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#429030 - 01/18/11 11:48 AM In RA Denial
LT00 Offline
New_Member

Registered: 01/14/11
Posts: 4
Hello everyone, it's my first time to post. I thought I might ask for an opinion on my current drama with RA. I was diagnosed with seronegative RA in Aug 2007 and was in active treatment of methotrexate injectables weekly and Humira weekly up until Nov 2009. At that point, I rebelled and quit all meds including my antidepressant which wasnt a smart thing to do. But I felt terrible and had all these different meds in my body and felt like I was being poisoned. So I quit everything and then gradually added my antidepressant back in which ultimately made my state of mind much better. And as far as the RA, I treated my pain with Darvocet, Tylenol as needed. I was getting along pretty good for the most part. Carpal tunnel was another issue that I had been dealing with along with the RA. In April, 2010 I got my right wrist released and had a long recovery from that. Finally in October that wrist started being mostly pain free, then the left wrist started acting up to which steriod injections did not help so in December I got it released. I felt this hand was responding better as far as pain level for the first several weeks. Then the last week of the year, I woke up one morning with both my hands very stiff and ultimately in the shape of a C. It has progressively been getting worse not better. Each morning very tight, stiff and difficult to move. I eventually get it worked out and can function but every morning it returns.I cant make a tight fist during any part of the day without feeling pain, both wrists are tight in the morning but can be worked out during the course of the day. I am scheduled to see my surgeon this week and will discuss it with him. Hopefully he will give me a Medrol dosepak which I am sure will eliminate the issue for awhile. I also have an appt with a new Rhuemy but can't get into see him until March (he must be really good). I just don't want to see my old RA, its not that I don't trust her...well maybe not completely. I have always been in denial of RA. First seronegative sounds just that NEGATIVE. My CRP has always been elevated, no RH factor in my blood, however the ANA test was speckled. And the whole disease is confusing to me. How can you feel fine and then overnight feel so bad? I guess I just never felt like my diagnosis was correct. I was worried I was being treated for something I didn't have and the side effects of the drugs scare the hell out of me. There is a lot of cancer in my family and I sure don't want to take drugs that will bring it on. Any thoughts? Is RA really that unpredictable? I used to have swelling and pain in ankles, knees, elbows, wrists and all my fingers but currently wrists, hands, all fingers seem to be the focal point. Thanks for listening. One more thing, what brought me to this site was a previous post asking who a good rhuematologist in Austin TX was. The new one I am going to is Dr. Monty Tew, I have researched and have seen positive reviews. Anyone here know of him?

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#429034 - 01/18/11 12:59 PM Re: In RA Denial [Re: LT00]
Donette Offline
Gold_AS_Kicker

Registered: 04/03/09
Posts: 1576
Loc: Idaho, USA
Hi LTOO,

Wow you've had a hard go of it, so sorry to hear that. I have AS, not RA, but I have major wrist/hand involvement too. I used to take a biologic but I was allergic to it, and so I have to do more natural things like the No Starch Diet. If you are unsure of your diagnosis (did they test you for AS?) then maybe you could test the diet and see if it helps you. It helps me so much. I also took most of the sugar out of my diet and then I saw dramatic results. Most people just take starch and lactose out to see a reduction in pain and stiffness. It's pretty easy to try. I saw results in 48 hours. Some take a couple weeks to 2 months to see a full benefit from diet. There is a diet forum here to learn more about it. There is also an RA forum here, where you can read old posts and search, and also post. The RA members will see your post here too though.

Good luck and take care.
Donette

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#429036 - 01/18/11 01:15 PM Re: In RA Denial [Re: LT00]
WendyR Offline


Registered: 12/23/08
Posts: 5231
Loc: BC, Canada
Hi LT,

I also have seronegative RA and have gone through some doubts like you have over the whole seronegative issue. However, there are other key symptoms that should have led your rheumy to the diagnosis of RA over any of the spondys or other autoimmune diseases. A key identifier is whether your joint pain is symmetrical - i.e. both knees, both thumbs etc.

To tell you a little more about myself because I think it relates:

My RA was diagnosed in early 2009 but by mid 2009, my pain levels were severe enough to require a fentanyl patch to function and my CRP (and ESR) were over 100. I was trying to resist methotrexate and was trying the slightly less toxic DMARDs. In the end, I was forced to try methotrexate because my doc was fearful of internal damage from my highly elevated inflammatory proteins (CRP etc.) It took close to a year to reach its maximum strength but my pain levels and inflammation have reduced, although not gone altogether.

I am also anxious about the side effects and long term risks from using such potentially toxic drugs and wish there was something less toxic available to people with these crippling long term autoimmune diseases. However, having seen the horrific damage that RA inflicted on my grandmother, I realize it is all a balancing act and the methotrexate is preferable to such severe disablement or an early death from cardiovascular disease.

I read a study last year that found that there is a high mortality rate amongst people with RA - and this is from "cardiovascular incidents" - i.e. heart attacks and stroke. This study helped to convince rheumatologists to take rapid and serious action against RA early on in the disease. Prior to that, the medical profession held back, using only the least serious drugs first and saving the stronger drugs until later in the disease, in the belief that they would need something stronger later on when the disease got worse. They now have the opposite approach as the study proved that many RA sufferers were dying because the disease was inadequately treated. They now realize it's important to get it under control early before all the damage is done.

That study helped to convince me of the importance of tackling RA very seriously immediately it's been diagnosed.

Last year, when I was most ill, my hands were the same as you describe. I would wake up in the morning (or come to in pain really) to find my hands curled into a C and be unable to straighten them. I had to work them gently and warm them in hot water to get them moving. They would gradually improve throughout the day. The stiffening that happens while you are inactive (asleep or resting) is a key symptom of auto-immune arthritis. My belief is that, when your circulation slows down due to inactivity, the inflammatory proteins in your blood stream concentrate in the areas under attack. When you get moving again, your increased circulation gets them moving and thins out the concentrations in your affected joints. When I proposed this theory to my doc, he agreed, but I've never seen it written like that anywhere else! However, for me it's a good picture of what is going on.

By the way, like you I also have a positive ANA.

If you are already suffering concrete damage in your wrists, I suggest your RA has reached a point at which it is important to have a trusted rheumatologist and treat the RA aggressively before you suffer any more damage.

The best of luck.

If there is anything else I can share or help with, please let me know.

And welcome to KA!!
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil

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#429066 - 01/18/11 06:13 PM Re: In RA Denial [Re: LT00]
jacksmum Offline
Decorated_AS_Kicker

Registered: 12/31/03
Posts: 725
Loc: Australia
Hello,
So sorry to hear about your hand/wrist pain that you go through. It must be really hard to tolerate and I am hoping that your new rhuemy will be able to offer some good alternatives and treatment to you. Welcome to K.A - it is a great spot to come and talk to people who know what you are going through.
Best wishes,
Debra.

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#429152 - 01/19/11 10:13 AM Re: In RA Denial [Re: jacksmum]
LT00 Offline
New_Member

Registered: 01/14/11
Posts: 4
Wendy,
Thanks so much for taking the time to explain that to me. It makes perfect sense, I have not heard it explained that way before. My symptoms are most definitely symmetrical. But the degree of pain on my right seems to be less than my left at the moment but both are definitely affected. When I have had swelling in my ankles, its always both. I have an appt tomorrow with my surgeon who performed the carpal tunnel release. I am going to see if I can get him to do x-rays of my hands since he has a machine in his office and also see if he can assist me in getting into this Dr. Tew prior to March 8.

Wish me luck!
LT

Oh, one more thing, I thought I posted in the RA forum but according to Donette, I did not. Can you provide the link to the correct RA forum, I guess I am blind too (LOL) I can't seem to locate it. New to navigating the site.
Thanks.


Edited by LT00 (01/19/11 10:16 AM)

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#429154 - 01/19/11 11:06 AM Re: In RA Denial [Re: LT00]
LT00 Offline
New_Member

Registered: 01/14/11
Posts: 4
I am working on getting a "trusted" Rheumatologist that I mesh with. I hope Dr. Tew is it. If anyone knows anything about him, let me know. Or anyone else that is good in the Austin, TX area.

Thanks.

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#429205 - 01/19/11 06:14 PM Re: In RA Denial [Re: LT00]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21331
Loc: Upstate NY
you are in the RA forum smile

welcome!
_________________________

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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