Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hi All, this is my first post, although I've been looking through the posts here for a few weeks now and am very thankful for this group!
I started this journey last November, I woke up and couldn't step down on my left foot. I went to the foot doctor and she said I had bi-lateral planter fasciitis, after a few weeks in soft casts and things didn't get better she put me in physical therapy and said I probably needed custom orthodics because the inflammation wasn't going away and things were not getting better. Fast forward to March of this year, I've been upgraded from soft casts to hard casts and I finally feel like I'm getting better and I snap a tendon in my foot. My foot doctor then ordered a slue of tests and began to suspect it was an auto immune disease. All of the tests he ordered came back normal, and about two weeks later I snapped another tendon and then another two weeks later another tendon. He was fairly certain that even though my tests were negative, that I had an autoimmune disease. He fast tracked me through a doctor in the area and he had ordered different blood tests and xrays.
I was first diagnosed with ankylosing spondylitis and was given an NSAID to start to see if things would improve. Shortly afterwards he put me on sulfasalazine because the NSAID was giving me migraines. I wasn't happy with that doctor's bedside manner, he's an older doctor (in his 70s) with limited hours who wasn't very friendly and did not want to answer any of my questions, and I just thought I'm in my 30s and I want to find a doctor that I can ask questions and be comfortable with. I ended up finding a new doctor for a second opinion who I ended up liking a lot. I saw the new doctor in June and he reviewed my bloodwork and disagreed with the ankylosing spondylitis diagnosis and said he believed that I had RA. He kept me on the sulfasalazine and retested me in July to see how things were progressing.
This is where things get frustrating. My bloodwork shows that my RA factor went back down to normal levels, which is amazing, but my CRP level tripled in two months. He took me off the sulfasalazine immediately and put me prednisone and 20 mg methotrexate/oral once a week. I took the methotrexate once and reported back to him how it went. I didn't think it was horrible, but when I told him the side effects and that I had a delayed nausea, which we think now was also from the amount of pain, he took me off and started the process to put me on Enbrel.
I start the Enbrel this week, I just need to figure out when - I've read some stories, is it that bad? what are peoples side effects? I'm going to be taking the 50mg sureclick. In addition to that he has me on 15 mg of prednisone a day. He just put me on tramadol 300 mg because the pain was causing me to be physically sick, and I'm on a muscle relaxer at night so I can sleep without waking up with pains.
I've noticed that my arms are cracking a lot lately. Is that normal? It seems like sometimes everytime I move they crack. I'm afraid that they are going to start to hurt.
Thank you everyone for reading this long post and I look forward to joining the community.
I started this journey last November, I woke up and couldn't step down on my left foot. I went to the foot doctor and she said I had bi-lateral planter fasciitis, after a few weeks in soft casts and things didn't get better she put me in physical therapy and said I probably needed custom orthodics because the inflammation wasn't going away and things were not getting better. Fast forward to March of this year, I've been upgraded from soft casts to hard casts and I finally feel like I'm getting better and I snap a tendon in my foot. My foot doctor then ordered a slue of tests and began to suspect it was an auto immune disease. All of the tests he ordered came back normal, and about two weeks later I snapped another tendon and then another two weeks later another tendon. He was fairly certain that even though my tests were negative, that I had an autoimmune disease. He fast tracked me through a doctor in the area and he had ordered different blood tests and xrays.
I was first diagnosed with ankylosing spondylitis and was given an NSAID to start to see if things would improve. Shortly afterwards he put me on sulfasalazine because the NSAID was giving me migraines. I wasn't happy with that doctor's bedside manner, he's an older doctor (in his 70s) with limited hours who wasn't very friendly and did not want to answer any of my questions, and I just thought I'm in my 30s and I want to find a doctor that I can ask questions and be comfortable with. I ended up finding a new doctor for a second opinion who I ended up liking a lot. I saw the new doctor in June and he reviewed my bloodwork and disagreed with the ankylosing spondylitis diagnosis and said he believed that I had RA. He kept me on the sulfasalazine and retested me in July to see how things were progressing.
This is where things get frustrating. My bloodwork shows that my RA factor went back down to normal levels, which is amazing, but my CRP level tripled in two months. He took me off the sulfasalazine immediately and put me prednisone and 20 mg methotrexate/oral once a week. I took the methotrexate once and reported back to him how it went. I didn't think it was horrible, but when I told him the side effects and that I had a delayed nausea, which we think now was also from the amount of pain, he took me off and started the process to put me on Enbrel.
I start the Enbrel this week, I just need to figure out when - I've read some stories, is it that bad? what are peoples side effects? I'm going to be taking the 50mg sureclick. In addition to that he has me on 15 mg of prednisone a day. He just put me on tramadol 300 mg because the pain was causing me to be physically sick, and I'm on a muscle relaxer at night so I can sleep without waking up with pains.
I've noticed that my arms are cracking a lot lately. Is that normal? It seems like sometimes everytime I move they crack. I'm afraid that they are going to start to hurt.
Thank you everyone for reading this long post and I look forward to joining the community.
The general consensus around here is that the autoinjectors cause more discomfort than just the plain syringe, but you'll be fine. Enbrel is way better than Humira in any case- Humira itself burns.
Most folks have few if any side effects with Enbrel. Just find your courage and do it! If you're not used to injecting yourself it can take a little getting used to, but you'll be an old pro before you know it. Do you have it in hand, or will you be doing the first dose at the doctor's?
During flares/disease activity - i too had little success with tramadol. Went to coated aspirin for several years since my stomach couldn't handle narcotic pain meds anymore. Then I found celebrex - it works wonders!
My advice is to also keep a journal of what you eat and drink as well as your symptoms. See if any patterns emerge after a few weeks. Many discover they have trigger foods and can decrease symptoms by avoiding them. Everyone's triggers are different.
Good luck in your journey.
Altoclef - I have the shots in hand, my sister will administer because my doctors office told me that I'd be the one doing it, they would guide me and I'm not up to that point yet and I'd rather be at home then having to travel home afterwards.
Buddhacat.
1) Enbrel without MTX, correct. My doctors current plan is to see how my numbers are after the first month of just the enbrel and then possibly add a second medicine, he isn't a fan of MTX, so probably won't be putting me back on that but who knows.
2) they crack like an old person, like you hear them crack (not even sure the joints, just like my bones). its been mainly in my arms and my wrists and elbows have been sore, so maybe that is where they are cracking - not sure. Im trying to dismiss things a bit so I'm not too paranoid.
Regarding the other medications, now that I'm at actual computer I can give you a list of what he has me on:
50 mg Enbrel once a week
15 mg Prednisone daily
80 mg Prilosec daily ( 40 mg, twice a day)
300 mg tramadol daily (in the morning)
10 mg cyclobenzaprine daily (at night)
He gave me the muscle relaxer before prescribing the tramadol because I was in so much pain that i couldn't even get to sleep, and then I'd wake up in the middle of the night with spasms. I told him that me sleeping is still a problem but he thinks the enbrel will help - honestly, I think the prednisone has me hyped up and edgy. I need to find a new primary doctor that I like to kind of see for all other issues and get one something for sleeping, and maybe not have to take the muscle relaxer.
2scicrazed - thank you for the journal idea - I did download a few apps to start documenting things - I need to get better about it - I suppose I've still been in denial about having this disease and thinking its just a phase.
I think he should've given you more than one dose of mtx before stopping unless the side effects were severe/allergic reaction.I've taken it for about 4yrs now and it's helped a lot. It's been around forever for RA treatment and usually takes a good 12 weeks to be effective. Its also dirt cheap compared to bios. Enbrel/biologics tend to work better when taken with mtx. As long as you can tolerate both. Normally they try a new med for about 3-4 mo before changing to a new one.
I'm confused about the need to be at the office for the Enbrel shot?? Are you talking about driving home afterward? The side effects from Enbrel are minimal if any. If I didn't rotate my legs each week & see the bruise I wouldn't even know where I injected :) The thighs or stomach are the least painful injection sites for me. Its over in about 20 seconds & you get on with your life. I took it for about 6mo and Humira for a year. No issues with either one.
One last thing about your med list. My PM prescribed me tramadol & my rheumy gave me flexeril. When I had them filled the pharmacist said they are contraindicated & shouldn't be taken together. She called the drs it was changed to baclofen. Baclofen doesn't tend to make you tired like flexeril does though but its effective for spasms. Zanaflex works on spasms pretty well too. I would definitely ask a pharmacist about taking tramadol & flexeril together just to be on the safe side.
Your joints cracking sound like crepitus and is pretty common. I forget the science behind it but there is a reason.
Take care & I hope you find your magic cocktail of meds soon. Trying meds & waiting on the to work is often the most frustrating part.
Emerald - interesting analysis - definitely something I'll bring up at my next appointment. My RA factor was positive before and they did xrays of my lower spine and didn't the new doctor didn't think it was AS, given that its affecting other joints and now my knees (my left knee has lost most of the cartilage under the knee cap) he went with the general RA over AS. I'm not sure he was ever a fan of MTX and I was having some side effects and he thought they would get worse as the dosing built up. I believe he put me on it to get through the insurance obstacle. As far as cost, Enbrel actually has cost me nothing with insurance and the Enbrel co-pay card. My insurance co-pay would be $20 a month and then Enbrel picks up the rest. Hopefully the insurance pays for the full dosage, if not then there is a different story/bridge to cross.
Tonight is the night - I'm going to finally just do the injection because we have the three day weekend and I can veg and watch movies and sleep - so hopefully things aren't too bad.