Sulfasalazine, feeling much worse

[Debra6590]

I started three weeks ago. My health and symotons are much worse now. Feel like my health is declining and in a full on flare with hands curling again. Only other drug is depo medrol shot. Is this normal that it gets worse before it gets better?

[Debra6590]

Oh and I’m only on two tablets a day

[Doughnut61]

I’m on Sulpha and Hydrox and feeling quite good x other than liver results are high x

[helixhelix]

I guess you're recently diagnosed? This is really a horrible time (well you know that!) as the disease is still running riot and the drugs have yet to kick in.

Quite a lot of people do have your experience of feeling worse once they start on the drugs. Usually it is just because the disease is getting more active, and not because the drugs don't work. It's a hard thing to balance giving the drugs enough time and putting up with side effects that will wear off, and throwing in the towel and saying stop. Most time the doctors will want you to try a drug for at least 3 months.

However, tell your medical team how you are feeling as they may want to increase the dose or give you stronger anti-inflammatorys or something.

[Debra6590 in reply to helixhelix]

No I'm not newly diagnosed. I am three years into my journey. I have tried methotrexate and hydroxychroloquine. Both gave me adverse side effects . I've been treated with a depo medrol shot this year and have felt back to normal till I went on this drug. Now feel back to square one. Good job I don't work! It's half term and my poor little girl is suffering indoors with me

[AgedCrone in reply to Debra6590]

The Depo shot will be masking your symptoms....& SSZ can cause nausea in the beginning.

If I were you I'd get back to whoever is prescribing your meds, altho 3 weeks is a bit soon.......it is usually tried for 12 weeks.

Have you had your DAS checked....you may qualify to try Biologics?

It must be very difficult coping with little children....ask your doctor for help.

[Debra6590 in reply to AgedCrone]

If the depo is masking g my symptoms then I must be in a really bad way. I feel like I've been run over with a truck. I've logged a call. Not taken any meds this morning ...

[AgedCrone in reply to Debra6590]

Hi Debra.....No it just means the Depo is working, but if you felt better before you stared the SSZ, it sounds like it may be the culprit.

I have found that some Dmards are worse than the disease...one I was on way back ...can't remember which too long ago - caused daily vomiting & despite persevering it never worked...from there on I usually gave a drug a month & if it was no no help I was back on my rheumatologist's door step.

But back then - I was diagnosed in 1999 & living in London, it was so much easier to get rheumy appointments.

I do hope the doctor you get to speak to today can help.

Do try to keep optimistic, there is a drug out there for you ...have you got a Rheumy nurse...a lot of times she will be much more help than the average GP?

If the doctor you speak to today can't help ......do call your rheumatology department & push for an urgent appointment.

Can't think of anything else you can do ...but as you will read here, there is light at the end of this rotten tunnel.

[Hidden]

I would speak to rheumatology. I had the same experience on sulfasalazine. It actually caused huge problems for me. If you feel really a good deal worse do contact docs and let them know.

[Debra6590 in reply to Hidden]

Thank you. I will ring them today

[nomoreheels]

Is this your first DMARD Debra? If so it could be the waiting time before it starts to work & you're at the beginning of a flare. Alternatively with steroid injections there is something that's called a steroid flare. This is what can sometimes happen after the injection is given, it's the body's reaction to, in your case, methylprednisolone. Be kind to yourself, if you can have a lazy day & if it lasts longer than a couple of days & you're still feeling worse maybe think of contacting your Rheumy team, you should have been given a helpline number.

I hope you start to feel the benefit of both soon.

[Debra6590 in reply to nomoreheels]

This is my third steroid injection and my third dmard. It's been three weeks and each day I am getting worsen I've logged a call with my team and hopefully get some contact with them later.

[Hidden in reply to Debra6590]

Hope they phone back soon and are helpful.

[Gnarli]

In your position I'd ring the rheumy team and get some advice. Unfortunately, not all meds will suit everybody and it's worth remembering that sometimes the side effects do wear off. Sulphasalazine gave me awful side effects but there are many who thrive on it once they get over the initial problems. Wishing you well

J

[Elswick]

Hi ya I was the same on sulfaslazine it made me so ill never felt so bad lost appetite no energy I think I lost 5lb in 3 weeks rang nurse told to come off it ASAP I am now on methotrexate slow going but hopefully getting their good luck I no exactly how you feel x

[Debra6590]

Yes they have confirmed I must stop taking it and getting a rheumy appointment asap. Hopefully my steroids will kick back in and I can be a bit more well again . Thanks for all your support

[Nsmith13]

I came off it as I felt so ill I've just been taking pred until my nxt app and see what's nxt I've been ok on it for last few week it's like the old say between the devil and the deep blue sea 👹🌊 I'm trying to taper again now but the relief is tempting for a while

[Shalf]

I cannot understand why people like Debra don't get put on Biologics - like NOW! Debra, you are on your third Dmard. Without the DAS criteria, you should be eligible for Biologics because three have failed. I see it's early days for Sulphasalazine but your hands are curling! You are also taking steroids. Don't allow other treatment to begin after the horse has bolted! You need something stronger, hopefully more effective NOW! They must take into consideration that you have tried Dmards for three years!! In your case, I only see money as being an issue!! Be determined, assertive and polite. I wish you best of luck! X

[Debra6590 in reply to Shalf]

I agree with you. I am a strange case however. I am sero positive and have high rf.p and anti ccp also. One rheumy told me biological could stop the disease from developing but I wasn’t worth the cost! I mean really, how rude!

[GranAmie in reply to Debra6590]

Sorry, coming late to all this. 'Not worth the cost' ?? How dare s/he!! Seething 4u - I was put on it this summer - at 75! Didn't think I was worth it as in pain but not agony and not complaining [much]. When I queried it, was told it's quality of life, not age that's the factor. Sooo COMPLAIN ... again and again. wishing you improvement. xx

[VeronicaF]

I couldn't cope on that drug, it made me sooooooooo ill and I felt I couldn't breath, I was only on it for 6 days, it started off good, no effects then went all down hill, ring your

rheumatology and tell them how you feel

[Debra6590]

Thanks x