Hello All - I am currently off work on FMLA while my doctors try to get my SLE under control. I am on a long list of medications and am struggling with side effects. I have been fighting pericarditis for about four months and the doctors put me on prednisone to get rid of it. Every time my prednisone levels drop below 15mg per day the pericarditis returns. My understanding is that as I wean off of prednisone the plaquenil will be taking over the inflammation issues and the pericarditis will stay gone. I am also on Methotrexate, indomethacin, flexeril, tramadol and of course folic acid. I also take vitamin D, vitamin B12, magnesium, and flax seed oil to address the low levels I have of these vitamins and minerals. Due to the SLE I also take allergy and asthma medications; Advair, flonase and Allegra 180. I feel like a walking pharmacy. Is anyone else out there taking a "chemical cocktail" like this. Is this mixture of meds the "norm"? I am hoping to go back to work soon, but I am begining to wonder if I will be able to work with the side effects from some of these meds. Thoughts?
No I dont. I was hoping the side effects would ease off. The nausea is bad sometimes, but it is the dizziness, blurry vision and fatigue that are kicking my butt! Today is a pretty good day, I actually just got dressed! Pretty good, it isn't even 10 o'clock yet!
freightliner said:
Do you feel well enough to work with all the side effects. I know I couldn't work just because of the fatigue.
I can SO relate. My chemical cocktail is similar to yours. I have to go to an appointment now, but I’ll comment in more detail when I get back. Hang in there. Kim
Yea, can totally relate. Prednisone, methotrexate, celexa, folic acid, pain meds (vicoden.) Then the multi vitamin, nausea meds, hair and nail vitamin, and cold/allergy meds.... Ugh. Lol. I offer to "sell" my boyfriend any drug he'd like from my pharmacy.... ;) lol. It sucks not knowing if it's side effects or the disease, but just keep swimming, right? :)
Hi. How are you managing? It sure sounds like you have a lot on your plate. I remember when I was working I had to stop taking some meds because the side effects, like nausea, were too bothersome. Now, I haven’t worked in five years and I’m on prednisone, tramadol, plaquen, methotrexate, prescription folic acid, abilify, Xanax, Wellbutrin, Synthroid, Cymbalta, Prevacid, and a bunch of supplements and vitamins, like vitamin D, fish oil, etc. I’ve tried cutting back in my meds, but then I become symptomatic, whether it be pain or depression or similar. I so badly want to come off this chemical cocktail as you put it, but it seems every time I try I feel worse. I’m barely functioning as it is with everything I’m taking. I guess I’m not offering any good advice here. I’ll just say that many people have to go through a lot before they find what combination of meds works best for them. That, combined with a healthy lifestyle, should help. I suppose it’s finding what works for us individually that’s so difficult because, even though we share many of the same symptoms, our bodies are all unique. I totally understand where you’re coming from. I hope things work out for you. Sorry I’m not more upbeat. Kim
Yep I am on 13 different medications- side effects are minimal and certainly a lot less than uncontrolled disease. When major body organs are involved it is critical to get under complete control so permanent damage is prevented or minimized. One of our crosses to bear
Thanks everyone. It is good to know that my search for the right combination of meds is not unique. I will keep moving forward, not that there is another choice :) Maybe I will get lucky and be one of the few people who does not keep the side effects!
most people don't understand what it takes to have a somewhat normal life. I take as many lupus meds as pain meds so I hear it from both sides. However, I read an article about a long distant runner who had lost his leg and was going through much the same thing.
The irony is that if it were cancer or diabetes or something more in the forefront no one would give it a second thought.
There is very much a difference between being an addict and being dependent. As someone with diabetes is "dependent" on insulin, we are "dependent" on our meds. Without CellCept, my kidneys would cease to function and I would likely die. However, an addict is chasing a "high". It's unlikely that someone that is dependent would actually get "high" as we are not wired that way! That said many people that are unable to access proper pain relief are often forced to find other means of dulling the pain which can lead to addiction. It's a terrible feeling when those we love do not understand that the meds we take are for the sole purpose of having any quality of life, however perhaps this simple explanation may help.
whathappensinvegas, I luv the way you just explained the difference between an addict and being dependent on pain meds. This is something I've been struggling with for a while because of my religion. I thought that if I wanted to farther my faith then I would have to quit taking the pain meds that give me a little quality of life. I thought because I was dependent I was an addict. I want to say thank you for making me see that there is a difference and that being dependent on my meds doesn't make me an addict. Im very grateful, thanks!!!!
I too struggled with the idea of so many pain meds until my Dr finally convinced me I needed to look at the pain medication the same way I look at my lupus& other meds, which is that I need them to treat an illness. I wear a fentanyl patch& still have to take pain pills& muscle relaxers as well, no doubt my body is dependant on narcotics& if a time comes when I don’t need them my Dr will wean me off to avoid any withdrawal symptoms. I have been called an addict by my mother in law,as well as an emergency room Dr& nurses& it is humiliating & hurtful because there is a difference,I don’t misuse my meds I take them only as directed,I never run out before time to get a new script,in fact I always have extra& an addict would not trust me, I have known an addict & even in the horrible pain I am in can never imagine behaving that way over a pill. I don’t understand it anyways because they don’t make me feel good they simply help with my pain& a Dr told me once as long as you sincerely have pain the narcotics do their job it’s people who take them without any pain who get into trouble because they don’t have that job to do.OK well hope that helped.
Hi!, at the start of my Lupus I was taking 13 different types of pills! My son would always put them in a order of time of days to take the different ones , it help me some much-at first, and the side affect went away for about 3 weeks. But then my nose started to bleed! My body went through some type of change and I told my doctor I can’t handle all the meds. So we narrowed the intake , and now every other day I take the Lupus meds and the other days I take my antidepressants, lately every thing is going well for me without side affects…Beverly L.
Thank you all for yur feedback. It is Sunday morning and my day for MTX. I will take my "chemical cocktail" today and try to be grateful that there are meds that can help with the pain and frustration of having this disease. I agree with all of you that noted the meds don’t make you feel "high" The meds are much too busy doing their work to have enough potency left over for a "buzz" I am lucky right now because I am off work for a few more weeks with time to get my meds figured out and under control. I will probably end up having to change jobs once all of this is figured out. I do not see how I will be able to continue full time at my very high stress position. That's OK though. I just want to be able to function and have enough energy to contribute to my household and visit with my family! Have a wonderful day everyone and thanks again for the feedback. I am happy to know that the side effects do mellow out!
SADLY SOME SIDE EFFECTS NEVER GO AWAY YOU JUST LEARN TO LIVE WITH THEM AND REGARDING THE PREDNISONE ASK YOUR DOCTOR IF YOU CAN TAKE CALCIUM ALSO BECUASE TO MUCH USE OF PREDNISONE CAN CAUSE OSTEOPOROSIS IT DID IN MY CASE .