I'm in a pretty bad flare right now. I'm on weekly shots of humira, plaquenil and went from 7.5mg of prednisone to 30mg. Its been two weeks and its not letting up. My hands are the worse, followed by feet, ankles, knees, chest, eyes (uveitis)) and hips. My hands are SO swollen and painful.
This doesn't really show the deformities starting but you can see the swelling. Nothing is helping. I tried the lidoderm patches, wrapping them in ace bandages, high amounts of vicodin, nothing makes the pain ease up.
I work an office job and can't do anything. I can't file or write, nothing is getting done. The pain is so constant and screaming so loudly. What do you guys find that helps with pain like this?
Go back to your doctor. With those amounts of meds and no response, he needs to try something more aggressive. You must go in to see him. He might need to put you on a time off from work, but if 30 mgs of prednisone are not touching this, then no amount of advice we can give you here is going to help. Call or get to your doctor. Preferrably get in there and show them how bad you are. I have called the doc and she said that because my blood work is fine and I'm already on strong medications, there isn't anything else she can do right now but let this pass. Am I the only one who swells up so? I had x-rays done in June and I do have some bone erosions in my fingers, toes and knees. My next appt is Oct 26. I don't understand how I can have so much swelling and pain and my sed rate is only slightly elevated, my ra is negative and my c reatcive protein is normal??I would say your meds are not working for you. I would also say your Doc is not working for you either.
Reality and blood tests do not always match up! According to my blood work there is not a thing amiss with me either!
This is the second rheumy I've seen. She has suggested the mtx but I've already had 5 miscarriages and may want to try again so I've held off but I can not go on like this.
I just don't get how we can have normal blood work and have so much swelling, pain, fatigue, etc...
I wasn't sure how they would go about cortisone injections in my hands? They hurt all over, I'd have no idea where they would start injecting?!! I had cortisone in my hips and ankles before but I could pinpoint the pain, now, my hands and wrists just plain hurt like hell all over!
They just give you a depro-medrol (I think) shot in the arm - it is a big dose taken just once. Works body wide just like the pills - not like cortisone injected into a joint space.
For some people the shot works way better - I think something must happen to the pill form as it goes thru the gut that doesn't let some of us get relief from the pill form.
When I'm really awful I spend a lot of time in a hot bath. I bring a book and light a candle and even turn on music to try to relax and escape the pain a while. It really seems to help me even if I do have to get my husband to help me out of the bath sometimes.
You can take hot baths and still have babies....
Hi Michelle,
Your hands looks like mine did when I had my first flare and did not even know I had RA. I had it in both hands. They where extremely red and hot. The amount of swelling was so severe that I thought my skin would rip.
The first thing they had to do was get my hands back to normal. I was given a water pill to see if they would go down. At first they didn't but with time they did some what but they had to add Naproxen and Prednisone to the water pill. Within a few days my hands went back to near normal. It took 10 days for all of the tissue to finally go down all the way. My Doctor, not my RD, said to me that I just had my first flare with RA. Your hands will not go down by themselves, you may need to see another Doctor, preferably while your hand is still swollen. Had you thought maybe going into the ER and telling them how bad they are hurting you. They might be able to do some thing for you now. It's worth a try.
Also ask about (CTS) Carpal Tunnel Syndrome, that also will cause hands to swell to the point that yours is at now.
I hope you get some relief very soon as I know how painful this is for you.
Oh, I didn't know there is a steroid shot that will help all over!
I so wish for a nice, big bathtub!! Our house is old, very old, built in 1922! The bath was replaced sometime in the 60's and than had a bath liner thingy in it so its very shallow and little. I'm 5'8 and 175 pounds-I don't fit real comfortably in it! My nightly ritual is taking 2 vicodin's as I leave the office and go home and stuff a towel under the bathroom door and take a shower as hot as I can stand it. I have to let my long hair air dry because I can't hold a blow dryer that long! Than, I head to my recliner where I have FOUR heating pads! They all have ties on them and my hubby ties on around each foot and each hand. There I sit until bedtime.
This may sound silly by try to ice your hands then alternate with the heat. I have both ra and pa in the hands, and sometimes the swelling is just terrible. The palm of my hand, at times, looks like I am holding a baseball!!! lolol You need to see another rd, this wait and see deal isn't going to work. I was on the lidoderm patches, arava and enbrel, with naxporin for pain. I also had to wear themb splints which helped alot, it does take a little whil for the swelling to go down once you are on the right meds. If this dr continues with the wait and see approach find another rd or have her send you to a hand splecialist for a second opinion. meme
That picture makes your hand look like it is puffed up all over Waddles (smart cookie) may be right about the water pill. And she also noticed you don't have an nsaid on the list. The right nsaid will help with swelling, stiffness and pain quite a lot.
Do you have a good GP? They are worth their weight in gold. I can't get in to see my rhuemy - always booked way out. My gp tries to leave an hour free every day to see folks quickly...if I call in the early morning she'll sometimes see me that afternoon.
Michelle,Thanks girls! I ended up taking 30mg prednisone this morning. I slept with my hands wrapped in a heating pad all night and they are a little less swollen. I will see how they do over the course of the day. I was once on indomethician but it tore up my tummy. I also have IBS, irritable bowel syndrome and have constant diarrhea and all the nsaids make my tummy so much worse.
Its funny, most people with ra say it worse in the am. My stiffness is definitely worse but my hands especially swell up more over the course of the day.
If the swelling was from water retention, would the swelling than be also in other places? My ankles are definitely puffy but not like my hands. My ankles, heal tendons and where my toes join my feet are really painful. How long does a "normal" flare last? This has been going on now about 2 weeks
You don't have to have puffiness everywhere to have edema, if your job is a sit down position, then the edema may show more in your hands. You can drink caffienated tea and lots of water to hwlp with the puffiness. Tea is a very good and natural dieritic. memeI agree with everything everyone has posted. I had very good luck having individual joints injected - I have to say, much better than the whole body injection - but either cortisone shot avoids your stomach and should help you. And fire that RD. That's just inexcusable. I've never had a doctor say wait & see.
Michelle, I have had swelling like that too and all normal labs. I cringed a bit when I read the post about your 4 heating pads and sleeping with the heat all night...ICE ICE ICE! I know it doesnt sound very appealing, but a cold pack does wonders for that kind of swelling. You got some great advice about alternating the cold and heat. I was resistant to the idea of ice at first too, and it took the insistance of a physical therapist to convince me to try it...just once and I have advocated it to my patients many times. Also, what other anti-inflammatory meds are you on besides the Prednisone? Are you taking any NSAIDS at all? Like asprine, ibuprofen, naproxen, Mobic, Celebrex?? You should be on increased doses of one of these unless you have serious GI problems or allergies that would contraindicate it for you.
One way to tell if the swelling is RA or fluid accumulation (non-RA related) would be that if it is RA USUALLY you will notice a heat at the joints, with fluid accumualtion like in CHF, the skin often stays indented if you push on it with the pad of your thumb and is NOT USUALLY red or hot. This is just a very general guideline however, and if you have concerns you should talk to your doctor more.
Good luck girl, hang in there...yes flares do last long sometimes...I hope you get some relief soon.
I do have some gi issues, I have IBS with a lot of diarrhea. I also have gastritis. All the nsaid drugs upset my tummy terribly but I did take 2 naproxen yesterday as that one seems to upset me the least. I use ice on my hips but just can't stand it on my hands or feet. The rheumy said that for acute swelling, ice is good but for the chronic swelling of a flare, the heat is fine. I have one of those home hot was spas and LOVE it!! I did my humira shot last night so hoping that will help. I also have the weekend off and plan to rest, rest, rest!! My joints are hot to the touch and a bit red, the skin looks shiny as well. I've been trying to eliminate salt from my diet just in case but I do think its inflammation rather than water retention. If its still as bad Monday, I'll call the rheumy but its not likely she will get me in until my appt on the 26th. I do think though I'm on the upside. I haven't used my steroid eye drops in two days now and my eyes have clamed down so the inflammation over all must be settling down.
Michele, the swelling is probably due to accumulated uric acid/toxic retention. Pour boiling water into a porcelain cup that contains 3gm each of Ginger and Green Tea is good for your diarrhea and gastritis. If possible avoid sensitive foods. In the case of pain and swelling I take Wild Lingzhi's formula. Unfortunately it is not available in anywhere else. Its funny the emu cream was mentioned as my mom just bought some a couple of weeks ago and told me it worked well. I haven't tried it yet. Not enough energy to go to the store! The swelling is down a little but my hands still look like the pillsbury dough boys. The pain in my right wrist is just awful. I have a soft brace on right now but its very difficult to type. I took 22mg of steroids today but I have got to reduce it even further. I swear I'm going to kill someone if I don't. I am so MEAN and irritable and grumpy and short tempered, not to mention I think I put on 10 pounds in the last 2 weeks! I guess I need to decide if I want to give up all hope of having a child and go on the methotrexate. I'm 36, already had 5 miscarriages and no children. The docs are not real hopeful I will ever be able to carry and I'm not sure I can convenience hubby to try again either. I know he wants a baby but after seeing me suffer through the previous miscarriages, he's not real willing to go there again. I'm just not ready to accept that I won't ever have a baby but I also know I cannot continue to live in so much pain all the time. The humira did seem to be helping, I'm injecting once a week. I don't think its lost its effectiveness, I think this is just a flare but its over 3 weeks now-how long can I expect it to go on if it is "just" a flare? Michele, I think the length of "flares" can be different for each person. The grumpiness and weight gain can be the steroid--that's what happened to me!! I think you need to decide about quality of life with pain. I definitely appreciate when I have a good day. When I have the energy I try to make the most of it because normally I can fall asleep at the drop of a hat. I can also relate to your want to be a mother, and I'm so sorry for you. I'm 45, had an ectopic pregnancy at 35 and a total hysterectomy at 37. I'm very sorry for your losses and can only say that the emotional pain of wanting to be a mom and not being able to is unimaginable. Support like this forum will help to get you through. Hang in there and know that there are others like you who lived through it and understand your pain and emptiness. Di
Not being able to be a mom is very difficult. None of my pregnancies were ectopic and a total hysterectomy at such a young age must have been hard for you as well. I wish adoption wasn't so expensive. We may look into it some more in the future but right now, I'm just not well enough to take care of a child as well a myself so I guess its for the best. Thanks for the support. I see the rheumy in two weeeks so if I'm still flaring, I will consider the mtx again.
Michele, What difficult decisions you face. My sister and I both had severe endometriosis, as does my daughter and my niece. I had my two children young, so I didn't miss my window of opportunity. But my sister did. She so much wanted to have children. It hurt her so much and I was not much help to her because all she could see was that I had mine. It was so sad to watch her go through miscarriage after miscarriage, fertilty attempts. She even set up our dad's original high chair with treasured pieces for her future baby. Then, one day, she put it all aside, thinking she would never have a child because they did do a hysterectomy. She remarried a few years later. And, at the age of 39, she and husband adopted a premature baby with considerable problems. I believe that because they made the choice to accept this child that they didn't have near the expense of adoption. Melinda has fetal alcholol syndrome. She is three years old right now and she has beat the odds because of her two loving parents who so desperately wanted a child. She is the joy to their lives and the dream fulfilled for my sister who makes an absolutely wonderful mother and just the one this little girl needs. So, you can't give up the dream so easily. However, you do need to be well enough to be a mother. Taking the MTX and postponing the child may enable you to have the strength and ability to raise a baby later on. My sister could not possibly love this child more if it had been her genetic one. Her little girl has my sister's temperament and stubborness. She has her dad's red hair. It is obvious they all were meant for each other. I constantly hear "Melinda stories" as she has become my mom's favorite grandchild. A lot of women with RA that have small children find it difficult to manage if their illness is not under control. My daughter is 25, and the clock keeps clicking by for her. She hasn't even found someone with whom she wants to have a child. After 3 laproscopies, they want to do a hysterectomy. I had mine when I was 30. She doesn't believe she can have one, but still desperately wants one of her own. I understand as much as possible. But, of course, one never can if you are not the person living with the dilemna. I can only say that the possiblity to have a child still remains in other ways. When it boils down to it, you only have the initial 9 months of connection during the pregnancy. After that, when they lay the baby in your arms, you're hooked. It doesn't matter whether it's carrying your DNA. The love is all that matters. I don't know if any of this helps. But getting yourself well first will enable you to care for the child that may be waiting for you. Plus, getting your RA under control, may allow you to taper down off the MTX eventually. Talking to both your Rheumy and your GYN seriously about this situation will help you look at what you true alternatives are. Thanks so much Deanna. Your sisters story was very touching. I agree, I think I would love, no, I KNOW I would love a child regardless if it was my dna or not. I have done a lot of soul searching the last few weeks. I agree, I need to get well first. My time my be running out and my body my be failing me for having my own child but if I can get well enough, I'm sure I can find my own Melinda out there somewhere. I'm afraid of the mtx side effects but they can't be any worse than the steroids I'm taking. I'm at 22.5 mg of prednisone right now,tapering down from 30 for two weeks and the flare continues. The steroids are driving me insane, the mental side effects are really weighing me down and causing some very bad thoughts. I haven't heard anyone mention "mental" side effects from the mtx-I think I could handle the physical side effects more easily than the mental baggage that goes with the higher dose steroids. I see the rheumy again two weeks from today. I was really hoping the weekly humira would be the ticket but if this flare isn't under control by than, I guess its time to consider more options. Thanks for all your support! Higher doses of prednisone really mess with my emotions. It think others have problems with even lower amounts. You might want to call you doctor and see if they will go ahead and call in the MTX for you since it takes a while to start working. I know your decisions are tough. It is most heart breaking to make these kinds of choices. You are very brave.
Susan
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