Which Biologic?

[SjoDry]

Hi Sjoggie-Mates.

Well it's happened..I am at the point of needing to add another med. I have resisted the biologics due to my CVID and having only one lung. A bad infection could be really bad for me. I have an upcoming appt. with my Rheumy & I think we will be discussing either Methotextrate or Rituximab.

For those of you on the drugs mentioned, how have they helped you? Fatigue is a MAJOR problem for me at this time. My immunologist thinks that my adrenals are not working, my face is broken out horribly and I am losing chunks of hair daily. It has been awhile since my thyroid was checked..as I recall it was normal (low).

I am not gonna lie..I am very nervous about trying any biologic, but my Immunologist said that he does have patients who are on biologics without any probs.

Thoughts or advice are welcome.

Thanks much.
SjoDry

[Tharrell]

I always told my rheumy I would rather quit my job and see if less stress would work before I would start biologics. The day came that biologics was mentioned again. We had tried everything. So I quit my job. Two month later I was put on humira anyway and I wondered why I wated so long! At that time I was already on mtx, but no plaquenil. I noted no difference in fatigue or pain levels with mtx, hence we added biologics. I actually have been less sick since taking all these meds. I only had to stop my mtx and biologics two weeks before and after surgery and that's it. When a new and useless rheumy took away my mtx and humira, he said I only had fibromyalgia, I had my first major cold. I'm sure your doctor is very well aware of your situation and will make the best choice for you. Good luck!

[SjoDry]

Tharrell,

Has the Humira helped your fatigue?

SjoDry

[Jasper]

SjoDry .....

I have been on Rituximab since last February. I had 1000 mg on Feb. 26 and again on March 10th. 24 weeks after the first dose, I had 1000 mg on Aug. 11 and again on Aug. 26th.

Rituximab has been a miracle drug for me.

I had profound fatigue prior to starting Rituximab. I had no energy. No matter how much I wanted to do things, I could barely move. I could barely do anything, even cook or eat. I was eating sandwiches and soup as I had no energy to prepare food. I had not done laundry in 5 months or cleaned the floors in 5 months. Every step was an effort. I could not think clearly and I was affected cognitively. I could not even concentrate to read or watch TV. It was terrible. I got up each day only to wait to lie down again.

I was NOT depressed. I WAS profoundly fatigued. There is a huge difference between the two.

About 4 weeks after starting Rituximab, I noticed more energy and less fatigue. By 2 months after starting Rituximab, I had considerably less fatigue and considerably more energy. I also had more salive, considerably less neuropathy pain and fewer neuropathy symptoms. My joint aches and pain are less. My cognitive function is vastly improved.

I am not back to a pre-Sjogren's state of health or energy. I used to be like the energizer bunny, full of energy and never fatigued. However, I am happy with the vast improvement that Rituximab has given to me. My symptoms have improved dramatically on Rituximab. I can function. I can walk, cook, clean, travel, participate in activities and events, socialize, carry on a relatively normal life. No, I cannot do 10 mile hikes. Yes, I can do 2-3 mile walks. I can do several things in a day, not just 1 thing or nothing. I can read and concentrate. My PN symptoms have improved.

I have a life now. (I did not have a life prior to Rituximab, at least not for several months/years prior to Rituximab.) This is the best I have felt in years.

In addition, I have not had any flares since starting Rituximab. In contrast, I had 5 flares in 2015 and was on Prednisone tapers for each of those 5 flares.

I have no side effects from Rituximab. I did have some infusion reaction problems on the days of the infusions, but they were taken care of by additional Prednisone and Benadryl infusions. After that, I have had no side effects.

I tried Cellcept and Imuran prior to Rituximab. Neither helped me and both had very bad side effects for me.

My Rheumatologist told me she is using Rituximab infusions more and more on her Sjogren's patients and is having very good results. She told me she is even able to wean some patients off of Prednisone. And it is working on patients who did not respond to the other drugs.

I have read 6 studies on Rituximab. 5 of the studies showed significant improvement in fatigue as well as other symptoms.

Both my Rheumatologist and my Dermatologist said that most people tolerate Rituximab very well. My Rheumatologist has had no one develop side effects from Rituximab (other than transfusion reactions, which are generally very easily treated).

I go for my third set of infusions in Jaunary 2017.

[Tharrell]

SjoDry, Humira helped some, but nothing what Jasper is experiencing. On orencia right now. I just restarted last week with weekly shots so I don't know yet. Having two hip surgeries within two month wiped me out plus I also have a macobacterium kansasii lung infection which together with it's treatment can cause profound fatigue. Orencia is really great for joint pain and it has helped with tear production.

[Deb 27]

It's a shame they don't try biologics more often for us. It certainly sounds like they are worth trying if they get rid of the fatigue and joint pain.

[warmwaters]

On the advice of my rheumy, I tried Rituxin. I'll admit I was scared, but I had already tried a number of other things, including IVIG. I had a very bad reaction to IVIG, and a very bad infection on Cellcept.

My rheumy has seen folks have success with Rituxin.  I was not one of the lucky ones for whom it helped, but, on the other hand, I didn't have a serious reaction to it either. The first time I had the infusion I started feeling like I was getting itchy and lightheaded. They stopped, checked with my doctor, upped the steroid that I was taking with the infusion, and went more slowly with the infusion. So even I,"Miss supersensitive" got through it ok.

I felt wired on the steroid for about 2 days (common for me and steroids), and then after that felt a little achy and flu like. Had the second infusion after two weeks, with no problems.Again, sort of achy and blah for a few days.  I had an uptick in energy for a week or so, but never really felt much better.

So my thought is, if your doctor thinks it makes sense, it may be worth a try. Jasper's results are great, and I know of another Sjoggie who has also had great results.  Ask lots of questions, of course, and make sure you're ok with it.

[WhatYouSjo]

I have not used either, but I've researched SS treatments extensively.

Rituxan (rituximab) has had a mix of successful and unsuccessful trials. There are very promising anecdotes like Jasper's, while others don't find success. Personally, I think that a patient's response largely depends on what type of SS they have, but we don't currently have publicly available tests to measure interferon pathways, and more research needs to be done.

Orencia (abatacept) has had notable success in smaller clinical trials, including significant improvements in dryness and fatigue in some patients. A worldwide Phase 3 trial is currently being conducted. There is a good chance that Orencia will be the first systematic treatment approved for SS (likely around 2020 when the trial ends).

MTX seems to treat a more narrow range of SS symptoms, particularly treating joint and muscle pain. It is certainly the cheapest option, as patents on it have long expired. Rituximab patents just expired in the USA this year, and biosimilar drugs are only available in some countries. Orencia is still patented and likely to be the most expensive option. Personally, if my insurance was willing to cover Orencia, I would likely go that route, but I think many insurance companies are unlikely to cover it right now unless you also have RA.

I hope you find a treatment that works for you!

[Sharon]

For those of you who are/were on Rituximab:
How did you get it approved?
Was it originally prescribed for your Sjogren's or for a different condition?
I was told I could only get it if I had RA.

[warmwaters]

My insurance was medicare, and it was covered under that. Diagnosis is Sjogren's

[Sharon]

Thanks warmwaters, once again it appears I live in the wrong country for SJS treatments 

[quietdynamics]

I have been fortunate to have a good reaction to Methotrexate.
A significant reduction in fatigue, muscle and joint pain, tinnitus level/intensity went down, scaly patches on skin/forehead went away (I had cut bangs to hide it), even noticed less dry skin on bottoms of feet and gastro problems subsided, my hair stopped falling out so I could brush it without sighing and starting growing back in a bit...to name a few. And after years I was finally able to lift a gallon of milk with my right arm and same arm was not dropping as it would grow heavy simply holding the steering wheel driving (and right wrist pain). It no longer takes me two days to mop just the kitchen floor.. seriously.

Additionally for myself I found that I was able to decrease the dosage of some of my other meds.. which makes me physiologically feel better, as pre-SJS I rarely even took an aspirin.

When I originally was seen at Sjogrens Clinic Dr. said "unmanaged chronic inflammation for decades" .. goal to reverse organ damage.
Vit b and d were defience and they do affect muscle and bone so that has been addressed as well.
Weekly labs at first for close monitoring of tolerance (liver), then less often,  and Vit levels.

If you have night time sleep issues those should be addressed as well. If we do not get proper sleep it is an added stress.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3715949/pdf/tacca124000016.pdf