I was just wondering if anyone is taking something other than Celebrex for their fibromyalgia/lupus problems? I don't seem to tolerate traditional medicines very well and the Celebrex seems to be causing me to have severe muscle cramps and spasms. I don't think that my rheumatologist believes that I am having this much trouble and suggested taking the Cymbalta to "help me deal with things". I can't see that it's doing anything to help. So far the only thing that I've tolerated is the hydrocortisone shots in my back. I keep feeling bad and having all of these maladies that don't seem to show anything alarming in my blood tests...just some vitamin deficits and some occasional signs of inflammation. I'm so tired of feeling this bad and having everyone thinking that it's "all in my head." I know that my lupus is not a severe case (thank heaven) but it's still enough that it affects my everyday life. Am I alone or does anybody else face the same kind of indifferences to their pain?
I take Savella 100 MG twice a day, and started taking Gabapentin 300 MG at night
Hi Aqualady,
I resisted taking medication for years, but finely had to give in.
Have been officially diagnosed with Lupus? If so, hydroxyclorequine should be the first choice.
I tried gabpentina and Lyrica, both gave me severe side effects. Now I am taking 60 mg of Cymbalta, it took a few months to work out the side effects, but has helped a lot with my neuropathy pain.
I would find a better doctor!
I have had trouble tolerating meds so far. Three months ago I added Cymbalta for my pain and it has helped alot with Fibro pain not so much lupus pains. It is indicated to treat fibro because it does something with the nerves. I have also seen great inprovement with my Lupus headaches and have noticed no side effects.
I take both and a whole lot more. I added prilosec, it has helped a ton with my stomach issues. The thing that Sucks is everytime they add a pill another one is added.
Hi, after 5 years of pain relief, When I had to change insurance companies, I was no longer able to afford Celebrex. After trying lots of different combos, what seems to work for me is aspirin and tylenol. I take those in addition to Plaquenil and Cymbalta and seem to do pretty well on this combo. If a flare starts up, I increase the aspirin dose to the maximum. This has kept me off prednisone for 6 months!
I totally understand where you’re at. I use weekly Methotrexate injections which help (me) some with the pain and fatigue from inflammation. Don’t dismiss the vitamin deficiencies. Months into pharmaceutical Vit-D and Potassium supplements I experienced improvement in my general malaise and brain fog. Then I had a consult with a urologist who discovered my testosterone was very low and prescribed weekly Testosterone Cypionate injections. That turned my life around. The long term weight gain from chronic Presnisone is gone. Now rarely am I too week to work. Motivated and finally able to exercise, I’m at the gym four days weekly. There’s HRT clinics in most cities, full of men and women feeling better. Hormones are regulated and controversial, but it’s worked for me. Oh, the Cymbalta? I’ve known people who responded well, with less pain and depression. However from what I’ve actually seen,Cymbalta should carry an addiction warning, as I’ve observed people exhibit withdrawl symptoms when taken off cold turkey. If you’re aware of that and okay with it, then yes IMHO it can help. In fact my father takes it for the pain of polyneuropathy and symptoms of depression. I wish you the best of luck and hope you feel better!
I have been going through the same thing. It’s very frustrating when a doctor who knows about and treats hundreds of patients doesn’t realize the amount of pain you are in. My numbers are never really high fibro doesn’t through your lupus numbers off. My new Dr decided to try Lyrica. I know some patients have had horrible side effects but my rheumy had me take a very low dose and titrate up VERY slowly. I did have a few days of being exhausted but no other severe side effects. I have a terrific pharmacist and he told me that it’s one of those drugs that either works really well or is horrible. Nothing in between. I was really scared when I read all the bad experiences with Lyrica but for me it has been a God send. I can sleep again with little or no pain. My husband can touch my shoulder without me crying.
Talk to your dr. You are your best advocate. Make him understand. Keep a pain journal. Whatever it takes to get him to listen. If he won’t then find a new dr who will listen!
I have had SEVERAL docs before I found one in nyc that listens to me.I live upstate and I take the almost 2 hour commute to the city because most docs dont listen or dont care. Its horrible the way we are treated when they should know everyone is different and the disease goes in so many directions they should be more understanding. .and take the time to research lupus and completely understand it…not just RA which I found to be their true speciality
I had to stop Celebrex and was in a lot of pain. A friend told me about Osteo BiFlex and I have been taking it for months now and it is working as well as the celebrex did. We are all so different but it may be worth a try. The Cymbalta and Lyrica combo I started since then has done wonders for the fibro and some help with the neuropathy,
I suffer from fibro and perhaps from lupus and I'm usually in pain somewhere or another. Enough pain to suck away all of my energy, despite the meds I'm on. My family understands, sort of, but gives me a lot of grief because I can't get around much.
I use Lyrica to reduce my pain and it does work because if I miss a dose, I end up feeling miserable. I''m not sure if there's any medicine out there that totally addresses our pain. I'm also on Effexor for depression and pain (it works along with Lyrica.) I'm also on Nortriptyline to relax my muscles at night, which also helps to reduce the pain.
Everybody is different so I would suggest that you ask your doctor for another combination of medicine if the current combination isn't working for you. I'm not a doctor though, so bear that in mind.
My pain is different nearly everyday. It can range from a 3 to a 9 at any time. I’ve forgotten what it’s like to not hurt. After telling my rheumie for at least a year that the pain can be unbearable, I finally sucked it up and went to my pcp for pain medicine. My rheumie has tried numerous things to help the pain, i.e., salicylate, salsalate, lyrica, neurontin,… Last time I saw her, she said she’s at a loss, and is going to refer me to pain management. I guess what I’m trying to say is, I feel your pain, no pun intended.
I don’t think doctors want to be in the pain management business anymore with the new laws and restrictions. My Rheumy was always recommending that I either ask the neurologist or the other doctors… I am starting pain management in a couple of weeks, I am hoping for alternatives to oopiate, like tigger point therapy and massage. Celebrex and Cymbalta help a lot, but the other ones did nothing. Like you said, everyday is different, today I could not use my left hand, as the thumb was so painful, I could not move it (left handed). The imflamation in the muscles from the toes to the head, are pretty constant, but Celebrex takes care of most of it. Just concerned about taking 400mg a day for a extended period…
Cymbalta did not help me much. When my doc changed my antidepressant from Cymbalta to Pristique, I had to add Gabapentin for Fibro pain. It has worked for me. Now my pain is mostly joints. Aleve helps some along with the Acthar Gel injections. I am not pain free but it is manageable most of the time. The fatigue and lack of energy is what is killing me. My body is getting weak from non-use.
Hello all. After having been on numerous meds, and not tolerating any of them, my rheumy referred me to pain management. I have my first appt tomorrow; however, my rheumy also made app't 6 wks ago with endrocrinologist and therein lies a problem far worse than lupus. I have secondary adrenal insufficiency caused by years of taking prescribed steroids. Consequently, my adrenals are not producing cortisol. I don't want to go into all that AI entails, but I am fighting thru the depression of yet another flipping disease and having to carefully monitor my health so that I don't go into adrenal crisis...which happened 4 weeks ago and spend 5 dys in ICU. So, my friends, I have no answers...just be careful with the dosage of steroids. I thought that I was being well taken care of, but have not realized no matter how good the specialist, it is of utmost importance that we take an active role in our health. Sorry for the rant. I apparently am more upset than I realized :) Have a good day and pls keep in touch.with your progress.
Steinfadt1 said:
My pain is different nearly everyday. It can range from a 3 to a 9 at any time. I've forgotten what it's like to not hurt. After telling my rheumie for at least a year that the pain can be unbearable, I finally sucked it up and went to my pcp for pain medicine. My rheumie has tried numerous things to help the pain, i.e., salicylate, salsalate, lyrica, neurontin,... Last time I saw her, she said she's at a loss, and is going to refer me to pain management. I guess what I'm trying to say is, I feel your pain, no pun intended.
I have been taking celebrex and cymbalta for years. I take 200 mgs. celebrex twice a day, when I cut back to 1 a day the pain is worse. I also take vicodin 3 times a day. I have a lot of back/neck problems and my left hand thumb is very painful too.
I cut back to 30 mgs of cymbalta and I seem to be doing ok so far. Lupus does change all the time so you sort of have to take care of yourself! Good luck!
My left thumb just started hurting bad, yesterday, now my right one is also, Celebrex is doing nothing for it. When I thought Celebrex had stopped working, I went off it, and it was unbearable. I will see what the Pain Management clinic has to say about meds. In the past, I just took Vicodin when I needed it, maybe a couple of times a week, but the doctors are afraid to prescribe them much anymore, and they look at you like you are a criminal, when you go to the pharmacy.
The Rheumy was going to up my Cymbalta to 90mg, I told her that 60 was fine for now…
Jon, do you work with your hands? I did and it just makes it all worse. I try to wear the thumb braces and that seems to help especially when you sleep. Have you had x-rays of your hands? They say it is arthritis and the joint is deteriorating, there is a surgery they can do but the recovery is 6 months! Let me know how the pain management goes.
I have lupus/fibro too and other overlapping syndromes too. Celebrex didn't work for me and I've tried Cymbalta. Just because you don't have organs damage from lupus doesn't make it less sever. I also don't have organs involved in mines either but I am constant level 8 pain and exhaustion. I wish it was fatigue. I could sleep for 12 hrs and still feel like I have been hit by a freight train. I haven't tried Cymbalta but I doubt it would work. People think because we don't sick that we are not sick. It doesn't matter what your lab result say, you know your body better than anyone. It is not in your head.asia64
Geneva, yes, I have been doing electrical work for many years, the thumbs started acting up during the last rain. X-rays and ultrasound imaging, the OA doesn’t look that bad, some synovial pooling in the thumb and wrist joint. The Rheumy thinks it is mainly SLE Lupus.
Cymbalta only helps my neuropathy pain, not the joint pain. Since Celebrex is a NSAID it helps with inflammation.