Newbie with questions!

sherry33

Hi I'm a newbie to this site, I have been reading topics for a while but now have some questions of my own I hope some of you will have experience to help me with!?
I am in my thirties with RA, I have had symptoms and various related problems for about seven years. I have been taking methotrexate and folic acid for a few years at top strength, tablet form once a week which has controlled things quite well with the help of naproxen but around Christmas time I had a really bad flare up which wouldn't settle so I started on sulfasalazine too. This combination has been ok and I feel it has just begun to kick in a bit and calm down the flare up BUT during the last fortnight I have had a terrible sore mouth with enormous ulcers in my mouth and on my tongue, I have seen my dentist and also my rheumy nurse who has advised me to stop sulfasalazine until everything calms down but the ulcers are still appearing and I've now been advised to stop methotrexate for a while too! I'm still having regular blood tests every two weeks and there has been a drop in some of my white blood cells but my rheumy nurse says thats not too bad.
What I really want to know is has this happened to anyone else and how long before the drugs get out of my system and will I be struggling with pain and stiffness that's going to take ages to get better again when I start the drugs again. I can put up with the mouth ulcers but don't want to be back to stiffness and pain as I'm only in my thirties with a young daughter and I work part time.
Sorry for rambling on , hope someone has been in a similar situation and can give me some help!? Thanks a lot!

woodbon

Hello, Welcome to the site! Sorry, I don't have ra but OA, but someone will be along soon who can help you with your questions. I just wanted to say I hope you soon get rid of those awful ulcers, if I have one or two, I make a fuss! :? I hope things soon settle down for you. Glad to hear from you. Love sue

lindalegs

Hi Sherry,

I, too, am a Rheumatoid and also on Mtx but haven't had any problems........yet :roll: Although I'm 51 now I've been like this for 23 years so I know all about flares and children etc.

I'm sorry you're feeling really grim and I'm sure you're in fear of what's to come if you're off your Dmards. What about a muscular steroid injection are you allowed one of those to calm things down?

I hope your ulcers go soon - it's not fair when we can't even enjoy our food.

I'm glad you've posted and sincerely hope you feel better very soon.

Luv Legs

colinone

Hello Sherry
My name is Colin nice to meet you and welcome to the site. I have RA and PA I was on MTX for about 3 years. First of all we are all different and don’t experience the same side effects of medication. I suffers for quite some time with ulcers, sore and thrush in my mouth, it seemed to come and go. My Rheumy said it was quite common with people who take MTX. My rheumy nurse told me to ask the GP for NYSTAN it comes in a little bottle and you put drops in your mouth, it clears my mouth up in a few days and I have used it several times now with great results. When is your next appointment with your Rheumy Doctor you could do with trying to bring it forward. I have had my medication changed lots of times your in the lap of the gods as to what they will give you next. I am taking PREDNISOLONE at the moment its good because I don’t get side effects but it’s a hard drug to get off as you have to come down slowly. I have been on Prednisolone several times but they put me on it a few months ago after stopping my MTX because of some problems I was having and it really works well. But you need a good chat with the rheumy, normally the next step up from MTX are anti TNF drugs you can look them up on the net, just had mine stopped because of sore throat (muscle problems) I think you will find lots of people have gone through lots of changes in medication it seems to go with the RA. Anyway Sherry this is becoming a book so take care and try not to worry stress makes you worse. Keep your chin up.
Colin

mistywillow

colinone wrote:

Hello Sherry
My name is Colin nice to meet you and welcome to the site. I have RA and PA I was on MTX for about 3 years. First of all we are all different and don’t experience the same side effects of medication. I suffers for quite some time with ulcers, sore and thrush in my mouth, it seemed to come and go. My Rheumy said it was quite common with people who take MTX. My rheumy nurse told me to ask the GP for NYSTAN it comes in a little bottle and you put drops in your mouth, it clears my mouth up in a few days and I have used it several times now with great results. When is your next appointment with your Rheumy Doctor you could do with trying to bring it forward. I have had my medication changed lots of times your in the lap of the gods as to what they will give you next. I am taking PREDNISOLONE at the moment its good because I don’t get side effects but it’s a hard drug to get off as you have to come down slowly. I have been on Prednisolone several times but they put me on it a few months ago after stopping my MTX because of some problems I was having and it really works well. But you need a good chat with the rheumy, normally the next step up from MTX are anti TNF drugs you can look them up on the net, just had mine stopped because of sore throat (muscle problems) I think you will find lots of people have gone through lots of changes in medication it seems to go with the RA. Anyway Sherry this is becoming a book so take care and try not to worry stress makes you worse. Keep your chin up.
Colin

Hi Sherry
Just to say welcome to the site, hope you will find it useful. I have RA although I am a fair bit older than you. (54) It seems to be a constant play of trying different drugs in different combinations to manage to get the benefits from the drug without suffering too badly with the side effects. Sometimes what works at one period needs changing at a later date. You need to work closely with your medical team until you get the combination right for you.
Hope you get sorted soon
Gillx

ramummy

sherry33 wrote:

Hi I'm a newbie to this site, I have been reading topics for a while but now have some questions of my own I hope some of you will have experience to help me with!?
I am in my thirties with RA, I have had symptoms and various related problems for about seven years. I have been taking methotrexate and folic acid for a few years at top strength, tablet form once a week which has controlled things quite well with the help of naproxen but around Christmas time I had a really bad flare up which wouldn't settle so I started on sulfasalazine too. This combination has been ok and I feel it has just begun to kick in a bit and calm down the flare up BUT during the last fortnight I have had a terrible sore mouth with enormous ulcers in my mouth and on my tongue, I have seen my dentist and also my rheumy nurse who has advised me to stop sulfasalazine until everything calms down but the ulcers are still appearing and I've now been advised to stop methotrexate for a while too! I'm still having regular blood tests every two weeks and there has been a drop in some of my white blood cells but my rheumy nurse says thats not too bad.
What I really want to know is has this happened to anyone else and how long before the drugs get out of my system and will I be struggling with pain and stiffness that's going to take ages to get better again when I start the drugs again. I can put up with the mouth ulcers but don't want to be back to stiffness and pain as I'm only in my thirties with a young daughter and I work part time.
Sorry for rambling on , hope someone has been in a similar situation and can give me some help!? Thanks a lot!

Hi Sherry,

No advice I'm afraid, I've only been on MTX for 4 months and so far no side effects for me but I wanted to say hi and welcome. Re: getting the drugs out of your system, maybe take a look at the pregnancy and trying to concieve threads - I'm pretty sure there'll be some information on there as you have to wait some time to flush teh drugs out of your system in that case too.

I know how you feel about wanting it all sorted out - I'm in my early thirties and have two children and work part time too - it's tough when you're trying to deal with RA too!

Hope you find the site useful - everyone is really friendly and I've found the forums a great help. xx

eckstardeluxe

Hi there. I don't have RA, I have OA but can empathise totally with your concerns about your age, circumstances and condition. I am 33 with two young children, 1 and 3.

After my diagnosis I went through all the emotions, anger, frustration, sadness, all the pain. I kept thinking why me? What have I done to deserve this? I kept thinking of all the things I won't be able to do anymore.

But, with the help and support I have found on here I have come to terms with my condition. It's still hard at times, especially when you are in so much pain and it gets you down. But as time progresses you learn to adapt. The main thing is to learn about your illness and trust your body. You have to start listening and slow down. I still work part time also but I have to accept I will have days when I'm bad and can't make it into work. I take every day as it comes and try not to set myself goals I cannot reach. From experience, doing this leads to more frustration. I set myself little goals that I can stick to. Try not to overdo things on good days, you feel like you have the wind in your sails and tackle mammoth loads of ironing etc only to find you suffer for it the next day.

The folks here will go out of their way to help you, they are all in the same boat even if they have different arthritis. There is no gang mentalitly or cliche, just genuine people who want to help you.

Take care

Eck x

ninakang

Hi Sherry

I don't have anything else to add on here, just wanted to introduce myself. I'm 32 and have RA too, I was diagnosed with it in March. Just wanted to let you know you probably have a lot in common with a lot of us on this site

Nx

jackie1955

Hi Sherry,

Welcome to the forum from me too

Jackie x

debsmartin

Hello Shery and welcome I too have RA and an currently taking methotrexate, I had tried sulphazaline first but I had quite a bad reaction (but then again for every bad reaction you get loads of people who do well on it) but I was happy when changed to mtx it has worked well for me but still having flare ups so doctor has just added in leflunomide so maybe it could be an option to change your dmard mix when you next see your doctors. Hope everything settles down for you soon keep us posted.

debs

sherry33

Thanks so much for your help and ideas, I have been reading all the various topics for a while now and everyone seems so nice!
I'm glad you pointed out about the pregnancy threads as it does seem to take quite a while for the drugs to get out of your system so hopefully I won't turn in to a crock overnight!!!!! I guess you just get used to the drugs, think they are working ok and then you get a flare up that won't settle down and it reminds you that the RA is always there to rear it's ugly head just when you think it's under control.
Hello to all you other mums (whatever age)!