Hello everyone! I have had Crohn's disease for about 7 years now. In December 2013 while I was battling a Crohn's flare, I came down with the flu (or what I thought was the flu was told i had the flu by one of those urgent care places) Ive only had the flu one other time in my entire life and that was when I was a teenager so I can't really remember what "having the flu" felt like. I had a really high fever, was achy, and my left ankle started to swell. The really high fever seemed to pass after about a week but I was still stuck with a low grade fever ( normally between 99.0 - 100.00) and my other symptoms remained. My ankle got so swollen that I couldn't walk on it and that's when I decided to go see my GP. He said he thought I was having some Crohn's related arthritis and put me on prednisone along with the Asacol i was taking for the Crohn's flare. Long story short the prednisone seemed to reduce the swelling slightly at least enough where i was able to walk without excruciating pain but every time i tried to taper off the swelling would come right back. I eventually was able to taper off the prednisone (after about 3 months of taking it) to the point where the swelling was painful but manageable. Towards the end of March the swelling got so bad again and i began to develop intense muscle pain in certain parts of my body (neck, both shoulders to where its hard to lift my arms to put on a shirt and swelling and pain in my right hand) i feel flushed alot and my cheeks turn red and been having some bad headaches. I went back to my GP and he thinks I might have Lupus and has referred me to a rheumatologist which i will see on June 6th and he also put me on Plaquenil which ive been taking since March 27th. I feel like the Plaquenil isn't working because i am still in pain and my ankle is still so swollen. I feel like I got hit by a truck and most days its a struggle just to get out of bed.I feel like my body hates me. Like i said i feel like the medicine isn't working but maybe it hasn't been long enough? Does anyone else take Plaquenil and if so do you take anything along with it to help with pain? I try to avoid NSAIDS due to the Crohn's because it tends to aggravate my stomach. Anyways, I am just really scared and nervous because I don't know what to expect and don't really know what to ask the rheumatologist when I go for my visit. I dont have insurance so I am having to pay cash for everything so I want to make sure I get the most out of my visit if that makes sense. Sorry for rambling! Thanks for listening - sometimes its just nice to vent especially to people who I know understand.
Angie, I am sorry about the pain and swelling. I hope looking through the past discussions on this search can help you get more insight into possible causes and therapies: http://forum.lifewithlupus.org/main/search/search?q=swelling+ankle
Best wishes to you!
Thank you for the replies. There is redness and also warmth. The swelling extends about halfway up my shin. I alternate with moist heat and ice packs as well as elevation as much as possible. These things seem to help some but more the elevation than anything. Also i forgot to mention that i have started losing hair its coming out in clumps when i shower or when i brush it. I figured it was possibly just a side effect of the plaquenil. Hopefully i will get some relief soon!
Sorry about the health issues. We have many bad days with lupus but we also have some amazing great ones. I think we enjoy the good days better than most people because they are precious times. Plaquenil and meds don't work for everyone. Sometimes it is learning things like staying out of sun and fluorescent lights that provide relief. Celery causes some type of sun sensitivity problem for people. When you are ill it becomes an all day job figuring out what helps. But then you realize you need to find a hobby, a passion, something you have always wanted to do. For me it is art. When there are good days I do my artwork. When there are bad days I do as much of it as I can. It takes my mind off the pain and gets me to focus and enjoy life despite these issues. While your rheumy will be of help - lupus is different for each person. It will help alot to find a support group either for lupus or autoimmune. Check with the Lupus Foundation of America or other lupus organizations in your area and ask your rheumy if he knows of any. Sometimes they can answer questions better because these are people living it day to day. If there is not one locally then make sure to continue posting here. We are all glad to share our experiences and while they won't all help you maybe one or two can make a difference, best wishes!
Hi Sorry to hear you’re feeling so bad. I hope you start to feel better soon. Plaquenil can take anywhere from 2 to 6 months to kick in. For me it took 6 months. If you can hang in there it should help make you feel better if it’s lupus.
Hi, I am really sorry for what u going through, but did they actually confirm that u have lupus? I mean did they run test and everything?
Wow that has to be frustrating! It sounds to me like cellulitis. Maybe ask about that. Has flu like symptoms and diff parts of body swell. Is also common in autoimmune diseases. Requires antibiotics. Often misdiagnosed for a long time. it wouldn’t be something to wait til the 6th if you can avoid it somehow. Can you try asking for quicker appt due to cellulitis possibility? Try warm soaks in meantime. Don’t know your financial situation but every hospital has government programs that offer financial aid. Depending on salary they can offer up to 100 percent paid for their drs visits, and hospital tests, labs, procedures. Even if you have money they take into consideration high bills draining your resources. I was on it for a year. At least worth trying. Hope you are able to be seen by rheumatologist soon. If not maybe your gp would be open to trying antibiotics.
I haven't been officially diagnosed with anything yet my GP just suggested thats what he thinks it is and why he referred me to a rheumatologist GP didn't want to do any tests as he said its not his "specialty" and would prefer that i see some who has more experience in that field Lupie, i did ask the GP if he thought my ankle could be due to maybe a stress fracture or if i possibly had some kind of infection and he said it was highly unlikely ... is cellulitis an infection or something different? Ive never heard of it before is why i ask and i do not have health insurance and my finances arent great but fortunately we have been able to afford my dr visits and medications thus far I checked on financial aid with the hospital 2 years ago when i was hospitalized with a crohns flare and they said i made "too much" money (glad someone thinks so) i guess it never hurts to try again all they can say is no right? I did call the rheumatolgoist and they are supposed to call me if they have any cancellations between now and the 6th - the receptionist told me that he only does new patient appts at 730am so unless someone with an appt at that time cancels im out of luck ... crossing my fingers cause i dont know if i can wait another 3 weeks! and thanks Kitkat you are right i think sometimes we focus too much on bad days and the good days pass us by but i love to work in the yard which is great because we just bought a house (fixer upper) 2 months ago so there is plenty to do ... best part is we have HUGE trees in our backyard and its very shady so i can still be outside and stay out of the sun the sun tends to make me feel drained and my cheeks always get super red almost looks sunburned and i feel flushed so i try to stay out of the sun as much as possible thanks for the responses!
Yes cellulitis is an infection from bacteria, caused usually by staph or strep. It can go systemic and cause high fevers and swollen glands. It can start with a scratch or no sign at all that is obvious. If the ankle started first before the “flu” then it would be more likely. Sounds like he might have considered it. I would try the hospital again. You never know with all your new bills. Doesn’t hurt. I still wonder if antibiotics would help. The rheumatologist is the best dr for diagnosing lupus. It’s always the worst to have to wait to get in. Mine takes three months. Sad state of affairs in the states! But hang in there. You are on the way to finding out what is wrong and some treatment!
I am so sorry about your medical issues. I will keep you in my prayers
Stay away from plaqunil. It will destroy your eyes. I speak from experience. Prednisone is your friend but that will takes its toll too after a while. Be strong.
There are many patients that take plaquenil without side effects. On average 22 patients out of a million have retinal toxicity. But if you get checked by your ophthalmologist on a regular basis it is something they can catch and change your meds. For me that’s worth the risk. I couldn’t go without it. It is an old drug that has been around for many years without many complications or side effects. Thats why its used so widely for lupus patients. Please don’t stop taking your meds until you see the rheumatologist. That can cause a severe flare and you could end up in the hospital. Even if your not feeling better yet, give it time. They can add different meds. And the meds take time to build up in your system to work. Be patient. It will get better! Hang in there. Sending prayers your way.
I took plaqunil and it damaged my eyes be careful!
Hi Angie, so sorry to hear about all that you are going through. After reading your post, it brought me to tears because I know exactly what you are going through and how you are feeling related to LUPUS. This site is awesome because everyone here can relate. I will definitely put you in my prayers. Keep the faith and everything will work out for "YOU"!!!!!!
I have heard both negative and positive things about the plaquenil. I think, just like any medication, that it affects everyone different and not all medications work for everyone. At this point i am going to continue taking it because i am scared of what might happen if i dont. I couldnt imagine feeling worse than i do right now! And Lupie i was taking cirpofloxican and metrodiazole (probably spelled that one wrong lol) for about a month but they were antibiotics specifically for my crohns so maybe i need something different or stronger to try. At this point i will try anything and i dont see how taking antibiotics could hurt? I am planning on calling the dr monday to see what he says about that. I am afraid not to try something since i still have 3 weeks til the rheumatologist appt. I am hanging in there today is an ok day except i am having some pain in my shoulder like right above my armpit in that joint. It hurts so bad i can hardly lift my arm but on a positive note my ankle isnt as painful today so i guess i will take the small victories! Thank you all for the prayers they are greatly appreciated! It is just really scary and depressing when you know there is something wrong with your body but you have no idea what. Its bad when no one around me seems to understand because "you dont look sick". Which i should be used to because i would get that alot with the crohns....if they didnt see you running to the bathroom they didnt think you were truly sick. My heart really goes out to everyone on this page who is battling something because i am sure as bad as i feel there is someone else who has it worse so i am trying to stay positive!