Hi all, I'm determined to finally begin taking meds for this condition.
After suffering for over 2 years with all this, I've finally had it.
Unfortunately, the reason I hadn't begun meds till now still exists:
The possible side effects listed for all the meds that affect the immune system really freak me out!
I've already tried Plaquenil and had a terrible allergic/neuropathy reaction
and Rituximab isn't approved for SJS in my country,
so I'm down to choosing my poison from:
Prednisone- the most harmful long-term option
Cellcept & Imuran- increasing chances for skin cancer and Lymphoma (I'm already at risk for both...)
Methorexate- Killing my chances of ever giving birth (from what the rheumy informed me)
(Correct me if I'm wrong on this please)
So, can anyone suggest a better alternative or help me make a choice? :-\
The first thing you need to do is talk with your doc about the methotrexate and getting pregnant. I am 73 years old and have taken the drug twice but I was over child bearing age so never paid any attention to that detail.
The next thing to do is to talk your self to the edge of your fear. I didn't say out of the fear but to the edge. There are none of us who take these drugs who are fearless. In fact some of us are falling down scared to death about it. The good thing is that a goodly amount of the side effects are the nausea, headache, aches, fluey symptoms, etc. Stopping the drug usually helps decrease the bad effects in short order. There are times in life when we must take a risk and just do it. If you never try them you will never know if you could have had a better life.
I have been on IVIG for 10 years and 4 different products, one of which I had allergic reaction to and another one that might have caused issues---we aren't sure but doc changed to another product. I have taken Methotrexate twice and it didn't make me sick, in fact I felt better, but I got infections. I have an immune disorder so we knew going in that I might not be able to take it due to infections. Again, I took the chance. Then I tried the Cellcept and was on that about 8 months. I quit that abruptly cause I thought it was causing issues, but chances are it was the stress of losing my hubby that precipitated all me physical problems at that time. Doc was not happy with me. I told him I was willing to give it a try again but to keep the dose a little lower.
I just finished 5 months of steroid pulse therapy which is 1000 mgm of solumedrol IV over 2 hours. This is to see if we can stop the hearing loss in my good ear. I am totally deaf in the right ear and losing hearing in the good ear. Blood works shows 2 antibodies that kill off hearing. So far haven't lost anymore hearing. Now, I was scared spiteless about doing this one. I get really wired taking high dose steroids and I was scared to death. I have taken prednisone for 10 years and in changing dosages so I have had that to deal with. That is the med that works the best.
I have myasthenia gravis and neurologist wants me on 10 mgm prednisone every other day to help in case I have a myasthenia crisis.
I also gave the Imuran 2 trys and got sick from that proving that my body can't tolerate it. Some people just can't take it.
Now in spite of all this on again off again, I feel that it has been worth it. We have sick bodies that change so much and it doesn't make sense to try a med now and then to see if there is a chance of improvement. My immunologist told me recently that I was resistant to taking these meds. He said this nicely as he is a nice man. I told him it was not that I was totally resistant but that I always have to weigh the side effects possibility against what is going on in my life. I took care of my hubby for so many years and the fear of getting too ill to care for him from taking a drug was always in the back of my mind.
Now, I have filled your head with some info and maybe you can do some searches on line that will help you make a decision. The worry about the cancers has never loomed too large for me because we are high risk anyway by having autoimmune. In fact, the whole world is high risk from the all the chemicals we have used the past years. We do what we have to. Good luck. Irish
Thanks for sharing your extensive experience Irish, you seem to have tried nearly
everything, and then some!
So far every med I have tried (Plaquenil, Salagen, Low Dose Naltrexone) has given me a terrible
reaction. It took me over 2 months to get the Plaquenil out of my system after it caused me awful neuropathy full-body pain after just a week on 100mg. So yes, I'm reluctant to try the "Big Guns"
with my sensitivity to meds. But I know you're right about giving them a try.
BTW- my doctor was very clear about Methorexate negatively affecting fertility and refused to prescribe it to me
Sharon,
I was on methotrexate for three years in order to reduce symptoms from Relapsing Polychondritis, which is a connective tissue disease in the AI family. Since I was in my late 40's, childbearing was not an issue. However, I didn't like the side effects. I managed to go into remission after a found a probiotic to take along with the methotrexate . Fifteen years went by without any health issues.
With the onset of Sjogren's in January of this year, I thought that methotrexate might help me, and I asked my rheumy to prescribe it again. He advised against it, saying it would do nothing to help Sjogren's, since it's a different kind of AI disease. I took it for three months, but there was no reduction of symptoms. I had to agree with him.
Is methotrexate working for other people with Sjogren's?
Most of us dont like having to take medications, but we are sick, we have an illness, and from experience, without treatment, things will get worse. I stopped plaquenil years ago and within 3 months, all my neuro issues came out big time.
The only thing I have been able to tolerate is the steriods, which have caused me huge problems with my bones, hair, eyes, and
my fat face, thin skin..the list goes on.
But, without them, I dont think I would ever be able to get out of bed at all. To me, its a quality of life issue, and I try to live each
day like it was the last. I dont know what will happen down the road, I just care about how I feel today.
Im trying to get off the steriods still, but not many options for us.
Good luck
Gursie
Very interesting, Linda. I took metho for what my doctors THOUGHT was RA .. it was really Lyme, so all I got was bad stomach pain and a lowered immune system.
I would refuse steroids unless I was dying (personal choice.)
Which symptoms are your worst. Sharon?
Linda- All I know is that my rheumy raised Methorexate as a treatment for SJS then decided it was not for me.
Gurs- I've heard of many of the side effects of steroids, but how exactly did steroids affect your hair and eyes?
I understand that Cellcept also weakens the immune system but has less side effects than steroids. Have you ever tried it?
Jazz- I have so many symptoms I don't know where to even begin choosing the worst, but what drives me crazy personally is the strange inflammation I get on my eyelids (which causes them to swell, droop, look deformed and uneven) and inflammatory tears (causing my eye to become bright red and face to burn if I cry) and my skin looking like it's breaking down (don't know how else to describe it) and extreme sun and heat sensitivity. Of course, having constant GI I can barely eat anything anymore.
I've known the feeling of terror at starting these new medicines. Before Sjogren's took over, I was definitely a person who avoided anything stronger than an ibuprofen or an antibiotic.
prednisone definitely helped me - I was on 10 mg for 2 years. I had less pain, less neuropathy, but I got very puffy, with weight gain. I had the beginnings of the "widow's hump". But the worse problem for me was that I became vulernable to infections, and healed very poorly. At the time, I didn't know I also have an immune deficiency. BTW, once you are on it for a while, you have to come off very slowly. My doctor had me come off by reducing it 1 mg per month. I still occasionally use prednisone for a "short burst" trying to break a bad flare. I use it for 5 days, and then stop. (Don't do this with out doctor guidance - this a plan I worked out with my doctor.)
I also tried Cellcept. I felt better on that than any other treatment I'd had. I had energy, I didn't hurt much, I could sleep. Three weeks in, I got a very rare fungal infection, and had to stop. The sort of thing where the doctor said "I've only seen this in text books". When you are looking at the Cellcept side effects, make sure you are checking dosages. I think it's often used in much higher dosages for other treatments, and the symptoms reflect that. Double check though, it's been a while since I looked at it.
So I have to avoid the medicines that suppress my immune system, because I already have immunodeficiency.
No easy answers here. But you can try these, and be prepared with a support network to respond if there's a problem. For example, I never start a new med on the weekend. That way, if something goes wrong when I start it, I can get in touch with the doctor. I talk with the doctor about what issues I should be looking for, and when to call, or just stop. When I first started taking these meds, I didn't do these crazy things, but now I've learned they help.
Thanks Warmwaters,
What dosage of Prednisone do you take when you do the burst?
How would I know ahead of time if I also had an immunodeficiency issue?
I couldn't find information on the dosage of Cellcept that may cause the more troublesome side effects.
According to the new guidelines, Methotrexate is recommended for Sjogren's.
http://www.sjogrens.org/files/research/RheumatologyCPG.pdf
I am on Plaquenil and have been for 3 years. I was also using Prednisone tapers (20 day tapers) for flares. However, due to the frequency of the flares, my Rheumatologist wanted to try some other treatment and get away from using Prednisone so often. I agreed with her. I did not want to keep taking Prednisone so often. My mother took Prednisone for years and ended up with horrible side effects from it (severe osteoporosis, multiple very painful vertebral fractures, perforated gastric ulcer, wheelchair bound). Her spine collapsed from osteoporosis and she was in horrible pain from it for years. So, I am very leery of ever going on steroids for the long term.
I was never tried on Methotrexate because I cannot take it, along with several other drugs, due to having had Hepatitis C in the past. So the first drug my Rheumatologist tried was Imuran.
I tried Imuran, starting at 50 mg a day), but it made me sick (nausea, vomiting, severe diarrhea, bloating, as well as just not feeling well). It also caused my liver enzymes to skyrocket. Plus, it did not help me at all. It was stopped after one month.
Next I tried Cellcept, starting at 500 mg twice a day. I was at that dose for a month. Then I increased to 1000mg twice a day. I got sicker and sicker ..... severe and overwhelming fatigue, nausea, vomiting, bloating, explosive diarrhea, and more. I felt like I was in the worst flare ever. I could not function. The one thing that improved on Cellcept was the joint pain. It basically disappeared. However, I got Shingles at 1 month and an abscess at a little over 2 months. I stopped it after 2.5 months because I was so sick on it. I felt improved (back to my normal Sjogren's self) after stopping it. The joint pain came back too.
However, I still had severe Sjogren's fatigue (my greatest problem), cognitive issues, joint pain, etc. So, a month after stopping Cellcept, I went on Rituximab infusions and have enjoyed vast improvement in all of my symptoms with the Rituximab infusions. I have had two sets of Rituximab infusions (2 infusions, 2 weeks apart, every 24 weeks). My first set of infusions was given in Feb./Mar. 2016 and my second set was given in August 2016. I can function pretty well and have noticed global improvement in my symptoms (fatigue, neuropathy, saliva, cognitive function, general well being, pain, and more). I don't feel as good as I did pre-Sjogren's, but I certainly feel vast improvement and I have a life again. I can function and enjoy life.
I do know Cellcept works well for some people so my bad experience with it is not the same as the positive experience that some others have. Some people have few or no side effects. Others, like me, have side effects.
I think it is just a matter of trying out the various drugs and seeing what works for you.
As far as side effects go, they can increase in severity as the dose is increased. When you read the literature, keep in mind that most of the worse side effects occur in transplant patients and they are receiving higher doses than we would receive.
Also, when you go on the drugs, the Rheumatologist will need to monitor lab work frequently so that any sensitivities and lab changes can be picked up early and the drug stopped if the lab gets out of whack.
Thanks Jasper, did any of the AI meds help with your MCAD symptoms as well?
Which MCAD symptoms? I don't have MCAD or maybe I don't know what the letters stand for.
Oops, got confused ::)
Hi - I did some digging on the cellcept. I was taking 500 mg a day. When you look at the dosages for transplants, depending on the type it's about 1-1.5 grams 2 times a day. So I was taking 500 mg, and some people take up to 3000 milligrams. I don't know how much of a difference that is in possible side effects. I also don't know about what your doctor would want you to take. We're all so different.
For my prednisone burst, I take 10 mg for 2 day, 5 for 1 or 2, and then 2mg then 1 mg. I'm super drug sensitive, and these are relatively low doses. I know people with asthma who do a couple of days 60 mg under certain circumstances. And please, let me repeat - this seems the right approach for me after a variety of experiments supervised by my doctor.
Best
Warmwaters (my other painkiller is a hot bath!)
Quote from: Sharon on October 19, 2016, 12:09:23 PM
Thanks Warmwaters,
What dosage of Prednisone do you take when you do the burst?
How would I know ahead of time if I also had an immunodeficiency issue?
I couldn't find information on the dosage of Cellcept that may cause the more troublesome side effects.
Hello, my research points to Plaquenil causing blindness or damaging eyes,and methrotexate might cause cancer.
Thanks Warmwaters, I'm also extremely sensitive to meds
and believe that hot baths are therapeutic.
How often do you need to do the burst?
I imagine you suffer no side effects from such short-term and low dosage use of Prednisone?
I may ask my doctor about giving the idea a try.
Trejonina- Yep, all the meds for AI come with possible serious complications.
I think your title is perfect. I guess you just have to take a deep breath and try a medication. I am ok so far with plaquenil. I've done ok on small doses of prednisone in the past. I am very sensitive to medications and the older I get, the worse I get. I hope the plaquenil keeps me stable and I don't have any damage from it. Eye check coming up soon.
What happened when you took LDN? Did they start you on a very low dose? I am trying it right now mostly for my auto immune thyroid.
I really think the biggest change in my joint pain happened when I got off wheat, potatoes and other nightshade veggies along with MSG. I ate some bread last night and boy am I paying for it today... Wish I hadn't done that!!!
Hi Deb- diet helps my joint pains as well, along with Vit. D3.
What is MSG?
I began on the lowest dose of LDN (0.5mg I think), and was unable to increase it at all.
It "sensitized" me even more than usual, and suddenly I was suffereing from IBS pains I hadn't felt in many years!
Oh well, we try.
I can do the burst up to 4 times a year. However, I've been cautioned to try not to do it that often. And I am taking other meds as well.
I tend to do the burst after 2-3 weeks when I am so tired that I cannot do basic things like make a sandwich, read, hold a conversation, and have pretty much been either sleeping for 12 hours a day or just drowsing in front of the tv most of the time. Usually there's a fair amount of pain associated with this too.
So the burst is to try to break the cycle of "it's really really bad". If my normal "feeling bad" number runs between 4-6, this is for 8+.
Quote from: Sharon on October 19, 2016, 04:37:49 PM
Thanks Warmwaters, I'm also extremely sensitive to meds
and believe that hot baths are therapeutic.
How often do you need to do the burst?
I imagine you suffer no side effects from such short-term and low dosage use of Prednisone?
I may ask my doctor about giving the idea a try.
Thanks Warmwaters, I understand.
Did they tell you why you must limit this burst to up to 4 times a year?
What are its dangers being so low-dose and short?
I'm sure it was explained to me, but anything like this should be checked with your doctor. We're all so different.
My doctor first wants me to give Prednisone a longer trial (at 10mg) to see if it gets
my symptoms under control (which symptoms respond more/less to the treatment)
as part of my diagnosis.
But I'm thinking what happens if it actually does work?
Maybe your "burst" could help down the road or maybe a constant low-dose?
I don't trust my doctors 100% (for example, they didn't suggest tapering!)
so hearing how others are being treated helps a lot!
Quote from: Sharon on October 19, 2016, 11:35:04 AM
what drives me crazy personally is the strange inflammation I get on my eyelids (which causes them to swell, droop, look deformed and uneven) and inflammatory tears (causing my eye to become bright red and face to burn if I cry) and my skin looking like it's breaking down
Sharon: Lots of good info with this thread. I am quoting the above as to ask, are these really your worst symptoms? And does the prednisone help those issues?
I was dxed at age 71 (almost 72). I estimate from the time I was about 45 I was prescribed Medrol pacs (at 4mg tablet) for 1 to 2 times a year. They were given to me for sinus infections. The physician who Rxed these pacs would tell me I couldn't have anymore than that as "
would need them when you get old." Boy was he right. As I read this thread...and many others...I am beginning to wonder if those Rxes of Medrol are what kept my SjS tamped down (or tolerable) for decades. I remember going on some vigorous trips and asking for a pac...and were given to me if I hadn't had the magic number of 2 in any given 12 month period. I had no idea they could be considered "bursts". Now listening to you, and thinking of the symptoms which bother you most, I wonder if MY symptoms (sinus) which bothered me the most are the equivalent of someone else's symptoms...such as the one you describe. That is: the symptom which bothers us most. Each of us perceives pain (and pleasure) in unique ways. I am saying this as for decades (and still now) I have suffered what I call "allergic eye". My eyes will swell, itch, and generally bother me. My acuity has never been affected thru any of the decades. Just what I "felt".
Now: I am one on LDP (low dose prednisone). In Feb it will be two years. I was on 5mg per day for a year. The last year I have maintained at 3mg per day except for about 6 weeks at 2mg per day. My rheumy really wants my maintenance at 2mg. I would too. I can barely walk at 2mg..in the dead of summer. I upped my air con so my home wasn't as cold (75) but I was still miserable. btw: in dead summer in Texas I was wearing fall clothes. I recall us discussing your mid 40s age, and you have a long time before you are my current age ...74. If...IF...you could get to 1 to 2 mg per day, I think it would be worth the trial. Your goal would be to get off it for certain periods of time. And that is hard. btw: Even on the LDP I have had to use prednisone bursts three times in two years. (for costochondritis attacks). These bursts start at 30mg @ 3 days, 20 @ 3days, etc down to the 2 1/2 mg per day. During those doses, I don't take my other dosage. Another thing about my bursts: all three of those were followed by ER visits for pain injections. Saying that to let you know why that dosage is so high.
Anyway: the prednisone is scary. I've been scared (or respectful) of the long term side effects for about 30 years. At my age and stage, I have surrendered my body to it. I can live independently and function taking care of a home. Am I fearful of bone loss, etc? I am terrified of falling since I have osteoporosis in one hip. You probably know many "old folk" falls are not falls, yet a bone crumbling and then crashing to the floor. When I am out and about, I find myself shuffling. When I am traveling I wear secure ankle braces and tennis shoes and can't do that shuffle. I take smaller steps. I'm aware of it constantly.
So now...I've given you new thoughts to worry over. :) Sorry.
Have a nice day,
c3
Hi Sharon. What a dilemma for you.
I was initially misdiagnosed with RA too so tried Sulfasalazine (anaphylaxis after 3 weeks) , Methotrexate by pill and injection for 2 years until I could bear the sickness no longer, Plaquenil for 18 months (anaphylaxis) and Imuran last year, which caused Pancreatitis. I'm very confused now about whether I would try further medication. My SFN and ganglionopathy plus tinnitus, problems swallowing and longstanding rotten taste are my constant companions and I would try Cellcept if my rheum agrees I think.
Taking Cellcept would be an act of desperation though because this is what I think: SjS means that many of us are unable to tolerate these medications. I believe that this is because the systemic lack of moisture means the toxicity is more concentrated and can't flush away as it needs to. So it's a balancing act between toxic build up of drugs or the eventual destruction of our bodies through lack of moisture.
No drug will help with the classic symptoms of SjS and therfore it depends which organs the disease is affecting and how severely - and on the likelihood of the drug being effective enough to risk potentially serious, even life threatening side effects. Very hard and to my mind there are no right or wrong answers - it's a question of the the lesser of evils I'm afraid. And you have the childbearing issue to factor in too so I would avoid Methotrexate, although I believe it's the drug that chased away my secondary RA symptoms, but not my Sjogrens sadly.
Thanks for your input C3 and MAT. Your stories do give me much to consider.
I'm just 40, and the symptoms are actually many: the fatigue is nearly always there, joint pains come and go, salivary gland swelling of the accessory glands, difficulty concentrating, can't tolerate any exercise, can barely eat because of gastro symptoms, and then there are the allergic reactions to the environment in general, burning red eyes and swollen eyelids with angioedema.
I've been put on 10mg of Prednisone for a trial of a month to see what it does for me.
So far I'm on Day #5 and...NO CHANGE! :o
I still feel (and look) just awful.
When can I expect any improvement on this dose?
Sorry but in my case steroids give me terrifying psychosis - although my inflammation levels drop dramatically in my blood. It should be working by now if your problems are autoimmune in origin I'd have thought? Five days is sometimes when people start to taper off - usually they kick in fast. Could it be allergy - let's say even a mast cell related rather than systemic inflammation? I had blood poisoning from a cat once and then again I had anaphylaxis from Sulfasalazine and Plaquenil. In which case you probably need double the quantity of steroids I would assume - or a steroid shot in the bum would be better? How are your bloods and esonophils?
what Mat said: Your inflammation should have decreased by now. Especially your major complaint--the eyes. Do you see an ophthalmologist? Have you ever see a dermatologist? I know I am seem to be going through the "ologists" but really...if your eyes are your major concern, and that much prednisone hasn't reduced your description...i'd be wondering if dx is accurate...or treatment. It goes to show you and others each of us is different!
c3
Yes I agree - has Uveitis been excluded yet? I'm concerned that your eye problem hasn't really been diagnosed yet - unless there's stuff you haven't mentioned here?
I've been to numerous eye docs, dermatologists and allergists.
I scored a ZERO on the Schirmer's test and take Restasis though it doesn't help.
Nobody could figure out the swelling and it was deemed "something allergic".
I have not been able to get a diagnosis of Mast Cell Disorder (though I have many of the symptoms) since they only have the Tryptase blood test here. In any case I have tried every single antihistamine already but none of them help at all.
My blood shows nothing allergic and neither did prick or patch tests. IGE is even normal-low side.
I would think even in MCAD the steroids would have helped at least somewhat, but I feel worse and fatigued than ever. My eyes hurt from dryness and look inflamed and droopy. I also feel nauseated and terribly weak.
I have positive ANA, RNP, RNP-A and APCA (anti parietal cell antibodies)
So there's no doubt something autoimmune is going on.
I'm at a loss for options....
Have they checked blood for immune deficiencies or for any possible genetic issues that could be clouding the picture. My immunologist will occasionally check people for these genetic diseases as they are more prevalent than one would expect and there are literally hundreds of these diseases and they can be so weird in their symptoms. Irish
No Irish, they haven't done such blood tests, and I've been to 2 immunologists already!
Should I see a hematologist?
Also quite strange that my ESR and CRP blood tests are completely normal, even towards the lower-normal range, but I have visible inflammation in my eyes and skin and inflammation in my stomach lining.
Have you heard of or tried amniotic fluid eye drops for your dry eye. I am a pharmacist, and I have connections with a company that produces them. A lot of resistant dry eye sufferers have had great things to say about them as far as relief they provide and simply an eye drop; they don't necessarily heal or get to the root cause of the dry eye but regardless of the cause they provide significant relief. Only thing is it does NOT require a prescription, so insurance doesn't pay for them. As you can imagine the cost to collect, sterilize, and package human amniotic fluid is significant; so it's $175-$195 for a month's supply. I have been able to hook people up with a free sample because of my connections, but I don't want to abuse that privilege so private message me if you want more info or want to see about getting a sample.