Author Topic: Drug induced remission and CRP?  (Read 171 times)

MAT51

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Drug induced remission and CRP?
« on: November 29, 2017, 11:55:15 AM »
When previously diagnosed with RA there was sometimes talk of drug induced remission. Now my diagnosis has changed to Sjogren’s and I’ve been struggling with SFN on and off for 7 years. In my case my nerves seem to have been damaged in stages. When I had my worst flare of peripheral neuropathic pain throughout 2015, my CRP rose to 160 and sed rate soared too but not as dramatically as CRP.

These days, as some of you know - I struggle more with periods of numbness which seems to be progressing slowly but surely. I’m told by experts that the SFN and ganglionopathy of Sjögren’s is usually self limiting. I’m on max dose of Cellcept - been taking it for a year now.

Now I’m starting to feel a little more optimistic for myself because I found out yesterday that my CRP has dropped down to near normal at 7 - usually it is in the teens but it’s been going steadily down for a few months. My PV/ sed rate has dropped a lot too over the past few months. My GP suggested that the resurgence of pain over the past year might have masked the numbness - and now my inflammation levels are down I’m not in much pain but more aware of the collateral damage in form of numbness?

I do honestly believe that my SFN is of a relapsing  remitting  nature very like MS but systemic rather than demylenating. Inevitably I am wondering if the Cellcept is at last working or whether the SFN has finally burnt itself out? Dangerous thinking I realise so I’m just crossing fingers like mad that the SFN has limited itself at last.

« Last Edit: November 29, 2017, 02:41:14 PM by MAT51 »
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

anita

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Re: Drug induced remission and CRP?
« Reply #1 on: November 30, 2017, 07:51:29 PM »
It is VERY normal for SFN related to Sjogren's to wax and wane...and of course go into full flares, as well.  You may doing better than you think.

You had the reduction in pain (and increased numbness) before you got going with the Cellcept, so I don't know if the medication has anything to do with your current situation.  I honestly think you are just following the normal path that all of us follow with SFN from Sjogren's.  I don't want to bust your bubble, but you will likely experience waves of pain periodically down the road as this disease progresses.

Your CRP and SED rate are clear signs that your level of inflammation has improved!!!
52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

MAT51

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Re: Drug induced remission and CRP?
« Reply #2 on: December 01, 2017, 12:28:43 AM »
Thanks Anita. Just trying to get my head around this level of numbness. It seems we adapt slowly to it and then a new flare of pain surfaces lasting months and months and then, when it finally eases - we are left with an even greater extent of collateral damage ie numbness? I feel very challenged by this numbness personally because it affects my ability to stand up, to navigate anywhere remotely busy with moving people or vehicles etc. I know I’m fortunate not to have much pain now - but for me personally pain at least keeps me fairly focussed. My pain threshold is high but my threshold for becoming progressively numb everywhere is not!

It is different for you having one of the best Sjögren’s Doctors in the world. I feel that my Doctors are spinning me a yarn a lot of the time - maybe one they believe themselves? Maybe just because they know that there is no way the powers that be will allow us Ro negative individuals meds like Rituximab or IViG due to the huge expense.

So I get told that PV (ESR) is always going to be high because of higher concentration of IgG. I’m told that elevated sed rate/ plasma viscosity does not indicate inflammation for people with Sjögren’s. I’m told that raised CRP is just an immediate response to pain - including osteoarthritis and Fibromyalgia. I’m told that SFN is same as Fibromyalgia and is only due to a heightened/ skewed response to pain due to Sjögren’s fatigue. This is what I’m told by every doctor I see (apart from the good ones who admit that it’s all about money!). In this way I’m rendered inactive because I can’t fight the entire system when it’s already on its knees!

My CRP seems key to this because the Sjögren’s doctor told me it isn’t usually raised at all for those who have Sjögren’s or Lupus. Mine hasn’t been this low since I was on steroids a few years ago and was high even with numbness or lack of pain previously. So for me this is something significant as I feel my CRP is very much an indicator of disease activity.

I’m not holding my breath but I do hope that it’s the Cellcept maybe finally doing something. The +2 trace blood has gone from my pee and GI pain and nausea at both ends has settled entirely (with daily stimulant laxatives) and I haven’t had any arthritic pain for many months now. As I don’t have any adverse symptoms from it I’m tempted not to rock the boat but I do plan to add in Pilocarpine because the dryness and choking in the night is getting me down rather.
« Last Edit: December 01, 2017, 12:47:15 AM by MAT51 »
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!