Hi All - I saw my rheumatologist yesterday and she said bone scan showed very little inflammatory arthritis - in wrists and ankles. She wanted to send me to get an EMG, however, I have declined. My issues are almost always in joints (ankles, wrists, knees, elbows, feet, shoulder, hands) and usually the only time it radiates away from joints is when I've been too active with yard work or biking/walking. Can't joint pain that is really bad radiate into other areas other than joints? I have a few herniated discs that flare every now and then in my lower back and neck that could cause nerve pain but I don't think that's the issue. I have decided to quit taking gabapentin and percocets at night for fear I'd get hooked on them and rely on them to sleep. I am currently on my 4th Enbrel shot - hoping for some relief. I am going to keep a daily journal - logging how I feel, how I sleep, what I eat, activity, etc to hopefully shed some light. I feel pretty good today - got about 5-6 hours of broken sleep on no meds last night. I took some aleve today to maybe help with pain during the day. I feel pretty good all things considered. I mean my ankles hurt a little and are stiff when I walk and my knees hurt and crunch when I kneel down but would Enbrel even take all of that away? How do you know if Enbrel is working? I will continue Enbrel for another 4 weeks until my next RA appt. and at that time we will review - she said the next shot will be Orencia. Does anyone have any experience with that? She also wanted to start me on Cymbalta for pain at the next visit - any thoughts on that? Thank you for your review and help. I am really starting to get discouraged and a little depressed. I'm embarrassed because I really try to stay so positive and I have so much to be thankful for. Just having a hard time.
Hi guido, I think the key issue with this disease is that the pain causing inflammation isn't always in the actual joint itself but rather the tendons, ligaments and bursae surrounding them ..... hence a bone scan may show very little.
I'm now on my second biologic, the first was Humira which didn't help me at all, and the second is Simponi and this is helping me alot. I had a really good response to the first monthly shot and then slid back a bit towards month end but each subsequent dose is bringing subtle but continued improvement, this is week 17. My knees haven't responded much/at all so last week I had them injected with steroids, which has given me 75%+ improvement so far .... still a bit crunchy and I can't kneel but predominantly pain free.
I've been fed up, discouraged and depressed too and it all drags you down but hang in there, it's still early days on Enbrel. Oh, and I've just recently discovered just how good pain relief gels with ibuprofen or diclofenac can be to help with nagging night-time pain. If you've not given these a try it may be worth buying a tube ..... was a bit of a revelation for me.
Good thought about the gels, Jules. They are OTC in Canada, but in the US, Guido would need a prescription. They work well, though, for areas where the inflammation is close to the skin – knees, elbows, feet. Less good for hips (my hips, anyway, hahaha)
I am so sorry that you’re having such a rough time. I agree with the thoughts on the bone scan. It would not show any of the information at the tendon insertion sites. What would show that would be an MRI. Until the condition is better managed, you will still have tenderness at those points. That is pretty typical of PSA. It sounds like your doc maybe more experienced with LA then the other autoimmune arthritis conditions. I don’t want to put your doctor down, but it sounds like she may not be very open-minded.
They Cymbalta might be a good idea, it is used to treat fibromyalgia and neuropathic pain. However, be careful with it. If it doesn’t work, it is very hard to discontinue that drug. You need to taper off of it, and may still have withdrawal like symptoms from the medication. I would feel safer taking something like Lyrica, or gabapentin over Cymbalta.
As far as the pain medication, that just needs to be your personal choice. If you’re only taking one tablet every night before bed I don’t think that there’s much risk for addiction. People who tend to have a healthy fear of addiction generally don’t end up with addiction. If the people who enjoy the feeling a little too much to have a problem. My opinion is: if the drug helps and you can safely take it, then take it. If it’s not helping you then don’t take them. At this point you need a little relief somewhere.
It took me a long time to get the treatment that I’m getting now. It also took me several doctors to get here. My present rheumatologist is my third. I absolutely love him, he listens to me, and understands and values my input. It’s good to have a healthy working relationship with your doctor. I’m wondering if your doctor is not exactly hearing you. Just a thought, and if I’m wrong that’s fine. It’s just something to think about.
I think I have said this before, but it takes 4 to 6 months to see the end results from Enbrel. I would wait 8 to 12 weeks before changing drugs. Do you have psoriasis? That’s one way to determine if it’s doing anything at all. You can’t use that to determine if it’s working for PsA, but at least you’ll know if it’s doing anything.
I don’t mean to get your hopes up, getting Orencia approved for PsA is a chore. Most insurance companies require at least two failed biologics before considering that treatment. Certainly, the doctor can provide necessary paperwork to get it approved but it’s difficult (assuming you are in USA).
As for the pain, if you have permanent bone damage, the pain will mostly likely never go away. Just food for thought.