I have been on sulfasazine and hydrochloriquine for approx 2 months, still don't feel good has anyone been on this?

[Nantucket]

[Tillytop]

Hello Nantucket

I'm sorry you aren't finding that the meds are helping yet. Unfortunately it can take time to know if the meds are going to work for you. "2 - 12 weeks" are numbers which seem to be suggested for many of the DMARDS. And don't forget that, with sulfasalazine, as with many of the others, the dose is built up slowly so I'm guessing that, in two months, you may not have been on the full dose for long.

I don't know what (if any) other drugs you have tried but please don't despair if this combination doesn't help you enough - there are lots of other DMARDS available. It can take time to find the best combination.

Hopefully you will have a follow up appointment with the rheumatologist before too long so that you can discuss your options.

Thinking of you.

Tillyx

[Hidden]

Hi I'm on this combination - it takes about 3 months to build up - however I'm not sure it's working for me either!

[Nantucket]

What dose are you on? I feel really ill dont know if it is the drug or R A.

[Hidden]

Hi Nantucket,

I take at the moment 2 Sulfa and one Hydroxy in the morning and the same in the evening. I was told to try and up the Sulfa to 6 a day if I could. I tried a little while ago but I felt a little bit sicky in the evening, so went back down again. I'm now plucking up courage to try again! Might try 5 at first then 6. They do seem to work with me so I'm thinking that the last remaining pain I'm feeling may disappear if I up the quantity. We'll see!

Still relatively early days, so keep it up for a while longer.

Love

Carolyn

[helixhelix]

I take 5 sulpha a day, plus 2 Hydroxy ( and methotrexate). It did take a long time for things to pick up for me, and it took nearly a year before I really started to feel that I was getting this under control. I'm sorry it's s not working faster for you, but when you say you're feeling I'll do you mean the pain in your joints or are the drugs making you feel a bit queasy? I did get side effects of headaches and so on for the first few months. But don't suffer in silence but tell your rheumy dept if you're not feeling good. Polly

[Nantucket]

Thanks for all your replies, the sulpha and Hydroxy are really making my joints feel good but I just feel off colour, symptoms are flu like, that is why I am not sure if it is the drugs or r a. When I rang the rheumy nurse she said it definitely wasnt the drugs, she said maybe I had a bug, I told her I felt like this from the start of the drugs, I have an appointment next week so maybe I will get answers. This site is so good I am a newby but feel people understand, thanks.

Carole

[earthwitch]

If you have extremely bad flu-like symptoms then it can actually be a hypersensitivity reaction. The weird thing about those is that it doesn't always come on immediately (like other allergies), but can be weeks down the track, or at points where you increase the dose again. With you having had it since the start of the SSZ I'd say it was really likely though.

I know it happens with SSZ, not sure about hydroxy, because it happened to me. I had a devil of a job convincing my GP that I really thought it was hypersensitivity, and in the end had to send an email to the rheumatologist secretary (to pass on to rheumatologist). I also had mildly itchy skin the whole time. I came off the SSZ, and then once the reaction had gone away (started feeling better in a day, but it took a couple of weeks to leave my system) then I tried again with the SSZ. You can desensitise to it by starting at a much lower dose (half a tablet a day) and only increasing when you have really got used to each level of dose - much much slower. Unfortunately even the slow start caused the same reaction to me so I had to give up.

I had quite a job to find out about hypersensitivity reactions, because even though older info about SSZ describes the flu-like illness, newer info put out to NHS trusts doesn't. With me it really wasn't just a "flu" feeling - it was an incredibly bad flu, and just kept on and on. You may need to say really strongly to the rheumatology nurse that "I am sure that my flu-like feeling is coming from either the SSZ or the hydroxy, and its so bad I don't want to keep taking it. Can you ask the rheumatologist if I should I stop both, or just the SSZ because I'm not prepared to put up with this?"

I think sometimes they really do expect you to put up with too much, and don't recognise these hypersensitivity reactions, so don't be afraid to really say it strongly, or go straight to the rheumatologist (or their secretary to pass on a message).

[Nantucket]

Thank you earthwitch, I appreciate your comments. The annoying part is my joints feel so good, I have an appointment with the consultant next week and see how it goes from there, you have to be strong like you say but it can be difficult when you are with the them thanks Carole

[earthwitch in reply to Nantucket]

It is annoying when otherwise you are getting a positive result. SSZ didn't do anything noticeable to my joints (I have Spondyloarthritis, not RA) but it definitely did calm down my gut completely (confirming to me that its likely to be inflammatory bowel disease as well), and of course my gut symptoms came straight back when I stopped it. But I wouldn't go back on it now - that flu feeling was horrible.

[pippylongstockings]

i to am on this treatment, didnt have much change until the meds was up to now take 200mg in the morning an 200mg at night along with taking hydrochloriquine same doseage and 25mg of methorexate an only starting to get better improvement over the last wk i hope this helps

[Nantucket]

Hi did you get flu symptoms also and how long on the dose?

[Giggle]

Hi I was on sulfasalazine and hydroxycholroquine for about 3 years after I couldn't tolerate MTX. Maximum dose of 6 tbs a day and two hydroxy. It does take a while but it did start to work for me. I felt sick at the beginning of the sulfasalazine too but it passed after a couple of days. I also used lansoprazole as the hydroxy was causing terrible heartburn/indigestion. I felt well for a good while after the treatment was fully in my system. I did have flu like symptoms once because my white cell count was lowered due to the meds. Which I reduced for a couple of weeks(at advice of my doctor) then increased again and everything was fine. Are you having your bloods checked regularly? I would definitely discuss all your symptoms with your cons next wk though. Everybody reacts differently and it might just not be the right combination for you. I still take sulfasalazine but I have just started rituximab .

Hope you manage to get things sorted out and start to feel better soon.

Lyndsey x

[Nantucket]

Thanks giggle, i was on methotrexate for about 12 months ago but that was lowering my white cells, they eventually let me try this combination, I have tried knocking the dose down but I still feel these horrible flu symptoms, I find it difficult getting through to the rheumy people as all they say it can't be the drugs. Thanks for your reply it really helps. Carole

[Kathyfitz12]

Before I went on to Mtx 5 years ago I was put on SSZ - I stuck it out for 12 weeks which the consultant said was make or break time and I felt really nauseous every single day - couldn't face food and at the end of the 12 weeks the bloods showed it hadn't had any effect at all ....so I don't think it's worth staying ot it just in case it works one day!!! Ask your consultant for a diferent approach.

[Juliette64]

Yes Nantucket, it can be frustrating. I was on Sulfasalazine and did well until my dosage was increased. Then I became ill. I didn't have an appeitite ,weak, dizzy snd just sick!! Im still on the plaquenill 2x day. I cant tell that it helps but at least it doesn't make me sick. The purpose is to slow the progression of the disease. Good luck on your next trials.