Need help please

Hi everyone I have just been diagnosed with rheumatoid arthritis and due to start sulfasalazine have been looking at some of the posts about how bad the side effects and am really concerned

[Vonnie10]

Hi some people do amazing on it don’t read the negative post .. just try it and get your ra under control because it’s well worst down the line if you don’t trust me

[Hidden in reply to Vonnie10]

Thank you vonnie10 unfortunately I am a very anxious person I will hopefully get on okay with them

[Vonnie10 in reply to Hidden]

I know it can be a anxious time but you could be ok go on amazingly with it lots are on it and do great goodluck x

[Hidden in reply to Vonnie10]

🤞🤞👍

[allanah]

So I was on sulphasalasine.... no problems!!! So talk to your rheumy and rheumy nurses. Look at nras.org.uk for advice, lots about being newly diagnosed and drugs and good luck. You need to get under control and the drug therapy should help!,

[Hidden in reply to allanah]

Thank you allanah will have a look

[allanah in reply to Hidden]

Great and keep chatting here, it's a great site I think !😀

[Hidden in reply to allanah]

Absolutely ,great to know I can ask for help and you kind people will try and reassure

[allanah in reply to Hidden]

Lol we will give it a go x good luck on this next step. My motto with RA? Patience is a virtue 😂

[Hidden in reply to allanah]

Will keep you posted how I get on with the medication also to see podiatrist don't know when just got diagnosed last Friday

[allanah in reply to Hidden]

Early days, all new and scary. You'll find people use the sites when they have problems so dont be overwhelmed with it ! However to try reassure you I'm on treatment and it took a few tries of different drugs but I'm back almost to normal with occasional flares! Good luck with your appointments. Take a list of questions with you cause you , if you are like me , will forget what you wanted to know!!

[Hidden in reply to allanah]

Thank you so much will do👍

[essexgirl in reply to allanah]

I was on them for 8 years and had no problem, but with all meds it try & error , while some suit one others suit another , it’s a time staking situation, but you could be good on them so try not to worry as time will tell

[bubblyalex]

I’m still on Sulfasalazine which was my first (started in March)... now on two others as well. Had a bit of increase in heart burn so increase of PPI sorted that out. Good luck 👍🏻

[Hidden in reply to bubblyalex]

Thank you bubblyalex for your reply you are all so kind replying to me and I wont hesitate to ask further questions I feel a lot less scared

[Jarme]

Hi Coisty,I was diagnosed with RA in 2013! I was started on Methotrexate , then Sulphasalazine, and the Hydroxychlorquine. I was scared to start those pills but knew I had to try them! So 7 years later I’m still taking the same pills! They have really done me well! Best of luck! I hope you do well on the Sulphasalazine!

[Hidden in reply to Jarme]

Thank you so much jarme for your reply does make me feel a bit better

[bhajek]

Hi! I have been on it for 3 years and have had no problems. It works great for me. I had to start out on a smaller dosage than my doctor suggested and it worked great for me without having to increase the dosage. Everyone’s body and how they react is different. I really recommend this. Good luck!

[Hidden in reply to bhajek]

Thank you very much bhajek for your lovely reply am feeling optimistic now and will definitely let you all know how I get on you are all so very kind

[Zip1]

Hi, I think most people are nervous when starting any medication but when we find the right one, or combination it can change your life for the better! Good luck I hope Sulphasalazine Is the one for you.

[Hidden in reply to Zip1]

Thank you very much zip1 for good wishes👍

[Hidden]

Best thing is to try and see how you go. We are all different and you have people reacting superbly on some that you would not and so there is no point checking in many ways what it COULD do! I have been on MTX pills and injection, sulfa and lefluomide and all not worked but I tried each one as determined to get my RA under control. SO move ahead in a positive way. Good luck

[Hidden in reply to Hidden]

Thank you deeb2908 I know am being silly but when I read some of the reviews I just panicked I will definitely give it my best shot as this rheumatoid arthritis is dragging me down

[Hidden in reply to Hidden]

It is hard but any drug has good and bad to it depending on how much you read and where you read. I work on the assumption I want to feel better and if it works and side effects low then its a win win. I have had a bit of an issue this year with all DMARDS but I work on the fact I want to feel better than I do now, I am due to go onto biologics as DMARDS not working for me but being off DMARDS everything has upped ie pain and fatigue etc. so DMARDS do help most and you just need to work out what works for you.

[Hidden in reply to Hidden]

Yes Deeb2908 I will just have to get on with it and hopefully find the one as I want my mobility back as I have always been a very active person thanks again

[Knit12]

Coisty everyone reacts differently to drugs. I was on sulphasalazine for 20 years and the only side effect I had was the occasional bit of heartburn which I cured with sherbet. You will be the best judge if it’s suitable for you so stop worrying. If we took for gospel every post on a treatment that didn’t work (and I include myself on this for there are some which haven’t been good for me) we wouldn’t try anything. I only stopped as my RA was no longer accepting the drug as it was too used to it and I took a massive flare up. Remember on here you only tend to hear about the problems not from the thousands of people using a drug with no problems.

[Hidden in reply to Knit12]

Thank you knit12 I really will try anything as I babysit my 2 year old grandson 3 days a week that I absolutely love doing and I need to get fit for him

[Belle76]

Hi I have beeton sulphasalazine for 20+ years on and off it’s the only one I can tolerate. Just be aware that you may get a few side effects to start with like headaches. When I first started it I had to do it in stages until I got use to it, advised by my doc. Take 1 tablet for so many days then after that add another one which helped. Try to leave space if you have other medication to take, and always try to have with food x

[Hidden in reply to Belle76]

Thank you so much for your reply it really helps to hear some positive replies will try and behave myself and stop worrying

[Hidden]

Welcome Coisty sorry you have to join us.

This is a great place to get help we do understand.

All drugs no matter what for can have side effects . R A is a disease that requires patience finding the right drug is a lottery some people get lucky the first time. If one drug doesn’t work then there is always another. If the there are side effects then you will just stop the drug no harm done then try another.

Personally the thought of untreated RA is by far worse. Untreated RA means a life of pain and immobility I don’t want to let life pass me by I want to participate in life so I will try anything . Please ask any questions no matter how silly you think they are. They are not silly someone can help.

Keep in touch x

[Hidden in reply to Hidden]

Thank you j1707 very much for your reply yes the the thought of this being untreated is horrendous so I am now looking forward to starting on my treatment so glad I found this site you all brilliant

[bpeal1]

This forum is a great place but try to remember people mostly post here because they have a problem or a question.

I’ve been taking sulphasalazine for 13 years with no problem at all. Even took it all the way through my pregnancy with my son who is now 11.

[Hidden in reply to bpeal1]

Thank you bpeal1 that's great to hear I will definitely ask you all if I have any problems

[bpeal1 in reply to Hidden]

Definitely do ask if you have any questions or problems - it’s a very supportive community. However, what I was trying to say is remember when you are searching the forum you probably won’t find many posts saying ‘this is wonderful’. Good luck on your journey with RA and I really hope sulphasalazine is the one for you!

[Hidden in reply to bpeal1]

Thank you very much for your helpful comments much appreciated 👍

[Sheila_G]

Hi Coisty. Welcome to the site. I don't take sulfasalazine myself so I can't help you but there are plenty of people on this site who can. Keep posting. You will get lots of help on here.

[Hidden in reply to Sheila_G]

Thank you sheila_G for your reply I definitely will stay on this site you have all been so helpful

[woodstar1]

Hi,we are all different, I've been on it for over 6 year's. I've been absolutely fine except for bright yellow pee!! We are all different and lets remember most people only post when things are very difficult and horrible. I really got my disease under control with this so for me it's brilliant. Hope it goes well for you. 🤞🤞

[Hidden in reply to woodstar1]

Thank you so much for your reply glad you told me about the yellow pee 😂 that will save me panicking

[bpeal1 in reply to Hidden]

Oh yes. The bright yellow pee!!🤣🤣🤣 When I was pregnant and had to regularly take samples to the midwives I got lots of rather strange looks and had to explain every time that I wasn’t an alien with glow in the dark pee!

[helenv81]

Hi Coisty

I was diagnosed in 2014 and put on sulfasalazine. I am still on it now. It works well for me.

[Hidden in reply to helenv81]

Thank you very much helenv81 that's great to hear feel so much better now you are all so kind and positive

[woodstar1]

😂🤣 Hopefully you will be fine with it. If you look at my very first post it was exactly like yours, absolutely frightened to death of the meds. I got some great advice, I work normally, I exercise at least 5 day's a week, to think I couldn't walk to the en suite most morning's before!! As I say good luck. 👍🤞🤞

[Hidden in reply to woodstar1]

Thank you woodstar1 that's great to hear its mainly in my ankle and I have a lot of pain walking and was really depressed at the thought of this was my life from now on so really looking forward to a brighter future 🤞

[stbernhard]

Hi Coisty, sorry you have to join the club. We already differently to drugs. Sulfa was absolutely fine for me. I believe that the damage done to your body by untreated RA is far far worse than the side effects for most people. As Allanah said, the best thing you can do is to learn as much about RA, medication, self management and living with it. The NRAS website is the best source for this I know. All the best.

[Hidden in reply to stbernhard]

Thank you stbernhard the thought of this going untreated and getting worse really is more terrifying than the bad reviews I read so onwards and upwards for me thanks to you all👍

[Paula-C]

I know it's scary reading about these drugs but you have to understand that a vast amount of people don't really get any side effects, you'll only read about people getting some. I was on sulfasalazine ended up on 6 a day and I was fine, I didn't even get the orange wee that's suppose to be the most common side effect, I'm now on a combination of methotrexate and an anti tnf, again no side effects at all. I've been in remission since early 2013, I don't need any pain relief at all. x

[Hidden in reply to Paula-C]

Thank you Paula-c that's absolutely wonderful to hear 👍

[EmmaS-NRAS NRAS]

Hi Coisty,Sorry to hear about your recent diagnosis but, as you will have already seen, there are lots of positive supportive people on here to reassure you at the start of your RA journey. I've put a couple of links below that you might find helpful just to make them easier to find and don't hesitate to contact the Helpline (0800 298 7650 or email [e-mail]) if you want to chat about any concerns you might have.

New2RA pack - nras.org.uk/publications/ne... - to order by post or download the contents including 'Medicines in RA', New2RA booklet and Fatigue Matters

Sulfasalazine information - nras.org.uk/sulfasalazine

Really hope this treatment works for you and do keep us up to date with how you're getting on.

Kind regards

EmmaS-NRAS

[Hidden in reply to EmmaS-NRAS]

Thank you very much Emma yes this site is wonderful and all the very nice people who have tried to reassure me has been amazing I will certainly keep in touch x

[Nuttyshirlz]

Hi I’ve being on Sulphasalazine for over 4yrs now. Along side few others. I had no problems with mine just the wind 💨 lol but it settles. We are all concerned when we start new pills 💊. Only way to look at it is this is going to help me and try not to over think it. Also any concerns contact your rhemy team. They have heard it all before and will answer your questions and put you at ease.

[Hidden in reply to Nuttyshirlz]

Thank you nuttyshirlz you have all been so reassuring I really appreciate it 👍

[Nuttyshirlz in reply to Hidden]

Your welcome I no it’s helped me a lot

[Paula-C in reply to Nuttyshirlz]

Must agree with Nuttyshirlz, take the tablets and forget about it, don't look for side effects, if you start looking for things you'll probably convince yourself you've got side effects. xx

[Domhem]

I took it and no problems at all and really helped!

[Hidden in reply to Domhem]

Thank you domhem 🤞hopefully the same for me

[Domhem in reply to Hidden]

Please be assured that these meds really do help, I was exactly the same but they stop the inflammation and that’s what you need to do! You will be fine and feel so much better

[RheumST]

Doctors choose the meds that they believe will be most useful for the particular type of rheumatism that you have. Side effects of any meds depends a lot on the dosage.

However there are lots of things you can do for yourself that is quite independent of the meds.

1 Excercise - all of my doctors emphasize this. You need to do both strength (lift some dumbells perhaps or other stuff) and cardiovascular (up and down stairs is quick and effective if your joints allow it, or just walk).

1b Massage - If you live w someone who can give a good massage enlist their loving hands. It made a huge difference for me, but of course I'm the luckiest person to have a wife who is naturally talented with massages. Although it may only relieve the pain for a couple of hours, it has made and still makes a big difference to have a massage every day by simply asking. Often even without asking.

2 Yoga - especially stuff that strengthens the core. I found that things like "bird dog" (on all fours extend opposing leg and arm and hold for 5-10 secs, or just holding a "plank" which is just a pushup position - from knees if that is easier for you). I'm sure you can find lots more, good core strengthening things to do on the web.

3 Get plenty of sleep if possible. I've got serious sleep issues, and my doctor the other day suggested cannabis gummies cut up into 5 pieces (so it is too weak to produce a high, but strong enough to help with sleep. A neighbor takes CBD to reduce pain and the need to get up to go to the bathroom which disrupts his sleep.

4 Distract yourself by doing things you passionately enjoy. Things that engage you so much you forget about any pain. For example, playing a musical instrument, or reading a really good book, or watching a terrific movie, worked for me with any kind of pain. Of course this only works while you are engaged in the activity, but reduction of pain for any length of time will reduce your overall stress and is therefore a true blessing.

5 Have a healthy but really great tasting diet, with lots of green vegetables, and fruits with meat reduced to once or at most twice a week. Add nuts and seeds too. You are likely to find some of the most tasty meatless meals in various Ethnic Dishes using recipes that ordinary people ate who could not afford the high cost of meat.

6 If you are not already taking it, take vitamin D3 (1000 to 2000 IU, cheap over the counter)

If you are about 55 yrs or older be sure to take vitamin B12 (no more than 300-500 gm which is hard to find, because they come in ridiculous mega doses). Lack of sufficient B12 for older people may produce cognitive problems. You need a minimum, taking more does not enhance brain function. Why older people? Because with age the reduction in stomach acid means that this vitamin cannot be extracted from the food that we eat, hence we need to get it in pill form.

As a matter of fact, so far there are no meds that enhance cognitive function - those TV ads are total BS.

7 For up to date, scientific research based information, subscribe to Nutrition Action, a bi-monthly publication from Center for Science in the Public Interest - no ads, no fake BS. Your library may carry it.

That's about it and Best Wishes,

Dan

[Hidden in reply to RheumST]

Thank you so much RheumST for all your suggestions I normally was out walking every day I also have a treadmill I bought it to keep me fit during lockdown but hardly got the use of it as I started to get pain and swelling in my ankle but it's to sore at the moment I am on naproxen 500mg and paracetamol it certainly takes the sting out of it but its still to sore I find if I go for a walk I suffer for it so have just really been resting it this week

[RheumST in reply to Hidden]

Ah, once the meds start working you'll be able to exercise. I forgot to add that massage helped me a lot. As one of the luckiest people, my wife who is not trained masseuse, gives absolutely great life saving massages. I simply have to ask, and sometimes I don't even have to do that. It makes a huge difference, even though the pain reduction may only last a couple of hours. I'm going to add it to my first reply.

[Hidden in reply to RheumST]

Thank you RheumSYX any advice is really welcome

[Julyjoseph]

Started on sulphasalazine last September,I started at 2 a day then went up to 4 a day. At about 8 weeks on sulfasalazine, I started getting improvements. First day I experienced mild itchiness so I took only one tablet for the following two days. I'm now at 11 weeks still have joint pain, but I am satisfied as I do not need to take anything else like NSAID or other pain meds. Hoping this continues to improve over the next few months. Please have your medicine with food that's my advice.

[Hidden in reply to Julyjoseph]

Thanks so much Julyjoseph sounds good to me🤞

[Boxerlady]

Just wanted to say welcome and to add that I've found Sulphasalazine fine; a little bit of nausia initially but nothing now apart from the nuclear yellow wee! 😂

[Hidden in reply to Boxerlady]

Thank you so much Boxerlady🤞

[Angels54]

Hi I was on Sulfazina and it helped , however developed a fine rash on arms had to stop it .

[Hidden in reply to Angels54]

Thanks Angels54 for your reply will just have to hope for the best and see what happens 🤞

[essexgirl]

What you have to stop doing is googling it as it’s scary , a lot of it is out of date & hearsay , if you want to know anything ask your rhuemy or gp or come on here and hear the real answers , we’ve all done it so we learn as we progress

[Hidden in reply to essexgirl]

Thank you essexgirl I know it's really bad to Google but I can't help it but as you say if I need any questions I certainly will come on this site you all have been so kind