Am I silly to start methotrexate?

[Nelliekel]

backstory...

Diagnosed 6 weeks ago. Had a steroid jab, pain okayish,managed with cocodamol & naproxen.

Had x rays for methotrexate monitoring & then blood tests. Consultant not happy with liver function test, told to stop naproxen and need another blood test Tuesday.

BUT...

I was planning on TTC next July and the delay in even getting on methotrexate just makes it feel even more pointless starting it. It'll be another 2 weeks min to start it,3 months min to see any results and then off it for 6 months before TTC. I mean, I'm happy to delay TTC a little bit, but like not years.

Questioned this with consultant and he said he'd want to get my RA under control before advising TTC (it is bad to be fair, nearly every joint is/was affected) so, I guess his plan would be to wait till I'm feeling better and then switch the methotrexate out with something like sulfasalizine.

Steroid jab also stopped working last week and I'm not on a prednisolone taper, I feel amazing, but gutted I can't just stay on this forever

[Nelliekel]

Sorry and I'm NOW on a prednisolone taper.

[ruth_p]

What’s a TTC? As you are only 28 I would advise you to try and get your RA under control asap to limit joint damage. Start the mtx and try to ditch the steroids as the side effects can be awful - I had cataracts at 18 and total hip replacements by 26.

[sylvi in reply to ruth_p]

Like you Ruth i want to know what TTC is.xxxx

[Runrig01 in reply to ruth_p]

Trying to conceive. I agree Ruth that trying to get rheumatoid arthritis under control, should be the priority. You could try switching at a later date. MTX is the gold standard. Let’s not forget it can affect more than your joints, with many suffering heart and lung issues. So it’s important to get it under control.

[StuMck55 in reply to ruth_p]

hi TTC =Trying to Conceive, I think

[Sheila_G]

Sorry. I don't know what TTC is.

[StuMck55 in reply to Sheila_G]

hi TTC =Trying to Conceive, I think

[Sheila_G in reply to StuMck55]

I am so sorry you are facing this dilemma. It is a very difficult position to be in but there are people who are on this site that have been in the same position. They are better able to help you than I but I wish you all the very best and pray that you make the right decision. All the best

[Nelliekel]

Sorry guys, yes it's trying to conceive, so I'd be delaying a baby by starting methotrexate and then having to switch in a year or 2.

[StuMck55]

I have serious RA ( diagnosed at 40 yrs old I am now 55) with many deformities on my hands and elbows, its crucial in the early stages of RA to get a balance, Steroid jab should have lasted a bit longer. I would suggest you are firm when talking to your specialist to get a superior medication, as they always will try the cheapest option at the start, that can go on for years with no improvements. Methotrexate is vital, that does help a lot, but its need to be taken with a TNF inhibitor (tumor necrosis factor) such as Humira (adalimumab) or Imraldi injections. As you have recently been diagnosed and on Methotrexate it is vital to have blood tests every month, this will determine if you need to lower or increase your methotrexate medication.

I have since gone off the injections at the advice of my specialist, and am now on Infusions bi yearly, the drug is called Rixathon. I am now only on 10MG of methotrexate weekly, has been steady for 2 years now.

weight loss will improve mobility , especially if you are suffering with your knees, if you are a smoker best to give it up, that helps a lot, but sticking to a strict diet and cutting out most acidic and very fatty food will also help. As with anything in life, you can eat and drink anything you like in moderation.

believe me its not an easy road, but there are a lot of things to do to make it a little better.

regards Stu

[Neonkittie17 in reply to StuMck55]

I don’t think the rheumatologist would allow a biologic if the lady is trying to become pregnant. Some biologics can take an age to clear your system. Also as we know, Rheumatologists usually want to try a patient on both first line dmards Sulphasalazine and Methotrexate to start with before a biologic is allowed to be prescribed. (I understand that Sulpha can be taken whilst women are pregnant and this is a much safer route.) That’s the standard way of doing things but I know of people who didn’t get a second dmard and jumped to a biologic quite quickly when they were really very bad with RA. Glad to know your Rixathon is working. I had 8 years on the original Rituximab but I’m changing from it as it’s made my Ig’s plummet.

[Leics]

It’s a tough situation and a bit of a predicament but for what it’s worth I would delay the new baby and get the RA under control with MTX. My first thoughts were what would you be like if you had a newborn to cope with along with the inflammation of RA ? A year isn’t much of a delay and it might be that MTX isn’t the drug for you anyway as it doesn’t suit everyone. Just my two cents worth. I know I’m not your age anymore and my girls have grown up but I’ve been struggling for a long time and I’m just about getting to the stage of being more proactive with my grandkids we look after them once a week and a few months ago I would have given anything to be able to go for a walk or the park with them. I’m not there yet but improving and rampant inflammation is no picnic jump on the RA first.

[KittyJ]

I was in the same situation as you. I put off mtx for a long time whilst waiting to fall pregnant and as a result I now have lots of joint damage in multiple joints. It’s not only your joints that can be affected either. You really need to get your RA under control for a while first to avoid joint destruction as this will affect not only you but your children’s lives. You need to think about priorities here, I’m sorry to paint a bleak picture but I wish I’d had someone saying this to me as my life would have turned out differently. Good luck in whichever you choose 🤗

[Ritaritis]

good morning, I've been on this for 18 months approx with no side effects.🐕🐕

[Neonkittie17 in reply to Ritaritis]

Which med?

[Ritaritis in reply to Neonkittie17]

Sorry, I take methotrexate and some meds for oestoporosis without any side affects.🐕🐕

[Hidden]

I was offered ‘egg freezing’ before I started on Mtx. The decision is yours obviously, but I would try and get your RA under control. It can cause ridiculous fatigue (especially if you also have Fibro or something else). Everyone IS different, so what you do is completely your decision. I would ask your Rheumatology nurse if she can refer you to any targeted counselling so you can talk through all your options.

[ZiggyZebra]

I wonder if they could offer you an alternative such as etanercept/Benepali. I started my RA when I was 28 too, although didn't try to conceive until I was 33. I was lucky that my arthritis had been brought under control by this time but I do know, if the advice is still the same, that you will have to be off methotrexate for 6 months before trying. Some of the other medications might not have such a long gap before trying. As others have said though it is extremely important for you to get your arthritis under control before hand. Good luck

[helixhelix in reply to ZiggyZebra]

I’m not sure that there is that much difference between MTX and biologics re conception

And chances of someone who has been diagnosed 6 weeks being put on biologics is slim anyway..

[Nelliekel]

Thank you everyone. I think I'll just go on the methotrexate and hope I can settle everything down fairly quickly. I know I'm still youngish so, I don't mind waiting a little bit longer x

[helixhelix in reply to Nelliekel]

I think that’s a good decision. Who know MTX might put you into remission quickly and hold you there in the months before you try to conceive. And once pregnant many women find they also go into remission.

Good luck, and hope it all goes to plan..

[Sms94]

I’m not TTC just yet but I was was diagnosed last year at 27 and methotrexate absolutely terrified me so they started me on hydroxychloroquine and then recently added sulfasalazine.

Just saying, it’s an option to ask for sulfasalazine x

[Aporiac]

I sympathise with your situation - especially about not being able to continue on steroids (which have also been the only effective treatment for my RA so far - i.e. over 18 months). However, there are concerns over long term use (although I don't know the dose vs side-effects equation). I understand they are safe to take when trying for a baby and during pregnancy, so I can see the attraction. Also, they do help prevent joint damage, but maybe not as effectively as DMARDs? I believe there are DMARDs other than MTX that are safe for pregnancy, so it's a shame these are not being considered, especially as having your RA stabilised using MTX is not going to be of much use once you start trying for a baby (because you'll have to stop taking it). The problem in my experience is that consultants have their own rather rigid way of working, and it can take a lot to get them to deviate from their standard treatment sequence regardless of your individual circumstance. Also, as I think you've worked out, you can get stuck on treatments that aren't working or are not suitable for other reasons for many months, which can accumulate into years. Like most people with RA, you are going to have to find the right balance between being proactive so you don't get forgotten about/stuck on ineffective/unsuitable treatments and being realistic about how fast things can go. One of the most important skills people with RA need to develop is endless patience! Remember you can write to your consultant, so it may be worth gathering as much information as you can, and organising it in a letter stating your objectives and asking what treatment options are available, with their respective pros and cons. Or go private if you can afford it.

[Helen-NRAS Moderator]

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