banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Forum Statistics
Forums33
Topics44,170
Posts519,800
Members14,024
Most Online1,931
Jan 16th, 2023
Newest Members
yellow, help, NicoleGur, Maite, PhilD50
14,024 Registered Users
KickAs Team
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)

Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.

KickAS QR Code
Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#504819 07/05/14 04:19 PM
Joined: Dec 2008
Posts: 718
Decorated_AS_Kicker
OP Offline
Decorated_AS_Kicker
Joined: Dec 2008
Posts: 718
Hi all,
I have been on Remicade for the past six years. Last several months, I am having a sort of flare like problems and unable to walk due to pain. My last infusion was 1.5 months back and I am into problem for the last 20 days. I consulted a doctor (Ortho) who x-rayed my hip and mentioned that gap at the hip joint is less and is due to AS. He was mentioning to inject some sort of synovial fluid at the joint to reduce the problem.
My rheumy used to tell that Remicade have been working on me despite the fact of my complaint on pain for the several months. But presently ortho has given some more findings. I really do not know whether the pain is due to regular AS or due to problem at hip, because the symptoms are similar. I get pain at hips and inner thigh. I get discomfort to stand for more than 5 - 10 mins.
Anyone has any idea, kindly comment.

Jay

Joined: Sep 2001
Posts: 6,164
Likes: 13
AS Czar
Offline
AS Czar
Joined: Sep 2001
Posts: 6,164
Likes: 13
Hi, Jay:

I am sorry to hear of Your bursitis and that biologic might have stopped working; we sometimes develop antibodies to this class of drug--this is the immunologists' rule of about 40 or so exposures but not in every case certainly. Some rheumatologists combine MTX with these drugs to try and avoid this.

You are the one who can discern whether or not the Remicade has been working, and especially if You know Your ESR and happen to be an 'indicator' (wherein ESR/CRP tracks disease activity).

I can't tell You much more than You already know about what I have done in the past to eliminate this pesky problem, but I know this problem all too well.

Best Regards,
John

Joined: Dec 2008
Posts: 718
Decorated_AS_Kicker
OP Offline
Decorated_AS_Kicker
Joined: Dec 2008
Posts: 718
Hi John,
I have been taking MTX for remicade. I am yet to check my ESR. But, I observed my ESR to be be normal 2 months back before last Remicade infusion, when my condition was not all that good. Ortho was mentioning about Vegan diet. Hence, I have discussed with him about LSD. But he was not advising LSD. As you are aware, following LSD will be difficult here in India. I need some medical support to follow that.
I would like know whether hip will get eroded or cartiledge get affected due to AS?

Jay

Joined: Dec 2008
Posts: 718
Decorated_AS_Kicker
OP Offline
Decorated_AS_Kicker
Joined: Dec 2008
Posts: 718
Hi,
Yesterday I blood test done. My ESR after 1 hr is 12 (against normal 20).
I also discussed with my ortho and rhuemy regarding my hip X-ray. Ortho said that synovium is affected and I need chemical synovectomy at the hip joint (in the form of injection) to be given, which is not a steroid. When I discussed with my rheumy about this, he said it is of no use and preferred steroid shots at hip. Presently prescribed 10 mg prednisone for one month and then to taper.
Anyone had chemical synovectomy at hip joint. It is also given at knee jints. How effective it is?. Kindly share.

Jay

Joined: Nov 2001
Posts: 18,186
Likes: 7
Very_Addicted_to_AS_Kickin
Offline
Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,186
Likes: 7
Jay, I'm sorry you're having pain. Sometimes that can happen, even when on biologics. The meds don't stop the disease, just slow it. Many of us supplement with NSAIDS and pain pills.

As for ESR, please remember that in AS patients, ESR is not generally an effective measure of inflammation. For some reason, in many of us, the numbers just don't elevate. CRP might be more accurate. My rheumy doesn't measure ESR at all.

And I hope you're feeling better soon.

Love and Warm Hugs,


Kat

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

Joined: Dec 2008
Posts: 718
Decorated_AS_Kicker
OP Offline
Decorated_AS_Kicker
Joined: Dec 2008
Posts: 718
Hi Inanna,

You are correct. Even in my most severe flare before remicade, ESR was just above normal and even CRP was just around normal. Yesterday, doc mentioned that normal ESR indicates absence of active inflammation. On clinical examination, he mentioned that I am better????. Hence,it appears that my present case of hip involvement is to be eased. I am keeping my fingures crossed and planned to try prednisone.
Presently, I am finding difficult to walk even 200 m after taking pain killers.

Jay

Joined: Dec 2008
Posts: 718
Decorated_AS_Kicker
OP Offline
Decorated_AS_Kicker
Joined: Dec 2008
Posts: 718
Hi all,

Anyone has any idea about Prof. Dr. Reinhard Fricke (MD), rheumatologist, at St. Josef-Stift Sendenhorst, D-48324 Sendenhorst, Germany. I understand, this doc was the first to suggest whole body cryotheraphy for AS/RA etc., I also understand that this doc or his hospital has been prescribing some injection which function as chemical synovectomy to relieve arthritic problems at joints in place of steroids for the joints. I would like to know the correctness of this info. How renowned is this hospital for rheumatology.
I would like to get details on this injection and its efficacy.

Jay

Joined: Nov 2001
Posts: 18,186
Likes: 7
Very_Addicted_to_AS_Kickin
Offline
Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,186
Likes: 7
Hi Jay, if your ESR didn't elevate during flare, then you are one of those in whom it doesn't elevate. Your rheumy might be incorrect.

Just to add a bit of cynicism, if prednisone (an anti-inflammatory) works, wouldn't that indicte that there is ... I don't know ... inflammation?

Is it just me? wink

I just hope you get some relief soon.

Love and warm hugs,


Kat

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

Joined: Dec 2008
Posts: 718
Decorated_AS_Kicker
OP Offline
Decorated_AS_Kicker
Joined: Dec 2008
Posts: 718
Hi Inanna,
Today I just started prednisone. Let me see the results. Thank you.

Jay

Joined: Feb 2011
Posts: 1,968
Pea Offline
Captain_AS_Kicker
Offline
Captain_AS_Kicker
Joined: Feb 2011
Posts: 1,968
Good luck on the Pred Jay. It will take a few days but you should start to feel better pretty quick until you decide on the shot.


Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
Page 1 of 2 1 2

Link Copied to Clipboard
Who's Online Now
1 members (haydenk), 113 guests, and 86 robots.
Key: Admin, Global Mod, Mod
Recent Posts
Meat and Klebsiella
by 604 - 04/09/24 09:47 PM
Green tea and more Klebsiella
by 604 - 04/09/24 09:22 PM
Trehalose
by 604 - 04/09/24 09:02 PM
What now?
by PhilD50 - 04/08/24 01:31 PM
Its been a long, long time
by Richard - 02/27/24 10:49 AM
Popular Topics(Views)
3,366,060 hmmm
1,322,180 OMG!!!!
711,142 PARTY TIME!
Powered by UBB.threads™ PHP Forum Software 7.7.5
(Release build 20201027)
Responsive Width:

PHP: 5.5.38 Page Time: 0.027s Queries: 35 (0.012s) Memory: 3.2484 MB (Peak: 3.4546 MB) Data Comp: Zlib Server Time: 2024-04-18 20:58:42 UTC
Valid HTML 5 and Valid CSS