Hello

[Hairdevine]

So happy to have found this forum . Have been officially diagnosed 3 months ago , haven't found the right medication for me as of yet ! Too many side effects. Just came off of mtx

[Moomin8]

Welcome 🙂

[Philip]

Welcome.

[Strayleaves]

Welcome .

I'm new too. I'm about to try Enbrel.... have been on Humira , plaquinal . I am on methotrexate weekly . Diagnosed almost to the day , One year ago .

Good luck , and all the best

[Hairdevine in reply to Strayleaves]

How are you today?

I'm starting to feel some pain in the last couple of days . I go to the doctor in less than a week to see what is my next option as far as a medication goes . I'm glad you can tolerate MTX . It made me feel like I had the flu for 3 days . I'm a hairstylist and I have to work long days and I just couldn't stand it anymore. So you are trying two medications at once ?

[Strayleaves in reply to Hairdevine]

Hi There

Won't pretend to know all about RA , but can tell you what I know (to date anyway , because it's a learning curve for all of us ).....

On Monday I'll take my last dose of Humira. Hopefully next week , I will then get my script (from the government because you have to get approval for it ) of Enbrel . I will then take that injection weekly .I am also on methotrexate . I take folic acid twice per week (to counteract side effects of the methotrexate) I do take some supplements as well .

The best treatment , I have read , is to treat aggressively , early as possible. Years ago they use to only use the aggressive treatments when all else wasn't working , and there were signs of joint damage emerging. Methotrexate was one of those drug treatments. Apparently nowadays it is one of the main treatments. If needed, the specialists also then add another drug to work with the methotrexate. I guess some, like you who can't tolerate the methotrexate , then move onto one of the other DMARD class of drugs.

I do hope you aren't in too much pain at the moment .

My Humira has really just kind of stopped working , in the past three weeks or so .......so hence Enebrel. Can feel myself getting worse , bit by bit , or day by day ....I am ok .....but I just hope I get onto the new drug soon , and it slows things down again .

I see you are in the US ....I'm an Aussie....👍😀

Karen x

[Hairdevine in reply to Strayleaves]

Nice to meet you Karen. I'm Kelly

Always wanted to visit Australia !

I sure hope you can get some relief soon .

I have a wonderful man in my life who is very supportive. He makes me forget about my pain .

Just hoping to find something soon that I can tolerate . It's summer here and there is so much to do so little time ..our winters are long so you want to get as much in as you can in the summer so I want to feel good again.

[Strayleaves in reply to Hairdevine]

Agree with last post as well . It probably did take me three months to start getting benefit from methotrexate..... I did have few side effects but they did seem to settle . I am still getting a lot of headaches .....I don't know what that is .......if it's the methotrexate or the RA , been going on for awhile .

[nomoreheels in reply to Strayleaves]

Hiya Karen. You could try increasing the amount of water you drink, that often helps ease headaches from MTX.

[Strayleaves in reply to nomoreheels]

Hiya nomoreheels ,

Thanks for the info re the water ....

Do you think it's the medications or the RA , causing the headaches ? . I know u may or may not have the answer , but you do seem to be a wealth of information . 😇.

I have tried increasing the water and it does actually seem to be helping .

Xx

[nomoreheels in reply to Strayleaves]

It's not an easy question to answer given our response to meds is different but it does seem to be commonly questioned. I don't have a headache on MTX but I did on HCQ but I do drink plenty of water. Good you've increased your intake. You probably know that tension can result in headaches so you could try to do some simple relaxation exercises, try to see if you're subconsciously tensing your muscles, particularly your shoulder, neck & arms.

Sorry it's not a clear answer Karen but pleased you're doing ok on MTX.

[Strayleaves in reply to nomoreheels]

Thanks nomoreheels ,

I'm doing ok , am having last Humira tomorrow, then switching to Enbrel.

Hopefully this will help more !!

Not really one for having headaches , but seem to get a lot nowadays . They aren't severe , just more annoying..... often I wake up with it in the a.m.

Thanks

Karen xx

[medway-lady]

It takes 3 months for most to work so did your consultant take you off the MTX? as a lot of sid effects just go after a while.

[Hairdevine in reply to medway-lady]

Was on plaquenil first bad side effects , then MTX was worse. Felt like I had the flu. Trying to work feeling that way was impossibly hard . Couldn't do it any longer

[SassyRA]

Welcome I just joined this site also. I was diagnosed with RA April 10,2017. I am on methotrexate, prednisone & folic acid. The doctor told me methotrexate was one of the older medications used but probably had the least side effects. I only know what they tell me & that's one of the reasons why I joined this site to get real opinions.

[nomoreheels]

Hiya Kelly, welcome! I'm sorry to hear you've had the diagnosis but hope being here will be helpful.

I was diagnosed in 2008 & like you my first DMARD was hydroxychloroquine. That worked for around a year but as you'll know 400mg is the highest dose so there was nowhere to go with it other than add another DMARD. That was MTX, tablets for the first year & injections ever since, so 7 years. The HCQ was stopped as the MTX took control. I initially took just one 5mg folic acid the day after MTX then another the day before was added. I now take 5mg folic acid 6 times a week, just not MTX day & you'd have all on to take it off me! Just goes to show how we each respond differently to meds. As I can't go above 17.5mg (my liver objects) I need another DMARD to keep me controlled, which prior to leflunomide was sulfasalazine, unfortunately side effects determined that was stopped. So maybe one or other may be what your Rheumy suggests, unless you're considered for anti-TNF's/biologics not being in the UK!

I hope whichever you try next it's the one which both suits you & does the job. Do bear in mind DMARDs can not only take time to work (12 weeks or thereabouts) but the longer you persevere the more likely side effects ease, even go. These are quite strong meds & like with most of the specialist meds can take our body a while to adapt. Like your flu-like symptoms, that can be from meds which haven't had time to be fully effective but the same feeling can be from the disease itself. It's a difficult one to determine. It could even be that your initial starting dose was too high, MTX is sometimes started in a low dose & built up over a period of time, the thought being any side effects are minor & as the dose is titrated it's not such a shock to the system. SSZ is started this way too.

Anyway, before I start blathering on I hope your appointment goes well & your Rheumy has another treatment plan for you. If you have any questions don't hesitate to ask, we're a mine of information between us! ☺️

[Matilda_1922]

Hello and welcome

[Hidden]

Good Evening from the UK, & Welcome aboard this beautiful Arthritic Boat 😉

[LizzieR]

Hello! Welcome! This site is a life- saver

[Eiram50]

Hi and welcome

Marie

[Hairdevine in reply to Eiram50]

Hello to you ! Thank you

[Sassychick]

Just wanted to say hi and welcome 😊

[Angieb1983]

Oh my! I am ditto!!!! Been in and out of hospital and now prof Emery at Chapel Allerton in Leeds is putting me on Tocilizimab, it's a biological drug? I don't care as long as it works! Hope you start on something soon. This group is a lifeline and a font of knowledge! Welcome!!! xx

[keeta]

Hi love welcome yes it was the same for me.it was goid fir my r/a but it hated me.too many problems.take care. Now on embrel