Hi everyone,
I haven't been here in a long time cause I just didn't feel good and I guess I was in denial again about being sick. I pretend to be well.
So,I had interesting appt. with my rheumatologist. I have Sjogren's, fibro, Hashimotos, and other lovely maladies.
I had asked back in Aug. if something else was wrong with me besides sjogren's. This new dr. partner ran more tests all the while assuring me it was just my fibro. NOT
I returned in 6 mos with my reg. rheummy and he took a look at me and I told him I was spending 13=16 hrs./day in bed. I have pitting edema in my legs and ankles. (lyphedema?? maybe?)
I also tested positive for the DNA strand test back in Aug. He told me I already had a + ANA, + for inflammation with high sed rate. He said I needed 4 out of 11 criteria for lupus dx. I have 3 for sure so he thinks I have LUPUS. It's finally a reason for my misery and of course, I am relieved to know something....anything. But LUPUS isn't going to be a walk in the park.
Methotrexate was started Sun at a low dose (3 pills once a wk with daily folic acid. And I haven't felt worth a darn since the Monday. My ankles are killing me and the thigh muscle pain is back with a vengance. I've gained water wt. (7 lbs) since Aug so I'm also back on Lasix and potassium (K).
If you have any personal anecdotes or advice I'd like to hear it. Here it is New Yrs. and I'm still up cause of pain.
I hope everyone is improving and doing well and our New Year will give us relief.
I have SLE too. I think I've met 8 or 9 of the 11 criteria! I take CellCept and Plaquenil for it but nothing really helps with the pain and fatigue. My rheumatologist has mentioned Benlysta a couple of times but we don't have the best insurance, and I am not going to pay the outrageous cost of it (I can't imagine who could!) At some point, we may look into cost and programs that help cover the cost but I don't know ... I just had a CT scan to check for ILD and one of the reasons I'm on CellCept is proteinuria. I also get pretty much daily headaches.
Lupus, like Sjogren's, varies from person to person though. There are a few things that most people with lupus experience - like profound fatigue, skin rashes and joint pain - just like Sjogren's is known for causing dryness symptoms.
I have Lupus, Sjs, APS and Raynaud's - and Mtx has made a HUGE positive difference for me, so don't give up hope! It helps a lot of people (though unfortunately not everyone, of course).
Often there are side effects for the first couple of months, but those usually decrease with time. Be sure you are taking folic acid to minimize the side effects.
I hope it works for you! For me, combining Mtx with plaquenil and a very low dose of prednisone, as well as going gluten and dairy-free has meant I am back to probably 90% of my pre-diagnosis health most of the time. Keep working at it until you find some relief!
Last visit in Nov. my labs changed to positive now for both SSA/SSb (high).
Interesting that ANA went down 640 to 80? Same lab.
Knock on wood ( my head?) ..she has not added anything to date.
Tinker...I am wishing you success in whatever measure with the new protocol.
I will tell you that I was sleeping, crashed that much for days, for months..., then I did not need to, then someone flipped a switch and I did?
I do not take Methotrexate... I wish you success and the support here from those who are taking that particular med.
Hi everyone and thanks for your responses,
I was feeling absolutely awful and still can't eat. I called my rheummy and he wants me to stop the methotrexate. I'm relieved but sad that there is nothing out there for me.
Today I got up and went out for a few hrs. Then right back in bed again. I do like basketball so I'm watching a lot of that when I can keep my eyes propped up.
Did you guys have rough symptoms when you started the methtxate? I'm just wonderfing if I should have hung in there.
My knees and legs are killing me. So, not sure I'd make it another wk on the methotrex. I am very sensitive to meds.
DON'T GIVE UP YET!!!!!
Here are some things to consider with Mtx - please ask your doctor about them before you give up:
1) Side effects DO tend to abate after a month or so....
2) Maybe you need to start on a lower dose and work your way up....
3) Perhaps you need more folic acid - or to take it the morning of your dose (some doctors say not to take it the same day as your Mtx, but others are okay with it, especially at the beginning)
4) Be sure to take it on a full stomach of soothing foods...
5) Some of us split our dose and take half of it each time....I take 7.5mg on Monday nights and 7.5mg on Thursday nights - that reduced my side effects a lot....
6) Try taking a probiotic every morning - it can help your whole digestive system regulate itself better...
7) If the oral form really doesn't work for you, you can do injections. I have not tried them but have heard from people that they are really VERY easy (not a big needle, injection site can be a big muscle like the thigh, etc) and often have fewer overall side effects than the oral meds.
In the end, some people really, truly cannot tolerate it...but if you have tried other stuff and this is kind of a last-ditch effort, it might be worth trying adjustments to try and make it work. I hate to see anybody just have to live with these horrible diseases without help. :(
I am so sorry it's been so miserable for you.... ((((((hugs))))))
Thanks, Sleepy.
I was not given any options as you suggested. My dose is 2.5 Mg x 3 pills (I put this med away and I'm going off my memory so this amt. could be in error.)
I must say that I do feel a little better today than I did the previous days so maybe I could still try again on Sunday.
If I do I'll cut the dose back and make your suggested changes.
Wonder why my doc didn't even suggest this?
I'm indebted to you Sleepy for giving me this info. I'll make a decision soon and see how I feel tomorrow.
Thanks for taking the time to give me more info and I appreciate it so much.
:D
I've been on Methotrexate since August, started out with oral 7.5 mg/week but due to severe GI issues switched to injections and have tolerated that well. I'm on 3 mg of Folic acid daily because of some mild hair loss but otherwise no side effects and am really starting to feel better. More energy, less morning stiffness and joint pain ant the big improvements I've noticed. It's not 100% better! but probably 50% better. You might want to talk to your rheumy about increasing your Folic acid first as it is supposed to help minimize the side effects. But if that doesn't help ask about injections or other options.
Nancy
I am really happy if that info helps... :D Definitely check with your doc before making changes, though...I am not a doctor and don't know your particular case, of course...I am just speaking from personal experience, my own doctor's advice, and internet research (mostly from other people who also take it).
Some doctors just simply don't communicate well...they may be great doctors, but we don't always get the whole story from them. Or they are really rushed, or whatever. In any case, he or she should at least be willing to let you try some of those options if it means you get some relief.
Methotrexate really can work well for autoimmune disorders...it has been great for me so far. If I ever get to a point where I can't take it orally, I will use the injections. The only lasting side effect I have so far is that my hair is thinner and finer, and a more curly texture. I would love to get my old long, silky, thick hair back, but it's not worth being sick all the time for - it's a fair trade: good hair for good health! ;)
It is weird that taking poison twice a week can make me feel soooooooo much better, but it does!
Let us know how things work out for you....
I think that is the big problem for us..the meds are extremely hard to tolerate. Ive tried just about all of them and couldn't take it.
Been scraping by with 20mg steroids daily, which is horrible I know, but have no choice. My health is so bad too..need to try something again soon. My doc did mention the metho injections that I might give a whirl, but I also have other selective immune disorders that make it hard as well. Im really in a bind...don't give up. I know before Imuran worked great for a bit for me?
Gursie
I have had psoriatic arthritis for many years before Sjogren's was also diagnosed, and I took Methotrexate for it for 11 years. It helped tremendously for several years but then as the arthritis worsened I needed a higher dose and could not tolerate anything higher than 7.5 mg/week. My white blood cell count got too low on anything higher, and I would get sick and bad skin infections. However, many people are able to tolerate much higher doses.
Also, although I was told it would start helping in 8-12 weeks, it actually took 17 weeks for it to start helping. (Most people don't take this long for it to start helping.)
So, if you can get to where you can tolerate the side effects, don't give up on it too soon or think that you need a higher dose until you have given it some time.
Becky
Quote from: gurs on January 04, 2014, 03:55:35 AM
I think that is the big problem for us..the meds are extremely hard to tolerate. Ive tried just about all of them and couldn't take it.
Been scraping by with 20mg steroids daily, which is horrible I know, but have no choice. My health is so bad too..need to try something again soon. My doc did mention the metho injections that I might give a whirl, but I also have other selective immune disorders that make it hard as well. Im really in a bind...don't give up. I know before Imuran worked great for a bit for me?
Gursie
I am in the same bind also , I have been giving so many dif meds and now I am so sick they aren't sure whats causing what. It sucks when you have conflicting disorders and the meds to treat them work against each other.
Tink make sure and keep a journal of everything that you take and any little change no matter how small. They said mine looks like SLE and maybe crest because I have those blood vessels popping up inside my mouth and on my lips. They told me to journal everything so if there is a reaction conflict w/e they can maybe trace it.
I really believe most of the meds available to us, really act as preventatives . I know when I stopped my plaquneil years ago, everything got much worse very quickly. We don't have many options. Yes, if the side effects are horrible, then no choice, but some we have to live with. Our blood counts another issue..we have no choice. A lot of us have immune related disorders, so makes it even tougher. Ughhhhhhhhh...
Keep trying though..
Gursie
Hello Tinker.
Re: pitting edema.
Do you wrap your legs (ace wrap or prescription E-hose) when up and about?
if so, put them on before you get out of bed and keep your feet elevated when sitting.
I am sorry to hear you now have an additional label of Lupus.
Hope the methotrexate works for you and have little or no S/E.
eye2dry
Thanks everyone of you!
As usual, I always find useful info here. There is nothing like someone who has been there to talk to about the ups and downs of all of this.
Tivia, I have always meant to start a journal of side effects or how a drug affected me. I do try to keep notes on dr. visits and that has really helped. But I am most definately going to start a meds journal. So many times I get prescribed something I've already tried but forgot what was wrong and why I stopped taking it.
I write on the bottle "headache", nightmares, diarrhea.....you get the picture! lol
But, that's not enough cause there are so many drugs and so many side effects. So, good idea Tivia.
Well, I was still having belly pain when I ate anything as of yesterday. Lost 5 lbs. and that's good, but the doc took me off the med.
I guess it's best if we wait until I have more than 3 of the 4 necessary symptoms to make this diagnosis of lupus. Wow, meds just kick my backside and I hope I never have to take steroids, or plaquenil, or methotrexate.
Your suggestions and comments are much appreciated. I need to come here on a regular basis. Thank you all so much.
Hi eye2dry,
To answer your question: those hose drive me BANANAS!!!! I know I need to wear them, but no matter what I do, they itch and cut off my blood supply. I do keep my legs up most of the day as I am in bed.
I have a special device that helps me put the stockings on, but my thumbs are so painful that it's a real chore. My lymphedema/or ? pitting edema is not bad......it's a +1. So, it's not terrible and right now I can deal.
If you wear those stockings everyday, my hat is tipped to you. Thanks for your input and your advice. ;)
Yes Tinker......I wear gradient hose when I work all day.
I work (LPN) 9-11 hours a day on my feet and I need the support.
I do not have varicose veins (yet??)
I know what you mean...they drive me crazy too...especially in the summer but
I don't wear them at home.
Hope you get straightened around soon...best of luck to you.
eye2dry
I'm 65 , adding a disease every year it seems.
So, I had written a couple of mos. ago that dr. felt I had lupus. He made it sound as if it was not a sure thing. But this visit, he said I definately have it. He does make light of it , but he is still the best dr. I ever had. He's more like a friend and taking me through this.
Anyhow, I don't know what to expect: will it be my lungs, brain, liver, kidneys, skin, heart? The Rockets coach, Kevin McHale, just lost his daughter to Lupus and she was only 23. They thought she was getting better but she got worse in a hurry and died. Sooooo sad.
I don't know if I"ll be one of those who are mildly affected or severely affected. Since I'm older, I know something is going to claim my life but I don't know what or when. My money is on the lupus right now.
Does anyone here have lupus?
My daughter was diagnosed with SJS at 17. Now she's 23 her Dr has added Lupus to the mix. :(
As you can see by my signature, she has a few issues and it hasn't been an easy ride physically and emotionally.
For the past couple of years she's been relatively well. Apart from medication for her thyroid and insulin resistance, she does not take anything for the SJS or Lupus (Plaq, pred & sulfa does not agree with her) but has recently had to add a new medication due to GERD/stomach issues.
I think it's pretty common to have both SJS & Lupus.
Like you, it seems we all collect new AI illnesses as time goes on.
Wishing you all the best
Hi Tinker,
Ack, Lupus. I had a doctor who thought I had it when I was 22! He kept testing, I didn't have it. But I read up on it and decided against it right away.
I have met lots of very successful people with Lupus....Full, active lives, tennis, Dean at a University, major accomplishments.
I have also know some less happy outcomes. Lupus is like every other Immune Mediated condition...it varies from person to person, and from time to time.
I sincerely hope you are feeling better with the lymphedema, that is an awful condition and very disabling when it is in full swing.
I too have collected something new almost every years since Sjogren's at age 60. Amazing isn't it.
In my case I have severe coronary artery disease (under control now, as far as I know) and when it was discovered at my age of 57, I figured that would be my end, and fairly soon.
Little did I know that I was spared a heart attack early on to amass a horde of other conditions! Of course my osteo arthritis (garden variety) is the most painful. My Peripheral Neuropathy is the most disabling, my Primary Immune Deficiency is the rarest and most costly ($140,000/year to treat), but it is still my Coronary Artery Disease that will probably be my exit visa.
I'll be 72 next Sunday. I feel as well as I have in ages (mostly the Medrol, a form of Prednisone, I imagine). There always is an exit visa. And here in NC it is unlikely that a sink hole will open under my bedroom......but honestly, Tinker, we NEVER KNOW what lies ahead.
Have you read "How to be Sick"? It's a great book. I was embarrassed when I bought it because my husband already thinks I'm a hypochondriac. But it has some very good ideas about acceptance of what IS.
Keep us posted. I have to think of 'conditions' like merit badges.....we are amassing quite a few, aren't we?
Hugs, Elaine
Thanks aussiemum and Elaine,
EXit visa.....that's a clever way to put it ! lol but we've all got to face it at one point or another and I think my visa is stamped and just going through the proper channels now.
I'd like to read this book you speak of. This is the only place I talk about this. My son thinks I'm a little nutso even though I have only spoken about the lupus maybe 2 times for a short telephone exchange. I think he just feels helpless, therefore, Mom is overreacting.
I guess I'm supposed to say it's nothin' atall. Just a little bump in the road.
My daughter gets it cause she has RA. Thanks for letting me vent. Tinker