I am 22 and was just diagnosed with RA. Should I consider taking the doctors recommendation of methotrexate, or too risky for my age?

[RBRainard92]

My doctor based my diagnosis off a 168 CCP level, X-rays and physical appearances of joints. My X-ray came back that I do not have joint damage yet. I have been having severe pain in my toes and hands, as well as pain in my shoulder and knee. I am just wondering since there is no joint damage as of now, should I consider taking another medication? I am extremely worried about the risks of methotrexate! I eventually want to have children, and this medication has so many warnings of birth defects and pregnancy complications along with risks of cancer and other diseases for myself. Has anyone had extreme complications with this medicine? Did it help?

[bingochristine]

Hello, sorry to hear about your diagnosis of RA, there are quite a lot of medication for RA that help if your not happy with taking MTX. The medication your doctor recommends helps with suppressing anymore damage being done to your joints. I take sulphazaline everyday, 5m of MTX twice a week and Hydroxychloroquine everyday. They do help. Hope you get all the help you need.

[BoneyC]

I took Methotrexate for 30 years from age 16 (diagnosed age 6) up until 3 years ago when I developed neutropenia. However, the drug worked for me, little or no side effects, I've had two healthy children, & I'm re-starting it this week. You are probably going to read more negative stories about MTX than positive ones, purely because the positive ones aren't that interesting. Be optimistic, MTX might suit you very well and give you 30 odd years of benefit.

[RBRainard92 in reply to BoneyC]

Thanks for your reply. Did you have your children when you were taking MTX?

[BoneyC in reply to RBRainard92]

Yes, two, 1993 & 1996. Everything was fine.

[TS_1]

Hi RBRainard92,

There are other options to Methotrexate, I think it is definitely worth talking to your Rheumatology nurse / consultant before you start it, you need to be happy with the drugs you're taking.

I was also diagnosed at 22 and couldn't tolerate Sulfasalazine so was prescribed Methotrexate by my consultant. I refused to take it after reading up on it mainly due to the impact on fertility. Whilst everyone reacts differently, I didn't want to take the risk. After speaking to the nurse about it I was put on Leflunomide instead.

Hope that helps

[RBRainard92 in reply to TS_1]

Thanks for your positive advice! I think I will talk to my nurse more before making a final decision. Being new to RA I have not heard of Leflunomide. Does it have the same positive results like MTX in helping to stop joint damage?

[Dogrose in reply to RBRainard92]

Leflunomide is quite dangerous in pregnancy too, you need to wait a couple of years after you stop taking it before you can become pregnant from what I recall when I took it. I did far worse on Leflunomide than I do on MTX. It is worth trying MTX first, all the DMARDS can have pretty bad side effects but you will be monitored. xx

[RBRainard92 in reply to Dogrose]

Ok Thank you! I think I will at least give the MTX a try.

[TS_1 in reply to RBRainard92]

I think everyone reacts to it differently but it does seem to work for me, I don't have any side effects and pain / swelling has definitely improved - I could barely walk for the pain & swelling in my knees before I started taking it and I'm fine now.

As per the comment from Dogrose, Leflunomide is dangerous in pregnancy so you have to stop taking it before you conceive, my nurse advised that a 'wash out' treatment can be done to reduce the waiting time to 6 months rather than 2 years.

I found the nurse to be really helpful, hope they find the right medication for you too.

[magglen]

Please start the medication as soon as possible. I wasn't diagnosed until too late and am now left with deformed hands and feet. I am sure your consultant will advise any change in medication. if necessary, when you choose to become pregnant. We are so fortunate to live in an age when there are so many things that can be done for this wretched disease and hopefully it won't be long before they find a cure. Many good wishes to you.xx

[aliCat]

I have only been on MTX for 4 years but the whole point is to prevent you getting joint damage. Share your concerns with your consultant, they understand what you are dealing with, but if you trust them then you have to take on their advice. My quality of life is so important to me, even if it means losing a bit of quantity. Good luck.

[Scottishlad]

The most important thing is to avoid damage to your joints. The damage cannot be reversed once it happens. If you have joints damaged with RA how will you manage the extra work that motherhood will involve.

I think at this stage use the most effective treatment for your condition. When you are ready to have children you need to reassess the treatment plan to allow you to have your children. This may involve you being on less effective treatment for a while. I think MTX has a 6 month withdrawal period before conception. Quite a number of the RA drugs are not suitable for women planning to have children either because they are known to cause problems or have not been safety tested for this case.

You need to discuss your treatment in detail with your consultant, talk about your plans and hopes.

Cecil

[Hidden]

I can only echo what nearly everyone above has said about the need to prevent joint damage. However, like many people I was diagnosed with inflammatory arthritis in later life. I'm sure that I'd have proceeded with even more extreme caution had I been younger and planning to start a family. Caution though is very different from hearsay and I think that methotrexate gets an overly bad press because those who don't tolerate it well are likely to have the most to say about it, which is quite understandable. I've never had any problem with it and it certainly helped for a few years before becoming less effective.

We all want to avoid joint damage and to minimise the effects of this disease as far as possible. And bringing up children whilst coping with out of control RA isn't a great prospect. You've got plenty of treatment options and I can see that you need to make decisions carefully. I think in your shoes I'd really emphasise my desire to have children to my rheumy, just to make sure that he or she is doubly, trebly aware of the situation. You'll make the right decision for you I'm sure as long as you get to a point at which you thoroughly trust your consultant's judgement and are very well-informed yourself. Wishing you luck and strength, you have a very good chance of living well with this disease.

[RBRainard92 in reply to Hidden]

I really appreciate your response! I think I will talk with my doctor more about this medication, and try it for a little bit to see how it works.

[norfolkjo]

I refused meth and started on sulfa which appeared safer but didnt work and I had side effects . I reluctantly agreef to meth and cried taking the pills as I was scared . In six weeks in on 15 mg side effects bit of nausea and horrid mouth taste but my pain and joints are massively better so wrll worth it. I toi managed to have no damage and have met people who have so I know I did the right thing xxxx

[denvajade]

Hi I am sorry to read that you have this horrible disease, and at such an early age. I did not get diagnosed until I was 55 so a lot different, but from my experience it has slowed the disease right down, I have only been on Methotrexate, no painkillers,a very light dose of antidepressants as I have fibro as well. I took tablets for nearly 7 years, then went onto injections which i would reccommend, perhaps see if you can have minimum dose and see if that controls RA . It can always be increased at a later date if not sufficent. I stopped methotrexate about 3 months ago due to severe stomach issues and I am now starting to flair up. Before being diagnosed my joints were already starting to be damaged and my hands had already splade out so if you can slow this down it would be good. wishing you well.

[Hidden]

Lots of sound advice has already been offered here.

Let me add something really positive: my sister had massive doses of MTX when being treated for cancer as a teenager. She recovered and lives a normal life, and she went on to have two healthy children in her thirties. So effects are reversible. Also the dose you are given is very very small. Even smaller if you have injections.

Good luck!

[farm123]

You do need some type of medication to help prevent joint damage as that is not reversible. Which of the DMARDs you try will need to be worked out between you and your rheumatologist or nurse - your rheumatology nurse may offer more information, support and understanding regarding future issues regarding children. It will help in the long run to have a good relationship with your nurse as unfortunately this is a long term condition. I was around 19 when I first showed signs and I now 27 years later have 4 children (2 were born 2 and 4 years after diagnosis and the other two 10 years later) which I have no regrets about although now in hindsight I am worried about them getting any signs of the disease as it has been particularly tough the last few years. It is a juggling game so try not to have ideas set in stone as some compromise and planning is needed. Unfortunately there is no crystal ball to tell you how your disease will progress and which medicine will suit you best. Bear in mind everybody's experience is different. You will not see so many positives on any of the drugs as they are not reported as frequently as the bad as generally the people have been able to get on with their lives with a lot less problems.

[Jaymaga]

Hi there,

I am 25 and have just recently started taking mtx. I too was scared about starting on the drug to but with the sulphasalazine not helping I decided to give it a try.

My specialist nurse was extremely helpful and said that the medication is one of the best to help prevent joint damage.

I have not yet started a family and starting Mtx was a worry for me too. However I have been told that the medication will not cause fertility problems it just needs to be out of your system before you start trying.

It can all be very overwhelming but if the medication can help me live a normal life then I believe its worth it.

Good luck

[Khozzy]

I was 30 when diagnosed with RA. I already had my children so the situation that you're in didn't affect me in the same way. However after having tried many different medications which all made me ill and becoming a single mum, I became bedridden. I am now 48 and started Methotrexate in 1998 and have been on 30mg even since. I am mobile and have no joint damage still despite suffering pain. I would ask you to think about your long term health.If you are planning children then maybe you could stop the drug until your children are born, but then restart after. It's very hard work looking after children with a disability and so maybe it would be worth thinking about your quality of life and any future children and your partner too before you make any long term decision. I am glad that the drug gave me options to live as much as I can now with my children. The side effects can be hard with feeling sick or tummy upsets, but you can work round this by having injections instead of tablets. No drugs are side effect free, but maybe you need to weigh up the pro's and con's and speak to your consultant about your options so that you can make an informed choice for yourself. Good luck whatever you decide.

[RBRainard92 in reply to Khozzy]

Im reading a lot about these injections. My doctor really didn't have much to say about them. Right now I am prescribed 6- 2.5mg tablets of MTX once a week. Are these injections of a smaller dosage?

[Khozzy in reply to RBRainard92]

It depends on your RA and consultant. The injections are just to avoid some of the side effects that you get from taking tablets. But it works in the same way.

[nevadawoods]

Most drugs have warnings about pregnancy. I really don't think any RA drugs are out there that aren't a risk. You may just have to stop taking anything while trying to get pregnant and while pregnant. An OBGYN would be able to tell you what to do. I've been on MTX since 2004. It was suspected when I just had pain in my fingers. By the time I got to see a rheumatologist, the middle joints of my fingers were ruined. Since then, MTX has kept the disease from progressing,and I don't have any really bad side effects. I say this because you are hesitant to take anything because you've yet to have damage, but I can tell you the damage will probably occur without meds.

[helixhelix]

It is scary, so like others say do talk it through with your docs before you decide. But a couple more things to think about. First off, active RA doesn't just mess with your joints but the constant inflammation can have a really bad effect on your other organs like your heart. So getting it under control is not just about protecting your joints or being rid of pain. And the second thing to think about is that all the research says that the earlier and the more aggressively you treat RA the better the outcome. And with a few lucky people after a couple of years of drug treatment they go into remission and can taper off the drugs without it becoming active again. Who's to say you wouldn't be one of those lucky ones? Good luck with whatever you decide.

[Hidden]

Hello, like Phoebe's sister I had massive IV MTX for cancer - about 3 years afterwards I had my gorgeous son who is now 27! Please don't refuse the MTX, it really does work and will not necessarily have any effect at all on future children. Good luck, Virge

[RBRainard92]

Thanks to everyone who has replied! I took to heart all of your advice and am very thankful I have found this site. After a lot of thinking and reading posts I believe I will go ahead and give the MTX a try. Im hoping for the best! Once again thank you all for all your help!

[dmc12]

Hi,

I had methotrexate and had no side affects from it . I also found in the early days of my RA that changing my diet and lifestyle helped enormously and I was off all medication for a number of years, however this was in the early days and is not suitable for everyone. I got a book written by I think, a lady called Margaret Hills (curing arthritis the drug free way) and used this diet and it really helped but everyone is different and you need to take advice from specialists and listen to your body and how you feel. All the best

Donna

[RBRainard92 in reply to dmc12]

Donna, thanks for letting me know about the book. I will defiantly look it up on amazon or see if i can get it at my local library!

[Hidden]

Hi there

I was also diagnosed in my 20's and I think it's very important to remember there are varying degrees of RA. Some people manage without treatment, some

need IV drugs and we all respond differently. I've been on Methotrexate (MTX) since 1995 except when I stopped it to try to conceive. I went back on it when my healthy baby boy was 3 months old and I'm still on it. I haven't had any problems except minor mouth ulcers the day after I take it. I've known people accidentally get pregnant on it and had no problems but I was told to be off it for 6 months before we tried to conceive. Only you can make a decision but research shows the quicker you treat RA the better the outcome. It sounds like your very ready for some medication to dampen down your immune system. I can highly recommend joining NRAS. Best of luck x

[RBRainard92 in reply to Hidden]

Thanks for the response. I am glad to hear that your baby was fine along with the people who accidentally got pregnant on it! I have looked into joining NRAS, but just haven't had the chance yet.

[rafriend]

Ive been ok on methotrexate I take a tiny dose I still have good days and bad. give it a go they can start you on 2.5 im taking 5mg