I have just been diagnosed with ss last week. My main complaint is dry mouth and many digestive issues - gerd, gastritis, gastroparesis. I have none of the aches and pains that many others experience. My doctor wants to start methotrexate as soon as all my xrays and lab results are back. When I questioned him about the med, he said it will help the inflamation. I reminded him, that I don’t really have inflamation and he said the biopsy show the saliva glands are inflamed. I want to know if others were prescribed methotrexate without having pain. Also, the pros and cons of taking it. Just Reading about it is scary. I am more interested in a more natural, holistic approach. I also wonder how this disease progresses and how quickly, do some people have aches and pains, while others have digestive issues, and others brain fog, etc. or do we all end up with all of it eventually.
There is lots of great information available about methotrexate, since it’s a fairly old drug. I know this site http://rawarrior.com/methotrexate-and-rheumatoid-arthritis/ is about RA, but it has a lot of good info about MTX.
I have psoriatic arthritis and Sjogren’s, so I did do a trial run on MTX. It didn’t work for me personally, but it works well for many many people.
Thank you. I had been on quite a few websites…that one was a good one. That article, as well as most articles, discuss the RA symptoms. I am not having any type of muscle or joint pain and am not sure why I need it. I also was hoping to talk with real people who were/ are on it to get a up close and personal review. Also, curious if it is something you take long term or for a specific time period. Thanks again for the response.
I've had SS for 33 years and was just prescribed methotrexate because of inflammation without the RA pain. I took it for two weeks and it made my muscles very weak so I stopped it. It took me 32 years to get to the point I need SS meds. Still have not started one yet, am taking vit. and herbs right now, but I'm waiting for some more lab work to come back to see what the doc prescribes next. SS is a horrible disease with so many symptoms, I didn't know how great I had it for so many years.
Love your name - Sunshine. Having the hope, Drygirl
Hi Sunshine,
If you have been prescribed Methotrexate, you are not in the right place for natural treatments, you simply will not find them with a Doctor of Medicine. With autoimmune disease, your immune system goes into a state of hyper overdrive, and most 'natural remedies and supposed miracle supplements' will only boost it more, causing more healthy tissue to be attacked.
In my opinion, based on personal experience as a patient, the only healthcare professional that I would begin to trust anywhere near an MD with a systemic autoimmune disease (meaning it attacks every single cell of the body, even with no symptoms of pain) would be a MASTER Acupuncturist/Herbalist. You will most likely need to be treated by them 3-4 times a week, and in most cases the expense is entirely out of pocket. If they can get the inflammation under control, the frequency of the visits may lessen in time. I say master as nearly everyone these days from DCs to PTs are taught enough about acupuncture to be dangerous.
My best experience was with a team of Chinese and Vietnamese acupuncturists who had been Doctors in the country of their birth. Acupuncture and herbs are part of their culture and their understanding of this ancient practice is the very best. If they are true masters, they will know herbs like no other, as herbs have dangers and side effects just like medicines. The herbs they use are not like the watered down more palatable versions of ones bought off the shelf, they are STRONG and need to be handled with care, skill, knowledge, and credentials. That said, the acupuncturist will NOT be able to order some of the tests that you may need to have so you will need to find an MD willing to work with them, and take the back seat on your treatment.
Other members may have differing opinions on this med, but as my Rheumatologist explained to me, this is usually the first med they start with, as the less expensive ones are required by the insurance companies, should they not be well tolerated or effective, they move on to the more expensive meds.
Hope this helps!
Wishing you well,
SK
The presence interleukin 6 (IL6), hyaluronic acid (HA), and high soluble interleukin 2 receptor (sIL2R) concentrations in the saliva and serum which is the source of inflammation of the salivary glands is very concerning. You are very luck to have a doctor who is aware of the ramifications. The next step in the progression of your disease when you have that kind of inflammation is for it to go extraglandular. That is when the really BAD STUFF happens. When you get pain, its too late, the damage has been done and chance of the situation reversing are slim to none.
MTX methotrexate is a much maligned medication as is hydroxychloroquine (Plaquenil) in the treatment.pf SS. Patients expect it to stop or eliminate symptoms. Its great when they do BUT their main purpose is as a DMARD (Disease Modifying Antirheumatic Drug) They change the course or progression of the disease. While Plaquenil is the most studied and has a very high rate of success, I prefer MTX as the starting drug. (more later)
Too few docs understand SS as primary disease and underestimate its effect on the body. IMO everyone with serologically confirmed SS should be on some form of DMARD, and be monitored regularly to see its effects on salivary and serum inflammatory markers. while this study:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1752865/pdf/v058p00253.pdf
has been confirmed by subsequent studies and is a bit older it does a beautiful job of explaining the science and explaining why long term sufferers get worse and stay that way.
I like MTX because it has been studied to death and when monitored is less harmful than NSAIDS should your routine blood work show a problem, stopping or adjusting dosage fixes it pretty quickly. Millions of people who didn't read on the internet its a problem drug use it daily with great effect. You need to plan when you take it (couple hours before bed time is best) You need to take your folic acid and B vitamins as it depletes both, and you need to drink more water than you think possible. I recommend that you inject it. (my granddaughter injects herself as do the JIA kids age 5 and up I work with) You get more bang for the buck and most of the stomach upset goes away. For most the side effects if any go away in a month or two. All in all a pretty good trade of for likely stopping the progression of the disease. As with any serious medication that effects your body functions you MUST exercise daily. (You should with any autoimmune anyway)
Plaquenil although studied more for SS does have more side effects and the more serious tend to hang on. Its a great option if the MTX doesn't work.
You can do tons of things to make yourself feel better and frankly I don't care if someone paints themselves purple dances under a full moon while licking frogs. Thats all fine BUT at this point the only way we have of stopping the progression of the disease and PREVENT some very serious manifestations is with the the DMARD and a few biological medicines. What matters is what they do to the salivary and serum inflammatory markers. If they help dry eyes and dry mouths that is a bonus.
Dear Sunshine,
I know everyone is different, but I did have pain and still do, but have never taken methotrexate. I think usually you take Plaquenil, or it's generic, first. Others may have had a different experience.
I had Methotrexate 18 years ago for breast cancer. Just be careful and make sure they watch your kidneys. Mine were knocked down after that drug, but I had the maximum amt of it allowed. Generally when your immune system is knocked down, the legs get weak so that happened to me, too. I kind of only half-believe our immune system is attacking us because I've read a lot about another theory about it being a mycoplasmic attack. So I'm not knocking down my immune system anymore because I'm not convinced that's the problem. They find out new information all the time, and they just might find out these AI diseases aren't what they thought they were. But only time will tell.
Thats right MC, Plaquenil is used when the symptoms are generally just rash and/or joint pain. HOPEFULLY one never needs to go to the next step
Systemic symptoms, such as fever, broad rashes, abdominal pain, or lung or kidney problems, require treatment with corticosteroids such as prednisone (Deltasone and others) and/or immunosuppressive agents Methotrexate, Azathioprine (Imuran) ,Mucophenolate, (Cellcept) or Cyclophosphamide, (Cytoxan). There is SOME research being done and specific instances where biological agents such as Rituxin can be helpful, but these are limited to some pretty specific extraglandular situations.
Hi Sunshine,
I have both PSA and SS. I also have gastritis, gerd and gastropaersis (tons of fun). I have taken methotrexate for almost three years. I have found that if I take what the doctor orders, I can function somewhat normally. I of course have pain from the PSA and need other meds as well. I think giving it a try for a couple of weeks (maybe starting after the holidays) and see where you are.
Everything we do is to "stop" or prevent further problems down the line.
I have SS, lupus, fibro and RA, and have taken plaquenil, methotrexate and prednisone but got taken off methotrexate last week and can tell the inflammation is increasing.
My liver enzymes were high.
There is a group on this site that is natural and have gotten alot of good info.
Methotextrate didn’t work for me. One of its side effects does damage to your lungs. i was diagnosed a year ago but suspect I’ve had it all my life since working with my rheumatologist. Finding the right doctor is difficult but mine has really educated me about the seriousness of SS. I take Plaquenil which helps with the dry mouth and eyes. Prednisone doesn’t work for me any more. So I’ve tried Rituxan infusions and then have been on Humira for the last month or so. At first these drugs really helped but they don’t seem to have a lasting effect. You may have inflammation without aches & pains now but you need to be watchful of irritants and muscle/joint injuries, once you have a flare up its very difficult to get it back under control. This is why they prescribe Placquenil or Methotextrate, to help prevent a flare up or lessen its effects.
Hello, from experience I wouldn't touch that med. They tried to put me on it when I was first diagnosed with Scleroderma, and to this date I have not taken it. My friend took it and now has lung problems, caused by the med. If you have other choices go with them first. Doctors like to just prescribe, you need to be an advocate for yourself. Just my opinion. Scleroderma is part of the Sogrens, as I have many of the same symptons, but I also have skin involved. I don't have pain, thank God, but I have internal issues. I take cellcept for my osteopenia arthritis. Prednisone 5mg too. Thats it for meds, but for the lungs I take revatio which is what they put people on for transplants. so far so good on both these heavy duty meds. No side effects or anything. Good luck, but do your research. Carol
Sadly, I also know of a woman who was put on Methotrexate for her RA. She did wonderfully well on it -- however, she went into kidney failure and died after being on it for too long -- so if you are on it, please MAKE SURE (like Northerngram said -- be your own advocate) that MD runs regular blood work showing kidney function -- and keep a copy and watch it yourself. Know your GFR so you can monitor it to see if the kidneys are staying the same or getting worse. It was in my chemo 18 years ago and knocked my kidneys down which is really hard now since SS is going after my kidneys. But -- not to tell all the bad news -- I have a friend with RA also who was on it for awhile, and her kidneys are healthy. So just make sure you watch the blood work.
Northerngram said:
Hello, from experience I wouldn't touch that med. They tried to put me on it when I was first diagnosed with Scleroderma, and to this date I have not taken it. My friend took it and now has lung problems, caused by the med. If you have other choices go with them first. Doctors like to just prescribe, you need to be an advocate for yourself. Just my opinion. Scleroderma is part of the Sogrens, as I have many of the same symptons, but I also have skin involved. I don't have pain, thank God, but I have internal issues. I take cellcept for my osteopenia arthritis. Prednisone 5mg too. Thats it for meds, but for the lungs I take revatio which is what they put people on for transplants. so far so good on both these heavy duty meds. No side effects or anything. Good luck, but do your research. Carol
Lung problem are very common with Scleroderma, and one of many reasons one treats it aggressively. I'm not sure that one can blame a medication used to treat a disease for the symptoms of the disease
A word about scleroderma and Sjogrens. I saw a post a while back directed towards someone with some shortness of breath that seemed to indicate the "lung shrinking" with scleroderma was a part of Sjogren's. It is NOT.
While the diseases are in the same chain they are "overlap diseases" One does not begat the other. there are a number of rheumatic diseases that are in the chain.. Over 20 percent of patients with systemic sclerosis and a few with localized scleroderma also have secondary Sjögren Syndrome. It is more often detected in persons with the limited form of systemic sclerosis. To avoid the fear mongering that so often happens on boards like this I also have got to say that by far MOST Patients with scleroderma have the limited CREST scleroderma and as such usually expect a favorable outlook and normal lifespan.
Patients with systemic scleroderma such as my granddaughter has as a complication of JIA have only a 60% 10 year survival rate. 60% of those deaths come from Lung problems the balance from kidney issues. While the survival rate for kidney issues is improving, the lung issues are not.
Systemic scleroderma is a very serious disease. The fight we have everyday with my granddaughter makes me very passionate for not only her but the whole group of Kids she attends "camp" with. I am very active with Arthritis Association and work the kids camps both regionally and nationally. At our local camp (about 30 kids age 6 - 18) I think there were four with kidney transplants this year. One was particularly sad in that she had donated one of her kidney 4 years ago to her sister then developed the disease herself and was needing one soon. There was also one lung transplant. Amazing kids. There wasn't a one of them by the way who wasn't taking a DMARD (such as MTX) One could learn a lot from them. I have tell you Tana (my granddaughter) wakes me up every shot day. She can hardly wait for me to draw it up for the two of us. Then we race as to who can prep shoot and finish the fastest.
These kids take VERY HEAVY meds, it was amazing how very little time was spent about "side effects" I remember an 8 year old in a break out session telling everybody to be sure and have "carrying a bucket on med days" in their 504 plan. The other kids told him to not talk about that stuff, they all knew about the side effects and were thankful for their meds. too many had to have cycled off and knew what life was like without. They wanted to talk about doing what other kids were doing and how to do it.
Thank you, EVERYONE, for all the advise and information. Boy, this will be a difficult decision. Just had my blood drawn yesterday. WithThanksgiving this week, I will be lucky to get the results by mid week. My next DR apt. is Dec. 18. I hope to continue researching and try to make the right decision. It sounds like it is such an individual thing - some people highly recommend it and others have the opposite response.
I am curious about those who have been on it:
- Was that the first medicine prescribed?
- What (if any) type of side effects did you have?
- Did the side effects go away after awhile - or did they remain throughout the treatment?
- Is this something they keep you on forever as long as your kidney/liver levels are in normal range?
- After awhile does your body get use to it and need another type of med or stronger dose, etc?
I would have like to reply individually for some of you that I had more specificquestions, but I haven't figured that out yet. I will be leaving tomorrow morning to see my 93 year old mom in Pittsburgh, and won't have much access to internet until I return home on Tuesday, Dec. 1.
Again, thank you and I look forward to any additional information any one has that will help be decide (or be more confused) It is still very new. I had done some research but feel like I know nothing after hearing from many of you.
:)
Hi Sunshine,
First you have to realize that many of us have other autoimmune diseases, if this is the case, Sjogren's is considered secondary, so that means they treat the primary, which in my case is psoriatic arthritis.
My Insurance dictated that Sulfasalazine was the first med, I took it for 3 months, no help, on to Methotrexate, no help, on to Enbrel, HUGE help. Had to discontinue after 2 years, will be given the script for Humira Dec 2, cannot wait! Though Enbrel is not suppose to be helpful for Sjogren's, but in that instance it seems that when the PsA pain and joint damage was so well controlled with Enbrel, the Sjogren's was not that bad either! It may be different with Humira, don't know yet!
My liver and kidney blood tests were never elevated or problematic, though the Rheumatologist and GP told me that the med most likely to cause problems there were the NSAIDS, and that also includes OTC Tylenol, Motrin, Excedrin, Aleve, as well as the prescription drugs of this type, he told me I was better to increase morphine than NSAIDS!
There are THOUSANDS of possible answers to your questions and may not have a single thing to do with how well you will be helped by a med or how well you are able to tolerate them.
You have to decide what kind of Doctor you want to treat you, and take their lead. They will monitor you very closely and surely you will call if you need to see them before your next appointment. It is the very best answer I can give you. What others experience really has so many differing factors, and there is no way of knowing how to predict the outcome for anyone, and then relate it to you.
Hope this makes sense to you.
Hope you have a woderful weekend. What you read about personal experienes with meds may or may not be accurate. At best, its anecdotal. In terms of the meds we commonly use from worst to best in terms of side effects and even seriousness of side effects they they rank:
NSAIDS
Prednisone
OpiateS
DMARDs (MTX, plaqunil, etc)
Biologics
Its sadly a matter of bad press for the "big meds" I'm not saying these drugs are risk free, just don't decide based on anecdotal info. The sad fact is, NSAIDS are most likley to cause serious problems. MTX has bad press because I think anyway, because when used at doses 100 - 1000 greater than we do does have side effects for all.