Biologics Anyone?

General
1

I'm just wondering. People with PsA or RA get treated with DMARDS and Biologics...These are strong, potentially lethal drugs. And I have not heard mention of them on this board. Is Sjogrens ever treated with these meds?

I was taking Actemra.....a drug given by IV Infusions every four weeks. but then my liver functions started shooting up too high and then had to take me off of it. I was also taking Otrexup which is a super charged form of Methotrexate....and that was an Injection I gave to myself every week. Now the doctor has swiitched me to Otezla which is a pill taken twice a day which has really horrible side effects....Nausea and vomiting...it is common for people to lost 20% of their body weight (which really is ok with me but doing it by vomiting doesn;t sound fun.

I just wondered if any of you are taking these drugs.

2

Hi Quadosh,

I took Enbrel for about 2 years, I felt it was very effective for the Psoriatic Arthritis. I had no side effects from it until I started getting recurrent infections, mostly UTIs. That said, I discontinued it the first of the year, and am beginning to suspect this is returning again, so now I suspect it could be Internal Cystitis, or even a bacteria that you just never get rid of. I keep thinking of when my mom broke her hip, I was constantly in the hospital and nursing home while on Enbrel, so I was literally wide open to trouble, as you just cannot go there and not use the toilets.

One good thing happened, I last saw my Internist at his wife's office, and my records are not at this location. He gave me a form of Penicillin. I have had allergic reactions to this in the past, but the fact that I cannot take anything in the Levoquin/Cipro family due to it rupturing the achilles tendon in both legs. I talked with the pharmacist, and decided to try it. She filled it knowing I had Epipens at home for bee stings if I needed them. BUT I had no reaction! So hopefully this antibiotic is back on the table for me.

I'm not sure if the Enbrel caused the increased fatigue, or it was the constant infections, so I guess I should put a Urology appointment on my to do list. And believe me, there is always a list!

I have friends on the PsA site of Ben's Friends who have the IV infusions and some tolerate it well, and some have also had elevated liver test results. My Rheumatologist explained to me that the NSAIDS we take for pain and inflammation can contribute to this, and urged me NOT to exceed the recommended daily allowances of this, no matter if it's a prescription or OTC.

purplebutterfly just started infusions for Lupus, and they warned her that the first time could make her sick. So though it sounds like a pretty tough side effect to deal with, if it subsides after the first infusion, I think it should be worth a try, but that choice has to be yours.

Please understand, I feel that I need to be ever mindful NOT to discourage anyone from taking any medication or supplement that is recommended by a licensed medical professional, as it may be lifesaving for them.

3

Good morning from sunny & hot California! I personally, from my own personal experience will say to all to please weigh out the potential benefits versus the almost guaranteed side effects. Most autoammune prescribed therapies are not intended too cure, at best, maybe help with symptoms (maybe). The science behind the medicines has yet to be proven as beneficial, but because insurances are willing to allow them, “we get it”. And I mean that in a bad way. Again this is my personal opinion based on my personal experiences & internet research, which I bet is more current then my my rhumies.

4

I've already been on Humira, Enbrel and Actemra. And MTX and Otrexup...Now the current (pending ) biologic is a pill but has some very nasty side effects. Problem is I have RA as well as PsA and SS. My joints are RAPIDLY degenerating....I have three joints now waiting on replacements. ....and I've already had both hips and one shoulder done. It's either risk a biologic or start shopping for a nursing home.

5

BTW, I'm currently waiting for a Plaquinil script to arrive in the mail.

When I discontinued the Enbrel, I fully expected all of the symptoms of the Psoriatic Arthritis to skyrocket, and they did, however, I was totally unprepared for how much the Sjogren's spiked! It was horrendous, I felt like I was burned with a torch! My Rheumatologist was amazed to hear this, and made notes, as it is not a recommended med for Sjogren's. When he hears something like this, he jumps up, goes straight to his computer and records it, then returns.

I always have a list with me, and he never leaves until we go over ALL of it!

6

I am very glad to see that alternative Doctors, meds, and treatments are becoming more available to us all, and am ever hopeful that all medical insurances will include them in our options for care. I fully realize that not everyone can tolerate traditional meds, but urge you all that a licensed professional is always the way to go!

7

Yes, I really do understand, and that is why I will never discourage anyone from taking the meds as they actually do slow the progression of the disease, at least this is my personal experience.. When you have two types of autoimmune arthritis hungrily eating at your joints, you have to use aggressive treatment sometimes or you may totally lose your ability to move at all!



Qadosh2him said:

I've already been on Humira, Enbrel and Actemra. And MTX and Otrexup...Now the current (pending ) biologic is a pill but has some very nasty side effects. Problem is I have RA as well as PsA and SS. My joints are RAPIDLY degenerating....I have three joints now waiting on replacements. ....and I've already had both hips and one shoulder done. It's either risk a biologic or start shopping for a nursing home.

8

Did any of these meds help at all? Some help in the beginning, and then after a while, for some reason, are no longer effective, so you have to move on to the next one.

9

To the best of my knowledge there are no "biologics" that have any benefit for SS - all of the trials that I have evaluated have failed to give any benefit at all in the primary symptoms of SS.

Similarly Plaquenil has no proven benefit in SS and a recent trial shows it has no more effect than a placebo.

The only area these drugs may have benefit is in some of the diverse symptoms of SS in those individuals who have RA. Lupus Scleroderma symptoms joint pain or muscle pain.

This is why I am so frustrated the truth is there is NO effective treatment for SS and certainly no Cure. There is sod all research being done on SS worldwide and medics still know damn all about it and those who think they know say it is a mild non life threatening nuisance disease!!!!!!!

Fact in the largest ever study carried out at Birmingham university UK over 25 years follow up found that the life expectancy of SS patients fom disease onset was 1/2 that of "normal" controls. So it's clearly not life threatening!

It is one of the most debilitating and life destroying disease out yet it has a lower research priority than any other disease that affects such a large number of people world wide. The % of people with SS is pretty consistent across all countries.

This why I get so frustrated and keep asking the good folks here to shout out, fight and demand from your politicians and medics fair play for SS in terms of research and medical intervention -It's not enough to compare symptoms and support each other we need to carry the fight out to the ignorant world = that's how cancer, heart disease and dementia get such high funding and research. They fight and have effective charities. In the UK on prime TV we see adverts for heart charities, cancer charities and dementia charities daily and with sponsored national status events like bike rides marathons etc.

What do we get for any AI disease? Sod all!!!!!!!!!!!!!!!!!!!!!!! The British SS charity even asks that I as a sufferer pay $30 p.a. just to be able to post on their forum!

OK Rant over but please guys to use the horrible jargon get more pro active - your doctors are largely useless and belong in the kingdom of the blind leading the blind but they make a very good living out of it. That's why I get frustrated when I see the term" rheumy" - sounds too much like "roomie" to me and makes them sound cute and cuddly - well if they are I've never met one. Tey're not even rheumatologists as "ology" suggests study and research - I've never seen a research paper by a rtologist except for epidemiology and that's so they can climb up the academic scales and make professor (you have to publish research to make prof. My latest apology for a rtologistsiad he didn't do research or even read research papers becuase he was a 'clinician". I said oh yes and what surgery do you do and what treatments do you offer that work for SS RA Lupus - he went very quiet ... I said the answer is none how can you call yourself a clinician and what satisfaction do you get from doing your job? Again he was very quiet but did admit tat I was right.

The only way SS will ever get any attention is if all SS sufferers make a noise outside of our own forums and get media coverage.

10

I was blessed for several years to be seen by a rheumatologist that was so wonderful and kind, that "Rheumy" did fit him. My doc now also is a very sweet man. The prior doc did a lot of research and taught at NYU (New York University) in Manhattan, training new r'tologists. He was the only doc (he and the one I have now) who were willing to take on the risks of biologics and give them to me despite the risks....because my life is a living hell. And he knew it. I have RA, PsA and SS. My hands are gnarled and swollen and very painful ...I've had both hips replaceed and a shoulder. The other shoulder and both elbows also need replacement. My feet are a mess and I will likely need my ankles fused. My spine is the worst part. I have psoriatic spondylitis and DDD. My facets in my spine are all closed due the disease and are impinging on the nerve roots. Biologics are my only hope to make life a little better for me. It is hard to find a doc who will prescribe them because I've had severe life threatening infections before I even was on biologics. And when I was on Enbrel I had pneumonia and also endocarditis (an infected heart valve). I would much rather die from an infection soon than live a long life of misery.You are right SS needs to have a cure found. However there are other AID's that are harder to bear and more dangerous....and they do not get much attention either Kelly Young finally started an Association for RA and is working to bring it to public attention and to move the government in the USA to fund research and to support those suffering with this disease. i know I do not have very much longer to live because of all these diseases...and that's okay. The pain I am in exceeds even the highest possible doses of morphine....even with that I can barely bear it. So I will not be sad to come to an end to this life.

11

I am so very sorry about your suffering and am pleased that you found a decent medic and hope that your pain can be eased and fully understand and share much of your last sentiment.

I would however disagree that there are worse and more dangerous AI than SS. SS can and frequently does encompass multiple other AI indeed it is the only overarching condition that can have so many other manifestations. Also the research paper I referred to is genuine and it clealry shows that average life expectancy of SS sufferers if halved from time of disease onset and not only due to lymphoma but lung, heart, kidney neuro failures but of course the data on the death certificate says heart attack MI or pneumonia or carcinoma of liver etc not the true cause SS so the medics as ever get false stats that say SS is not life threatening I can post multiple articles and papers that show it is but most medics never read research papers because "they are too busy".

My dentist and GP who are excellent but know very little about SS other than "it's a womens disease causes dryness and is "minor", admit they never read research once they leave med school they "rely on their professional bodies to read the research and tell them the highlights of it once it becomes dogma"

I have met the 2 "leading SS experts " in the UK both profs and they are clueless and out of date they are even organising a trial of rituximab plus steroid a protocol that has alreadt been tested and failed in France and USA this sums up why I have my opinions. There is no one else in the UK to turn to every other Rtologist defers to these two and questions nothing!

I do so wish I could help you but sadly my knowledge does not include effective pain management and as I said there are no effective treatments for AI disease.
The main reason is that the drugs that are being used were never "designed" for AI they are all spin off from cancer treatments that downregulate the immune system globally or to a large extent and they are not targetted at the sub sets of the immune system implicated in the 130 or so AI diseases currnetly recognised and many more yet to realised that they are forms of AI (many forms of CHD and diabetes for example). It is like using an atomic bomb to kill a weed in your garden!

12

yes, I see your point.

And with SS it is hard to know what came first: the chicken or the egg? And SS is so subtle, you can have it for years and not know it. Just take a drink or suck a candy to help that dry mouth, never suspecting that it is the fin of the shark under the water. And too, I do not know from where comes my fatigue....RA and PsA have fatigue also....and brain fog as well....OH BTW ladies from the chat yesterday: I remembered the name of the herbal blend to aid in clarity of mind..it is called "Cogni-Tea" and it was invented for sale in this herbalist's health food store. I do not know if it is available elsewhere. You can Google it and see. I do believe that Yogi Teas make something similar.

As I was saying, the symptoms are inseparable. So I cannot downplay SS as it may be behind some of what i am experiencing. Because I was diagnosed with PsA first I tend to blame that for most of my pain....However RA is behind a lot of it I am sure. And SS? who knows.

13

I think quite a few on here would disagree about SS being subtle. Most of us have been hit like a sledghammer hard and fast and totally debilitated and often unable to cope with "normal" daily tasks. Many have been be bound for periods of time.

I know of 2 SS sufferers personally who might come into the more subtle category but over time they have deteriorated and now have severe symptoms .

If you have SS then I wouldn't be surprised if it is responsible for many of your symptoms but it could be RA/PSA unfortunately whatever others say there is no single 100% diagnostic test for SS and yes I have spoken directly to the people pushing the SJO test IMMCO. I am trying to get a test kit sent to the UK so I can try it out but it is proving difficult as they have a sole marketing agreement with another company and do not sell outside of USA and the samples need to be kept chilled before testing.

"A study published in November 2012 in the Journal of the American Academy of Dermatology concluded that people with psoriasis are nearly twice as likely as people without psoriasis to develop additional autoimmune diseases. If you have psoriasis and psoriatic arthritis, your risk for an additional autoimmune disease increases even more. The study concluded that there may be a genetic or environmental cause that is shared across the spectrum of autoimmune diseases. Of the 21 autoimmune diseases studied, 17 were found to be linked to psoriasis, including alopecia areata, celiac disease, scleroderma, lupus, and Sjogren’s syndrome. The autoimmune disease most strongly associated with psoriasis was rheumatoid arthritis"

14

Here is their main page on SS http://www.immco.com/sjogrens-syndrome/default.aspx

They claim about 85% specificity and sensitivity so it appears to be better but not absolute.

15

yes, I have psoriasis as well . thank the Lord I do not have a really disfiguring case of it. My PsA is much more destructive than is the psoriasis....but that can always change also. Yes, as I said, I had full blown symptoms long before I was diagnosed with SS or even knew really what it was. All of my symptoms were attributed to PsA....so when the DX came of SS nothing much really changed beyond what I'd had for the 6 years prior. So did I have SS back then? who knows.

16

Wow..I turned my back for a second and so much went on with this conversation. LOL… Asseybish… I read that study on Plaquenil too. Do you know if there was any follow-up or further studies done? One of the things that caught my attention with it is that they only followed people for the first 6 months they were on it. Every doc I've talked to says it takes that long to build up in the system so I wonder if the results were skewed. (my only experience with research is Psych but even there, we see issues like that).

And I totally agree that SS is not always subtle. Mine was misdiagnosed for a long time but the symptoms were not quiet even then. They are just plain weird some days now, but never quiet. I have heard that SS is not life threatening but the complications from it don't count in that equation. (not be be morbid, I just don't think it is taken seriously enough).

Q, I am really so sorry you are suffering so much. You are a fighter though and totally inspiring in that. We just have to keep holding on. And thanks for the name of the tea. I will be googling it.

17

Enjoy life nice to see you back!

The study http://jama.jamanetwork.com/article.aspx?articleid=1887760

measured otcomes at 12, 24 and 48 weeks which should be plenty of time for Plaquenil to have an effect.

The auhor says

Dr. Gottenberg said in an interview with Medscape Medical News.

"We lacked a randomized controlled trial of [hydoxychloroquine]. We all use this drug very often, and sometimes it works for some of our patients. We wanted to design a study to demonstrate it was working. The result was negative, but we can imagine in some subsets of patients this drug can still work," continued Dr. Gottenberg.

Patients with synovitis or purpura associated with high serum levels of immunoglobulin G may be most likely to benefit from treatment with hydroxychloroquine, he said. The investigators were unable to determine a skin benefit for hydroxychloroquine, however, because only 3 study patients had purpura, and all 3 were in the placebo group, Dr. Gottenberg noted.

"This is an important paper," commented Neil I. Stahl, MD, a member of the Medical & Scientific Advisory Board of the Sjögren's Syndrome Foundation, who treats patients with Sjögren's syndrome at Arthritis & Rheumatic Disease Associates, PC, in Burke, Virginia.

There are earlier studies that show very mixed results. Some saying no effect and some a slight effect.

I think as the author says it depends on the symptoms. It seems to me that for some people with high complement levels and jpint/muscle problems it may help. BUT it is not the panacea that the rheumatologists suggest when they and it out like sweets as the first (and often only) treatment for SS. Truth is there is no treatment but 2or 3 drugs may help sympyomatically for some people.

Stats is stats no matter what - and the profession that is worst at stats is ....?

Medics, totally clueless, my time at Sheffield med school really brought this home. I was lucky my prof was an ex mathematician who converted to bilogical/medical physics and he tore many published and accepted papers apart becuase that stats were incorrect incorrect test for the study incorrect analysis etc. Even worse quite a few papers have correct stats but the conclusions stated are not consistent with the actual results!!!!!!!!!!!!!!

The worst was that the whole UK NHS blood test profiling at that time was wrong because the test, sample size were biased and after new trials the data used by medics to analyse blood tests had to be changed!

18

Here is a paper supporting my comments about SS causing other diseases that the medics do not recognise so are not giving SS as cause of death but the organ failure.

http://www.medscape.com/viewarticle/826765

As you said one doesn't like to be morbid and I did write to SK about this post becuase I have held off posting the truth about SS as it doesn't make happy reading and is actaully very depressing BUT I believe in the truth no matter and get very angry and upset when I see patients misled and running around looking for snake oils when there just aren't any and the drugs being pushed are highly toxic and NOT designed for AI as I said they are all anti cancer drugs where clueless R'tologists have gone Hmn we have patients with a "hyperactive" immune system these drugs suppress the immune system lets try them simple peeps!The clueless don't understand the complexity of the immune system and exactly which parts are involved. The cancer guys (oncologists) understand better and know current treatments are atom bombs and are thye are still looking for hand grenades. R'tologists aren't looking they just piggy back others research.

The results for AI will come (if they come) from cell biologists and immunologists and geneticists.

I have posted elsewhere I would be happy to have an open debate with a rheumatologist especially the so called top 2 UK SS profs and see just how well they defend their position!

19

I am counting my blessings right about now for a good rheumy (I am just too lazy to type the whole word over and over). He has told me that Plaquenil is only a start point for SS and not an "end all, be all". He said that for Lupus it can be a life saver but SS it is a safe place to start. And he did say some people have better turnout than others. He also said that as time goes on and different things emerge, we can always change meds to something more appropriate to what is happening. Personally, I've been on Plaquenil for almost 3 months, which is very early in treatment for this stuff. I have seen a real difference in the fatigue. Its still present but I don't pass out cold like I used to. I would lose hours at a time, frequently. The tired is ever present but much more manageable. It hasn't had much affect on joint pain but the flair ups are shorter in duration. Who knows. I am just happy to have any positive change.

Additionally, he is not into starting any med we don't absolutely need as he says the side effects are brutal and he doesn't want to subject anyone to things unless he has to. When I asked about adjusting diets, he was all for it and gave me the overview of what works most globally and then what has worked for some clients specifically. I have been grateful for someone who openly admits that doctors do not know it all and we should totally trust our feeling about things being wrong. Hang in there…there are a few out there. I think they will be the ones to make a difference.

20

I'm really glad, Enjoy, that you have found a good rheumy. I use "rheumy" also as an abbreviation but I guess if I had one I hated I would not use that term.

I tried plaquenil and it did nothing for me. The only things that have helped me are the biologics. I have been blessed not to have horrible side effects. (I threw up once or twice on Enbrel) But the one Im starting tomorrow may be a tough one to endure side effect-wise. We shall see.