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#516654 - 02/22/17 08:40 AM AS Targeting New Areas (limbs)- Humira Not Helping
woodbine Offline
Member

Registered: 05/25/11
Posts: 35
Loc: Bristol, UK
I first had AS symptoms in back over 25 years ago. Also eyes, skin and scalp problems along the way.

I never really had any real meds for my condition for most of the time, except eye Pred. drops when the Iritis cropped up occasionally. Some parts of my spine are now fused. However, in the last few years, my AS started changing in more worrying ways and I started getting wheezing in my lungs - this has been going on for approx. 4 years.

Early last year, my AS seemed to change in another way. It seemed to lessen in my spine/ribs ( poss because it feels it has done all the damage it can do there) and I haven't had Iritis for several years and my scalp and skin are better.

However the AS seems to be changing into Rheumatoid arthritis. It is now targeting my elbows which get steadily worse, as well as knees, finger joints and occasionally heels.

Nine months ago, I started on Humira. I have had no bad reactions to this at all, but also no benefit that I have noticed either. The new peripheral joint problems steadily worsen, and my lungs are noisy, especially at night.

Is Humira the best treatment for AS that now seems more like Rheumatoid arthritis? Any advice and experiences welcome.


Edited by woodbine (02/22/17 08:41 AM)

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#516663 - 02/22/17 04:32 PM Re: AS Targeting New Areas (limbs)- Humira Not Helping [Re: woodbine]
Boroboy Offline
Warrior_AS_Kicker

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
Hello Woodbine,
Sorry to hear that your suffering at the moment, I can sympathise.

I've been on numerous types anti tnf medication now for around 12 years or so.
My first (best), was infliximab, then Humira, Simponi, now Enbrel. I found anti tnf to be quite good at generally dampening down the old A.S, but Have also suffered from worsening peripheral joint issues too. Which the anti tnf treatments never really cut the mustard with. My main none back issues at the moment are my wrists, knees, foot (plantar), knees. I also suffer from long term photophobia within my right eye (long story), initially caused by iritis.
I've generally found that the anti tnf treatment helped for a while, then I'd either change to their ineffectiveness or down to unwanted side effect related problems. With the last two anti tnf treatments I've been on, I've suffered from tinnitus, deafness within one ear & occasional balance problems. I think probably due to a low level ear infection. As well as constant low level upper respiratory issues. Which both clear up, usually one month after stopping the anti tnf drugs. I'm currently on Enbrel, but will be stopping this treatment soon, due to these issues. Then its back to basics for me. Occasional anti inflammatory use, due to a sensitive stomach, general pain killer use. May try some supplements to go along with the new/old treatment (Devils Claw & Turmeric).
You might find swapping onto another anti tnf may help you. I've more or less tried them all now.
I've also tried eradication diets, which didn't work for me.

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#516688 - 02/26/17 05:52 AM Re: AS Targeting New Areas (limbs)- Humira Not Helping [Re: woodbine]
Frederick Offline
First_Degree_AS_Kicker

Registered: 03/28/06
Posts: 156
Like yourself Boroboy
I have been on Anti-TNF for some time about 10 years in my case. I started on Enbrel and the effect was marvelous to start with. The only way to describe it is to say it was life changing. Within a matter of hours my condition improved so much that I was able to reduce my NSAIDs. and my painkillers.

However the A.S. has slowly deteriorated and is now as bad as ever. On my last rheumatologist appointment a few weeks ago I was all set to ask for a change to a different Anti-TNF.

However the rheumy. said that my problem was not so much a joint thing but more of a ligament problem. Enthesitis a condition where the ligament becomes calcified and painful. Apparently this is not unusual in A.S. patients.

So anyway he wants my to change from Indomethacin to Arcoxia to see how I get on with that. He said if there was no improvement by my next appointment in three months he will change my Anti-TNF.

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#516982 - 04/22/17 09:50 PM Re: AS Targeting New Areas (limbs)- Humira Not Helping [Re: woodbine]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21302
Loc: Upstate NY
I've always had the peripheral joint inflammation...enthesitis....my wrists and feet have been two of my worst areas...I've torn ligaments in my fingers (turning a key in the door when things were inflamed for instance)...not RA, just another symptom of spondy....

for me, Humira has worked very well on all joints, neck, SI, and peripheral.

but we're all different, so if Humira doesn't work for you, see if another biologic does...there are quite a few out there these days.

my insurance only covers Humira, Enbrel, and Remicade, but I'd petition until I found one that worked.

It can take a bit of time for a biologic to really reach full capacity. I'd say for me that was probably about 3 years. It worked well from the start, but works better now.
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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#516991 - 04/24/17 06:49 AM Re: AS Targeting New Areas (limbs)- Humira Not Helping [Re: woodbine]
Frederick Offline
First_Degree_AS_Kicker

Registered: 03/28/06
Posts: 156
I first started on Enbrel about ten years ago. It's affect to start with was dramatic with the best pain relief I had ever experienced.

#But at a point about a couple of years ago I noticed that my condition was deteriorating. Not only was my A.S. returning to it's previous state but I noticed that I had not had any infections of late. Whenever I had a head cold it would turn in to a chest infection. It was much the same sort of thing with any small skin wound it would also become infected. Antibiotics were usually needed to clear up such infections. There was no serious problem with such things and I put it down to a lowered immune system due to the Anti-TNF.

I think it is time for me to now try another Anti-TNF probably Humira and I am in the process of getting my rheumatologist to change my prescription for me.

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#516993 - 04/24/17 09:59 AM Re: AS Targeting New Areas (limbs)- Humira Not Helping [Re: woodbine]
jackson Offline
New_Member

Registered: 04/13/17
Posts: 14

If you were not experiencing pain would you take these drugs?

Like most stories I've read on here it took me forever to be properly diagnosed.

I'm 46 now. AS came on strong in my early 30's. About three years ago I took steps on my own after reading enough about inflammation to realize I had issues and tailored my diet and lifestyle accordingly. This thankfully ended the relentless pain flare ups and I've mostly felt really good internally. The bad years did leave behind a less than best version of my previous self, I'm sorry to say. I now have a really stiff neck, am self conscious about posture, thoroughly demoralized when I drop something and instead of bending over have to drop to my knees,etc. Still, by my new normal metrics I am feeling good.

Last month I had my first ever visit with a rheumatologist. I failed the field AS sobriety test (bend over to touch toes, have buttocks, heels, and back of head against the wall) I got the full work up and a day later their tone when describing the X-rays and bloodwork was extremely serious. They kept asking me about my pain levels at the office and on the phone. I answered "0" every time stating that since I cut out defined sugars, wheats, dairy, land liquor I was living pain free. My discomfort was range of motion related, like the Tin Man when he needed oil. He immediately prescribed Humira.

I wrote all that to say this. I'm scared of drugs. If I was in the throes of a flare up taking Humira would be a no brainer. The doctor said I needed it to stop the progression so I took my first shot and am scheduled for round 2 tomorrow. For those on biologics, were you able to regain lost mobility on these drugs and do these drugs stop AS progression?

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#517006 - 04/25/17 05:47 AM Re: AS Targeting New Areas (limbs)- Humira Not Helping [Re: jackson]
Frederick Offline
First_Degree_AS_Kicker

Registered: 03/28/06
Posts: 156
Originally Posted By jackson

If you were not experiencing pain would you take these drugs?

Like most stories I've read on here it took me forever to be properly diagnosed.

I now have a really stiff neck, am self conscious about posture, thoroughly demoralized when I drop something and instead of bending over have to drop to my knees,etc.


I wrote all that to say this. I'm scared of drugs.


If I was not in pain I would reduce my medication to see how i got on and if all was well I would then hope to stop the meds.

As you suggest an accurate diagnoses can take many years. A.S. is notoriously difficult to diagnose.

The stiff neck and being self conscious about posture is all part of having A.S. You will get used to it in time.

Being scared of drugs is not so unusual but you have to make the choice what is worse your fear of drugs or the pain of A.S.?

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#517064 - 05/07/17 11:18 AM Re: AS Targeting New Areas (limbs)- Humira Not Helping [Re: jackson]
mig Offline


Registered: 04/27/02
Posts: 12455
Loc: ON, Canada
Hi Jackson, and welcome to KA!

Yours is a very interesting question and situation. I suppose it is hard to know how much inflammation or damage might be progressing under your radar, but I can see why it is not a no brainer for you - in the absence of pain. Some folks do not experience pain despite AS progressing, but pain did seem to be a feature of your AS experience in the past. It can go into remission for some people, so I guess if it were me, I'd want to ask the Rheumatologist what signs are showing that inflammation is still ongoing, despite the fact you are feeling fairly well.

While the biologic meds are not to be taken lightly, and there are risks to consider, this class of medications has proven to have a good safety profile. It can increase your susceptibility to infections, so hand washing etc can help in a preventative way. I do my best to stay away from sick people and have not had a problem with infections, but for those who work with the public, that could be trickier to do.

In my case, my AS was steadily progressing over the years and causing skeletal damage. That damage represented a far greater risk to my health than the risk of these meds, so in my case the decision was easy. I've been on Remicade since 2004, have had no problems on it, and I do believe it has seriously slowed if not stopped the progression. Everyone seems to be a bit different in how effective the meds might be, and in weighing their own situation in terms of risk vs reward.

It sounds like you've made the decision to go ahead on the recommendation of your Rheumatologist, and from the little I know from what you've shared, that sounds like a perfectly good decision.

I am not afraid of biologics although I respect that all meds come with some risks for sure. In my view, Remicade has been incredibly effective at protecting my health... just one person's perspective, in case it helps you to hear. If you are not feeling comfortable with decision, keep in mind you can always stop if it doesn't seem to be right for you. (Not that these meds should be stopped / re-started.)

Hope you make out well on Humira! Since you are not in pain, I can see that will make it hard to tell if/or how much it may be helping. Perhaps your blood work can help to determine this, relative to a baseline.

Best of luck!
_________________________
mig

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#517070 - 05/08/17 04:55 AM Re: AS Targeting New Areas (limbs)- Humira Not Helping [Re: woodbine]
Frederick Offline
First_Degree_AS_Kicker

Registered: 03/28/06
Posts: 156
A very good reply there mig and I agree completely.

I have suffered A.S. for over 55 years and the best pain relief I ever had was from Etanercept (trade name Enbrel). As always it is a case of balancing the benefit against the risk.

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#517104 - 05/12/17 09:58 AM Re: AS Targeting New Areas (limbs)- Humira Not Helping [Re: woodbine]
jackson Offline
New_Member

Registered: 04/13/17
Posts: 14
I'm only a month and a half in on Humira treatments. At times it seems there has been some improvement in neck maneuvering.

One of the challenges I face with the AS diagnosis is over analyzing every little body pain. Staying out of my own head in regards to diet and medication presents the same challenges.

That being said, I noticed after my second round of Humira the presence of a mild, yet consistent ringing in my ears. I was able to shrug it off as medication paranoia and reasoned it was probably there before and I wasn't in tune with it as much. After my third injection this past Tuesday the ringing has intensified and comes and stays with longer frequency.

Has anyone else experienced this? I have a local Humira rep/nurse in my area I met with on my first injection I plan to call as well, but she is also a paid employee so I am not sure of the level of unbiased candor I can expect.

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