View Full Version : Why, with all the meds, do I still hurt?

01-05-2011, 10:33 AM
This Post is actually from terriaw44. This was posted as a blog and I am moving it over here (at her request) so more people will see it


I have been reading some blogs here and see alot of different things going on. Some people are, like me, have joint pain and fatigue everyday all day. Some people are running marathons. Some people have good days.

Are we all on the same kind of meds? Why is it that I have been taking all these meds (and changing meds) and I find no relief at all. Would I be worst off if I weren't taking any? Do people in remission still take all the meds? And why do they have flare ups with the meds?

I'm just wondering if the meds do anything!


01-05-2011, 11:10 AM
I understand exactly how you feel, terri but since I don't know what meds you are on, or how long you have been on them, it is kind of hard to give you an answer. I can tell you that in my case, even though I still feel bad, I would feel worse without the meds. It took the plaq. and prednisone about 5 months to really work on me. I didn't even know it was working until one day I figured out that it had be several months since I had any rashes. I am currently on 11 meds, for all different things, and without them I don't know where I would be now. Sadly autoimmune diseases are not like most things that have a cure and it is only a small portion of us that actually have a true remision period. Many of us do move from a more severe case of Lupus to a milder case once on the meds but it does take awhile. To answer your question about meds during remission, the majority of people have to take some kind of meds but each of us is different and our bodies all respond differently. That is really the answer to your question. We have to go through the changing of meds because what works for one person does not work for another. The doctors have to find what works for you. Until then (and after) just know that we are here for you

01-05-2011, 11:29 AM
Hi Terriaw44:
I am sorry to hear that you are getting no relief from your medications. One thing that you should know is that every person's Lupus is different. None of us suffer from the exact same symptoms and we do not all take the exact same medications.
There are some medications that are somewhat standard, but the dosage and instructions may be different. Some of us have Lupus without any internal organ involvement, some of us have almost all of our internal organs involved. Some of us do not have the arthritic pain, but some of us have pain in every single joint and muscle. Some of us have central nervous system involvement, some of us have only skin involvement. I could go on, but as you can see, Lupus can come in hundreds of different forms and there is no way to put it in a precise category that can answer your questions specifically. I'm sorry, I'm sure that this is not what you wanted to hear and that you wanted specific answers.
You did not say what medications you were taking or how long you've been taking them. There are many medications used for Lupus that are cumulative. This means that they have to build up in the body before you will see any significant results. This can sometimes take weeks to months. Also, there are many of us who have had to change our meds and their doses over periods of years before we finally found the combination that gives us the relief that we need. Many of us still have not reached that point and, like you, are still experimenting with our medications and their dosages. Without knowing what you are taking or how long you've been taking them, this is the best response that I can give you..again, I'm sorry that it is not exactly what you needed.
I am considered to be in remission (or actually downgraded to Mild Lupus). I, currently, do not take any medications for my Lupus (I should mention that I have severe Fibromyalgia also and am taking lots of medications for that - some of which are the same as some of the medications prescribed for Lupus). Remission does not always mean a complete absence of symptoms, nor does it necessarily mean that the disease has gone away. There are those lucky few who do have complete remission, but it is important for you to know that this does not happen all of the time. For most of us, remission merely means a period of time when our symptoms are less active and, therefore, we can reduce some of our medications. Even though I do not take medications for my Lupus, I STILL suffer from Lupus flare-ups because the disease has never really gone away..it is just not as active as many other's with the disease! So, even in my supposed state of remission, I must still take all of the precautions as a person with very active Lupus.
We live our lives doing all that is necessary to avoid flare ups, regardless of the type of Lupus that we have. That is part of how we manage our disease.
I wish that I was able to give you concrete answers, but it is impossible to do with this disease. However, I do hope that I was able to help you a bit. Please let us know if you need anything further and feel free to ask any question that you may have, we are here to help you as much as we can. I wish you the very best :-)

Peace and Blessings

01-05-2011, 03:22 PM
hi terri,

i can't add anything to the great information that mari and saysusie provided. i just wanted to shop by and say "hi" and to tell you that we are here if you ever need compassionate shoulders.

01-05-2011, 05:05 PM
Hi Terri,
Mari and SaySusie have said most of what any of us could tell you.
As for me, I'm only on MTX, Plaquenil and pilocarpine. I didn't take my Methotrexate shot for two weeks because we were traveling. I've noticed the skin problems and some fatigue coming back. I hate the way the MTX makes me feel the next day, but it's worth it to be rid of the rashes and fatigue.
I'm still in pain even when I'm taking all my meds, but I know that I would feel much worse without it.

xani's mom
01-05-2011, 11:09 PM
Hi Terri-
All these wonderful ladies have given you a lot of good advice. I sometimes feel a lot like you, but recently I thought " the side effects of theses meds have to be worse than the actual disease" and I quit taking everything. DON'T DO THAT! I was great for about 6 or 7 days and then the sky fell in. Complete swollen joints, kidney infection, couldn't walk, blood pressure spiked do to pain. It was a bad idea, and the doctors were not impressed at my ambitious decision to take care of my own medical problems. The truth is I probrably damaged my kidneys worse in the long run. Most of our auto-immune suppresents take so long to build up in your system, it is a real pain in the ass to wait 2-3 months to wait for a med to work and then be told it isn't so you have to try something else. The meds don't take nearly as long to decrease in your system and bring all your pain right back, that's when you remember why you take so many pills everyday. I am kind of ranting now, but I read about a famous singers daughter who was diagnosed, they immediately put her in the hospital, controlled her pain, and tried multiple meds until they found exactly the combination she needed, and now for the most part she leads a normal life. Bless her for that I and genuienly happy for her. But those of us with HMO, or even worse insurance don't get that kind of treatment so it can literaly take years to find what works, and unfortunately that can suddenly stop working down the road for no reason. I wish you all the luck and if there is anything I can answer for you, don't hesitate.