DMARDs its a love hate relationship isn't it !

[Marionfromhappydays]

I am feeling sorry for myself....

So in reference to my earlier post this week I started sulfasalazine on Monday, first few days were OK and then my itching got worse (scalp, whole body, eyes) so emailed rhemy nurses they said to stop...

I thought 1 more tablet might not hurt, I am feeble sometimes at taking tablets so thought I would brave it out; Today I have a new friend ie the biggest cold sore ever on my top lip , my tongue has huge sore bits all over and my gums have joined the party and are really sore.

I had a sore throat on Monday when I started and its progressively got worse i sound like I've smoke a thousand cigarettes and my glands in my neck are up......

I am such a whinger, I just needed to have a moan about it, my husband has been brilliant since I got ill in May but I think it's really stressing him out that I am in pain and this first medicine has had such crappy affects. My joints actually already feel slightly better so that's something.

I am now thinking will all DMARDS lead to problems.like this as they depress your immune system. Considering my immune system is in overdrive and causes me RA you would have thought it would be a bit stronger and not cause me all these sore in my mouth......

Anyone got any good jokes?

I don't want to cry so maybe have a laugh instead ?

Thanks to you all xx

Liz

[Dspooky01]

As one door closes, another opens.....

I haven’t had SSZ so can’t comment but HCQ, Naproxen and MTX haven’t caused me any problems so hopefully the next one will work for you.

[Marionfromhappydays in reply to Dspooky01]

Thank you, yes another door opens 😁

[Hidden]

Like you sulfasalazine worked on my joints but it just didn’t like me.. don’t worry there are other drugs if this isn’t for you. You are entitled to cry. I hate this disease when it drags my family into it. Personally I would contact your team don’t suffer if it’s not for you x

[Marionfromhappydays in reply to Hidden]

I've stopped taking it as the nurses advised, I had such high hopes.

Thanks for all your help, funny how somethings work and other dont .

[Boxerlady in reply to Marionfromhappydays]

Sorry that it didn't work for you but something will 💐

[Marionfromhappydays in reply to Boxerlady]

Thanks x

[bubblyalex in reply to Marionfromhappydays]

They will find something. There are so many and it’s all sadly trial and error so can be quick but can take longer. Each one that we try helps them identify what we need. What are they suggesting is next to try? If you haven’t heard on Monday... perhaps a message to the team?

[Marionfromhappydays in reply to bubblyalex]

They haven't said, just said to see if symptoms go in a week .

I haven't got a date for my next appointment with consultant but its due in next few weeks. Think I will email the nurses next week to see what the plan is.

Everything is just so slow though isn't it. Deep breath !

Thanks for your help, I was feeling a little defeated but it's just going to take more trials than I wanted x

[bubblyalex in reply to Marionfromhappydays]

I know how you feel. I’d send a message on Mon/Tues and ask about the appointment and next steps. Hopefully because you’ve only been on them a week they’ll exit your system fast so you get on to the next idea quickly.

[bubblyalex]

There is braving it out and braving it out. Because it’s only week one it’s fair to think the symptoms might get worse as you take more pills? As has been said there are other drugs worth trying. Be brave ... but don’t be too brave. Big hugs. It’s a tough slow road but we will get there. 🍫

[Jillyanne]

Definitely don’t be too brave, tried that drug and did not work for me, so a good one came along , good luck 😘

[Marionfromhappydays in reply to Jillyanne]

Thanks Jillyanne x

[helixhelix]

Sulpha is definitely a love:hate drug. And itching is a big sign that it’s hate:hate. Take note that you might now react badly to sulphonamide antibiotics, so if the need arises make sure to tell your doc that you reacted badly to sulpha.

There are nearly 30 different drugs, so onwards...... This period is the absolute worst. It will change, you will find your prince charming of the drug world and things will improve. So feel sorry for yourself tonight, as you deserve it. But then look forward if you can.

[Marionfromhappydays in reply to helixhelix]

I definitely want to find my prince charming 😆

Thanks so much for your help,thankful there are more to try

[Gnarli]

We are all different so what suits one won't suit another. Sulphasalazine didn't suit me but MTX is now my best friend. As HH says there are 30 others to try and one of them will be the one. Promise

[mhlmom]

I lasted 5 weeks taking it before I became so ill I was sent for hospital tests to find out what was wrong with me. They switched me to Methotrexate and that was a lot better. Some drugs just don’t suit some people. It takes time to find the right one for you. Good luck x

[Marionfromhappydays in reply to mhlmom]

They are quite brutal drugs aren't they. Your experience sounds horrible to be frank, glad you found one that works x

[Nuttyshirlz]

Like nurse probably told you it’s trial and error. With any of them. I started on it had it bad told to stop for two weeks and then restart again. Second time with it had no problems. I’m also on mtx too. Being on both few years.

[Brushwork]

Oh dear that is not the best start to the journey.

There are many medications available, it is just a matter of finding what suits and works for you. Many of us RA veterans have been through a range of meds, for various reasons. Even when you find something you can tolerate and works, it may stop working.

RA is something we kind of learn to keep caged in the best way possible. I keep mine weak by not feeding it anything that might help it grow and misbehave. I also try to keep it exercised and tired. For a while that alone worked, now I have to medicate it but at least I am managing it with minimum intervention. It's my gremlin. Ha ha...

I hope you soon find something that works for you and your body can tolerate.

[Sheila_G]

I don't take this drug but it sounds like it isn't right for you. It certainly is horses for courses in this game. I would say contact your rheumy nurse asap. Good luck x

[Bopeep12]

Trying to find "the one" is,as everyone says not always straight forward. At least you have joined us on this site. So supportive and understanding.. Been there, done that, all got the tea shirt Keep your chin up things will get better. Good luck

[sheepdip]

I can sympathise. First time on Sulfasalazine I kept having recurring infections. This went on for 8 months and eventually they took me off it. I tried it again but after 5 days my mouth broke out with blisters, roof of my mouth was in agony and my saliva glands starting swelling up. I stopped immediately then contacted rheumatology. Unfortunately I am still waiting to hear from them to see what the next step is. COVID is delaying everything. I was diagnosed in November 2019. Here’s hoping you get some treatment that will work shortly.

[Marionfromhappydays in reply to sheepdip]

Thats a long time to wait isn't it, I can understand their concerns about covid but your joints don't understand the wait !

Hope you find one that you get on with, I couldn't imagine being on sulfasalazine for 8 months with infections you deserve a medal 🏅

[bubblyalex in reply to sheepdip]

Don’t wait to hear... call them

[bubblyalex in reply to bubblyalex]

Or get your gp to contact them

[Summerrain14]

I am so sorry to hear of the awful side effects you have had from SSZ. I wouldn’t say that all DMARDS will cause you these awful side effects. It is a case of finding what works for you with minimal or no side effects. I have been on SSZ for a year now and thankfully for me only ever had mild side effects in the beginning. I now take 6 a day with no issues. I have just started on MTX alongside the SSZ and no real horrid side effects as yet. My stomach is a little upset and I lose a day almost the day after taking it but I can live with this if it is as bad as it gets. I really hope a plan for a new DMARD will be given very soon for you. x