ANKYLOSING SPONDYLITIES/ ANTI-TNF/HUMIRA

rafikgaffar

I had this posted on a different forum within Artritis Care and have been advised to repost this in this forum..thus/copied/pasted.

]I have been living with AS for over 25 yrs or half my life. My mobility is very limited. My condition has worsened in the last year and in the past six months in particular .....being almost bed bound. I am unable to sit for long periods due to my sore bum, neither am I able to lie down..both my shoulders (top of) seriously sore. Had it not been for my better half..life would not be worth living. My weight ..particularly my stomach has ballooned ! My Rheumy is starting me on Humira (Anti-TNF) on the 14th Feb. I am hoping and praying this to work in order to have some life...it would be nice to have an occasional good sleep and feel rested in the mornings.

My muscle degeneration is at an alarmingly high rate and I wonder if I may have polymyositis (muscle wasting disorder) that my elder brother died of a few years ago. I am busy in my endeavors to get a referral with a Neurologist, however,the muscle weakness may also be due to inactivity due to pain and immobility..Any comments from readers with similar muscular pain problems most welcome. I do take amitryptoline (spelling ?) for a few days but apart from feeling dozy it does not seem to be doing anything else.

I wish all of you who are commencing Humira soon and look forward to reading your experiences with the treatment. I shall, of course post my review of the treatment soon. Reading about some peoples experiences with their breathing problems is a cause for concern.. I have breathing difficulties normally so keep my fingers crossed !

Good luck to all !
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rafikgaffar

I had my appointment at Kingston Hospital yesterday.Due to anxiety, I got there 30mins prior and waited for 90 minutes. Sitting was very painful indeed. Changed positions to be comfortable and must have looked silly in some of the positions! Eventually when I was seen. the rheumatology nurse explained that I now satisfied the criteria for Anti-TNF and asked me which one I want to try. Since the nurse/rheumatologist had suggested Humira, my research was Humira based and the nurse suggested I try that. The nurse was very confident of the treatment and has raised my hopes too ! I was told upon enquiring that changing to a dif one was possible. I was told that I would get a call from her as soon as approval is confirmed, following which a nurse would visit to train/administer the drug. Fingers crossed ! The days are terrible and the nights worse. I was told that around 400 people are on the drug in Kington On Thames area and would be interested to hear from some of these from the fraternity.

ironic

Hi Rafikgaffer,
Well I am glad that you have had your appointment although it did sound very uncomfortable for you.
I am not on the Anti-TNF’s so cannot help you very much. I just wanted to wish you luck with the Humira and hopefully you will feel a difference soon.
Perhaps when you do start to feel a little better in yourself they could refer you to Physio to try and build back your muscle strength.
I have my fingers crossed for you. Good luck with it all.
Lv, Ix

dreamdaisy

The nurses are always confident (they tend not to have our illnesses and don't take it) and they always raise one's hopes (I've learned my lesson on that front). I have been on humira for a different condition since July 09. I have to grudgingly admit that it has had an effect, but that effect is nowhere near what I was promised or want. I have asthma and that has been absolutely fine since I began it - no immune system = no wheezing as I don't react to irritants any more. I hope that it works far better for you, your condition is different to mine so perhaps that will prove to be the case. The very best of luck - and steer clear of unpasteurised foods, they are not recommended when on an anti TNF! I wish you well. DD

PS I forgot: keep an eye on your blood pressure - mine has risen, probably thanks to humira (or the oral steroids, or both) and I am now on two BP pills.

rafikgaffar

Thank you to all who have responded.

My delivery of the anti-tnf (emblem) will only be delivered tomorrow. A nurse will be visiting to administer/train on Monday. The approval process did take quite long and I felt that I had been "lost" in the system.

My unbearable buttock pain (gluteal muscles) seems to have settled to a bearable level. Very anxious for Monday and hope /pray it works!

tillytop

Just seen this thread and wanted to say "hello" and that I will be thinking of you on Monday. I have had success in the past with two different anti-tnfs (Infliximab and Humira) and I really, really hope that this works for you and gives you some relief.

Good luck!

Love Tilly xxx

dreamdaisy

I too wish you the very best for Monday: I have had enbrel in the past and I hope it works much much better for you than it did for me. Good luck with it! DD

frogmorton

Hi Rafiggaffar

Well that has been a long road for you hasn't it? I really really hope thet it will make a significant diference to your life and health.

Will be thinking of you on Monday and hope to haerr hwo you get on then

Love

Toni xx

barbara12

Hi rafikgaffar
And welcome to the forum, I am sorry I cant help with your meds apart from the amitriptyline, have you asked for an higher does, it is the only thing that has worked for me at night.
I really do wish you well with the treatment, and please let us know how you get on
Good Luck with everything
Barbara x

dreamdaisy

Morning rafikgaffar, well it's Monday and I expect you are a very excited human being today! I hope it all goes well, the injections are very easy, don't hurt that much if you find a good spot, and I really hope the treatment brings about an improvement in your health. I wish you well. DD

lavenderlady

hi hope all went well today with your injections I suffer from SMA spinal muscular atrophy my right arm and right leg back and neck are all numb and my muscles in my arm are hardening I have no real strength in that arm when he knocks it with the knee knocker lol it goes duff with no movement at all, I find it hard to put clothes on a bra is a nightmare believe me, front loading ones as i call them are a little easier I cannot tuck myself in and lifting that arm to brush hair teeth etc is hard, I do know what muscle problems are like and hope the medication helps you real soon michelle xx

rafikgaffar

UPDATE

It has been quite a while since I last contributed to the forum. Here's an update.

Initially, the Enbrel seemed to work after a few weeks. Problems experienced were drowsiness, fatigue, bloated feeling and the biggest problem of all- weight gain. One of my friends also on the same drug had the weight problem as aresult of which she stopped the treatment. I had discussed the matter with her and indicated that I did not mind that so much but did not expect the bloatednessnalong with it. In a matter of months, none of my clothes fiited me and I felt like a round barrel ! I decided to cease taking the medication.

Whilst I appreciate that the disease would have perhaps slowed down and that there would be some gain from the drug internally by the reduction of the antibody levelnattacking my bones, I felt that the outward side effects outweighed the benefits since my general quality of life detiriorated. I met up with the Rheumatology nurse who did not seem to be please with my decision and asked my opinion of moving to another brand, possibly Humira. I asked for a few months break for my body to recover from Enbrel and perhaps try Humira.

I was led to believe that changing the anti-tnf would be allowed but was recently told that this was not possible and to recommence taking enbrel. After just two weeks, I feel terribly bloated and heavy. I am now pondering on withdawing from Enbrel for the second time.

One interesting developments recently - my 22y/o daughter, who has always had a problem with both her hips has been diagnosed with F.A.I.
(FemurAcetabular Impingement) Basically, the hip joints ,mostly the ball joint is out of shape..ie not rounded therby causing friction and hence pain and damage to muscle,soft tissue and joint ultimatly resulting in inflammation and pain in the hips. In my daughter's case, x-rays, C.T & MRI scans have revealed the presence of FAI. She will be operated by keyhole surgery on both hips three months apart.Since our symptoms are similar, there is a chance that I too may have this condition which can be congenital /and/or genetic. Since I have alot of walking difficulties whereby my hips become numb by walking and are both very tender to touch, it was going to be worthwhile to get this FAI checked out. It may not cure me but may result in a significant improvement in the quality of my life.

The reason for writing such a long review is mainly to help those of you that may have doubt regarding their diagnosis. Most readers will agree that any glimmer of hope is exciting since knowing first hand that health is ceratainly wealth! With my Ankylosing Spondylitis, my HLA-B27 (tissue typieng )test was negative. In 75% of cases, this is positive, in addition, I do not have much fusion of spine. My GP has now referred me to Mr Marcus Bankes who is a top Orthopaedic Surgeon at Guys and St Thomas's in London. Fingers crossed !

Even if this contribution helps one individual in the country, my time spent on this contribution will be worthwhile. Lets all not loose hope ! Fingers tightly crossed !

dreamdaisy

Hello Raffi, it's noce to hear from you again despite the news not being that good. Drugs such as enbrel are very powerful and can have all kinds of effects on one, but the decision whether to continue and maybe gain benefit of some sort or to stop is very individual. I was on Cyclosporin for some time and as a result I grew body hair in some very strange places! Being blonde it didn't show up that strongly (plus the fact that I dress very modestly, basically only my feet, hands and face are revealed) but even so, in sunlight the backs of my hands looked awful! Luckily vanity has long gone out of the window but even I found it a little difficult. The cyclo did nothing for the arthritis so I was taken off it, but if it had made the difference I would have kept taking it, hairy chest and all!

I think you are able to change the meds if you find that the the one you are taking does not help in the slightest: despite the weight gain and bloating, did enbrel help in anyway at all? What did your bloods show viz inflammation levels etc? We do walk a tricky tightrope at times with these drugs, there's no doubt about that. I hope your daughter has a successful treatment - there is a genetic/inherited aspect to all of these things, my lucky Ma and Pa dodged the bullets which hit me! I wish you both well. DD

rafikgaffar

Hi DD,

Thx for taking the time to read my post. Enbrel appeared to have been helping. The RF in blood test showed improvement but I was , still am, very unhappy with the way my body feels. Hands up for the fact that I do eat more than the 1500 calories allocated daily which exercabates the problems in motorways than one.

I do hope and pray that you are managing and hope that you have family's support. My better half is my angel and my three girls are all very sympathetic and understanding.

Good luck and God bless.

mimiofdc

Hello rafikgaffar,

I am just catching on the message boards as I don't get here too often.

I have AS primarily and tried Enbrel too. I chose to stop as well due to side effects (although different than yours). I also didn't feel I was getting the benefit I wanted. Well, not enough to continue anyway.

So I applaude you for knowing your body and making the decisions you need for yourself and your family.

I have had AS since I was a child and have been offered many drugs and treatments over the years. Some I have said 'yes' to, others not, and some I tried and later stopped. I have to do as much research now as ever, as the disease really keeps you on your toes - it is ever changing.

I wish you the best and thank you for your attitude towards helping others

PatriciaH

Hi Rafikgaffar

Have you heard of the site kickas.org?? I do not have AS but this site is dedicated to it.

I truly hope you find something that will help you.

Kindest regards

Patricia x

rafikgaffar

mimiofdcthanks for your response. I was thinking about starting another topic called "can your diagnosis be wrong" . This might attract a bigger response. Do look after yourself and be positive.