Author Topic: "Disease Markers Not Improving"  (Read 402 times)

AnneNeville

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"Disease Markers Not Improving"
« on: October 09, 2017, 07:44:54 AM »
I could use some moral support and insight on handling this next step in my treatment. I'm trying to wrap my head around it.

I was diagnosed with Sjogren's last March or so, and I have been on Prednisone and Plaquenil ever since. The plan was to do a Prednisone burst, then taper down once the Plaquenil kicked in. However, the first time we tapered down during the summer, my bloodwork showed that the disease was still active.

Now, I'm tapering down again (from 20 mg/day to 12.5 at this point), and once again my bloodwork is worsening. I guess that Plaquenil is not doing the trick, and my doctor won't want to keep me on Prednisone due to the side effects (I'm starting to have hair thinning, for example).

In November, I'll repeat the bloodwork and we'll start talking "next steps." As I understand it, the next line of treatment would be Rituximab, possibly with methotrexate.

Can anyone please give me some information about what using these medications for Sjogren's is like? It isn't clear to me exactly how the infusions work in terms of administration (how often, how long, what exactly is a typical course of treatment for Sjogren's). Personal experiences would be very helpful to me. I am finding the prospect of this kind of expensive treatment kind of frightening, and it's underscoring to me that I really do have a chronic illness.

That said, the last months while I've been under treatment have been the best months I've had in years.
Diagnosed with primary SS 2/2017 after 20+ years. Double vision from 6th nerve palsy, severe anxiety (now gone!), fatigue, dry eyes. Now: 12.5 mg Prednisone (burst), 200 mg Plaquenil, Prozac, Wellbutrin, Restasis, Xiidra.

Kathy57

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Re: "Disease Markers Not Improving"
« Reply #1 on: October 09, 2017, 08:46:45 AM »
Anne,

I would like to give you much needed moral support.  I think you are doing everything that you can do, unfortunately, Sjogens is a chronic illness😒

The good news is that you are feeling so much better!  I am seronegative but I am so lucky to still be treated.  I am not a doctor or an expert but I think you should focus on how you feel and not on your blood work.  (I know others who are more knowledgeable than I will give better advice)

I think our blood work is fickle and may not even correlate with how we are feeling.  That said, I think you will be lucky to be able to try different treatments to see if you can find something better.  I?m just staying on the Plaquinil and Evoxac for now and I feel lucky to get them.

My blood work has not been checked in three years.  I guess I will ask about it at my next appointment.

Hang in there!

Kathy
Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer

A Mom on Spin

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Re: "Disease Markers Not Improving"
« Reply #2 on: October 09, 2017, 02:14:30 PM »
Anne,

Do you know which particular blood test your dr is using to judge your Disease activity?  I ask because it is my understanding that there are no particular markers to look at with Sjogren's.  Some people may have an elevated sed rate or CRP, but not always.  As many people have said on this site, our bodies are our best judges and it often matters more how you feel as opposed to what numbers appear on blood test results.

It would not be unusual for placquenil to not be effective - it often isn't for Sjogren's patients.  Some lucky people experience great relief, but others not.

As to next steps, a diagnosis of Sjogren's alone would not qualify in the insurance world as benefiting from Rituxan..  It was only when I received further diagnoses of RA and lupus that I was given Rituxan.  By this time I had already failed therapy with methotrexate, arava, and Imuran.  These, and other DMARDS, are the usual "go to" drugs when placquenil does not work.

That being said, it took about four months for the first two infusions of Rituxan to kick in, but I can now confidently say it has almost eliminated my joint pain.  It had no effect on my neuropathy, fatigue, or dryness, but I had no expectations of improvement in those areas.   Relief of joint pain is an amazing blessing for me!

Wishing you luck and hoping your road is not as bumpy as mine!

Liz
www.mysjogrenslife.blogspot.com
https://www.amazon.com/author/lizwilkey
Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

irish

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Re: "Disease Markers Not Improving"
« Reply #3 on: October 09, 2017, 03:06:06 PM »
Plaquenil is not an immunosuppressant, it is a very strong anti-inflammatory drug. It is actually an anti-malarial drug or anti parasitic drug. Years ago it was used during the big malarial epidemics and the people with RA and other autoimmune diseases found that they felt much better while on the drug. It has been used since then at much lower dosages to help with the pain and inflammation of Sjogrens, but it will not cure a person or put one into remission.

I would be asking your doc about starting on Methotrexate, Imuran or Cellcept as these are the next drugs used and they generally suppress the autoimmune attack on the body. Soome people will swear that Plaquenil will suppress the disease but it will not. You don't even have to count on the blood markers to test the information as if you are still feeling badly and are getting worse the Plaquenil isn't helping much.  Do a search on discussion forums with the other drugs and with plaque nil. Get educated and address the issue with your doc. If he doesn't want to change your meds then I would find a more knowledgeable doctor. Good luck. Irish

vrystaat

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Re: "Disease Markers Not Improving"
« Reply #4 on: October 09, 2017, 06:56:22 PM »
I have been on all the drugs for SS. This includes Prednisone, Imuran, Methotrexate, Gamma Globulin infusions, and finally Cellcept. I was allergic to Imuran, and Methotrexate did not help. Prednisone completely cured my symptoms, but you can only take small bursts of this powerful drug. Cellcept is an extraordinary drug, and very powerful. But I got all sorts of infections and had to stop. Retuxan has similar problems. So now I remain untreated. Many of my blood tests were negative 20 years ago. Today I have abnormal SSA, SSB, high CPK, Sedimentation rate is high and I have a positive Rheumatoid factor. C-Reactive protein is high and my Gamma 3 is too low. I have the Cross-over syndrome with elements of SS, Lupus, polymyopathy and faint Rheumatoid arthritis. I have faith in my Rheumatologist, but quite frankly I'm so sick that he is losing interest. Keep your head high. Take lots of rest, and try to keep your spirits high. An antidepressant could be indicated.
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, gamma 3 globulin low;Multiple infections;Brain fog

AnneNeville

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Re: "Disease Markers Not Improving"
« Reply #5 on: October 10, 2017, 08:30:06 AM »
We are looking at C3 and C4 levels. Also my double vision has stabilized but stopped improving.

I'm already on loads of antidepressants. I'm not depressed or particularly anxious now. That is one of the benefits of treatment so far. I haven't felt this good in years and I hate to think of losing that as I take off the prednisone.
Diagnosed with primary SS 2/2017 after 20+ years. Double vision from 6th nerve palsy, severe anxiety (now gone!), fatigue, dry eyes. Now: 12.5 mg Prednisone (burst), 200 mg Plaquenil, Prozac, Wellbutrin, Restasis, Xiidra.

AnneNeville

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Re: "Disease Markers Not Improving"
« Reply #6 on: October 10, 2017, 08:38:16 AM »
Liz, my worst symptoms are fatigue and double vision from a nerve palsy, and prior to the prednisone, debilitating anxiety. Joint pain is much less of an issue. Maybe the vision problems are part of why Rituximab is in the running. For all I know, it'll be methotrexate first--but rituxin is more often mentioned to me by my rheumatologist.

Does Rituximab offer steady relief? On Reasonably Well, it sounds like it gave partial relief for four months out of each six month cycle.
Diagnosed with primary SS 2/2017 after 20+ years. Double vision from 6th nerve palsy, severe anxiety (now gone!), fatigue, dry eyes. Now: 12.5 mg Prednisone (burst), 200 mg Plaquenil, Prozac, Wellbutrin, Restasis, Xiidra.

A Mom on Spin

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Re: "Disease Markers Not Improving"
« Reply #7 on: October 10, 2017, 12:29:35 PM »
Anne,

Have you been diagnosed with lupus as well?  I ask this because it's my understanding that complement levels (c3 and c4) are more often used to monitor disease activities with lupus, not necessarily Sjogren's.

As to whether Rituxan gives steady relief, I can't answer that question because I haven't been on it long enough to need a second cycle.  Like you, I've heard that the relief will wear off at some point before my next infusion.   What I do know is that it is a B cell inhibitor, and if it works, it will help to slow down or halt the progression of the disease.  In my case it's been approved because my anti-ccp titer is at high levels (an indication of aggressive RA).  I wish it had helped to relieve some of my overwhelming fatigue, but it just hasn't.   

Liz

www.mysjogrenslife.blogspot.com
https://www.amazon.com/author/lizwilkey
Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

AnneNeville

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Re: "Disease Markers Not Improving"
« Reply #8 on: October 10, 2017, 01:34:15 PM »
I have not been diagnosed with Lupus.
Diagnosed with primary SS 2/2017 after 20+ years. Double vision from 6th nerve palsy, severe anxiety (now gone!), fatigue, dry eyes. Now: 12.5 mg Prednisone (burst), 200 mg Plaquenil, Prozac, Wellbutrin, Restasis, Xiidra.

jazzlover

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Re: "Disease Markers Not Improving"
« Reply #9 on: October 10, 2017, 05:12:51 PM »
I would worry more about how you feel  than a "disease marker." .. but maybe that is just me.

I have not taken any of the drugs indicated for SJS and I probably won't be able to, other than drugs for my eyes. I reacted to plaquenil many years ago when being treated for Lyme disease.

Steroids make me crazy and I can't sleep.

---just letting you know that it's possible---
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

SjoDry

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Re: "Disease Markers Not Improving"
« Reply #10 on: October 11, 2017, 08:35:02 AM »
Ann,

You might wish to try low dose Naltrexone before going on to the heavy-duty meds. I just started LDN a few months ago & have not felt this good in years.

Best of luck to you.
SjoDry
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Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

Navigator

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Re: "Disease Markers Not Improving"
« Reply #11 on: October 11, 2017, 02:04:46 PM »
Hi

I have to echo some of what has been said. How are you feeling???  SJS does not go away.  I note you are on what is a half dose of plaquenil at 200mg.  I agree with others that plaquenil is an anti-inflammatory but it is most relevant how you feel..not what the numbers are.  You are not cured of this disease.  There is a risk/reward issue here and some of the respondents have touched on it. The drugs you are mentioning have some big side effects and should not be taken without a balancing of outcomes vs side effects.

What exactly are your symptoms that you find distressing???  Personally I would start with the least invasive drugs and move on from there...and focus on how do I feel.
Hashimotos thyroiditis, Primary SJS, IBS, autoimmune hearing loss, leucopenia, arthritis,asthma.
Synthroid, Plaquenil, Crestor, Evoxac,Vit D , Fish Oil, Restasis, Daily Walking, Sleep, Baby aspirin, Probiotic, avoid gluten,dairy and sugar, hearing aide, gratitude, big dog

jazzlover

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Re: "Disease Markers Not Improving"
« Reply #12 on: October 11, 2017, 08:03:09 PM »

What exactly are your symptoms that you find distressing???  Personally I would start with the least invasive drugs and move on from there...and focus on how do I feel.
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Yes.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

AnneNeville

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Re: "Disease Markers Not Improving"
« Reply #13 on: October 12, 2017, 08:26:59 AM »
Although I still feel much better than I did a year ago, each time I reduce the Prednisone I become more anxious and fatigued. I also get more body/muscle ache. The fatigue and anxiety are the worst. Time will tell how much is due to withdrawal I guess.

I will ask about other treatment options or dietary changes.
Diagnosed with primary SS 2/2017 after 20+ years. Double vision from 6th nerve palsy, severe anxiety (now gone!), fatigue, dry eyes. Now: 12.5 mg Prednisone (burst), 200 mg Plaquenil, Prozac, Wellbutrin, Restasis, Xiidra.