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Trying old medications for 2nd time?

As5567As5567 Posts: 665
edited 20. Dec 2014, 20:16 in Living with Arthritis archive
Has anyone ever gone back to an old medication with any success?

I'm currently taking Simponi and have just had my 4th injection, my first 3 injections were half the recommended dose for me due to infection fears and other problems, last week I took my first full dose injection and the results were exactly the same. 2 or 3 days where I felt "excellent" by that I mean just good enough for me to get by happily enough at a pain threshold I could cope with. now 9 days later (Today) I'm back to exactly how I have been since last January when I had to discontinue the use of Remicade due to infusion reaction.

I'm due to see my Rheumatolgist again next week and I'm thinking about asking her the possibilities of trying Enbrel again. Has anyone else ever done something like this? I do remember how good I felt on Enbrel even though it stopped working I do remember that my doctor at the time switched me to Humira after around 2 weeks of extreme pain returning while on Enbrel. I was also around 14/15 years of age back then so things could have changed. I also prefer to have a weekly shot rather than monthly, reason being is that if I do get an infection which is a very high possibility right now due to open wounds from recent operation then I'm only 1 week post injection where as on Simponi I could get an injection in week 3 or 4 and be 5 or 6 weeks since my last injection.

Comments

  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    I've kind of done it but only on very mild DMARDS. If memory serves me correctly, I only stopped gold injections to get pregnant. They worked both before and after but I got the 'gold rash' which indicates kidneys are being affected so was taken off it.

    I aldo had hydroxy on its own for a while but it didn't do much. Later it was added to my meth. I don't know whether it helps or not but, as things are quite stable, I'll stick.

    I think I was told with penicillamine that you couldn't re-start it.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • barbara12barbara12 Posts: 20,901 ✭✭
    edited 30. Nov -1, 00:00
    Sorry I cant offer any help, but I just hope you can get something to help, pain can be tolerated if you know something is going to work on it..xx
    Love
    Barbara
  • StarburstStarburst Posts: 2,546
    edited 30. Nov -1, 00:00
    I am aware that there are some concerns with the biologics with regards to building antibody resistance to the drug. It depends on the cost and benefit analysis for each individual.

    I had great success on cimzia bit started vomiting and it was ceased, rheum applied for anti TNF #2 citing 'side effects'. I later found out that a digestive system condition was the cause of the vomiting and asked to return to cimzia. They said no because NICE state that if you are discontinued, they will not re-fund as they'll assume it was not a suitable drug. That said, if it's been a while since you're tried it, it's always worth asking.

    Wishing you the best of luck on the next step of your journey.
  • As5567As5567 Posts: 665
    edited 30. Nov -1, 00:00
    I know there are many alternative drugs to try but most of those are IV drugs and I refuse to have any treatment from the hospitals infusion centre, to put it lightly its a death waiting to happen....2 nurses for 12 patients and no doctor. And to make things even more frighting there is very rarely an anaesthetist free due to minimum staffing so if I were to be very unlucky and have a very bad reaction nobody could do anything about it, and after having 2 reactions on 2 different drugs I'd rather not take the chance. At my old hospital they had 5 nurses 1 Aux nurse to help out and a doctor in the infusion centre. It was also located right next to the operating department and when things had gone wrong in the passed things got dealt with quickly and people swarmed in from everywhere to make sure I was ok.

    I have once before gone back to a medication for the 2nd time and it worked but I was under the age of 18 back then and was at a much better hospital that didn't seem to follow the NICE guidelines in terms of treatment. When I first started Humira it didn't do anything at all so I changed to Ritiximab and had a reaction to that more or less as soon as the infusion began, my rheumatolgist then told me to just take the humira because I had the left over injections at home and see if anything happens while he sends off a prescription to HaH for another drug, the humira worked ok at first and I was then upped to a weekly dose and that worked great.

    Seems I have changed hospital and have no previous notes I'm hopeful that NICE guidelines wouldn't get in the way of me trying Enbrel again. When I look back the Enbrel was working I just probably went into a long flare and because of my age my rheumatologist probably just decided for me it was best to try Humira which back then wasn't even funded for use on the NHS, I remember having to go through paper work to gain funding from the children's hospital fund.

    I do know that antibodies resistance is a well documented complication of Anti TNF therapy but there is also some evidence that these antibodies are thought to only last in our system for a couple of years. There is also a specific blood test that can be done to test for this but it seems to be one of those tests that are rarely done and I very much doubt my current doctor is going to think its necessary.

    All I'm certain of right now is that Simponi isn't the drug for me and my rheumatolgist did say that if I'm not feeling better by when I see her next week then we are probably going to have to explore my other options.
  • StarburstStarburst Posts: 2,546
    edited 30. Nov -1, 00:00
    I'm pleased to hear that the issue of funding and antibody resistance would likely not be a concern for you. (I'm still miffed about cimzia.) With that in mind, then it sounds like it would be a positive step forward. Best of luck.
  • As5567As5567 Posts: 665
    edited 30. Nov -1, 00:00
    It sounds like such a shame that you cannot be put back on Cimzia, the whole NICE guidelines really do stink at times and I really do hope rules will change in the future.
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