posted
Has anyone HAD to do a methotrexate or other RA treatment while doing lyme treatment to stop severe and fast-acting damage?
This is a last effort to control joint damage and inflammation that is "off the charts".
My LLMD told me flat-out that she's never, in her entire medical career, seen sed rates and CRP levels as high as mine. She is extremely alarmed and sending me back to my rheumatologist so they can work together on my case. I will stay on my lyme abx while trying the methotrexate.
Anyone gone though something like this?
Posts: 8 | From baltimore, MD | Registered: Jan 2012
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posted
Hello. I have a really complicated RA history; i was diagnosed with RA and treated for 3 years (with no obvious benefit) before my +Lyme test.
My picture is a little different. All along i have had a normal CRP and SEd rate, but a +RF and the bugger of all, a +CCP that is too high to even measure (i assume your CCP isn't +?).
I was on Metho (made me sick as a dog..dont mean to be negative just keepin it real) and then on 5 different TNF blockers (Enbrel, Humira etc) and failed all of them.
My single biggest symptom is arthritic joints, especially feet and one wrist but in hindsight, my arthritis definitely "migrates" (was in the R hip, then knee, both of those resolved spontaneously). But, despite several years of this i have NO joint erosions, which as i'm sure you know, is the hallmark of true and active RA.
A couple things my history (6 Rheumys and many Orthos and Internal medicine people...about 28 in all over 4 years) has clarified for me are, first, you know that ANY infection can elevate the CRP, right? Second, have you ever had the VECTRA test?
This is the new RA test (your insurance should cover and the company will cover the remaining) that attempts to measure your inflammatory markers which could add clarity to your picture. If you want more info on that PM me.
lastly, how long have you been on Lyme treatment? It's a bit of a gamble but if you don't have actual joint erosion on MRI you might consider waiting while you treat Lyme and hoping your bod will settle down with that treatment. THis is what i am doing.
posted
sorry, one last thing i meant to ask you, if you don't mind my asking. Do you have a positive Western Blot with +band 39? I ask because i had just +39 through Labcorb in the midst of my RA mess that was discounted by both Labcorp and Rheumy's as "cross-reactive" with RA (ie: not really positive).
Eventually i got to a LLMD and an Igenex test and was +39 and +41 as well as IND 83-93. That general perception in old school medicine that 39 is cross reactive (Rheumy still thinks so), is how i ended up on massive immune suppressant drugs for 3 years:( Proceed with caution!
posted
Several years ago my LLMD suggested I fly to NJ to see the well-known rheumatologist familiar with Lyme RA. I could not afford to make the trip and at that point my LLMD told me I was too high risk for him to continue treating me.
I had taken Methotrexate and biologic drugs that LilaLee mentioned above and all were ineffective for me as well.
I had joint pain that migrated throughout my body but my most involvement was my spine + I was bedridden making the pain unbearable without narcotic intervention.
Presently my ANA and C-Reactive Protein are highly activated again. I have gotten some relief with (3) Plaquenil and (1) Arava.
I do not remember having a CCP test but may have in the 14 years I've had RA.
Posts: 245 | From Texas | Registered: Jul 2009
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Ellen101
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