So I’m currently on prednisone and it has helped my hands and shoulders and my feet but not my back at all. So I have been reading like crazy about med choices and I’m just wondering how people with mostly back pain have chosen? My brother and sister are both on embryl but neither of them have the same symptoms as I do. Just looking for some guidance. Thanks.
There are only two choices for the back - Sulfasalazine and anti TNFs (enbrel, humira, etc). You will more than likely need more than one medication to control both axial and non axial symptoms…
I have been using Indocin which is an NCAID for chest wall and rib pain since October and it has helped but doesn’t take the pain away. I also take Norco when needed and have done predisone tapers but they never help my back at all. I recently started Enbrel and it is the only thing that isn’t an opiod that has given me relief. I have had pain in my back since July and for the first time had any relief finally. MTX didn’t work for me. It helped some but the migraines and vommiting were unbearable! I have a heavy industrial job so I have to take that into consideration. Hope you find something that works well. Let me know how it turns out I am always curious because not much gets posted for back pain except for SI. Did your rheumy make any recommendations?
Humira has helped my back and hip, but physical therapy has been the most helpful along with my moist heating pad and occasionally a TENS unit. It’s usually a matter of getting the meds on board, usually including an NSAID at least to start with.
Hi Erin!
I've had back pain of all sorts. Before I started Enbrel last July, my back pain was more in the form of stiffness. If I sat down for more than a minute my lower back would tighten up and it was hard to straighten up. I also had tightness around my rib cage and thoracic spine and it would hurt and ache when I walked for any distance. Off and on I would have bouts of acute lower back pain--a feeling of an electric shock across the top of my butt or a sharp pain shooting through my lower back from certain movements. Since I've been on Enbrel I haven't had any of those back problems. Whatever inflammation I had that was causing the stiffness and occasional pain was "cured" by Enbrel....
BUT.....2 months after starting Enbrel, all hell broke loose with my lower-real low back--through my right butt cheek and down my leg. It was horrible! An MRI showed a disc protrusion impinging my spinal cord which was causing sciatica. Luckily, with ibuprofen, rest, ice packs, heat and finally p.t., massage and mild exercise, that pain subsided. Unfortunately, while putting up my Xmas tree about 2 months later, I twisted wrong and immediately felt similar pain, but through my left butt and down left leg. That was supposedly my SI joint causing sciatica. I did all the same treatments as I did the first time, but it was 2 and 1/2 months before that pain was gone. What I have now, instead, is foot pain--we won't go into that. Except, I've been wondering if it stems from my weak, damaged back.
Despite all that pain, I still think Enbrel is working. It relieves the stiffness most for me. So, if your pain is mostly stiffness, Enbrel would probably help that. But if it's damage from PsA or other injury (I don't know why I have disc protrusions) Enbrel won't fix that. But, when my pain was acute, sitting against the really hot heating pad along with 600 mg of ibuprofen every 5 hours helped tremendously (although not completely). The pain finally just fizzled out. But, maybe some of these things could work for you. At least you have some information from those of us who have dealt with back pain and found ways to relieve it.
Good luck!
Erin, I do hope you give Enbrel a chance or a TNF blocker of some sort because like GrandmaJ said it has made the most significant change. This is coming from someone who has even had a reaction to it but continued use because even after 2 doses the fatigue went away and the back pain was good if not gone. I had to take a week off and restart injections so I was able to see just how much it was doing after skipping the dose that I wasn’t able to guage because the effects can be slow. I have a rib that inflames so badly it actually locks up and/or goes dislocated PAIN is crazy when this happens. Right now I am due for shot tomorrow and just now starting to feel it again but confident that once I have 2 weeks back in my system it will almost disappear again so there is hope if you are willing to invest in whatever med works best. This site has really shown that each one can work differently for others. It was not the overnight cure I had expected but none of them work that fast unfortunately. The side effects sound bad but honestly are less likely and less drastic than the predisone. Listen to your body and you will know what works. Good luck!
Hi Erin,
I'm the queen of back pain! I have all sorts of problems with my back. I was diagnosed with scoliosis when I was 11, had bulging discs by the time I was 20, unbelievable muscle spasms throughout my back, and lately diagnosed with sacroiliitis (inflammation of the SI) and ankylosing spondylitis!
So... These are my remedies for back pain: if it is a muscle spasm, naturally, I take a muscle relaxer before I go to bed. And if it is not very bad, it should be OK in a night or two. But often it doesn't get better. Or, if I put it correctly, I most probably had the inflammation in my lower back for a year or two and had mistaken it with scoliosis pain, because I began running to the emergency room with a locked lower back every month or so! If your back locks up (and an unbelievable pain accompanies it, like you are being stabbed in the lower back with a sharp knife every time you try to move just an inch), you can go to the emergency room and ask for a shot that will make your spasms go away. I don't know how things work where you live but we can do that where I live. But of course I only did it because even breathing made me feel like I was being stabbed in the lower back and nothing else helped. And guess what? These "attacks" have stopped as soon as my sacroiliitis was spotted and I was given a simple NSAID. I first used Indomethacin. And this month I was given another NSAID for my foot pain, diclofenac sodium, which also eased the pain in my lower back very much. But, from what I gather a lot of people have bad reactions to NSAIDs so please be careful when using them, or consult with a doctor first.
Some other things... As is the nature of this disease, if I'm not in the middle of an attack where I can't possible move, gentle exercise helps A LOT! You can try doing some gentle stretching after you get out of bed, or any time of the day really. I'm in love with yoga, I fell in love with yoga long before my diagnosis because it actually had the effect of an NSAID! It relaxed my whole back and made most of the pain go away. So I can definitely recommend yoga to you. But some stronger exercise is necessary too, so that the muscles around the spine can become stronger and there is less pressure on your spine.
So... these are my remedies in a nutshell. I hope you feel better soon...
I am going on Enbrel starting first week in April. I also have started Yoga at home so hopefully that helps too! My Doctor just said that I shouldn’t wait if I’m in this much pain because I want to be able to walk still when I’m 40. I have pain in my lower back upper back and down my legs sometimes. I have had an MRI on my neck and back with in the last year which didn’t show any disc problems or anything. Sometimes I have bad sciatic pain and sometimes I have pain and sometimes just stiff but basically by the end of the night I feel like I can’t hold my head up anymore because my back and neck hurt so bad. Hopefully Enbrel helps. Also for the ladies anyone have really bad back pain flare ups during menses? I don’t know if it’s extra inflamation if Enbrel would help that or if you ladies have another suggestion. I just do ibuprofen for now. Thanks for all the responses!
Thumbs up, Erin. One of the things that we know about PsA is that early and aggressive treatment gives the best prognosis.
Periods are but a memory for me, but what you say makes sense. Back in the good old days when I had estrogen but no PsA, I used to get cramping pain that went right down my legs into my feet. I remember that the solution was a medication called Ponstan. It was like magic! I just looked it up, and guess what: mefenamic acid (Ponstan/Ponstel) is an NSAID! An anti-inflammatory. After I no longer had the need for Ponstan, but I was still undiagnosed with PsA, I used to have leg pain, and I remember thinking that it was very similar the menstrual cramps that I used to have.
So I think there might be something in your line of thought.
Hi Erin! You asked about bad back pain flare ups during your menses. I tend to be at my greatest levels of inflammation and pain in the premenstrual period. Not every month, but some. If an anti-inflammatory is working for you, great. You've mentioned this to your gyn as well? Back pain during your cycle, I would want to make sure that there isn't anything else going on too.
Erin said:
I am going on Enbrel starting first week in April. I also have started Yoga at home so hopefully that helps too! My Doctor just said that I shouldn't wait if I'm in this much pain because I want to be able to walk still when I'm 40. I have pain in my lower back upper back and down my legs sometimes. I have had an MRI on my neck and back with in the last year which didn't show any disc problems or anything. Sometimes I have bad sciatic pain and sometimes I have pain and sometimes just stiff but basically by the end of the night I feel like I can't hold my head up anymore because my back and neck hurt so bad. Hopefully Enbrel helps. Also for the ladies anyone have really bad back pain flare ups during menses? I don't know if it's extra inflamation if Enbrel would help that or if you ladies have another suggestion. I just do ibuprofen for now. Thanks for all the responses!
Me, me! I have horrible cramps and back pain... It started years ago when I was diagnosed with IBS, which I now think was also inflammation. Not only my belly but my whole back and legs hurt for 24 hours. Also, just like Stoney mentioned, I tend to flare in the premenstrual period.
Oh, and fun fact - years ago I had a PAP smear test done, and there was inflammation in my uterus! It was highlighted with a yellow pen :D But the doctor didn't care for it much. I don't know, maybe it's a common thing. But your question made me remember it years later.
I also have endometriosis, which was discovered when I was having an MRI done for my SI. So that also might be the cause of my extreme pain during that period. I think it can also cause back pain? But I don't know how long I've had it. Probably years but I can't be sure.
Also, just like Seenie, I realized a few months ago that I was using an NSAID for my pain during that time. It was actually a drug that was given to me for my back pain, which I eventually realized worked for my cramps :D
Omg, LL, as I started reading your comment I was thinking, I wonder if she has endometriosis? Then you answered my question. Idk much about it, but I thought I read that it can cause tremendous pain in other places besides the lower abdomen or uterus. Omg, maybe that is what's causing some of your pain!
I have questioned whether or not I have endometriosis myself a few times. Seems like ever since I had my daughter I’ve been having trouble ( it’s been 3 years). Guess it’s time to look into that too. Thanks for the input!!
ladylazarus said:
Me, me! I have horrible cramps and back pain… It started years ago when I was diagnosed with IBS, which I now think was also inflammation. Not only my belly but my whole back and legs hurt for 24 hours. Also, just like Stoney mentioned, I tend to flare in the premenstrual period.
Oh, and fun fact - years ago I had a PAP smear test done, and there was inflammation in my uterus! It was highlighted with a yellow pen
But the doctor didn’t care for it much. I don’t know, maybe it’s a common thing. But your question made me remember it years later.
I also have endometriosis, which was discovered when I was having an MRI done for my SI. So that also might be the cause of my extreme pain during that period. I think it can also cause back pain? But I don’t know how long I’ve had it. Probably years but I can’t be sure.
Also, just like Seenie, I realized a few months ago that I was using an NSAID for my pain during that time. It was actually a drug that was given to me for my back pain, which I eventually realized worked for my cramps
I'm new to all of this also, Praying for you.
I found out that I had endometriosis when my last baby was four years old. I waited a long time to have a
hysterectomy. It was a bad decision on my part because your organs will start attaching to each other, get with your doctor to rule it out.
Erin said:
I have questioned whether or not I have endometriosis myself a few times. Seems like ever since I had my daughter I've been having trouble ( it's been 3 years). Guess it's time to look into that too. Thanks for the input!!
ladylazarus said:Me, me! I have horrible cramps and back pain... It started years ago when I was diagnosed with IBS, which I now think was also inflammation. Not only my belly but my whole back and legs hurt for 24 hours. Also, just like Stoney mentioned, I tend to flare in the premenstrual period.
Oh, and fun fact - years ago I had a PAP smear test done, and there was inflammation in my uterus! It was highlighted with a yellow pen :D But the doctor didn't care for it much. I don't know, maybe it's a common thing. But your question made me remember it years later.
I also have endometriosis, which was discovered when I was having an MRI done for my SI. So that also might be the cause of my extreme pain during that period. I think it can also cause back pain? But I don't know how long I've had it. Probably years but I can't be sure.
Also, just like Seenie, I realized a few months ago that I was using an NSAID for my pain during that time. It was actually a drug that was given to me for my back pain, which I eventually realized worked for my cramps :D
I often have back pain for the first day or two of my period - always have, since before PsA. Ibuprofen (NSAID) does a good job on it most of the time for me - and it certainly feels like inflammation. I’m unsure if it’s actualky inflammation in my back, or that the swelling is putting pressure on my back (I still remember that after two surgeries to remove a nasty but of my bowel in under a week, the thing that hurt most was my back - not the twice-cut surgical scar - it’s amazing how much pressure can be placed on it by other things going on in that region!)
Yep I would recommend you getting it checked. I have some icky sticky stuff going on inside just like kelleyD mentioned. Though both of the doctors I've been to didn't think I needed intrusive treatment. One of them actually didn't even think I needed to try medical treatment. The other said we should try birth control pills and see if they work or not, apparently they work for some. I was supposed to begin treatment this month but by the time I had my period I was so overwhelmed by the amount of medication I was taking, I didn't even want to begin birth control pills - it was just one more pill for me and I couldn't bear the thought of it. So I pushed it to this month.
Go and see what your doc says. Like Jen said, there are a million things that could be the cause of your back pain during that time. I always thought "well, that's the way it is, everyone has cramps, I can't do anything about it" until we saw those nasty things on the MRI. If anything, my periods will be less achy with the treatment!
Erin said:
I have questioned whether or not I have endometriosis myself a few times. Seems like ever since I had my daughter I've been having trouble ( it's been 3 years). Guess it's time to look into that too. Thanks for the input!!