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Embril fail....moving to infusions

Posted , 9 users are following.

halw
halw

here the short of it.  I'm 57, diagnosed almost one year ago.  On methotrexate, hydroxychloroquine, folic acid, calcium, prednisone (tried to taper but cannt get below 15mg a day) and have been on Embril since July, 5 months.  Still out of control;; couple good weeks, then slammed.  Also taking sulindac (NSAIDs). I feel like I'm always on the border of a flair, and with the help of a sinus infection, I was wiped out for 6 days.  Now the ra dr thinks I should keep with Embril for 4 more weeks and the jump ship to an infusion.   

Not exited about this being hooked up to a bag thing and trying out another biologic.  

Im thinking I need a support group or something.  I'm getting very discouraged.  Any words of wisdom on this would help.  Thanks

1 like, 18 replies

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  • gail32047
    gail32047 halw

    Posted

    First thing that pops out at me is the NSAID. Do not take NSAIDs with Methotrexate - very hard on your kidneys. However, I'm assuming you're not still taking all those drugs - just Embril, NSAIDs and Prednisone?

    There are other things you can do to help yourself. Rest as much as you can. Any exercise must be low impact like palates or swimming. DO NOT soldier on. Pain means stop. RA has no respect for heroes and will punish you severely. You may also benefit from a change in diet. Lots of RA sufferers on this site have lessened their symptoms by removing wheat from their diet or by eating more 'mediterranean' food (as in Greek, Italtian and Spanish).

    While 1 year will seem like 10 it does take a while to find the right fit. A peculiarity of RA is that it's very individual - each person is affected differently and responds to drugs differently. Methotrexate was great for the RA except it gave me the symptoms of stage 3 kidney disease. Hydroxychloroquine and sulfersalazine did nothing at all. Leflunamide helped but I needed Humira, a biologic, as well to put the lid on this thing. It took 6 years. I took prednisone the whole time to control the inflammation while we sorted out what worked from what didn't.

    I also tried accupuncture - no good, osteopathy - no good, naturopathy - excellent, and massage - also excellent. Other people will have tried the same things and got quite different results.

    RA is a disease that has to be managed. It's not something where you take a pill and everything is fixed.

    Even when you get it under control you will still have to be careful. I'm back to doing most of what I used to do, but I can't do as much of them as I once did. I'm also learning what sets off a flare and how to stop before the joints start aching. You are a work in progress but you will get there.

    • Debkimly
      Debkimly gail32047

      Posted

      I don't agree about not taking NSAIDS with methotrexate.  I am on methotrexate, plaqunil, and naproxen.  I am tested for liver counts and also blood counts.  This is the first I have read warning about Kidney damage.
    • nathan72763
      nathan72763 gail32047

      Posted

      If you take pred to reduce inflammation while you wait for DMARD to work how if the inflammation is under control how  do you know if the drugs are working or not. I just take take 5 mg pred to control my ra nothing else only parcetamol occasionally.
  • halw
    halw

    Posted

    Thanks Gail.  I am on all These meds and trying to take the NSAIDs only when flairing, but I'll check out you r warning with my dr.  Clearly I have not found what works... Thanks too for the other suggestions.  I am trying to be smart on exercise as I've had to stop martial arts completely and do low impact stuff like walking and swimming....total bore.  I'm hoping it doesn't take 6 years to sort this out.  Thanks again fo the reply. 
    • Buckeyes
      Buckeyes halw

      Posted

      I'm having good luck with Enbrel.  Hopefully it will continue to work!  You mentioned walking and swimming being boring.  My son just started to swim laps for exercise and he says it's pretty boring too.  He asked for some waterproof earbuds for Christmas.  Apparently you can stream music to it and listen while you swim.  That might give you sonething that will help with the boredom?  They are made by Underwater Audio.  They are not cheap.  The sports bundle runs about $150.00.
    • Light
      Light halw

      Posted

      If swimming is boring maybe you're not swiming fast enough. I'd say go full whack, put your whole energy into it.... its the ony place us RA sufferers can.

      Do splashabouts and walking through water, also very good for you.

      As for you being hooked up to a bag - you're talking infusions, right? isn't Enbrel an infusion?

      Anyway, don't worry about that aspect. It's actually quite nice, lying there with nothing to do but rest and listen to music.

    • Rowbirdie
      Rowbirdie Light

      Posted

      Hi

      Just to clarify 

      enbrel and other anti tnf biologics are injected subcutaneously. You usually do it yourself with a special pen like thing.

      But with an infusion you are an outpatient in a hospital and have a cannula into a vein on hand or forearm usually- like a drip. You are closely monitored while it takes place. So as you say- turn up and relax for the hour or day depending on which med.!

       

    • Light
      Light Rowbirdie

      Posted

      Yes. I've done it. Rituximab infusion. Due again in January. Never been a problem.
  • gail32047
    gail32047 halw

    Posted

    Wow - that's a lot of meds to be on all at once. Does your doctor have any plans to stop the ones that aren't working? Pretty powerful drugs to take for no effect. A side effect of methotrexate is fatigue and Hydroxychloroquine takes two years to work out of your system. 15mg of prednisone is a fair bit (double what your adrenal glands normally make each day) and if that's what you need then the other stuff can't be doing too much.

    About the walking - that's NOT low impact. Your knees and ankles will protest. Think of the amount of walking you do in a day anyway. Inflamed joints will be happier if you don't add to it. You're sick, remember!? Go back to those things once your RA is under control.

  • ama38049
    ama38049 halw

    Posted

    Halw, there is a group here. We support each other or even the fact that someone listens/reads help. So please feel free to share - not sure that we will always have a bit of advise but there will always be here someone to read you and just be here for you. 

    I am sure that your dr is very serious with all the meds that you were prescribed. Keep on looking. It will be OK at the end. Sometimes things go up. Sometimes these go down. Have over a decade of seeking by now :-). It's important to talk. It's important to keep seeking alternatives. Eventually something will work out for you. 

    • halw
      halw ama38049

      Posted

      thanks ama, it helps just reading the replies from people.  I continue to be surprized by how few people I know have any understanding of RA and the way it and the treatments/meds can keep beating a person down.  I'm trying to stay possitive and all as well as going through all the steps that are not working.  I've not adjusted to talking all these meds (not use to daily meds in my life) and having less than great results. anyway, thanks for the note.  I'll keep checking in. 
  • Rowbirdie
    Rowbirdie halw

    Posted

    Hi

    it s just fine being hooked up to a bag thing!- esp when it works!

    my story is so similar except I'm a few months ahead of you-aged 64- diagnosed 20 months ago.

    i am on methotrexate,folic acid, sulfasalazine , hydroxychloroquine, calcium and vit D

    i was on 7 half mg prednisolone but now on a slow taper as my biologic is working( so down to 3mg)

    i too am on my second biologic- the first was a once a month hourly infusion called tocilizumab which had remarkable results, but they decided I d be better on a different one as they discovered my lung was affected by the RA ( ie not the medication - )

    so I began Rituximab 13 months after diagnosis. ( this is a 6 hour slow infusion . You have it two weeks apart then not for at least 6 months). This has also worked for me, though a bit more slowly. I think it just takes time for them to find what works but the good thing is they are treating the disease aggressively which is current practice and means you are less likely to have joint erosion.

    yes- I was nervous going to my first one at the outpatients - especially as you get a booklet about the drug telling you all the possible side effects. But i have not had any for either infusion and loads of people have the same med.

    sometimes I think I have so many drugs in my body- but I still have monthly blood tests to alert if anything goes wrong- and it s all working. I have minimal joint pain and so much more energy.

    just keep going with what they say. That first year while they are trying to find what works for you is so hard and so depressing- but you must have it quite severely, as I have . Yes- rest- someone to talk to- constant paracetamol rather than NSAIDs - keep joints moving- avoid strain on joints- all help .

    Well, tomorrow I am off for my second batch of  Rituximab after 8 months. Planning to download a book on my kindle.Didnt think I could be as well as I am now a year ago.

    hang on in there till they find what works for you

    hugs

    • Light
      Light Rowbirdie

      Posted

      Hey Rowbirdie, good luck with your second batch of Rituximab!

      I'm due with mine now but he's waiting for another month because I'm doing so well. If I do it in Jan it will be 8 months, like you.

      Very keen to hear how you get along... we can compare notes.

      I'm 70 and I've had RA for coming up to ten years.  But I've felt better and more energetic this last six months than for all that time.

    • Rowbirdie
      Rowbirdie Light

      Posted

      Hi Light

      thanks so much!

      The infusion went well- actually didn't even feel cold part of the way through as I did last time.

      Yes it s wonderful to have more energy. Wish you well with yours in January.

  • frances85589
    frances85589 halw

    Posted

    I agree with another reply that you are on a lot after a year but your doctor is trying for you.I've had RA n Fibromyalgia for 4 years and am still struggling and my consultant has tried me on 2 DMARDS and 3 biologics without success.I now have another auto immune disease so he's stopped any more biologics. Think only the prednisolone us keeping me going. None of the grugs are good for your health but you need something to stabilise you.Are you on Pregabalin too
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