Thankyou for letting me join this group. I was diagnosed last week after suffering terrible swollen joints and pain, my GP had sent me for bloods. Was told probably a virus. My ESR came back at 43 (???) and i was then fast tracked to the early arthritis clinic. I saw a doctor who looked at my hands and took some notes. Then consultant came in and said classic symptoms start on 15mg Methotrexate, 5mg folic acid weekly and 200mg hydrochloroquine daily. Blood every 3 weeks, see the hospital again in 3 weeks. Then he was gone, no questions answered as he said was very busy. I started the meds on monday this week, am now suffering bad stomach pains and diarrhoea +++! I phoned the hospital to speak to a nurse only to be told they do not have a specialist nurse working there so i can leave a mssg with the secretary who will find out an answer from the doc. I am totally overwhelmed with all this, read up and now frightened witless. I dont know anyone who has this and I am also sick to of being told by friends “its only a bit of arthritis, everyone gets as you get older” (i am 62) . I had breast cancer 12 years ago and managed that better than I am this ! Thankyou for reading all this, I am sorry to be so long winded. Any advice would be so welcome. Thankyou again.
Help: Thankyou for letting me join this group. I was... - NRAS
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Sickness and diahorrea I get too however if severe call your local GP as need to be checked. I am on MTX and it’s caused me this but after 7 weeks the nurse said what is it pro and cons. So personally prefer lower pain in body and cope with nausea etc.
fight for a follow up or contact your local GP and talk out your concerns you have that right to understand too.
Welcome to our brilliant forum. I am sorry you have had to join us and even more sorry that you have just been left in limbo. I take methotrexate and I was lucky not too many problems when I took the tablets but I’m now on injections as you tend to absorb the medication better as it has not been destroyed by the digestive system. A lot of people suffer with nausea etc on the tablets and it takes time to settle down some people don’t and they will go on to have injections ( so easy to do and I prefer injections) you won’t feel any benefit with these drugs for sometime as they take at least 3 months to work or they may change your mix this is very common and sometimes it takes along time to find the right ones it’s all takes time. There are a lot of success stories on here. Your not alone so ask any questions someone on here will answer. We all share the good and the bad on here so please stay in touch..
I’m sorry you have had to join this site but you will soon find there are lots of knowledgable people here who will have lots of advice for you . But please stop reading Dr Google,until you know a bit more about rheumatoid diseases. Most of the stuff online is just alarmist.
Unfortunately you will have to get used to people telling you their granny had it, their auntie‘s got it and even some peoples dog has it.
It’s best not to try to argue with them because they all think they know more about it than you or your doctor ......just smile benignly & when you know a bit more.... Frighten them silly saying they are just the right age to get it too!
I am with you re breast cancer ......I had it too ...... in fact whilst I had RA & to be honest for awhile thought I’d rather have the breast cancer again if I could lose the RA. But now I am settled on a good drug regime .....I can cope.
I know this might seem a silly question but you did only take six 2.5mg methotrexate tablets once didn’t you .....Then again on the same day next week......you’re not taking that dose every day?
Most people are usually prescribed 5mg Folic Acid every day except the day they take the Methotrexate.....that helps the nausea. ...ask the nurse about that.
Unfortunately nausea is one of the symptoms many people experience when they first start methotrexate but if you drink plenty of fluids and possibly it might help to take the Mtx at night after dinner... I used to do that, I told myself if I felt sick and I was asleep I wouldn’t know it..... It Worked for me!
Write down a list of all the questions you want to ask the nurse, because believe you me .....once you get them on the phone your mind goes blank.
Have you got the forms for your blood tests and do you know if you need to make an appointment or can you just walk in to get the test .....which you will need before your next appointment ....so that your rheumy team can check what your blood is doing.
Hope this answers some of your questions...I am sure many members will soon be along with more advice for you.
Take care
AC
Thankyou very much for replying. I only take 15mg methotrexate (6tabs) once a week , I chose monday, no idea why !! Then on tuesday i take 5mg folic acid as a weekly dose 24hrs after the meth. I also take 200mg Hydroxychloroquine every day. Yes i have the blood forms so i can just pitch up to get them done at 2wks 4, 8 and 12wks. The trouble is there is no nurse i can talk to, i was just told no nurse in the job at present. So noone I can phone for any advice or reassurance. No support groups being run either.
Im sorry about you ca breast , hope youve finished treatment with that. Sending best wishes
You can ask away here hellsgranny ........we can’t give you any medical advice but we can tell you what we’ve been through and if we think you should ask the doctor. I hope the sickness has gone away a bit ....a lot of it might be anxiety you know.
Take care& don’t be scared to ask..... we have all asked a lot of daft questions in the past!
Thankyou to everyone for your replies, I appreciate it and really helps
It can take a while to get used to the drugs. I found if I drank lots of water, and took my MTX in the evening, after food, it was manageable. I also drank ginger tea in the evening. And the nausea slowly wore off after a month or so.
However, if it gets worse, leave a message for your doctors straightaway.
It’s probably little point to tell you not to scare yourself witless, as I think we’ve all done that! I was practically measuring myself up for a wheelchair in the first week. But the reality is so much different. There will be ups and downs, and things might not be easy at times, but the probability is that in a year or 18months’ time you’ll wonder what you were worried about.
Yes a few people have a dreadful type of RA, have real and horrible problems with the drugs, and for them it is a constant complete misery. But they are in the minority despite what you read on the net. For the rest of us we find a way to live with it more or less ok and work out how to manage the bad patches and enjoy the good ones.
If you want to read up on it stick to reputable sites like nras.org.uk and they also have a helpline to call if you want to talk to someone. Also concentrate on looking after yourself, it makes a difference.
Hello there, you have been given great advice here. It is very natural to be really scared and overwhelmed when first diagnosed and takes a long while to get your head around the disease.
One piece of advice - I go so frustrated at people saying things like "I have a bit of that in my back" so now I say I have Rheumatoid Disease which stops the silly comments.
Try and keep your spirits up and remember there are wonderful drugs out there.
Hi there,
Sorry to hear you've been having such a negative reaction to your treatments.
Our helpline is here Monday to Friday 9.30am-4.30pm to offer support and information for those with RA and I would strongly encourage you to get in contact with them as well as engaging with this online community.
Our helpline can also help set up a phone call with one of our trained volunteers who has been in a similar position as well as send out some of our self help publications which are designed to try and help make it all a bit more accessible and less daunting.
They can be reached by email at helpline@nras.org.uk or via freephone 0800 298 7650.
I wish you all the best with your symptoms and hope they begin to be alleviated by treatment soon.
Best wishes,
Hannah - NRAS social media team
Thankyou for your reply, it is appreciated.
Did you start both drugs together? If so it’s hard to tell which is causing the problem. Although MXT often causes nausea, hydroxychloroquine caused me severe stomach cramps and diarrhoea.
I guess one way to tell which it is would be to see if it gradually improves during the week and then gets worse again after next dose of MXT or if it is the same every day.
I did manage to wean myself on to hydroxychloriquine but I had to stop it for a week due to an infection and when I started it again all the symptoms came back so I told my rheumatologist I wasn’t taking it anymore and we switched to sulphasalazine. Unfortunately treating RA is very much trial error to find the drugs which you tolerate and which work for you.
Thankyou, I was wondering about this. I took the MXT monday night and the hydroxychloroquine (what a mouthful!) the next morning. Tummy cramps had started by the afternoon and diarrhoea that night. Its still awful and i now seem to leak it as well. I know , too much info !! I was wondering if it was MCt it mightvhave stopped by now. I’m worried as its not stopped and i’l be taking the MXT again in 3 days there will be no let up. No rest for the wicked ! 😃 Thankyou for your replies
I had nausea from MXT and brain fog but there was definitely a cycle there. ie. First couple of days really bad and then gradually improving until it was time for next dose.
The hydroxychoroquine was on a different level. I was literally bent double with the tummy cramps. It was honestly worse than labour pains. And it was everyday!
I know 43 is quite high for ESR, but my highest was 86. I know what you mean about coping better with BC, so did I. Perhaps next week it might be worth ringing the NRAS helpline. 0800 298 7650 Opening times: Monday to Friday, 9.30am - 4.30pm . If you're able, you might just get them today.
"Our helpline is manned by three trained staff. Our aim is to provide callers with up to date information, give emotional support especially for those going through a difficult time and help people understand more about the disease and the treatments available. We aim to keep well-informed of developments in the field of rheumatoid arthritis (RA) and will always try to answer your questions as fully as possible. "
Poemsgalore1 do I know you from the BC forum a few years back ? Hope you are keeping well
Thankyou everyone for your advice, have phoned the hospital so waiting for a return call
I don't recognise your user name, sorry - but you may be using a different one. I've recently finished 5 years on Anastrazole and I think I'm still clear of cancer. But it's been replaced by OA, Vasculitis, Osteoporosis, a lot of pain (not from RA) and possibly IBS. I hope you are keeping well apart from RA. Wishing you well. XX
PS tell your friends you have Rheumatoid Disease, knock the arthritis bit on the head and let them know it's a systemic disease. That might shut them up. 
I have changed my username now, but I joined in 2007, finished exemestane in 2012, I never had the courage to join in but got so much support from the group. Older now and have been so helped by the RA group, I hope I can also be supportive to others in the future, Will take the advice of not saying RA as very fed up with everyone telling me that’s what everyone’s got and a massage is the answer !
Thankyou everyone hope you all have a good weekend
Sooo Frustrated!!!
JIA??????
Serious Deterioration whilst on biologic
Flare up advise
