Hi
Please share your personal experience and any research paper.
Thanks
According to my Rheumatologist & Immunologist, there is no cure currently.
We are all hoping for a new breakthrough. All current drugs help, some better than others.
I have been on them all, and none helped me. IVIG helped, but only for a short time.
One of my dearest friends, the leader of a local support group was treated by a very high end Rheumatologist at a nearby university,
and that's what he told her.
Live for the day!
I had problems with the immune suppressant drugs. You will see from my signature that I do not take them. I believe that our immune system is working just fine so I look for how to repair some of the damage. I use Acetyl-L-carnitine and R-Lipoic Acid to help do the repair. The rest fits into the concept of management until there is a cure.
The immunosuppresant Orencia has much improved some of my SS systemic manifestations
but not the sicca symptoms.
Rituximab has helped me immensely. No arthritic symptoms, fatigue, neuropathy, etc. Read my accounts here:
https://sjogrensworld.org/index.php?topic=30957.msg322253#msg322253
With any luck, it will be enough to bridge the gap until a more targeted b/t cell therapy completes phase III trials and is commercially available.
I used the terms: immunosuppressants stop or cure Sjogren's Syndrome pubmed
The only paper I found that addressed this question directly was published in 2010, and that is a long time a go, in terms of the progress of research.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3382673/
The different immunosuppressive regimens that have been tested for several years and in different clinical features seem to be unable to modify the course of the disease.
As far as I can tell from a brief survey of the published research papers, there is little evidence that immuosuppressants stop or slow the progression of Sjogren's Syndrome.
Anecdotal evidence (individual experiences expressed here on this forum) are not research. Rather they are individual experiences.
I put the same question using these terms: 2018 immunosuppressants stop or cure Sjogren's Syndrome pubmed
The results pointed out that some, but usually not all, of the symptoms of Sjogren's Syndrome may be alleviated by the use of immunosuppressants.
We are all hoping for breakthrough success with the use of monoclonal antibody treatment.
So I researched the term: 2018 monoclonal antibodies stop or cure Sjogren's Syndrome pubmed
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5784475/
As demonstrated by the often unsatisfactory results of the previously conducted therapeutic trials, the possibility of successful use of these new therapeutic agents remains a major challenge. These unexpectedly negative results could be the consequence of the remarkable heterogeneity of clinical and biological features that may characterize different subsets of patients with SS.
remarkable heterogeneity of clinical and biological features that may characterize different subsets of patients with SS. This is the key phrase: it means the remarkable differences of patients with SS.
We know we are so very different from those without an Immune Disorder. But we are also very different from each other, even with the same 'diagnosis' of Sjogren's Syndrome.
So the research continues and new many 'drugs' are developed and studied each year. But at the current moment I don't think a definite modality for slowing down or stopping the progress of Sjogren's Syndrome has been developed.
Regards, Elaine
Elaine,
Did you ever get a chance to try Rituximab, Orencia, etc.?
What does your Rheumatologist say about it? I got two very different approaches with regards to treatment (Rituximab from my research Neuro/Rheum (he's both) at Hopkins, and "the traditional low risk ( read easily reimbursable) care plan from my regular Rheum.
I suppose the point is, both Rheums are "believers" hence why I went with this treatment. There are studies with positive outcomes published by ACR... but then again, this is the internet, you can find anything to support any arguement. (As if studies aren't influenced by FDA actors and pharmaceutical lobbiest...).
I am on LDP (3mg low dose prednisone) daily. In addition, I am on 5mg methotrexate injections once weekly. I was not given either as a cure for Sjogren's....or arthritis. I throw that in as the rheumy started the methotrexate as much for arthritis as much as SjS. The Metho was miraculous. I had avoided it for nearly two years. I wish I hadn't. I have had a glitch as I have had a violent gastric disturbance which lasted about 10 days. In the midst of that attack, I had to do lab work for the metho + rheumy visit. She took me off of it for 3 to 4 weeks as I had lost 11 pounds and needed to see my gastro to determine etiology. It's been two weeks off of it--and I'm beginning to hurt again.
These drugs help me walk, function, move, stand up, mop, run the vacuum, stay moving...or at least awake all day. Period. Because I am awaiting a hip replacement, I am afraid to walk outside of PT twice weekly. I mean walk for a distance. I am 76 and my immediate problems have to do with old age. The SjS made me feel old before I was!! It is difficult to differentiate now! I do believe my rheumy does a balancing act in treating the conditions. btw: I have used the term "arthritis"--I do have OA (not RA) but my rheumy wanted to treat me (I mean first mention of methotrexate nearly two years ago) for psoriatic arthritis. I have a milder form of psoriasis than plaque psoriasis. She says it can all result in PA. Also, my break outs are practically nil since I was put on LDP. That's nearly 4 years ago. I must say, I believe she was spot on. The relief was incredible---for ME. And one more little fact: there is NO test to determine psoriatic arthritis. If you've been given the psoriasis test (much deeper cylindrical removal of tissue from thigh area) you will believe its outcome. She did too. So I have to believe it as well.
Once again, I never considered those drugs as cures for SjS. I consider them treatments for the body the disease causes. I do NOT depend on those drugs to treat my oral cavity nor my eyes. Those symptoms are a result of the specific glands associated with them: salivary and lacrimal. One must use said drugs for those areas and not depend on arthritis drugs or immunosuppressants. The disease is systemic. The disease causes the moisture producing areas to be attacked. Thus, the lacrimal and salivary damage, irritation, etc---depending on how much damage yours have due to SjS.
The studies above continue to have the fundamental problem with SjS studies: Lack of representative subjects. If we could go to one place for the same test, we might get some significant results. Unfortunately, we can't.
ccc
The problem with studies done on SS is that they usually focus on the the question of:
"Do these medications (immunosuppresants) aid in sicca symptoms?"
Unfortunately, they usually don't do much for the sicca for some reason.
Perhaps because the moisture glands are already damaged by the time we get around to the immunosuppresants.
However, when SS goes systemic and affects more than the moisture glands then I would say these
meds have the potential (depending how each indiviaul reacts to it) to slow the systemic progression.
This has been proven in other AI's such as RA.
Quote from: cccourt1942 on June 03, 2018, 07:57:37 AM
One must use said drugs for those areas and not depend on arthritis drugs or immunosuppressants. The disease is systemic. The disease causes the moisture producing areas to be attacked. Thus, the lacrimal and salivary damage, irritation, etc---depending on how much damage yours have due to SjS.
For what it's worth, Rituximab did remarkably improve my saliva quantity and quality... I even stopped taking Cevemelline. I would say I have relied on it heavily...
There are a lot of published studies discussing the reasons why this happens; namely stopping the production and circulation of CD19/20 B-cell lymphocytes, which typically proceed to infiltrate the salivary units and glands causing the dryness symptoms.
Hi markt
Since how long have you been taking rituximab?
How frequently it needs to be taken?
Does it slow down disease progression?
Does it prevent neurological damages?
After taking this is body able to repair nerve damage, lacrymal, parotid gland damages?
Cost of each rituximab session?
Thanks
Quote from: happylife on June 04, 2018, 08:49:08 AM
Hi markt
Since how long have you been taking rituximab? February 2018, I am falling due for my second set of infusions.
How frequently it needs to be taken? 04-6 months, depending on the individual and labs (i.e. how quickly the B-Cell recovery begins).
Does it slow down disease progression? I am not qualified to answer that. I can tell you I have only had Sicca symptoms since disease onset in August of 2017, and these have been mediated to a large degree by rituximab... so no new surprises.
Does it prevent neurological damages? Again, not qualified to answer, just being honest. The theory is, damage is slowed or halted because of the profound B-cell depletion, which for Sjogrens, B-Cell lymphocytes are a key actor... taking them out of the picture until the innate immune system recovers.
After taking this is body able to repair nerve damage, lacrymal, parotid gland damages? Yes, to a degree... there are studies published by ACR denoting the reduction and in some cases, disappearance, of germinal centers and lymphocytic foci in salivary glands/units that are associated with Sjogrens pathogenesis. It was emphasized that this is especially apparent in people that have shorter lengths of time since disease activity. But to answer your question... they body has many healing (or adapting) mechanisms (once inflammatory processes are removed from the picture). A good example is the regenerative capability of the spleen. But more to your point, there are trials for the use of progenitor cells to regenerate lachrymal tissue and function. Or just Google lachrymal gland regeneration and see "what's out there." Until then, I will use scleral lenses/contacts, etc. as needed and wait for CFZ533 or VAY736 to become licensed and made commercially available, in maybe 3-5 years.
Cost of each rituximab session? In the US, with Blue Cross Fed insurance, it costs me 3,200 per set of infusions (taking it off label, as I do not have RA and Sjogrens is not an accepted diagnosis). The total charges submitted to my insurer were 22K and change per session (this is the Rate Johns Hopkins had negotiated with BC-BS in Maryland, rates negotiated by insurers vary by State.) My max out of pocket deductible for the year is 5K, which has been met doing this treatment and the rest is at no cost to me. This is partly why it is used infrequently, sometimes others can manage it without well enough... and the providers don't have to worry about being reimbursed by the insidious insurers... so they just let people go on as they are without telling them there is something that can help, to a degree.
Thanks
markt- Has Rituximab helped your eye dryness any?
Are you seropositive for SS?
Hi Sharon,
It may have helped a little bit, but not to a level that I noticed objectively. If you were to ask my Ophthalmologist, my Ocular Staining Scores and Blepharitis have defiantly improved. My skin and facial pores that make lipids also improved. But going back to the eyes, I don't know that it translated into feeling and functioning comfortably. They still feel abnormally dry, to the point of requiring intervention beyond Restasis and ointments/drops (occasional use of contacts or scleral lenses).
I will also say that while Rituximab helped, it may also have attributed to new problems. I had recurring tongue coating (sort of thrush like) and occasional tongue sores... probably due inadequate or compromised levels of immunoglobulin's and lymphocytes in my saliva and mucosal linings. I am not entirely sure this is attributable to the medication, but this symptom has actually waned as the useful life of the drug in my system has diminished. Every time I did a round of Fluconazole, it subsided.
I am Sero-negative for the Rho/La Antibodies. I did have an elevated ANA titre and RF just barely within normal range. I had other Antibodies associated with Sjogrens though that were way out of range in the Sjo Panel that was ordered when this all started. It was Anti Salivary Gland Protein 1 (SP1) and carbonic anhydrase CA-6 antibodies in particular. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4031912/ (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4031912/)
The article above notes that it's not that sero-negative folks have nothing attributable to "actually having Sjogrens" going on in our serum, its just that we just present different antibodies related to the disease process than Rho/La.... which may or may not develop later on as well.
Read this: https://arthritis-research.biomedcentral.com/articles/10.1186/ar4359 (https://arthritis-research.biomedcentral.com/articles/10.1186/ar4359)
QuoteIn addition to the effect on MALT lymphoma, B cell depletion by rituximab may also attenuate the activity of SS. This case report is the first to describe the effect of rituximab on histological and sialometric/chemical characteristics of SS. The efficacy of rituximab in the treatment of SS warrants further investigation
QuoteIn our study, disease activity assessed by the ESSDAI appeared to be significantly reduced from baseline, starting from week 24 in both groups, but RTX was superior to DMARDs for improving the ESSDAI. This datum was partially due to a rapid and consistent score reduction of constitutional, lymphadenopathy, glandular, articular and cutaneous domains.
QuoteConcerning dryness, the RTX treatment group progressively improved from week 12 until the end of the study; on the contrary, in the DMARD treatment group we observed a slight improvement from week 12 that plateaued for the following period, and these data were confirmed by validated measures of salivary and lacrimal gland function
.
QuoteThe parotid gland biopsy after treatment showed no signs of MALT lymphoma by morphological and molecular analysis. Also, a regression was noted in the histopathological characteristics of SS. There was a decrease of the lymphoid infiltrate, now mainly consisting of T cells, with recovery of salivary gland tissue morphology.
.
(http://ard.bmj.com/content/annrheumdis/64/6/958/F1.large.jpg?width=800&height=600&carousel=1)
(A) Immunohistochemical staining for IgA positive plasma cells in parotid gland biopsy specimen before treatment, showing a few IgA positive plasma cells (arrow) and a massive infiltrate with a few ducts (magnification ?200). (B) Immunohistochemical staining for IgA positive plasma cells in parotid gland biopsy specimen
after rituximab treatment, showing less infiltrate and more salivary gland ducts, with a relative increase of IgA positive plasma cells (arrows) (magnification ?200).
and this: http://ard.bmj.com/content/64/6/958 (http://ard.bmj.com/content/64/6/958)
Treatment Guidelines for Rheumatologic Manifestations of Sjögren's Syndrome: Use of Biologic Agents, Management of Fatigue, and Inflammatory Musculoskeletal Pain https://onlinelibrary.wiley.com/doi/abs/10.1002/acr.22968
I am told that Imuran is supposed to help slow progression. Some of the books about SjS and some docs, along with the SjS Foundation, say that progression is typically (not always of course) slow and that people with SjS will often die of other diseases or old age v. from SjS.
markt- It's good to hear how Rituximab affects someone with Seronegative SS as all the research has been done on only Seropositive SS. Amazing it's helped you so much in such short a time. Probably because you began shortly after you noticed symptoms.
I am still wondering if I would be better off on Rituximab rather than on the Orencia I'm taking.
Orencia has helped much with the wretched pain I was experiencing but my sicca symptoms have continued to progress.
Quote from: Sharon on June 06, 2018, 04:13:42 PM
markt- It's good to hear how Rituximab affects someone with Seronegative SS as all the research has been done on only Seropositive SS. Amazing it's helped you so much in such short a time. Probably because you began shortly after you noticed symptoms.
I am still wondering if I would be better off on Rituximab rather than on the Orencia I'm taking.
Orencia has helped much with the wretched pain I was experiencing but my sicca symptoms have continued to progress.
Hi Sharon,
I elected to try it because of articles such as that... and because of the anecdotal experiences of others that I have come across (advice from actual patients who actually have this disease is gold) and secondly because I really respected my Rheumatologist/Neurologist; I felt a sense of trust with him and that he was really leaving nothing on the table in an effort to get me well and able to raise my kids.
I am just trying to leave some good info on here for folks to fall back on and consider. I had a hard time finding good information from patients (with regards to RTX application in Sjogrens). The stuff some people wrote demonstrated poor grammar, lack of knowledge, technical content, etc. and just did not instill a lot of faith in someone like me. So hopefully, what I share serves others well.
Likewise, I wonder if Orencia could possibly help me in different ways due to it's different mechanism of action. Or even Tocilizumab (another commercially licensed and available RA biologic that has demonstrated efficacy in Sjogrens, which is currently progressing through trials for Sjogrens).
Who benefits from what drug is still coming to light, as novel biomarkers are being established and translated into actionable care plans for different Sjogrens patient sub-sets. (A focus for this decade of Rheumatologists treating Sjogrens).
Hi markt, I definitely believe in the importance of sharing your experience and any information you have on forums like this one. It truly is invaluable.
I too have been following the latest study on Tocilizumab. I contacted the head researcher last year and was told results should become available in the year 2019. Our best bet for now is to try to find relief with pre-existing medications that have shown promise in SS patients which are the 3 we have mentioned.
As far as testing for sub-sets goes, have you ever been tested for the APCA autoantibody?
Quote from: Sharon on June 07, 2018, 11:51:18 AM
Hi markt, I definitely believe in the importance of sharing your experience and any information you have on forums like this one. It truly is invaluable.
I too have been following the latest study on Tocilizumab. I contacted the head researcher last year and was told results should become available in the year 2019. Our best bet for now is to try to find relief with pre-existing medications that have shown promise in SS patients which are the 3 we have mentioned.
As far as testing for sub-sets goes, have you ever been tested for the APCA autoantibody?
Hi Sharon, Tocilizumab is available at present for RA. Some folks here may be able to try it off label, or Orencia for that matter, if their Rheum is on board.
I wonder if your Rheum would entertain trying Tocilizumab instead of Orencia to see if it better helps you to manage your RA and Sjogrens?
Beyond FDA Expanded Access stuff making peoples heads explode, this is a discussion item I have for my next few appointments.
Exactly, the 3 biological meds currently available which have been or are being researched (to my knowledge) are: Rituximab, Abatacept (Orencia) and Tocilizumab.
I believe I would be able to convince my rheumy to let me give another biological a try,
however it would be quite a risk for me to make the switch. The Orencia saved my joints and I may not respond as well to another biological. It also took me many months of serious side effects to finally adapt to the Orencia, so going through that again with another med that may not even work as well (or at all) causes me much pause. I also find that the longer I'm on the Orencia the better my joints and digestive issues get.
I would be interested in hearing your rheumy's take on this issue of drug choice.