Hi, just going on Monday to see a nurse about starting the Methotrexate meds. Was rather hoping to take the other Sulfasalazine med which seems less toxic. Haven't got huge RA difficulties, but MRI showed knuckles and finger (which did flare up) and toe. Can anyone tell me if they (the clinical nurses) would be happy enough to start me on that first, just to acclimatize. Was supposed to have my chest x-ray, but really am not keen to take it.
Either way, sounds like i'm in for a bumpy journey into RA medication. Just had my Carpal Tunnel op two weeks ago too, so rather fed up.
Any help into how long these kinds of meds take to 'bed in'? Thanks.
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cyprusmum
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Hi cyprusmum I don't know how much help I can be to you, as I am still trying out different meds. I don't think the rheumy nurse can change your meds, I think it has to be the Consultant. You can express your concerns to her, and she can speak to the Consultant on your behalf, at least that's what I have done. I started off on Hydroxychloriquine but couldn't get on with that. So they put me on MTX, which I like you was not sure I wanted. Anyway I gave it a good try for 12 months, but it didn't seem to be helping. So now I am on Leflunomide and depo injections. I would say just speak to the nurse, they are good at giving you advice/information. I wish you the best of luck, and I'm sure they can sort you out. xx
Thanks, do you think she will do it there and then, or will i have to make another appointment to go through the whole rigmarole again. The original consultant I saw months ago was away on holiday when i went for my MRI results. The 'Stand in' consultant told me that he would have a meeting with the nurses or whoever and go over my file. They subsequently just called me and said that I was to start the Methotrexate (even though he had given me a leaftlet for the Sulfasalazine). To tell you the truth I was a little shocked at finding out that I actually had RA, rather than your 'bog standard' osteo arthritis, which is still painful either way. What power do the Rheummy clinical nurses actually have? Thanks
I know when I see my nurse, she will say she will speak to the Consultant and then I get another appointment in the post. As Livingston says it depends how your rheumy works. Also I think before any Dmards are started you have to have a chest x-ray. I did before starting Hydroxy. I am confident if you express your concerns, they will go through everything with you. I know my nurse did, and she gave me the confidence to give it a go. I know it's a lot to take in, and to come to terms with, but you will get there. There are plenty of people on here that will help you along. xx
Hi! There's lots of help and support here, so you've come to the right place.
Whether the Nurse Specialist will be able to change MTX for Sulfa may depend on the steer they have been given by the consultant & how much autonomy they have - it can vary from clinic to clinic. However, not at all a bad idea to raise the subject if that is how you are feeling. Please do be aware though, that all meds for inflammatory arthritis come with potential side effects. There's no saying if you'll experience any of them or not, until you've actually tried the drug. I've been on MTX along with other drugs for about 10 years now and have had very few problems with it. I had to stop Sulfa after only 10 days because of a bad reaction. Other people will be able to tell you very different stories.
You may well find that they'd like you to have a chest x-ray anyway. Arthritis can cause damage to the lungs and they usually like to get a baseline picture for comparison in case problems arise later on.
With MTX or Sulfa you would go through a period of building up your dose gradually, over the course of a few weeks. General guidlines for all Disease Modifying Drugs is they take around 3 months to have an effect and can take up to 6 months to give their full effect.
Hope your recovery from surgery goes well & you have a good appointment on Monday.
There's quite a bit of research that shows that you get the best long term results if you treat inflammatory arthritis "aggressively" - which means starting on the most effective drugs with the aim of getting into remission and then slowly reducing them. So it's not necessarily the worst idea to start with MTX rather than Sulpha as it has been shown to be the most effective drug for the most number of people. And both of them take a few months to take effect.
The other thing to bear in mind is that people respond so differently to the drugs and the only way to find out is to try them. What's toxic for one person is like eating smarties for another. So MTX might be completely fine for you, and Sulpha could cause problems. I'm on both (and a third one called Hydroxy) and struggled with both to start with in completely different ways. MTX made me feel sick and headachy, whereas with Sulpha I couldn't go far from a toilet for the first few months... Neither was pleasant - but they work! And that's what I hold on to.
Welcome cyprusmum. I can only speak in favour of methotrexate as as far as DMARDs go I've only had that & hydroxychloroquine but it's been the best thing for me. It does have an unfortunate & I think uncalled for reputation but it is the gold standard treatment. I wish my Consultant had been less "we'll treat this gently" & more "let's hit this" that's for sure! We do have regular monitoring whilst taking it, I'm back to fortnightly blood tests at the mo as I've recently had an increase from 17.5mg to 20mg but I normally have monthly bloods done. I'm reacting well & considered controlled though I regularly score between moderate or low disease activity.
I started on tablets, most do but I changed to injections which I find far better. If you're concerned about side effects unfortunately most of the meds we need to take in an effort to control us do come with them but there's no given you'd have any. We're prescribed folic acid as MTX is a folate antagonist so in order to maintain a good level we're directed to take it according to any issues we have. Some only take 1 x 5mg a week, others 6 a week as I do & just have less appetite & a little more tired the day after I inject. I've had a little hair loss since my increase but this has happened before so I'm confident it'll stop the longer I get used to the increased dose & it's so little only I notice it.
I hope others who've had or are taking sulfasalazine reply so you receive experience of the two DMARDs & can go armed with all the information you need when you discuss your choices.
I think you'd benefit from talking through your concerns with you Rheumy nurse & I hope she's able to suggest options if you still don't wish to try MTX, it's your body after all.
I hope you find your carpal tunnel release a success. I did & was surprised how quickly I was able to use my fingers & hand again once I'd had my second dressings removed.
Hi I was on sulfa for a year but wasn't taking my symptoms away so now I am on mtx inj as well but still having problems as I had 2 kenalog injections on my knee and ankle 3 weeks ago but their starting to wear off already as I'm starting to get pain in them again I also need to use a stick when I'm out as my ankles very weak
Hi I'm on sulphersalazine 10 years now did worry about it at the start only problems I had was taking it twice a day often forgot and I was not on the entric coated( make sure your on them) for 9 years eventually had stomach issues
My new consultent put me mtx I personly hated it made me crazy edgy and almost single also I drank lots to try to take the edge off
So I'm back on sulphersalazine which is great but as some have said before its probably not as effective as mtx ...but hey I've still got my girlfriend and beer 😃🍸
I have always had my flares of RA treated aggressively with medication and it seems to have worked for me, although I have long term damage to some of the joints.
MTX is the "gold standard" and most rheumatologists seem to want people on this because of the good results on the disease. But it doesn't suit everyone, nor is it effective for everyone, which is why there are so many treatments.
The rheumatology nurse won't be able to change your medication without asking the consultant.
Have you had a look at the pages on the NRAS site? - which are very helpful in giving unbiased information about the various drug treatments.
Thanks for all the replies. Will have a look around. I suppose I just have to try the first med and see how I get on. Trial and error as they say. Was nervous about the hair loss and sickness side of things. Does it generally only last for the couple of days you take the med and after one takes the folic acid, does that calm things down a bit?
Hi, just seen this thread. I've taken sulfasalazine successfully for over 10 yrs and had no side effects at all. My Husband was diagnosed early this year and I pushed for him to take sulfasalazine first as I thought it was least likely to have side effects! He had a very bad reaction to them and had to stop immediately . He is now on his 3rd week of methotrexate and seems fine. No nausea at all or anything else yet so as been said, we are all different and react differently to drugs. I can understand totally how you feel, but you just have to grit your teeth and bite the bullet so to speak and try each drug. It took me a good few months before I started to feel better, so stick with it. You will feel better eventually, as I keep telling my hubby!! Good luck.
Thanks, so would say, a three month trial to really give something a 'go' be the rule of thumb with Mtx etc? If one gets a headache or sickness it's hard to take something like Ibuprofen, as that can normally cause stomach upsets. Seems we are caught either way.
Does the nausea and sickness last all week long or generally the couple of days after taking Mtx?
These days I feel very slightly odd for a couple of hours after I take it, and I now do so just as I'm about to go to sleep so I hardly notice it. And that's it. Sometimes I'm a bit tired and wooly the next day, but I give myself an extra hour in bed which seems to sort it.
When I first started on MTX my hair thinned a bit, but it's also now back to normal. Ask your nurse/doc if you can start on a lowish does and build up, and drink loads of water and you should be fine. And 3 months is generally a sensible trial period.
12 weeks is usually the time you should notice a difference though it can take a while longer. Rheumys usually want us to trial it for that long as we each react differently. Similarly with side effects though we are prescribed folic acid to replenish what is lost through the MTX.
It's quite normal to be prescribed NSAIDs, more effective than ibuprofen usually but again, we're also prescribed a ppi (stomach protector) such as omeprazole as long term they have the ability to cause tum problems without them.
Again, it's not a given you'll have any problems though nausea is a common one, as long as you're aware that's the main concern. I don't have it any more but as I said previously I've less appetite & a little more tired the day after injecting. Tonight I'm just having a bacon butty, that always goes down well!. I just don't plan to do anything much on a Thursday, I chose Wednesday so I know I'll be ok to go out for meals or socialise at the weekends. If your Rheumy chooses to only prescribe folic acid a day or two as my first one did & you're not coping if you have side effects ask if it can be increased.
Thanks, was just trying to be forewarned, but still pretty nervous in a way. If hair falls out, does it grow back or is it a constant falling out for a few months? I have visions of me resembling a parrot without feathers (sorry bird lovers) but you get my gist! Nice to know there are people on here who understand my concerns (having lived through it all). I feel like the 'new kid in school' with all these medical facts floating around my head.
Oh I understand, it's natural to be concerned, particularly if you've not needed more than the odd paracetamol before, even they have side effects! I've got hair loss again as I've had a recent increase in dose but it grows back, usually wavier as it did when I started MTX 6 years ago, a big bonus as my normally fine hair has body now! It's only more hair in my brush & I have a good hairdresser who cuts it accordingly. I keep it shorter but that's more for ease of styling as I have difficulty raising my arms & can't hold a hairdryer so use a hot brush. Some people do have more hair loss, no denying that, but if those who have recorded it here are to go by far fewer than most. I'm sure Jo (Jora) won't mind me saying she has beautifully curly hair, check out her profile pic, so it can actually be a benefit the new hair growing back & the hair follicles changing due to MTX! x
Thanks, that's interesting about the hair follicles. I have really short hair basically a crop, so will just leave it for a few weeks and then get it cut.
I have had various joints paining me and inflammation of my right hand, which is now recovering from the CT op, so hope to put that one to bed for a while.
No, but the area where the stiches came out has split a little, so have re-bandaged that up, just to keep it from catching on anything. My let hand is picking up the slack, but as I am right- handed, it's making my left hand ache terribly. My daughter has been helping a bit, but they see me getting on with things, but I get help with chopping veg or stuff like that.
Thanks for telling me about Jora, I sent her a little post. It's great that there is a pet sharing 'thing' going on. I have a German Shepherd, but can't walk her, had two Cavaliers over the past 20 years, so my husband decided in his infinite wisdom to get her. She is truthfully the strongest dog in the world and a big baby.
I am more mindful of my 'condition' now even more so, but still am walking and trying to get on with things. I even turned out a wonderful apple cake yesterday, with a few lumps of over large apple, but at least i tried.
Good idea. I had mine done in Spain & it seems to vary from what I had to do to here. I had two changes of bandages & had to keep it elevated longer but it's been a great success, no problems whatsoever & the smallest of scars. I think it was 2 weeks post op when I had my stitches out so maybe yours were taken out a little too soon. Keep an eye on it & if it's not open dab a little 100% tea tree oil on it if you have some.
I share your love for German Shepherds. Our old lady died recently but like yours was a big softie. She found us, we have other dogs & she camped outside our gates, big chain cutting into her neck & painfully thin. She'd obviously broken free or let go by her owners & I gained her trust over the day feeding her little & often. She may have had an awful start to her life but she was certainly loved for her remaining 10 plus years & paid us back with her love for us.
It's great that feeling of achievement isn't it? I bake less frequently now but when I'm in the mood I really enjoy it.
It's mind blowing how mean some despicable humans can be to a animals. Thank God for people like u. I would have adopted lots of animals over the years, but for my husband stopping me! I get too emotional about it all, but hate to see them suffer. My daughter and I have rescued and called wardens out, when we saw two abandoned dogs. Another time, there was a darling GS (quite a young dog) running in and out of traffic on a main road. I had shopping bags, and ran into a hardware shop just to borrow a lead and took him to the local vet. At least he was safe there.
That certainly took all my strength and my hand was in bits afterwards, but well worth it.
Coming back to the CT. The stitches were taken out at day 12, there were 7, the bottom 5 are ok, it's just broken open at the top, the rest seems to be healing well.
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