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How long for this drug to take affect??

Posted , 3 users are following.

linda17563
linda17563

My sister has been 18 months with RA, she is now trying Sulphalazine (spelling?) has been on these, 4 tablets a day for 6 months, she is still in lots of pain, and stiffness...she is being told..it`s still early days for the drug to take affect...has anyone else waited this long?  she has tried MTHX with awful results....she adds a pinkiller when it`s too bad to cope with....Thank you....

0 likes, 14 replies

14 Replies

  • curley123
    curley123 linda17563

    Posted

    Hi linda17563. Sulfasamszine (spelling) I took a few months several years ago. It was rx by my rheumy along with humira weekly injections, prednisone/as an alternative to methotrexate. It caused extreme constipation & I never got any noticeable relief from it. Diagnosed in late 90's, the eArly onset of RA was ruff for me the first 3 yrs.Remi-caide infusions along with prednisone, folic acid, pain meds, diet (I half ass followed diet) and a lot of ice packs and heating pads got the best result FOR ME. Then I had wonderful result with humira for 7 yrs or so. Enbrel then for a few years. CURRENTLY I use Orencia, 15 mg prednisone day, folic acid 200mg, Cymbalta 60mg x 2 day...... + coreg, lisinopril. The PREDNISONE over time induceed diabetes. I inject insulin twice day. Rarely do I have a severe flare up. For ME, the Cymbalta (an antidepressant) helps A LOT. But no, she should have got some relief before 6 months. Hang in there! You will find a combo that is right. & your dr and his staff should be understanding to her need. Good luck. David in mississippi
    • linda17563
      linda17563 curley123

      Posted

      Thank you for that, I will pass your remarks onto my sister....keep well...
  • Ozziehall
    Ozziehall linda17563

    Posted

    Hey Linda. Sorry to hear you're having problems.I also tried sulfasalazine with prednisone to no avail.Recentlt started enb about 6 weeks ago still no relief.Hopefully the sulfasalazine will work for you because prednisone does a lot of damage to body. I also take max dose of methotrexate. As a rule try to stay away from medicines that do permanent damage.Also try to take as weak a painkiller you can.If the pain progresses you'll need stronger medicine in future so allow your self room.
  • Rowbirdie
    Rowbirdie linda17563

    Posted

    Hi

    arthritus research uk website says may take 12 weeks to work-  . I take 3 tablets twice daily as well as methotrexate . There is another dmard called hydroxychloroquine that can be added too.

    Which country are you in? In the uk RA is usually treated aggressively in the early stages by trying several dmard a together if one is not working. I think she needs to ask her rheumy what else can be tried . obviously the bad experience with mxt doesn't help. But for me, after 2 dmards were still not making enough difference after 9 months I was put on a biological which has greatly helped. I know it takes some time to find what works for people , without negative effects, but it sounds to me as though you are wondering if more can be done. 

    • linda17563
      linda17563 Rowbirdie

      Posted

      Thanks for replying  (everyone) yes, my sister is wondering what else to help with the pain...she has only ever ben prescribed one DMARD  to take at once....Tried MTHX /Hydrox....now on Sulphasalizine....to no affect, she takes 4 a day....she has asked for a second appoinion with another Rheumy....hopefully it won`t be a long wait!   Strangely enough, the only freedom from pain she has had, is when she went in hospital for gallbladder op, and was given 3 lots of antibiotics...totally pain free....they didn`t wan to know, yes, we`re in the uk!
  • frances85589
    frances85589 linda17563

    Posted

    One of the drugs I am on is sulfasalazine. Took about 3mths to take effect I think.but think it's the prednisolone I've been on for 4years that is the main help.I also take pregabalin n amitriptyline. Consultant won't offer me any more biologics. I have been on three.they should be offering you something like that.I would ask Linda
    • linda17563
      linda17563 frances85589

      Posted

      Thank you for that....I am going with my sister when she has new Rheumy app....they just fob her off, she is so houasebound with the pain....and only 50....just not right...

      How high a dose of Pred are you on, if you don`t mind me asking?....I am on those for another reason...the other drugs I am aware of....for nerve pain....any port in a storm I say!  Keep well...

    • frances85589
      frances85589 linda17563

      Posted

      Yes Linda on 10mg prednisolone a day.I asked if my sulfasalazine dose could be highered as I struggle so much.I am on 4 x500 mg a day.he said that was highest dose but I not sure.I hope your sister gets more help and she is lucky to have a caring sister to go with.She wants to turn the tears on as I find it helps them see how desperate n in severe pain you are
    • linda17563
      linda17563 frances85589

      Posted

      Thanks for the advice, the Rheumy she has now, won`t even let her talk, she says be quiet and listen to me!....that`s why she`s trying to change to another one, they should have the pain!  My sister I think was told 6 a day was the maximum for Sulasalazine....
    • Rowbirdie
      Rowbirdie linda17563

      Posted

      Hi Linda

      yes -try to find another rheumy. Does she have contact with a specialist nurse? I have a phone number I can ring with queries/ problems.

      i usually trust professionals actually, but not enough is happening here. You can look up NICE guidelines online for diagnosis and treatment of RA . In uk the advice is early diagnosis and treat aggressively . There are criteria for being eligible for a biologic if DAS 28 score shows severe disease activity despite having tried 2 dmards for 6 months. Certainly they could prescribe corticosteroid jab to help while waiting to see if dmard works.

      (NRAS and arthritis research uk websites are useful.)

      if you can, go with her to appointments. When you are stiff, in pain and discouraged it s hard to remember the questions you wanted to ask and to take in what they say.it s important she says exactly how much pain she s in.

      The effect of antibiotics is interesting ( or could it have been the rest?) Could her RA have been triggered by an infection? Out of my experience really- but you d think it's worth mentioning to a rheumatologist.

      all the best.

    • linda17563
      linda17563 Rowbirdie

      Posted

      We did mention it to Rheumy and doctor on ward at the time...they were puzzled but really not interested.  I did look up about it as well, and think some where in USA they were more up on it, so to speak....even if it was triggered by infection, she is clear now...showing in blood tests..

      When my sister rests she is in same pain as moving around, and certainly more stiff....hence more pain and so it goes on...

      Will look up the criteria....but the rheumy`s seem to have their own agenda!  She does have  a practice nurse, who told her recently.....DMARD`S are not painkillers, but are to keep the inflammation down, so you have to take painkillers as well...., we know that, but with inflammation down, hence the pain lessens surely!!.....she has been on these now for at least 18 months...It`s just a minefield.....Thanks again....

    • Rowbirdie
      Rowbirdie linda17563

      Posted

      You are right to keep asking these questions- because yes! The less inflammation the less pain. I was only ever advised to take paracetamol which doesn't really tackle RA pain but perhaps takes the edge off a bit. But I was also put on prednisolone tablets in a decreasing taper whilst waiting for dmard to work. These corticosteroids really help reduce inflammation and pain when nothing else is working. There are issues about long term use of these but try asking about them to give immediate relief.( or same med in a jab)

      i know the catch 22 situation- pain moving about and pain and stiffness after sitting still. Still good to open and close hands/ rotate wrist and ankle/ move toes/ knees / shoulders as able. At my worst I could barely get out of bed- needed help to turn on tap to wash and couldn't stretch my arm out to pick up a cup of tea. This is all behind me now- so do keep asking what more they could do to deal with this as there are untried options as yet.

    • linda17563
      linda17563 Rowbirdie

      Posted

      Thanks for that info....I myself have been on long term steroids ( 4years) so she knows the score with them , but like me, if it enables some quality of life....well...

      My sister has had the jabs, 7 so far, but they are getting less affective now (tolerance?) She tries to walk around the cul-de-sac she lives in....but pays a heavy price with foot pain especially the next day....but she dosen`t give up....she finds the afternoons more tolerable....

      Glad the worst is behind you now...it gives us hopesmile

    • Rowbirdie
      Rowbirdie linda17563

      Posted

      Definitely tablets next if jabs are wearing off too soon. I had one that lasted 8 weeks and the next only a week then onto tablets. 

      She s doing well to keep up that bit of walking- good for her! But tell her to keep on at them until she gets treatment that works. Your rheumatology department is taking too laid back an approach . You do have to pester a bit and report back again that no improvement. Keep a diary of joints affected and how long she s stiff for in a day and things like increased ache in feet after a short walk the day before. They need to know how bad this is because it sounds pretty awful.

      hope she gets some better treatment soon- keep goingbiggrin

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