Hi all
Just wanted to introduce myself.
Im 37 years old,married… Just, after 18 years!!!
I have a 14 year old son.
I was diagnosed in may of last year with PA.
I also suffer with endometriosis.
Ive been taking sulfasalazine for over a year now with no signs of improvement. Ive just also started taking methotrexate(last week) so early days yet.
Hoping to speak to others who i can relate to and share advice with
Welcome to the group and congratulations on your marriage.
A year is a long time to give a med. Six months is a more reasonable time frame to at least start to see improvements. Hopefully you’ll get a good response from methotrexate. If your doctor didn’t already talk to you about folic acid supplements call up the office. It can help avoid some of the side effects,such as mouth sores. And drink lots of water.
I agree with Stoney that a year is a long time to stay on a DMARD that's not helping. I hope Mtx works for you but as you say, it's early days. If Mtx doesn't help or doesn't help sufficiently you may meet the criteria for starting a biologic, as trying and 'failing' two DMARDs is a key criteria (criterium? Oh well, you know what I mean!) But I wouldn't be overly patient about it ... 6 months would seem to be a very reasonable point at which to start asking questions about next steps .... or perhaps it'd be good to ask how your rheumy is thinking about longer term options rather sooner than that.
I found Mtx helped me quite a lot, ultimately it didn't do quite enough, but it did sort out stiffness and pain really well. Other DMARDs didn't have any noticeable effect though. So basically, fingers crossed for Mtx, definitely sounds better than Sulfasalazine to me.
Welcome! Sounds like we have some close similarities. I
Sorry, phone glitch… Congratulations on the marriage!! My guy and I have 3 kids ( our son is 13) and have been together for 15 yrs no aisle walk yet so I hear you! That’s awesome!!! I was allergic to sulfa and had to stop MTX but hopefully it will help you with your symptoms. I was so disappointed to stop because I could tell it was working but I was having trouble with the side effects being worse than my pain so I had to stop. Do not hesitate to try because I said that. Lots of people who take it have done wonderful and I still think about trying to readd it slowly to my biologic if needed again. Good luck and I agree with Stoney and Sybil on time frame for change. Six months of any drug even a bio is enough time to know if there are any improvements. The changes are so little at times it can be hard to gauge but don’t give up. I just moved from humira from Enbrel but I gave it a good 5-6 months before making that choice and have been very aggressive about my approach because my job is very physical. Anyway happy to meet you and hope you find as much support as you need here, the people and info are Incredible!
Hi guys
Thanks so much for your replies. I’m currently sat in hospital waiting room due to possible side effects from methotrexate. I’ll post when I find out what’s going on.
Nat18 xxx
Oh Nat, that is a bummer. On the other hand, if the problem is MTX, it means that you will be able to move on faster to something that migiht more helpful.
Keep us posted! And belated congrats from me too.
How are you doing? Hope you're okay.
Hi Sybil
Visited GP today and she thinks my problem is due to methotrexate. I have been given some treatment and have to go for swabs. She said I have to still take my methotrexate tomorrow though so I’m just hoping it doesn’t make things worse??
Thank you for enquiring about me ️ Glad I now have some support xx
That will be an interesting experiment. Hope it goes well, but if it soesn’t that’s one DMARD off the list, and you move on. I always think that a worse scenario is to take it, endure side effects, have a very slight “maybe” improvement, have your rheum say she thinks it’s helping some, while you still feel like a bag of dirt. If you react badly to the MTX, you’ll be done with it, and you can try something else.
That is very bad luck. You sound quite calm about it though.
I can see why they want you to persevere with Mtx as I tend to think of it as the best of the DMARDs though clearly that is not always the case. I do agree with Seenie that moving swiftly on can be a blessing in disguise if your rheumy thinks you'd do well on, and will qualify, for biologic treatment and if that's something you'd want.
Good luck with your next dose of Mtx. Let us know how it goes and if you feel like chewing the fat about treatment options that's always an interesting discussion here.
Well, hope all is well. How did your MTX dose go today? I knew right away my side effects were MTX after next dose once they started. Wishing you luck and like everyone else said don’t give up if you don’t agree with it there are other options if needed.
Hi Rachael
I was advised by rheumy nurses to miss my dose this week and see if my side effects settle down but then try it again next week.
I’m still taking my sulfasalazine and folic acid though. I am due to take methotrexate
Again next Tuesday so will see how I go on.
Can put up with a bit of diarrhoea for a couple of mornings after taking it but not the intense itching and bleeding I had down below (sorry if too much info)
The GP thought the pill my be interacting with the methotrexate?? (I’m on the pill to keep my endometriosis under control).
I’ll let you all know how I go on and I’m so glad I have people to talk too. Thank you all for replying ️:heart:️ Hoping you are all as well as can be at present!!
Well what a bummer when you were hoping for results! No, not too much info you would be surprised at what we all talk about here, as respectfully as possible of course. Some people have suffered from psoriasis in these areas too, it really has no boundaries. I hope you are drinking lots and lots of water with MTX, this is a must. I struggled with that when on it and dehydration leads to increase SE probs. Hope they get that squared out for you. Hang in there everything seems to take time with PSA to sort out. Can you see any benefits from taking it yet?
Hi Rachael
I’ve only had one dose so far so was surprised to have any side effects that soon.
They told me it will take around 12 weeks to see any benefits so I guess I’ll have to persevere for now. Nobody told me I had to drink plenty of water on it either so I guess I’ll have to drink a little more as I’m not one for drinking water too often!
Glad I can get some tips on here though☺️
Thanks for your reply
Not to make light of your misery, Nat, but it’s the good effects that take months to show up. The bad stuff usually happens right away. Cruel, isn’t it, but that’s the ironic truth. I gather that the nasty effects of your MTX are on the digestive system. (And don’t worry about the TMI thing, we share TMI all the time. Want to join in on a girls-only bra conversation? LOL) One of the things that you might suggest to the nurse and/or the doc is trying the injectable form of MTX. Because it bypasses the digestive system, it has far fewer side effects, and some think it may be more effective. The injection itself is the easiest, most painless one ever. I don’t know why injectable isn’t the route of choice.
And yes, drink water. It’s a good habit to get into anyway.
Hi Nat, I am so sorry you're going through this. It's just ocurred to me that sulfasalzine can be harsh on the stomach so I wonder if adding methotrexate was just a step too far for your insides. Absolutely, though, ask about changing to injection. It is sooooooo simple to do and usually only involves doing it with a nurse (either a rheumy nurse or the practice nurse at your GP's) first time round.
I have psoriasis (as Rachael mentions) in places the sun doesn't shine and the itching! Oh yes, the itching!!!!! A tiny smear of Canesten Hydrocortisone provides me with instant relief but do check with your doc that it's ok for you to use in this area.
Hope this all resolves for you quickly.
Hi all
I only get the odd patch of psoriasis on my arms and legs at the moment. The itching was thrush according to the GP caused by my immune system being suppressed and the methotrexate interacting with my mini pill?? I do appreciate all your advice and I will defo start drinking more water ️
Does having endometriosis complicate matters somewhat with Mtx? I'll add my vote to the water drinking ... I've probably mentioned it already lol! But can't mention it enough as sometimes it sounds too simple a thing to really make a difference, but it does.