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#503393 - 05/13/14 08:13 PM Newly diagnosed, rheumys won't treat me!!? HELP!!!
Jeffery Offline
New_Member

Registered: 03/24/14
Posts: 5
Hi everyone, you can find my last thread/update here. http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=265524

***Short version***
Is there a way to get an anti-TNF treatment without having a DX from a rhuemy? My PCP and Natural Path doctor have both given me the diagnosis. Because I don't have sacroiliitis I suppose that means that I fall into the category of Undifferentiated Spondyloarthropathies... so maybe a pain management clinic could get me some enbrel for the pain, then a rhuemy will be willing to accept me as a patient? If millions of people suffer from this disease why is it so %&*$#&* difficult to get treated? I am not wealthy but my parents told me they would be happy to pay for the drug out of pocket if this is an option... Or am I supposed to suffer until my bones decay and I meet their diagnostic criteria... haha I can just hear it now... "Well Mr. Roberts it DOES seem that you have an auto immune disease after all!"
***Short Version***

I just saw a second rheumy to get a second opinion on my AS dx from my PCP and i'm hearing the same thing... because I don't have sacroiliitis I do not have AS. He says I have some kind if nueroplasticity disorder where my mind essentially is manufacturing the pain.

It is painfully clear I have AS or a very similar variant. I had a decent response to prednisone, although no noticable improvement with nsaids like mobic or aleve. I have a family history of RA ( my mom was dxd with severe RA only days after I was born and is now severely deformed because she never sought treatment)
-I am HLA b27+
-unrelenting AS symptoms for 10 months which are as follows
-fatigue
-sciatica
-back spasms
-rib pain when breathing
-internal hip pain (lots of pain, cracking, popping, and weakness in the last months)
-continual aches and stiffness, worst in the morning
-thankfully no joint damage yet via xrays and MRIs
***NEW SYMPTOMS BELOW****
-bedridden due to massive spikes in pain from arising from bed
-severe depression (been to the ER twice for suicidal/emotional breakdown when the pain becomes overbearing)
-new joint pain in knees, shoulders, hands

Is there a way to get an anti-TNF treatment without having a DX from a rhuemy? My PCP and Natural Path doctor have both given me the diagnosis. Because I don't have sacroiliitis I suppose that means that I fall into the category of Undifferentiated Spondyloarthropathies. I am not wealthy but my parents told me they would be happy to pay for the drug out of pocket if this is an option... Or am I supposed to suffer until my bones decay and I meet their diagnostic criteria...


Edited by Jeffery (05/13/14 08:22 PM)

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#503394 - 05/13/14 11:50 PM Re: Newly diagnosed, rheumys won't treat me!!? HELP!!! [Re: Jeffery]
Smiletoday Offline
Second_Degree_AS_Kicker

Registered: 08/22/13
Posts: 215
Loc: So cal
Ask for mris to prove you have inflammation, if there isn't any in your si joints, have them image somewhere else you have pain.. My si joints were clear on mri but my hands showed the inflammation and since there was no other explanation for that I got treated. I respond to sulfasalazine, maybe you can try that, it's affordable and worth a shot. However, it works better on my peripheral joints than my back. You need a mri with the correct sequences to show inflammation or with contrast. Slight inflammation wont show on a regular mri.

And that whole neuroplasticity thing sounds like bs.

Basically the whole early inflammatory arthritis phase is a dangerous place to be. There isn't solid empirical guidance on what to do for patients that fall into this area. Some drs are willing to treat you and others won't. There are risks associated with both. The good news is that it is possible to get treated without a firm diagnosis but it sometimes takes time to find a dr who will help you.

Good luck and I hope you get some relief soon. Don't give up and don't despair, you can get through this!


Edited by Smiletoday (05/14/14 12:06 AM)
_________________________
Everything is okay. Trust yourself, and do not live from a place of fear.

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#503406 - 05/14/14 09:09 AM Re: Newly diagnosed, rheumys won't treat me!!? HELP!!! [Re: Jeffery]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6126
Loc: Reno or SFLU Philippines
Hi, Jeffery:

That second rheumy is a lunatic! Don't be discouraged; You have "Pre-AS" and should demand from a rheumatologist that they figure out a way for You to AVOID the permanent damage that will happen if You are not treated.

There is ONE guy in Australia who can advise You enough to avoid the damage and ONE website You can learn to do it Yourself: Right here. Congratulations.

Better if You want to convince people You have inflammation at a characteristic location to get contrast (nuclear) bone scan.

But YOU know where it is and can learn why and how to avoid it: YOU should be Your own best physician and advocate; nobody cares as much as You do and nobody can fast for You, eat right for You, exercise for You and avoid NSAIDs for You. I would do it for You if I could, but I am a mere mortal and in the past sowed my own Dragon's teeth; I am a warning against current allopathic approaches, and today counsel that we patients should not wait for the science of medicine to filter down to the very confused medical guilds who continue to suffer from paralysis of analysis.

Take enough advantage of the resources here so that You will not require a rheumy or a diagnosis!

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#503422 - 05/14/14 03:35 PM Re: Newly diagnosed, rheumys won't treat me!!? HELP!!! [Re: Jeffery]
cemc Offline
Major_AS_Kicker

Registered: 01/25/10
Posts: 2105
Loc: UK
Sounds like you need to find a rheumatologist who is willing to at least consider spondyloarthritis, even though you clearly don't have the radiological evidence for AS just yet. Also, anti-tnfs aren't the only thing you can take - NSAIDs have been the first line treatment for AS and in some countries you have to have tried them before you get onto anti-tnf treatment, so if you haven't tried NSAIDs regularly at full therapeutic doses, then ask your PCP if that is worth prescribing for you. The suggestion of asking for additional MRIs with the correct sequences to show inflammation (i.e. it needs to be requested with the indication of inflammatory arthritis) is useful too, as that may show what are known as romanus, or andersson or modic type 2 lesions, which may be considered sufficient evidence of inflammation to get at least an undiff spondy diagnosis.

You do seem to be very stressed about all this though, and alongside other approaches, maybe it might be useful to see a psychotherapist who does CBT (cognitive behavioural therapy) as that can be a big help in dealing with the pain of a chronic condition.

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#503434 - 05/14/14 11:13 PM Re: Newly diagnosed, rheumys won't treat me!!? HELP!!! [Re: Jeffery]
Tnate Offline
Fifth_Degree_AS_Kicker

Registered: 10/06/08
Posts: 360
Loc: South Florida
Yes

Every doctor that isn't stupid acts like it. And as John said most are lunatics!

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#503444 - 05/15/14 06:06 AM Re: Newly diagnosed, rheumys won't treat me!!? HELP!!! [Re: Jeffery]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 9842
Loc: Brittany, France (since Nov 08...
Am appalled - finding a good rheumy is yr first step... yes The one you saw is a prime straight case of 'clonker' syndrome. Neuroplasticity indeed - shakes head in disbelief.

The anti-TNF bio-therapies require a Rx from a rheumatologist. In addition, the biotherapies cut down on inflammation but do not 'completely' cut down on pain levels, so still got to deal with some of the pain levels - nowt set in concrete, but, TNF aint the almighty wand it is put out as being and, apart from the possible side effects (*nasty) the body can get used to, and then one is back to square one, and looking to try alternative therapies, whether they be other biotherapies or not.

First off you need a rheumy specialising in AS. Then a good set of MRIs, but *not the plain MRIs...but the Sagittal STIR, t-1, t-2, fat saturated, plus coronal planes. This will show up the inflammation, squaring of the vertebrae, Romanus Lesions / Andersson Lesions. Need full spine including cervical and of course the SIs. So this is your first port of call. Proper MRIs - which will also show syndesmophytes / osteophytes, fusing, compression fractures etc etc. In addition, and also of some use, are the nuclear bone scans as they show up ALL inflammation. Joint damage don't usually show up on X-Rays for several years, so nix them for the time being.

You do NOT have to have SI involvement for a DX of AS - helps that's all, like, would be a case of no further discussion, especia;l;y IF HLA-B27 negative, but is not strictly necessary as...takes many years for the SIs to show involvement, and more so IF a woman. (For info only, women present differently to men). Yes, I know you are male <smile>

There are other treatment options besides the anti-TNF therapies. Diet for one - low starch / no starch diet. Anti-inflammatory diet. The Paleo diet. And a good book to have at hand is the Carol Sinclair book, The IBS Low Starch Diet Book. Then, low dose Naltrexone - see Alternative forum here on KA - lowdosenaltrexone.org - ldnnow.co.uk - ldnresearchtrust.org - etc etc Several AS'ers have had good results using LDN, including myself. (have been on/off LDN for just over six years now, swear by it. Also helps with the IBD.)

NSAIDs - can try. Problem being the side effects. Nasty for the gut and for the heart. More and more evidence coming through re deleterious side effects. But, if can tolerate, does cut down on inflammation. (I had to stop taking owing to horrific gut side effects. Orrible !)

OK. Hope thius has helped, but, find a good AS rheumy. Dunno where you live - which country - but if USA then check with the USA AS Association : SAA. Also useful is the UK AS Association, NASS. Lots of useful information -

Take care -
_________________________
MollyC1i - Riding OutAS

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#503445 - 05/15/14 06:29 AM Re: Newly diagnosed, rheumys won't treat me!!? HELP!!! [Re: Jeffery]
SimplySouthern Offline
Fifth_Degree_AS_Kicker

Registered: 04/21/13
Posts: 372
Loc: South Carolina -- USA
Welcome to the infamous circle Jeffery!

The last Rheumy I saw said (and was furious), "Why hadn't I been put on an Anti-TNF years ago because much of what she is seeing might have been prevented!" but, the verdict is still out on that one too as she awaits further testing that is so hard to get. The 1st Rheumy told me I didn't have inflammation so I couldn't have AS however, the MRIs show I'm flooded with it and bony growth from C2 to the lumbar range (confirmed by a Neurologist and an Interventional Radiologist).

The flag of interest was raised earlier this year after an accident required a number of radiologicals however, it's amazing how many doctors rely completely on what the reports says AND how those that do read films, see things not on the report (I have another thread going on that subject).

Don't give up and be persistent (I did for years until shy of fusion, it's broadly spread).

It's clear we have doctors insufficiently verses in AS or AS progression. It can be silent as far as visibility for years, all while the destruction is on going. Can your PCP and Natural Path doctors back up why they think you have it? I'm not one to guide you to success in getting answers but I have spent years being torn between doctors so I am totally empathetic towards your situation.

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#503446 - 05/15/14 07:29 AM Re: Newly diagnosed, rheumys won't treat me!!? HELP!!! [Re: Jeffery]
Inanna Offline
Very_Addicted_to_AS_Kickin

Registered: 11/15/01
Posts: 18076
Loc: UK
Jeffrey, AS can be extremely difficult to diagnose. It sounds like you might have it based on B27+ and sciatica, but it depends what testing the rheumies are using. If they are depending on damage that shows on x-ray and inflammation indicators through blood tests, then they are woefully behind on information. Please search the ASAS Handbook here, as it contains the current criteria for diagnosis. But you can't go in demanding to be diagnosed with AS or demanding to be given an anti-TNF med. Doctors don't like that.

You don't say where you are, so it's hard to say how your medical system works. You've heard from Americans and Brits, I'm Canadian. Regardless, not all rheumies are up on the latest information and a referral to a specialist in the spondy diseases is best.

Request a nuclear bone scan - it will show where your inflammation is. Usually, sciatica is a first sign of SI involvement. People with AS don't always show the signs of inflammation in bloodwork; that's why it's important to have an imaging scan that will show where you have inflammation.

Your GP has to be willing to work with and fight for you on this, but you have to be willing and strong enough to be your own advocate. Unfortunately, proper treatment from this disease, other than the lifestyle changes you are willing to make, can only come from a qualified rheumatologist. Given your symptoms, I would say you have yet to be sent to one qualified in diagnosing AS.

Ask for a new referral and this time, take a list of your symptoms in so that you have them clear in your mind. The list you've posted below should do. It hits all the right notes. If they seem determined that you do not have AS, ask them what you need to do to get a diagnosis because you've already been hospitalised for depression caused by pain.

You do not have to have visible damage to your SI joint, just inflammation that is visible on a scan - either nuclear bone scan or sagittal MRI with dye.

By the way, Celebrex is the only NSAID that helps me. Mobic was useless, so was Naproxin. And I'm on an anti-TNF to boot. I had the same signs as you at first and I was, eventually, diagnosed. But I had doctors fighting for me.

I hope you get some help soon.

Warm Hugs,
_________________________
Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"


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#503447 - 05/15/14 07:38 AM Re: Newly diagnosed, rheumys won't treat me!!? HELP!!! [Re: Jeffery]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 9842
Loc: Brittany, France (since Nov 08...
Jeffrey - Kat's right on the button. And yes, Celebrex is fab med. Was on it for some seven years odd until...side effects of GERD / Reflux showed up - horrible. So had to change. Then my other med of choice has recently been axed for RX to AS'ers (daft) but fortunately, the LDN works so well for me re being an excellent anti-inflammatory that it don't much matter. And when in overly pain - which happens a couple of times a year (odd) - I take a pain med.

Take care -
_________________________
MollyC1i - Riding OutAS

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#503453 - 05/15/14 05:27 PM Re: Newly diagnosed, rheumys won't treat me!!? HELP!!! [Re: Jeffery]
jpinperth Offline
Bronze_AS_Kicker

Registered: 12/01/03
Posts: 1368
Loc: Canada, Ottawa
Ask your GP for a Bone scan and if you have inflammation any place in your body it will show up .


Janet

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