Hello,
I am new on the forum and I don't have a clue how to go about it.
I am 45 years old, married with twin children aged 12. Recently I have been diagnosed with Psoratic Arthritis, the consultant recommended that I should take a drug called Sulfalazamine or something like this.
I must admit I have pains in my hands and feet and it does not get better. I don't know what to do! Take this drug or not? I am scared of side effects as I have never taken any drugs before. is somebody on this drug and could talk to me about it please?
Many thanks
Zaza
Below I have posted a link for info on Sulfasalazine. I myself am taking MTX and will be adding a biologic-Enbrel in January. I am a possible PA but the same treatments are used for RA as well. I would learn all that you can about PA to empower you to make decisions which are the best for you alone.
http://www.medicinenet.com/sulfasalazine/article.htm
I forgot, most of us are over on the Rheumatoid Arthritis board so come join us.Hello Bonny,
Thank you for your answer.At least there is somebody out there who cares...
I am sorry but what is MTX and a biologic- Enbrel?
A last question : How or where do you join the RA board?
Many thanks again.
Zaza
Do you live in America? Isn't it odd that the doctor over there prescribes everybody the same drug Mtx and Enbrel? I don't understand why the doctors in UK prescribe something else? After all we suffer from the same symptoms and should be getting the same treatment, to me it's common sense(if you live in America, UK or Tambuktu). I should go back and mention it to him. I haven't taken anything yet as i am concerned of the side effects. I have tried homeopathic treatment but it does not really seem to work. will join the board shortly.
All the best
zaza
zaza I tried not to use the chemo but got so bad I couldn't walk and was afraid of permanent damage. I finally started MTX lover 3 months ago with very little results which is why my doc is going to add Enbrel. Talking to many in the uk sulfasalazine seems to be the most common starter drug for RA/PA.ZA and Bonny I am off mtx now because the doese had to go bigger and was causing too many other problems. I am now on arava and humira due to the fact enbrel wasn't strong enough for me. I am now going to be going to a tanning booth for help with psoriasis, it has gotten to be a pain in the but, my skin looks like crap and the meds don't seem to be helping. I have difficulty in walking at night but that is because I am on my feet all day long, with my job. I am a grocery receiver, so I am on my feet to work with the vendors and am running back and forth to make sure they do their job and making sure things are running smooth. I know taking mtx can be very scarey but the alternative if you don't is even scarier. I am very fortunate have a rd who is very aggresive and is willing to listen to my questions and will try alternative procedures to help his patients
Talk to your rd zaa see what they have to say, may I make a suggestion, write a list out of your questions you want to ask your dr, keep adding to it if you need to and take that list to the dr next time and ask him those questions and make sure he answers them for you. My rd says he wishes more of his patients asked questions, most just sit there... I told the dr they sit there because they are scared of asking him anything in case they make him. Do some research on what forms of arthritis you have, being more informed helps alot in understanding what is going on. If you have any question please feel free to pm me. memeI have severe PA and pppp.('') I am presently
taking MTX and Remicade. I was on Enbrel, but it was not sucessful in
stopping the rapid progression of this disease. The pppp is cleared, but the
PA is lingering (have been on the meds since June). I also exercise and do
yoga to help keep the joints loose.
If you see a Rhemy, talk to him/her about all your treatment options. Good
luck with whatever treatment you choose. I hope you find relief soon.
Thanks. Mummy Dee x
Zaza,
I was on Azulfidine (Sulfasalazine) for about 5 years. I don't remember it having any major side effects at all, actually.
I also took Plaquenil with it and that was fine too, except you have to see an opthamologist when you take that.
Now I'm on Humira which is a biological, methotrexate (MTX), 5 mg or prednisone and Celebrex for pain.
Its nice to meet other people with psoriatic arthritis. I'm 48, single and have been diagnosed since I was 23. I've never actually met anyone else with PA.
Hope to run into you on this forum again, and if you have any questions about azulfidine, I'd be glad to answer.
Jennifer
Hi Denise, unfortunately with pa that is one of the problems, it takes awhile beforeyou seem to be able to get going. Ask the dr if there is anything you can take for pain right now till you are done breatfeeding. My pa didn't rear it's head till my daughter was well over the nursing stage. I am doing well with the pa right now but it is the darn psoriasis that is giving me grief!!!Meme, Thanks for getting back to me.
Sorry I did not see your message until today.Thank you !
I am going to see my consultant on the 1rst of Feb for taking Sulfasalazine for the first time. I am a little bit scared to go on a treatment but I know if I don't it might deteriorate! Some of my fingers and toes are swollen and hurt. It is really awful in the morning. Sometimes I feel like not to go to bed in order not to wake up in pain. Do you really recommend the drug? Any tips? My homeopath tries to dissuade me but the homeopathic treatment does not seem to help!
By the way I hope that everybody is keeping well on the forum and Happy New Year to you all.
Zaza
I hope every one is doing well. Have an infusion today, and it is snowing
Hi Dee,
Sorry it's so tough for you at the moment! I am on MTX and infliximab (remicade) plus arcoxia and either co-dydramol or tramadol. MTX can have side effects so you will get prescribed folic acid which is really important, it minimises the side effects which can be nausea, mouth ulcers, hair loss, fatigue and more. You also have to get your blood tests done regularly to pick up any effects on your liver before any major damage is done. I think I've been lucky that I am on a lower dose of MTX that gives me fewer side effects, I have had some hair loss but it has stabilised now and not too bad - no bald patches or anythig like that! I have never had mouth sores and only had nausea with higher doses. I would have a go at anything, you need to find the treatment that's right for you, it's an individual thing and you might need to try a few things out to find the right combination.
Hope things get better for you, I am in UK too but have no snow, just a bit of drizzle which is worse than really cold weather for me!
KT
KT, Thanks for all the info and advice- I think I will just go with what is recommended by the rheumotologist. I suppose everyone is different and reacts differently to each drug. Will let you know what he puts me on. I am also going to go on an Oestrogen contraceptive pill as I need to balance the hormones- my body just loves being pregnant, apart from the morning sickness and obvious "weight gain" my Psoriasis clears up and I have no arthritis.Hi Dee,
I hope you manage to get things sorted and get to the Rheumatologist. I have heard about pregnancy causing remission of autoimmune diseases, I suppose that 2 months down the line it must be hitting you hard. I have admiration for all mothers looking over babies, and doing it all with PA is an extra achievement!
Good luck with it all - KT
Thanks KT. Its nice to be appreciated, I do get great smiles from my 2 month old every morning which makes it all worthwhile, even if I can't pick him up and cuddle him without help. I really didn't think it would happen again after my second child- it took me 5 years to get it under control the first time around so I think I am in for a long haul again. Staying positive....I am sure it will improve as the weather does!!Hi All,
I've not been on-line too much as I am really struggling at the moment, my infliximab is due tomorrow and the last few weeks I have felt the need for it! My back is so stiff and sore, knees and elbows are shocking, can't sleep for more than a couple of hours without waking up in pain... Now I've got a cold and trying anything I can to get rid of it before tomorrow (if I've got an infection they won't give me the infliximab). My other half is getting bored of coming round and sitting watching me rest - he keeps suggesting outings and activities but I can't even face planning for next week when I know I'll be better. Our wonderful health service won't allow me to have the infliximab any more frequently than every 8 weeks but it seems only to work for 5 or 6. I had been told I would be sent an appointment to see the Rheimatologist in April but when I called yesterday to check as I hadn't heard they said it might not be until July as the Consultant I was with has left the hospital. I refused to accept that and several phone calls later I was booked in to see a different Consultant (although you don't usually even see the cnsultant but a member of the team) on 27th April. I am sick and tired of having to fight for everything. That seems to have taken my last reserves of energy and today I am feeling really low.
Sorry for moaning, feeling a bit sorry for myself today! Hope you are all OK.
KT
Sending you gentle hugs over the ether KT. KT,Hi, I was diagnosed 3 yrs ago with pa after a serious asthma attack i was transported by chopper from my home country town to hospital and placed in an induced coma for 10 days. after being paralised for so long i had to learn to walk etc all again. this took years with also suffering from post traumatic stress disorder. all the while i was incredible pain . eventually my doc sent me to the rhuematologist and was told i had pa. at first i was put on methotrexate . for 12 hrs after each dose i was in excrutiating pain. then it began effecting my liver so i was taken off it and put on arava. i have been able to live a life again. still in pain and have high doses of tramadol every day but would reccommend arava to anyone. I now run a pain management support group at my local hospital. and can look after my two beautiful grandchildren. I am only 41 but feel like 80 most days. would love to talk with anyone with pa.
Da momma - i am on infliximab (remicade) and have it every 8 weeks but after about 5 or 6 weeks it seems to stop working, I stiffen up and my joints start to get painful and the fatigue hits me and floors me. I often get a flare in a certain joint, eg last time I got severe costochondritis. Maybe your husband's difficulties are due to the drug not working for long enough? In the Uk the health service will not allow us to have infliximab any more frequently than 8 weeks for PA (although for other conditions it can be given every 6 weeks) so I am a little stuck! Alycat - welcome! You seem to be having a rough time, I hope that things will begin to get better for you now you are getting some treatment that works better for you. Many people who come here also post on the RA board on this site as it is busier so you might want to have a little look over there. KT I find that the PA causes more pain than the RA. I was diagnosed with RA in 1999 and PA in 2005 after my RD ordered xrays of my hands. Anyone else out there that has RA and PA? Welcome to all of you. KT, i know you posted that message awhile ago, about your significant other wanting to make plans, and him coming over to watch you lay around. I am in the smae boat! My boyfriend and i have been dating 1 year, when i met him i was a different person, He says he will stick by me, but i dont think he really understands this illness, as i am new to it as well. i gave him the spoon thery to help him understand what i go through everyday. he just thinks i can go,go ,go. he is coming to terms with that fact that i cant. but then i think he may become bitter,if nothing changes in my health. i hope you get this ,i think you posted it awhile ago, i dont check this site much anymore, as im hanging out at the RA board. hope all is welll with you kel LinB I have ra and pa too, I also have oa and I have to agree with you pa is worse then the ra. My pain is pretty well at a low level with the meds,but the psoriasis has flared up terribly. The meds are no longer working on the psoriasis, so I am now using old methods, especially the one where I go to the tanning booth. It is now starting to finally help, I am doing well with it, and I actually have color to my skin!!!!
I think I am lucky as D has only known me with PA so he doesn't have another "version" of me to compare with. We've had a few long chats and I think he's starting to understand. I am teaching him to paint my toenails and he puts cream on my feet for me. He gives me lovely back rubs and foot rubs and sits when I am too tired to talk and draws or reads or watches TV... He still doesn't get that I need most of the bed so that I can sleep in my comfy position (most of the duvet too!), or that if he snores and wakes me I will suffer the next day
Hope it's going OK for you! KT Kt , what does D stand for??? i just took my 7th mtx. shot. still on 15mg prednisone.ultram,folic acid. i am noticing my hair is falling out in the shower:( but will continue to stick with the mtx.and hope it works. what are you on? how long have you had this ,what is youe age? kel Hi Kel, D is my other half - I call him D (it is his initial but also for darling because he cringes if I call him that!). I was diagnosed over a year ago but have had symptoms for years that gradually got worse and worse. I have been on infliximab (remicade) for 8 months, plus etoricoxib 120mg, MTX 7.5mg, folic acid and painkillers. I had an appointment with my Rheumatologist on Friday and because I'm not doing well on the infliximab they're going to up my dose of MTX to 10mg (I couldn't tolerate 12.5mg when I tried before) and then in 8 weeks if still not better they want to change me on to etanercept (sp?). I am a little nervous about that as it is self-injection but if it works I don't care! They also talked about getting injectable MTX as it might lessen the side effects... I am just pleased they are listening to me about how bad my quality of life is at times! When I first started with MTX my hair was falling out faster but it seems to have settled - it's thinner than it was and I lose lots but it hasn't got any worse and I haven't got any bald patches. My hairdresser is lovely, he always makes sure he tells me that my hair is no worse and he even jokes with me about my baldness paranoia! I hope you are doing well - it is beautiful weather here and I have been sitting on my bench in the garden with a cup of tea - now back to work (trying to write an essay). KT I am new to the forum also. I was diagnosed last August with PA and poss. Sjogren's. I also have OA. Pain is my biggest problem right now. I have been taking Darvocet but can't seem to be comfortable. I am allergic to motrin/aleve and am afraid to try any other nsaid. I get a lot of edema and shortness of breath. It is frightening and fear another reaction could be deadly. My rheumatologist told me she didn't feel comfortable putting me on anything but plaquinil as my labs were too high. I guess she means the ANA that was 1:1257. I am finding I feel much worse as the weather is warming up. How is this possible? I have always been a "warm" person but this past winter changed to a freeze baby. I am having so much hand pain and back pain that I can hardly type this. Finger swelling, psoriasis flaring. I feel miserable. One question I have is do any of you find ultram to be helpful? It didn't help my OA years ago but I would be willing to try it again. I don't want to go on to stronger narcotics but I can't stand this aching/throbbing. Sorry to be so negative. I have enjoyed lurking and reading all of your posts for a couple months now. Hi and welcome to both of you! First thing to say is that most of the people on this board also post on the RA board as it is busier and some of the topics are relevant to us all eg drugs etc. Lou - sorry, I haven't heard of mapthera - does it have another name? Is mapthera a commercial name? For example in the UK remicade is referred to as infliximab and it took me a while to realise they're the same thing! I am sorry to hear you're having a tough time and I hope you can get something sorted out - keep us posted. Mummy - sorry you're feeling so rough! I have found that my pain and symptoms aren't always improved by warmer weather or worsened by cold weather (although sometimes they are!) so it could just be a flare-up not connected with the weather. I haven't any experience of ultram so can't help there unfortunately - Good luck with it! KT
Glad you could both join us. There are alot of experienced people on this forum. You are bound to get advice from everyone.
Lou, ultram is a widely used drug. Many people here use it. Different people react differently so if it works for you thats great coz we all know any help is good help!! Sorry i havent used mapthera so cant speak on that one. Not good to hear you are so sick, hope things improve for you.
Mummy, our summer is ending where i am, sadly, but i know the confusion you speak of. I found i was affected by humidity as well as cold. We get desperate for relief thats for sure. Sounds like you have a good doctor though, it feels good when you know your doctor is aware of your personal needs. Hope you get some relief soon. Don't worry about being negative, we all go through that!
Welcome again, and make sure you have a look at the rheumatoid arthritis forum too, alot of people post there instead of here.
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