Is anyone else on high dose of sulphasalazine?

[Susie22]

Hi! Due to a flare up of symptoms , s young house dr in my rheumatology department ( doing work experience as part of gp training) with no rheumatologist in the building has told me to increase my sulphasalazine tablets to 8 per day ( from 6) . This will be a dose of 4g. Is anyone else on this dose as it seems quite high?

Massive staff shortages at my hospital but I could phone emergency help line in morning. He seemed to think it was correct but tablet bottle says don't exceed 6 - agh!

[keeta]

No on 6 thought that was high xx

[Susie22 in reply to keeta]

Yes, me too. I was put up from 4 to 6 a month ago - will keep to 6 until I have checked that he is right. Thanks xx

[keeta in reply to Susie22]

What else are you on

[Susie22 in reply to keeta]

Hydro chloroquine 2 tabs a day. Failed on methotrexate. Have been flaring since May and steroid injections didn't do much. I also take 2 naproxen a day. Wouldn't mind if a rheumy had put amount up but it was this nice young gp trainee , think rheumatologist had phoned in sick 😬X

[keeta in reply to Susie22]

I am on olumiant tablets and 6 sulf a day .can.t see why 8??

I.m not 100pc but better than for a long time .you need to ask why 8.

Keep us updated.x

[Susie22 in reply to keeta]

I will- thanks! Xx

[keeta in reply to Susie22]

Xx

[Creakywrists in reply to Susie22]

At one point I was put up to 8 tablets from 6 by one of the doctors at the clinic - not my consultant. I was also on hydroxy and methotrexate. I queried it but was told that sometimes doctors increase the dose beyond the recommended limit if a drug is working. I was ok on 7 but began to feel really sick when I went up to 8. After I injected methotrexate the following day I got a very bad headache along with the sickness. I contacted the helpline and was told to cut back to the original level and drop it again if I still felt sick. I’ve been on 4 ever since and now take Benepali as well. I think 8 tablets is the dose of sulfasalazine used in ulcerative colitis

[Susie22 in reply to Creakywrists]

Thanks for that , I'm not surprised that 8 sulphas... and methotrexate too would be hard to take! I think I'm going to phone the department tomorrow and query it. It all seems a battle- but this helpline is brilliant. Helps to know others experience the same ups and downs, doubts etc. Thanks again

[barbieg]

A locum Rheumatologist told me to increase my Sulfasalazine from 4 a day to 6. He told me 6 was the maximum dose so I would ring your RA helpline to check.

[Susie22 in reply to barbieg]

Thanks I will. The general consensus seems to be that 6 ( which I've been on for a month) should be the right amount. . I did query it with this duty doctor but feel he was looking at wrong chart maybe. Thanks again

[helixhelix]

If you have Crohn's disease you can go up to 12 a day, ugh!! But I've not seen anyone on that sort of dose for RA. I was on 6 a day (3g) and that was quite enough.

[Susie22 in reply to helixhelix]

Thanks

[Fra22-57]

I am only on 4 and when asked my rheumatologist if it could be increased he said I was on highest.another lie

[Susie22 in reply to Fra22-57]

Mine raised mine from 4-6 when my knees had suddenly got really bad . I had to go to 5 for a week first, then to 6. It has brought my blood tests back down a bit so seems to be working and I havnt had any different side effects but everyone is different- maybe there is a reason particular to you why it might not be a good idea, but worth asking again as it seems many are on 6

[helixhelix in reply to Fra22-57]

Like Susie says, perhaps there is something in your medical history that means the doctor felt that 4 should be your personal maximum. Or are you very small perhaps? As people also judge does in amounts per kilogram of you.

When I moved to France I was on 3g (6 pills) a day and my new rheumoltogist was not happy at all. She felt that 4 should be my maximum.

[Fra22-57 in reply to helixhelix]

I weigh 56kg I asked to be referred to a London hospital but they can only advise him.they said my RA was not managed enough so recommended Abatacept. It took 3 letters and me saying I would go to another rheumatologist for him to now take notice.hopen this helps

[Scottishlad]

When I was on Sulfasazine I used to spread my dose into three taking it morning, mid-afternoon and bedtime.

[bpeal1]

I was put up to 8 tablets a day a few months ago by my consultant and have had no issues and it does seem to have made a difference.

[Maggsie]

I was once, many years ago, taking 18 a day. It was an error based on the Rheumy writing take 6 three times a day, which got translated into 18 a day. This went on for about 6 months with no-one, especially me, being any the wiser. It only got sorted when I told the nurse that it was making me very sick and I was throwing up the 6 tablets. She was horrified and immediately took me off them. Anyway, moral of the story is, it didn't do any lasting damage so 8 a day might be OK, but I would double check just in case.

[Hidden]

My advice would be to ask a pharmacist if this is a safe dose