Hello everyone!
I'm a 22 year old female and I was diagnosed with seronegative
rheumatoid
arthritis about 3 months ago. I also have sjorgren's syndrome to boot. I'm
completely new to the wonderful world of autoimmune problems
I have a couple of questions to ask of all the experienced people here.
First off, should I realistically expect to just feel yucky everyday? I have
painful swollen hands, feet and knees everyday as well as fatigue during
the day, but the inability to sleep at night. Any sleep I do get I just wake
up feeling like I've been hit with a sledgehammer.
My second question is in regards to medication. I haven't started any yet
(besides the nsaids for the swelling) but I've been given the choice of
trying Plaquenil or sulfasalazine first. Both my rheumatologist and my GP
want me to take Plaquenil, but I'm terrified about the side effects. I realise
the incidence of going blind is very small but I'm scared all the same.
Losing hair also frightens me, but not as greatly.
My husband has been fantastic with helping out with things I can't really
do anymore (he cuts my meat without me having to ask, opens cans and
jars, bought me a pump action toothpaste and shampoo and fills me a
hot water bottle to snuggle up with when I ache) and he's been extremely
supportive. My friends don't understand why I'm all of a sudden feeling so
tired and listless all the time, and my newfound physical limitations. Any
tricks of the trade you guys and girls have would be most appreciated.
Apologies for the long winded forst post
Welcome!! I'm so sorry you're going through this......it's so difficult. I'm afraid I can't be of much help as I am just recently diagnosed myself. I too am only on NSAIDS at the moment until they get the dosage correct and then am scheduled to start Plaquenil. I too am worried about starting the plaquenil but my Dr assured me it's a tried and true and a good place to start. I know there are some people here who take it and do okay and others that have had to stop because it did'nt work well for them or made them feel terrible. That seems to be the way with the meds though. You RD will just have to find the right one for you.
I saw you signed in all by yourself and wanted to reply and let you know that you have found a wonderful place to meet some lovely people who understand what you're going through "oh so well". I know you'll get many replies and there are so many here that have dealt with this for so long, and are always close at hand to help. I can't tell you how much they all have come to mean to me. Our computer died the other night and all I could think of was I had to check in and see how my friends are doing. My husband (so supportive like yours) went out and got a computer right away so I would'nt be without my support here
I'm having some trouble with adjusting the dose on my med and it is taking a long time. Even though I'm frightened by the Plaquenil, I know it's been around forever and I want to get going on it as I know this pain means damage is being done
I'm so sorry you have trouble sleeping, that's one thing I don't have. All I seem to want to do is sleep and have had no problems there to this point.
Anyway, I just wanted to sign on and say Welcome, and I'm so sorry you've been dealt this crummy hand. I'm happy you've found your way here.
I'll look forward to getting to know you and hope you get some relief and Sleep soon.
I know this is very frightening to you, but there is light at the end of the tunnel!!! I am on mtx and enbrel along with nsaids for pain. I huirt couldn't move, felt like crap, etc. My meds now have me at a point where I can do the things I use to take for granted. It will take a little bit of work to get to this point, changing meds, finding the right dosage for you, etc. Don't give up hope, with the sleeping ask the dr if he can give you something like a muscle relaxer that you take a couple hrs before you go to bed, it does help. Try to keep a positive attitude, eat healthy, and if you can try to do some exercise, even if it is just stretching, this helps to keep what felxibility you have. We are very happy you found us and we are here for you, anytime you want to vent, need a shoulder to lean on, we are here. Welcome again!!!
meme Hey Sweetie, Sorry u found us under such awful circumstances, but at the same time Im glad you found us under such awful circumstances. This is a wonderful place to find support and answers to your questions. I am 28, and I too have only been recently dxs with RA, and for awhile I was only taking Vioxx, the Celebrex when Vioxx was taken off the market. I finally found a Rheumy willing to help me and not treat me like I am a walking nut. She just started me on Plaquenil but I havent started taking it yet cause Im waiting for the lab test to say my blood work was ok. Sorry I cant give you a lot of expert advice, but what I can tell after having dealt with chronic pain for 15 yrs is that you will have bad days, sometimes bad weeks like me. During those times just take care of yourself, rest a lot, and dont be ashamed to ask for help. Be thankful and appreciative for any support you get, especially from your husband. And on your good days when pain and fatigue is not so bad do things for yourself like visit an old friend, get a pedicure, new hairdo, visit a museum, things like that. Unfortunately everybody won't understand why you feel so bad (even after youve explained it for the 50th time) but you will find those few wonderful friends who will be there for you no matter what.
I hope you feel better very soon. Feel free to post here as often as you need to. We are all very good listeners. I let you know how the Plaquenil works for me.I just wanted to welcome you. I'm 28 and was dx'ed with JRA at 7.
Mine is also sero-negative. Right now, I'm unmedicated due to a
lot of reasons. No ins. or doc mainly. Having dealt with this for 21
years, there are good days and bad days. Hi, welcome to the board. I am recently diagnosed as well. I am taking plaquenil and not having any side effects. I'm not noticing any improvement yet, but it's barely been a month. The doc said it could take 3 months for it to be effective. I am also on mobic. If your friends don't understand and are not being supportive, maybe you could print out some info on RA so they will understand. I think most people are just not informed. Friends may assume you are going through a depression, or just not interested in the friendship...something you don't want to happen. If they think it's just a few aches and pains, it's fair they would come to that conclusion when you cancel social engagements and such. So....give them as much info as you can and educate them. I'm sure they will be empathetic and understanding. If they are not, perhaps it's better left as a casual friendship. I also suffer from heart problems, so I have learned to not commit fully to anything. If someone asks me to go out to dinner next week, I am very honest. I will say something like..."I would really like to spend time with you next week having dinner, however, I want to be upfront with you and let you know I have some limitations with my health. (I don't go into full blown health history....I decide how much info to share based on the relationship). I let them know that I can't commit to anything 100% b/c I don't like to let people down when I can't follow through. I try to say "if it's God's will" I will be there. I pray for the strength to do whatever it is I had hoped to do. Sometimes I go, othertimes, I just don't feel well enough and have to back out. At least I've let them know up front and don't feel like SUCH a heel for breaking plans. Most of my friends know I don't do dinners well. I am somewhat out of the girls night out dinner plans, but I do coffee in the morning very well :) I try to give alternatives when someone wants to share company with me, but it's in a situation I know is unrealistic for me. I Hope this made some sort of sense. I think that people basically want the best for us, but sometimes need a little more information in order to understand. I have a friend who recently told me he has MS and I knew little about it. I asked him to send me some links online so I could understand what he was going through. Your close friends will want the same for you. Help them to understand you :) Love and gentle hugs, Juliah Welcome All Bear. I am also recently dx and I really freaked out with my dx. I was so lucky to have found this website early on in my research. The folks here convinced me to try methatrexate and I think it is helping already, after only three weeks. I was in the very same pain that you describe.n I was scared to death of the side effects also. I have huge issues with "being a sick person" also as people expect me to "run faster, jump higher, etc." because I have always been very active and physical. I am 49 and I am always told I look in my 30s. NOw I have such a hard time explaining this "new me" that I am not very happy with
Wayney, I need a site like the one you posted but hit a dead end when I clicked on it. Are you sure it is the correct address? welcome albear, i am so glad your hubby is there for you,mine is too.that makes a world of difference,at least you know he's by your side through this.i am too a newly diagnosed RA patient-mine was diagnosed Nov,2004.I am 43 yrs.old. I was put on sulfasalzine Mg a day with prednisone.was on it about 4 months,just kept getting worse,they put me on MTX now-tomorrow I will start my 3 dose of 12.Mg-they need to tweak the dosage,but i think this is certainly the right med. for me,i can actually move,and cut my own meat.i had steak about 4 days ago ,and hubby was going to cut it ,I said I think I can do it and did.I was so happy ,it was like accomplishing something.I know just to have any pressure on my finger joints were bad.My ankles are still swollen,but there is SOME RELIEF with the right mix of meds,your Rd just has to find the ones that will work for you.Believe me were all scared of the meds,but I look at it I am willing to take the chance of having some relief of the pain.Good luck to you and keep us informed of your progress,and certainly don't be afraid to ask questions here there are alot of member that have gone through the process and have helped me to know what to expect ,thank care sherry Albear, I have been on alot of drugs over the past two years and I am also seronegative. Hate this disease hit you at such a young age. The hardest problem is waiting to see if the drug works for you. In the meantime, Prednisone helps in the short term. I was put on 10 mg in the beginning which helps with pain but I must admit it WILL make you gain weight. I am currently on Sulfasalazine 2 pills 2x's day, Prednizone 5, and my NSAID is currently just changed to Nabumetone. Was on Mobic but it was starting to give me bad headaches so had to change. There are good days and bad. Flares, where the disease is really active I would not wish on my worst enemy. I am also having Chronic Fatigue but problems sleeping at night with pain. I am now trying my third med for that. I wish you luck and the right mix of meds so you can try to lead as normal a life as possible. We've all been where you are at and this message board has been a GODSEND for me. Keep us posted on your developments regularly. We are here for you dear! I'm 11 years into this life style and I can report that for me it has greatly improved from those days of having someone cut your meat, and not being about to button your shirt or hold a tooth brush. THANK GOD!! That time period scared me to death. With proper medication you can expect a relatively "normal" life. I think I can honestly say that those of us with RA learn to deal with a lot more pain than those who do not have this disease. Everyday will not be as bad as you are having now. I started out with predisone, sulfersalzine and relifin (I think that's what it was: NSAID) and I honestly believe the predisone got me going again. I took sulfersalizine for a couple years and then swithced to plaquenil. Both take a little while to get in your system and begin working; and for me neither were ever totally effective. Totally effective might not be a good description of any of these meds. You'll find some are very effective and others not so much. I'm now on MTX and Humira and have fairly good success; but I've accepted the fact that it's unlikely to give me 100% relief. Welcome to our site Albear. We're really glad you're here. Lovie Youre right that a flare up is different for each person.. but the situation you described sounds like your flare. its when things get much worse quickly. I havent said much about this in other boards, but watch out for the sulfa drugs. I took sulfasalizine for 2 days and broke out in REDNESS and itchiness, had a hard time breathing and chest pains. I went home from work and drove to my GP who gave me salumedrol and told me i shoulda gone to the ER! So i am highly allergic to sulfa drugs! hope this helps! Albear dont be embarassed about not knowing that much about RA. I have only been dxs recently and I dont know to much of anything about RA either
Please dont be ashamed to ask questions. The only dumb questions are the ones you dont ask!!!!
BTW: I just started taking Plaquenil yesterday and so far so good. No major side effects except I dont have a real appetite(which may be good since I need to lose 50 lbs anyway.)
Take Care Albear; I've taken both Sulfersalazine and plaquenil early on in my treatment. Unicorn has a great point...some people are highly allergic to sulfer; and it's likley you won't know it until you take sulfersalazine...unless you've taken something before. I took sulfersalazine for a while and then eventually switched to plaquenil. The one thing I didn't like with Plaquenil is you need to have your eyes checked every 6 months. That's no big deal; we should do that anyway...but the thought of something happening to my eyes freaked me out. I didn't realize until recently that our eyes are at risk from RA anyway....so this should not stop you from considering this medication. From what I'm told complications are very rare, and once you stop the medications any problems will reverse. Shawnie; you mentioned loss of appetite and this is a sure sign for me that I'm flairing. I lose a lot of weight during this time as well. Sounds like you are right on track with your description for a flair Albear. Good Luck to you as you begin your journey. We're all here to support you!! Lovie My definition of a flare is very simple. It is when I am in so much pain, it is impossible to sleep. I stay awake crying
It seems I am tired and in some pain all the time but when it keeps me awake all night -I KNOW it will not get better until I get meds. That has been my experience. Interesting to read the variations in definitions. Good luck.
Great question about what is the definition of a flare up! I did not really know how it was defined either. I know everyone is different, so it varies. But I do get confused as to when I would say I’m in a flare.
When first diagnosed I know it was active as I could not move. But since then (January) my wrists are swollen and sore pretty much all the time, but not nearly as much as it was at first. I have 5-51/2 days a week when I just feel ‘yucky’. Tired, swollen glands, a little bit of a sore throat and sometimes ears, and want to sleep almost all the time (but I don’t, since I work.) It’s been a long time since I woke up refreshed, even when I sleep most of the day on the weekend.
Usually my back and legs ache. Really trying to eat better-less sugar, etc. So what do you guys think? Would this description be considered a flare, or more of just normal everyday RA and anemia?
Thanks, Tara L if its constant, Tara, I would think its normal and just a highly painful normal... I dont really flare violently, but i slowly get worse to the point i am crying againl Been feeling pretty good for the past few months, so ill know if i get worse i am flaring. I would say what ever your pain level is for a long period of time will become your normal. Then if you get worse over a short period of time, thats a flare. Your normal will hopefully get less painful as meds kick in. I may be wrong for your case, but thats a generalization.... good luck! Tara, Welcome. It sounds like everyday RA that sometimes gets better, less pain, swelling over time. A flare for me is a sudden sharp increase in joint pain and swelling. Joints that have been good will swell and really hurt. I also become so tired I can barely move and I need a lot more sleep than usual. Usual for me is an afternoon nap every day. I can't function without it. Until recently Enbrel has kept flares to a minimum and very mild. I may need my meds tweaked again.
Barb
Plaquenil is relatively mild compared to other meds. Some people
find it works great for them. I have no experience with
sulfasalzine myself. For me plaq. didn't do much. As for
worrying about blindness with plaq. if you follow the advice and
get your eyes tested before going on it as a baseling and then every 6
months you should have no problems. It must be done by an
opthamologist rather than an optometrist. Some docs don't require
the baseline exam but others say its a good idea.
You are lucky to have such a wonderfully supportive hubby. Mine
is that way as well. It helps. As for friends, well,
my suggestion is to go to
http://www.butyoudon'tlooksick.com/spoons.html
The lady who wrote this has lupus but it is an excellent analogy on what we deal with.
hugs, wayney
Yeah I boo booed. Added the apostrophe and I shouldn't
have. Sorry bout that. It's what I get for not paying
attention.
WELCOME!!!
to deal with this disease. I was just diagnosed a few
months ago so I am still learning about things. But
everything you describe sounds just like me. I am
always exhausted and weak during the day, and then
when I go to bed I can't sleep!
I have been taking prednisone which has help
tremendously for the pain and swelling and helped
me feel 'human' again. But I can tell you as
mentioned by Karen (I think) it does make you gain
weight. I think if you just keep that in mind it will be
OK. But the relief it brought was very welcome. I am
also taking methotrexate (2 mos. now) and have had
3 remicade treatments.
For me, I just really have to focus my energy on one
thing at a time. This is a great site and people here
are wonderful...so again...welcome!
Tara LAwww, thank you so much for the replies! I read them at work and they
made me all teary just to know there are others feeling what I feel. I was
starting to think it was all in my head!
You've all been amazingly supportive, right when I needed it, thank you!
The rheumatologist situation where I live is pretty desperate, there are
only 2 in our region. My rheumy seems great, he listened and examined
me thoroughly, we had a loooong chat about my family medical history,
my personal medical history, things that have been going on in my life
and so on and so on. He wanted to see my digital x-ray things before he
started any dmards, but because it takes months to get an appointment
with him he said he'd contact me and my GP about the course of action.
So the letter has come in, and he's given me the option of taking either
Plaquenil or Sulfasalazine and he wants me to start at my next flare up, to
give me time to think and look up the meds etc. I work in pharmacy, so I
have a fair idea about most medication things, but obviously I've never
really concentrated on arthritis meds (no need to before!) so I had to look
stuff up.
On to my question after that long winded opening paragraph! My
question is: how exactly do I define a flare up? I feel crappy every day,
aching and fatigued. I know it'll be different from person to person, but
generally I think a flare up for me starts out as fever and sweats and chills
followed by an intense increase in the joint pain, muscle aches as well
and needing an immense amount of sleep. It usually lasts about a week or
so. Is this a flare up? Just want to know so I know when to go back to the
doc.
Kind of embarassed now that I know so little!
Im glad you realize that you have a lot of support here hun *hugs* Believe me, it will get easier
Hi everyone,
You guys are so great!
Thanks for all the feedback and support. and Albear
thanks for askiing the question!
Blessings to all,
Tara L
Thanks Roxy,
I totally know what you mean about being consoled
when you hear others having the same symptoms.
For me, it helps me to realize I'm not 'crazy' or that it's
'just me'.
I took my mtx last night and have been feeling
really fluey all day; sinus, ears,tired, etc. Hope it will
get better in time Thanks again for your support
everyone.
Tara L
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