Hello everyone, I wanted to introduce myself and see if I could get some advice.
Here is a little background on me: I am an athletic, 34-year-old male, married to my wife of 9 years and we have two little boys ages 4 and 2 years old. I am seeking some advice on medication and just general information on sjogrens. My wife and I really haven't dug deep into research- ignorance is bliss I suppose. But knowledge is power, right? So we're at the point where we have to decide if we want bliss or power.
Here is timeline of my diagnosis:
May 2007, 30 years old-
Started noticing symptoms for the first time ever. Felt weakness in legs, muscle twitches all over body and unclear thought process and difficulties writing and typing. I first noticed these symptoms while sitting still at my desk at work and also while doing yard work outside. Also experienced anxiety and panic attacks.
Symptoms persisted off and on for several years. I saw numerous doctors, had MRI's, xrays, blood tests, exams, EKG, spinal taps, etc. Was never given an accurate diagnosis.
August 2010- 33 years old-
I started exercising on a very regular basis. I find it helps my physical pain and also mental health. I train regularly and compete in duathlons.
November 2010- 33 years old-
I had peripheral vision loss/blurring of vision. I was *finally* able to get an INACCURATE "probably" diagnosis from my neurologist of multiple sclerosis. I applied to a research hospital in my city and was able to get an appointment with an MS specialist in February, a 3 months wait.
February 2011- 33 years old-
After many more tests, the MS specialist informed me I did NOT have MS, and referred me to a rheumatologist. I was finally given the diagnosis of Sjogrens. I started taking the minimum amounts of medication: metroprolol (25 mg) and hydroxychloroquine (200mg) and Ibuprofen-- when needed-- (600mg) plus the occasional xanax for anxiety. I also continue to train and exercise on a regular basis- with my doctor's approval. Dry eyes/dry mouth are my smallest concern- the muscle spasticity is the biggest issue for me.
February 2012- 34 years old-
I feel as though I have been having a "flare up" the past week or so. Lots of muscle spasticity: tremors mostly in my arms, muscle weakness, spasms in legs some in arms. Lots of anxiety about it. I had to use eye drops today- for the first time in months.
I have an appointment coming up with my Rheumatologist and I have been considering trying out Methotrexate. I wonder if it will help PREVENT deterioration of my body or if it will just help bandaid the symptoms I have. I don't take the decision to start this medication lightly. I like using as little medication as possible to feel better and prefer more natural ways to cope. I recognize this is a drug with some scary side effects. I enjoy drinking wine with my wife in the evenings and I know that is something I'd have to give up. I worry a lot about providing for my family and living a good quality life and watching my boys grow up. Is most everyone out there with sjogrens on this medication? Where can I get more information? Any advice or recommendations would be great!
Thank you for reading my long post!
Hi welcome to the forum.
I am also 34 and had strange symptoms for few years. I also have the all over muscle twitches probably the first symptom that worried me, though no longer worry about this. I now have painful salivary glands, dry eyes, blurry vision, muscle aches. I also suffer with anxiety, have done for few years.
I am not on any medication for sjogrens apart from eye drops so I can't really help you with that, but I am sure a lot of people on here have advice.
Leanne
I don't have advice, being an older woman whose Sjogren's manifests with chronic fatigue, headaches and earaches.
But I do want to welcome you to the forum!
I've found the search engine at the top corner of the main page to be one of the most useful things since the blender! :D If you don't find what you're looking for, feel free to post away! No question is too big or too small! 8)
And if you see that someone else on the forum has a question you might be able to comment on, jump on in and help!
Glad you found us, sorry you had to look.
~Abbey
Ryanwolf,
The side effects from methtrexate vary among individuals. You may not experience many at all.
I asked my doc about that essential glass of wine, and I was told that with oral MTX having an occasional drink, like one or two a week, is ok.
If you are doing the IV or IM injections, that is at a much higher level, and you should have absolutely no alcohol.
Hi and welcome! Perhaps before trying MTX you could try upping your dose of Plaquenil to see if it helps? I started out on 400 mg of Plaquenil from day one. That being said...it has helped with the joint swelling in my fingers, but nothing else it seems. I am physically and mentally exhausted all the time, still have joint pain, can't gain weight, developed asthma which can get pretty bad at times, and there's a long list of symptoms I still have even with the Plaquenil...and I'm 32.
Good luck w/whatever treatment plan you and your rheumy decide on!
ryanwolf- I had identical symptoms and also am an avid runner and hiker ( did a 100km race last summer).
the muscle twitches and anxiety were what led me to seek out help initially although 3 years prior I had experienced a rough patch of intestinal health that looking back were probably autoimmune.
I have opted to this point to not take any standard meds prescribed( talk to me in 5 or six years perhaps I will have made a different decision!). what I found has helped me immensely for the muscle twitching is magnesium( have you had these checked in blood work? I would suggest it) As an athlete you would need more than the average person and those of us with sjogrens tend to not always absorb nutrients well. A deficiency can also make muscle weakness more pronounced and anxiety attacks worse.
I also take a supplement called adrenergyn to help the adrenals deal with all the anxiety- it has been VERY helpful.
I am so glad you found us! I am interested as I have wondered how others who are very physically active do with sjogrens. I have cut back training ( winter and fatigue) but still am out at least 5 days a week. It really helps me to BE active but i know everyone is different
Welcome ryanwolf, to the forum
While I am glad that you found us, I do not like it than anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogren's – Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read "Spoon Theory" on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
1. Don't Panic – Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book "Feeling Good" by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe – For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate – Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think "I am" as you breathe out, think "calm". Repeat as needed. Meditation can be as good as sleep.
With Sjogren's we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Hi Ryan,
Welcome to the forum!
I am a pretty active person, I work out 7 days a week, lift weights elliptical trainer, and or walk 5 miles a day, depending on my schedule. Exercise helps me wuth my brain fog and keeps my muscles and joints from getting stiff.
I am on a low dose of plaquenil, which has helped, but I have had good results with taking magnesium like Cargillwitch. It has really helped the muscl twitches and tics. Also I take tumeric, which has been amazing help with joint pain and swelling. And I am also gluten free now.
Thank you everyone for the great responses. I am actually taking 400mg of Plaquenil already (200mg twice a day). I am now planning to ask my doctor if we cna up that dose before I jump straight to MTX. Also, I really appreciate the Magnesium and tumeric suggestions. Thank you! I failed to mention that I also take multi-vitamin, CoQ10, Fish Oil, and D3. I've been taking these supplements for over a year.
Welcome Ryan. We have alot in common. I too am just going to turn 34 years old with 4 children and a wife.
I can tell you my life is more balanced and I do appreciate more things than I did before. One thing I have learned is to just take this syndrome day by day.
This site has been a huge help for me and the people on here are amazing.
Jeremy
I want to applaud you for being proactive about your health! For asking questions if the doctors and seeking information. Not just going to the dr and saying "yes dr, of course dr, anything you say dr". ::) :P
We've here gone through so many drs and gotten so many diff diagnoses, that our opinion has taken a decidedly different turn that what it was in the past.
I feel for you getting hit with this stuff at a younger age but glad you are positive and taking a proactive approach.
Hi there
I came across this post today, and was wondering if you ever decided to take Methotrexate or if increasing the plaquanil worked for you?
I am also experiencing the joint and muscle pain, spasms, stiffness etc and have not been able to gym for 3 weeks now.
The rheum has decided to increase my plaquanil for a month and if this doesnt work i may have to try Methotrexate ( i really dont want to) I am also 34 years old.
I hope this finds you well and pain free.
Hi, 'Girl!
My rheumy has told me in the past that 400 mg of Plaquenil is the highest dosage he can prescribe. I've never questioned him so I don't know why.
It took about six months or so on Plequenil for me to be able to tell a difference in how I felt. How long have you been on it?
Sorry to butt in on this thread, but I keep seeing people recommending, or the taking of Tumeic,
Can I please ask how would one take this stuff and how often. Have I to start eating lots of curries? ???
Thanks Dolly
Hello, welcome to the family! Sorry that you are going through this!
I was diagnosed in April of this year and have been on plaquenil for 7 months. About three weeks ago we started on methotrexate. I, too, have had many CNS symptoms that initially drove my neurologist to diagnose MS, even without a shred of objective evidence. Well, I guess my rheumy is doing the same thing on his end with Sjogrens, LOL!
I was scared of methotrexate, especially the lung disease, but I keep having lots of flare ups, not as bad as in the past though. Also, my joint pain is still too bothersome.
I hope you find something that works--then pass the idea onto us! Take care.
QuoteSorry to butt in on this thread, but I keep seeing people recommending, or the taking of Tumeic,
Can I please ask how would one take this stuff and how often. Have I to start eating lots of curries?
Thanks Dolly
My doc provides me with a supplement called Turmero Active (K-75) from Apex Energetics which is 420 mg of turmeric extract per serving. You can probably find it online. I take 5 ml twice a day.
Sue
Zyflammend is also a good tumeric-based supplement.
I am female, but very active - and really don't like taking drugs.
Going gluten and dairy-free has helped me a LOT - and so has Plaquenil, but it does take 6 months to kick in.
I thought I was doing pretty well on just the Plaq, but this last April I lost hearing in one ear to autoimmune issues (my Sjogren's is secondary to Lupus, and I also have APS and Raynauds - all of which predispose me to CNS issues, unfortunately, though I have been pretty lucky so far - main symptoms fatigue, body pain, some other stuff that comes and goes but is not nearly as bad as some people get...yet, anyway, LOL).
SO - I started on Mtx. I was really scared and unhappy about it. BUT - I have to say - it's been amazing. I feel better than I have in many years! Yes, I miss my glass of wine with dinner - but it's worth it to feel good. I have had very few side effects so far - I take 12.5mg on Monday nights and 12.5mg on Thursday nights.
There are many diet/lifestyle/supplement choices and pharmaceuticals available to treat these diseases, and it can take some experimenting to find which one(s) work for you - but DON'T let the disease run away with you. Do lots of research and keep demanding good care!
Hi Ryan, I'd like to just say a word about Methotrexate. I've been on it and Plaquenil since I was diagnosed six years ago. I have recently began having other problems and I am on a trial type thing to see if I can help the drs pinpoint it. I am female and twice your age, so different things apply. :-) I am having trouble breathing and I stopped the MTX of my own accord about 6 weeks ago. My breathing is not any better (I have COPD). I am beginning to feel pain in my lower back and hips which I believe the MTX was taking care of. I will see my drs and likely go back to MTX. I remember when I started taking this med. I was so sick I thought I was going to die. The only thing I could do was lie on my stomach on the couch or my bed.
I knew it took some time for the med to work. I took my dose and the night before my second dose, I realized I felt better. I thought this is my imagination. It wasn't my imagination. You take this med once a week and sure enough the first dose began to work on me by the 6th day. Not everyone would have this fast relief. It kept getting better the longer I took it. I never did notice any bad effect from the MTX. Good luck and keep up with the board. The best folks are on here and really help each other out. Lucy
)
Hi A66
I have been on the Plaquenil for 2 years now. I take 1 a day, not sure of the mg, Im guessing 1 is 200 mg? I started off only taking it for 5 days of the week, but rheumy has upped it to 7 days a week and included 5 mg prednisone to my meds.
It has been 7 days on the increased dosage and so far I have not noticed an improvement.
Perhaps it will take a few weeks, I really do not want to go the Methotrexate route.
Hey, 'Girl!
My rheumy started me out on Plaquenil with 400 mg per day, although I've read on this forum that some people sort of ease into it. Maybe by increasing your dosage will help.
My rheumy says that Plaquenil is a more innocuous drug than any of the others out there, that's why he gives me the highest dosage available. It's the only thing I take for my SJS (except for the medrol dosepac for flares which happen about once a month or so). I would question him/her as to why you can't take a full dose on a routine basis.
Hope you're feeling great today!
Love,
A66ey
I can't take the full dose, maybe because of my sulfa allergy? My skin turns into an inflamed, itchy nightmare. It's barely tolerable at 1 200mg dose in the evening.
Sorry to hear you have this horrible illness Ryan, I am like you and wondering at this stage what to do next. This is interesting to me. Looking back I had a lot of the same symptoms for the past 6 years as Ryan. I naturally attributed them to my thyroid disease, now I think it was sjogrens the whole time. I had the extreme muscle weakness, fatigue, tremors, but it wasnt till the dryness appeared this year that I found out about sjogrens. I am at a crossroad, my rheum doctor will put me on plaq if I press it, but she said she normally dont until there are more severe chronic symptoms. Mine seem to wax and wane, she said I have sero negative sjogrens. Should I push for plaq if I am in a mild stage of the disease, or should I hold off and see if things stabilize where they are or get worse?
I hear from people on these boards the disease does not always progress, how can you know what course it will take. I hate to start a major long term drug therapy if I have a milder form that will stay about level, outside of flares of course. The other issue is I have major gastro/pancreas issues that I believe are a part of this. But my rheum doc wont treat for that and I have to see a gastroenterology doc, who btw knows absolutely nothing of sjs. And is putting all my problems down to severe gerd/hiatal hernia/ pancreatic dysfunction and poss SoD.
Long story short, if the gastro issues are caused by sjs then plaq would stop that right? I guess Ryan is also concerned if the time is right to start such drugs, how far can we go and not cross the point of no return
Tivia, regarding your wondering if the disease will progress or not, my sjogrens has been very mild for about 20 years, so mild that no doctor ever had a clue what was wrong with me and just blamed it on anxiety. However, about two years ago I had a flare that caused lots of pain and suffering. The flare itself lasted a few weeks, but the resulting PNS/CNS damage lasted over 6 months. I was miserable and could not function. I took no medication because no one still had a clue what was wrong with me. Then I had another big flare this year, which finally led to a sjogrens diagnosis.
My point is, even a very mild course can turn ugly at any time, out of nowhere, just something to think about when making your choice about using medication. Perhaps, if I had known about my disease earlier and had started treatment then, maybe I would be better off than I am now. Good luck and take care! Hugs.
Quote from: Ark mom on November 13, 2012, 10:55:59 AM
Tivia, regarding your wondering if the disease will progress or not, my sjogrens has been very mild for about 20 years, so mild that no doctor ever had a clue what was wrong with me and just blamed it on anxiety. However, about two years ago I had a flare that caused lots of pain and suffering. The flare itself lasted a few weeks, but the resulting PNS/CNS damage lasted over 6 months. I was miserable and could not function. I took no medication because no one still had a clue what was wrong with me. Then I had another big flare this year, which finally led to a sjogrens diagnosis.
My point is, even a very mild course can turn ugly at any time, out of nowhere, just something to think about when making your choice about using medication. Perhaps, if I had known about my disease earlier and had started treatment then, maybe I would be better off than I am now. Good luck and take care! Hugs.
Good to know...well not about your flare but that you stayed pretty much level with the disease. I too am hoping for a milder course. But am wondering if the beta cells dying off in my pancreas and the insufficiency coupled with the severe GERD is act sjs related. And if going on plaq would knock that out. I see my rheumy in jan I guess I have to make a decision on pushing for plaq or not. My GI doc is usless you bring up the possibility of sjs causing pancreas problems and she goes ..lol no sjs is dryness, stay on the ppi's and the enzymes :(
I started taking Turmeric about 3 weeks ago, at lunch, and I am seeing an improvement in my hip pain. Small, but nonetheless, there. YAY!