Cardiff?

I know that biologics work all I need is someone to confirm my (ailments now) and prescribe one that works for me.

Sorry if this of topic (OT), but I would just like some help.

Les

Hi, I had a 15-year struggle to get a diagnosis for Ankylosing spondylitis. I was given this by my Rheumatologist in January this year, The flair I had in June last year became so unbearable I had to give up work in September. I can truly say I have never felt so helpless and unable to see any way forward as I had no diagnosis. I truly thought I was going mad as I was literally housebound by December, unable to tend to my basic needs. Anyhow my rheumatologist placed me on Humira in February this year. I feel amazing I am now on my last week of  Prednisolone having reduced the dose since February and other that Solpadol I am not taking anything. I have had a few awful headaches and the worse case of hives which thankfully has calmed down now. Overall I'm feling positive and I just pray my immune system doesn't become too clever to soon so I can enjoy my life whilst I'm still able.

Hi I have been on Humira for some time now after my Rheumatologist put me on a trial a few years ago. Initially it didn't appear to work but at that time i was suffering badly with hip pain. After having my right hip replaced i was fortunate enough that my Rheumatologist fought for me to be tried again as we were of the opinion that my hip was so bad it didn't allow a true test of Humira. The trial went well and i have been allowed to stay on Humira as it has helped me beyond belief. Stiffness in the mornings is almost non existent and pain is also much reduced and allows me a much more normal life.  

I am 70, born on Merseyside but have lived in Australia for over 45 years.   I was not diagnosed until my early 60s although I have had problems since my teens.   I think I had problems getting a diagnosis because I was a woman and HLAB27 negative.   Now I am pretty bad and treatments are not working.

My diagnosis of Ankylosing Spondylitis came about during an operation on my right wrist for a condition called Peritendinitis Crepitans, (inflammation of the sheath around a tendon, which was caused by friction or overuse, not by a trauma), the operation was to release the sheath from the ‘groove’ that the swollen sheath had worn in the Spondylitis. The operation itself was a complete success but the following months and indeed years of treatment for pain management have had its toll on my ‘inner self’ as well as my general health.

The first drug I was given for the A.S was called ‘Methotrexate’ which is a very potent drug, a member of the Chemotherapy family used in some Cancer treatments. This knocked my immune system for six. As a result, I would contract Thrush every 4-6 weeks for about 2 years, then a Chest infection a few times, Ear infections, severe Toothache. Then the last few years it has been Iritis, one or rarely both of my eyes would swell and get very sensitive to light (making night travel a No No). At its worst I had SEVEN Injections under the top 3 or 4 layers of skin on my eyeball. NO PAIN just irritation.

Now things have quietened down a bit, not so regular now. I take several painkillers. I have been taking an anti Tnf drug called ‘Humira’ for several months, if your symptoms can't be controlled using painkillers or exercising and stretching, anti-tumour necrosis factor (TNF) medication may be recommended. TNF is a chemical produced by cells when tissue is inflamed. Anti-TNF medications are given by injection and work by preventing the effects of TNF, as well as reducing the inflammation in your joints caused by Ankylosing Spondylitis. Examples of anti-TNF medication include: Adalimumab: Humira and Etanercept; Embrel. Since taking this concoction of painkillers and Humira my overall pain levels have improved by around 40%, giving me a better ‘quality of health’, I still have my good days and very dark days but Hey Ho, get on and make the most of it, you only get one life? Without treatment the worst-case scenario is ‘fused back’ and in a wheel chair.

I love fishing, alas I don’t manage to go as much as I used to 16 years ago, but I do get out 3 or 4 times a year, my other passion is ‘water colour’ painting but again not as much as I used too. I’ve only painted 6 in the last 15 years. I can’t sit for long periods and paint, just a half an hour here and half an hour there, so paintings take quite a while to complete. My diy has gone and now it’s dbs, (done by someone), I used to revel in building kitchen units or book shelves or literally anything in wood, yep bowls an’ all, but now that’s impossible.

My family and friends have accepted the ‘now’ me as the ‘norm’, they can’t or won’t remember me as the happy go lucky son of a so and so that I used to be. My life has changed immensely but you just  learn to accept ‘your lot’ and make the most of the life you have. Take a leaf out of my book on life, ‘don’t let the b******ds beat you’, ‘think and stay positive’.

Thanks Richard, I’m new to the forum and iv just read your article, I’m at the stage I think we’re i don’t want me to change I get angry at me as I can’t do things I used to do then when I do the task I’m in agony for weeks!! I try not to let it get me down but it does so much. I will try your advice and stay as positive as I can thats all that’s left I suppose I have AS and other health issues also.

Hi My Friend

It's so good to hear from you. Yes STAY POSITIVE, try not to let things get you down too much. There are things that I cannot do that I used to, there are things that I used to do very quickly but now it takes me a 'month of Sundays'...lol...lol. 

Don't 'push' yourself to the point that you are in terrible pain, that's not good, only do what you are comfortable doing, things will get better with proper a pain management regime. Go to your GP and ask to be referred to a Specialist at your local hospital. They will diagnose the real problem and give you the correct medication to relieve the pain. I am in pain 24/7, it's like a 'niggling toothache' all of the time and if I over do things I get 'flare up's' and need extra medication, so knowing your limits is a great help in overcoming your pain. 

It can and probably will, take quite a while to get the right balance of medication of maybe different types to make you feel less pain when going about your daily activities, but it is well worth putting in that 'little extra effort' to achieve your goals. The clinicians are very good at what they do, we are very lucky to have the NHS, providing unparalleled health care, FOR FREE.

I sincerely hope that I have been of some help to you and 'Wish you well'

Take Care 

Richard

Hi Richard I suppose I have to take the good days with the bad, just at the moment the bad days are more present I’m also on tnf injection Humira taken once every 2weeks but I don’t know if it’s working,, I say this as iv been in a lot more pain since using it, I don’t know if something else has worsened in my back area I go upstairs on my hands n knees the pain is that bad at times, I suppose I need to talk to nurse when I go to next app. To think only last year my job of 30yrs which was a lot of heavy manual work and I loved it would be very impossible to do now, I was dismissed from my job on health grounds and had to fight and I mean fight for every penny from the benefits people what a disgrace they are,,your made to feel like a proper tramp honestly when you have to go to assessments,, awful experience.  Thanks for reply Richard 

Hi all, iv just read some of the other stories and it makes me mad,, why is it women are left last to be diagnosed with this awful disease? Almost all my siblings have this disease brothers x3 and sister x 1 and my brothers were diagnosed very early on in their navy days, yet myself and sister only just recently diagnosed after years of on off pain, the sad part of this for me is my son whose only 26yrs has it also it’s so upsetting to watch him try to be a great dad to his vey young 2girls, he at times suffers terrible the drs have tried to put him on Humira but he keeps refusing as it’s linked to cancer he says and is terrified of getting that. Isn’t it about time the drs realise this disease does effect woman just as much as men. Thanks