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Help needed please.

Posted , 9 users are following.

amy77765
amy77765

I am 45 y.o. Took 7 months to be dx with seronegative RA. When I look back it really started mildly 5 years ago. But it went from sporadic to full in flare due to horrible stress. Prednisone gave me the first relief I had and I felt human again. Tried plaquinel , no change. Off the prednisone and I would say 50% of the pain is back. Where some areas get worse then others. I tried non steroid anti inflamm and no impact. I am taking Enbrel for a month now and no change but def a flare while on.

When should I be feeling better? If I don't see a change after a month n a flare is that a bad sign?

Would it be better to get back on prednisone ?

The doc said you're can have a flare even when the meds are working .. why?

Lastly, does treatment ever work and how much better should you feel if it does work?

I want to be realistic.

Thanks.

Amy

Florida.

0 likes, 13 replies

13 Replies

  • patyrod
    patyrod amy77765

    Posted

    This is a horrible disease.  From what I have been told, the medications like plaquenil can take months to start working.  Maybe you should be taking methotrexate.  I have noticed a little improvement since I have been taking it.  I take plaquenil and gabapentin, also, but then I have four autoimmune conditions.  Be careful with the prednisone.
    • amy77765
      amy77765 patyrod

      Posted

      Sure I see a little improvement in one area than worse in another. To me that's not improvement.

      I am starting to think the meds don't work at all and ppl that feel better are just in remission.

  • Guest
    Guest amy77765

    Posted

    Don't start taking prednisone every day. You cannot stop taking it or you will go into a horrible situation with pain. Please read up on using prednisone. There are other methods a doctor can use to control pain.

    • amy77765
      amy77765 Guest

      Posted

      She had me on it for a couple of months. While hoping the plaquinel would work. I have been off for almost 2 months now. I was tapered off slowly. Then I was on plaquinel alone and no change in the pain.

      I am on now enbrel for a month no prednisone and no change.

      I can't use my hands any more. Hard to drive and work. Can stand longer than 10min.

      I can't live like this.

      I rather not live at all if this is how life is going to be.

    • patyrod
      patyrod amy77765

      Posted

      Part of this disease is depression.  Tell your doctor how you are feeling because of the pain.  You should be able to get another medication.  Also, try wearing some hand supports.  You can get the stiff ones from your doctor.  I use energizing support gloves by F*****.  They are more comfortable than the stiff ones.  I can sleep all night with them.  I think that they would help with your driving, too.  You can find them in the drugstore or online.
    • Guest
      Guest amy77765

      Posted

      Amy, I am on Enbrel too. It wasn't working so my rheumy added 10 mg MTX to it. It elevated my liver whatevers and it was dropped to 7.5 per wk and it seems to be working. You might suggest that to your doctor along with pain pills to control the pain.

  • penny55083
    penny55083 amy77765

    Posted

    I'm so sorry to hear how bad things are for you at the moment but please be clear that when you feel that bad things will improve. At times I have felt total despair, especially at the beginning whilst they got the meds  sorted out. The Doctors have some very good drugs available to them but they don't always get it right first time. Keep your Rheumatologist informed of your symptoms and they will be able to help you. Try if you possibly can to ease your stress with mindfulness or meditation apps. Again, if one doesn't work then try something else until you find something that works for you. Get plenty of rest but don't become inactive. I have always found that the longer I sit down the worse I get. Eat well. Listen to your gut. Try to avoid high fat/sugar processed food but otherwise eat what you want. Undoubtedly I found some foods made me worse, and still do. My Dr doesn't believe me and thinks that it's irrelevant because there isn't a study to prove it. I think it's a personal thing and different people react differently to different foods but beware of excluding whole food groups like dairy without good advice because you will damage your bones through lack of calcium. If it's any consolation I was diagnosed 7 years ago. Once diagnosed it took a year to sort out my drugs , which were methotrexate and prednisone. I am now 58, working full time as a physiotherapist, I have walked over a 100 miles on a coastal trail, I swim and cycle and even took part in a 5 mile running race for charity this year. This didn't happen over night. It has been a slow steady recovery and I have to work at keeping my weight down and my muscle mass up. I still have mild upsets, like the last few days over Christmas, eating too much and not enough exercise but I know what I've done to deserve it and I know how to correct it. Good luck on your voyage of discovery and I hope you get your meds balanced soon. 

  • sonya78375
    sonya78375 amy77765

    Posted

    Hello you, I'm 40 and have had this for nearly a year.  I have done heaps of reading and asking docs, and I am certain that there will be meds to work for you.  People do go into remission sure, but when people are on things like methotrexate that are working for them, and have to go off for a while to help healing from surgery for example, the pain and disability comes back until they can go back on the drugs.  My rheumatologist told me plaquenil is pretty weak (though I am on it too).  The enbrel just might not be the one for you because everyone's different.  Or you have to give it time - my methotrexate took 5 months to work at all but I can run/walk/drive/sit/work again now.  It's really important for you to know there is hope for us now, these days - where there wasn't some decades ago - because of the meds.  My rheumatologist said that they aim for us to feel100%, which is a phrase I hang onto as I am not there yet. 

  • tory38006
    tory38006 amy77765

    Posted

    Hi Amy,my husband was hit with severe RA few years ago

    and like you I needed answers to know what to do to help

    comfort my husband and myself.We have a wonderful

    rheumatologist and he started my husband on methotrexate

    Folic acid and Plaquenil along with a few week supply of

    prednisone.He also had us watch a couple videos on food. He feels

    that diet the right kind is very helpful in managing symptoms.

    Magnesium powder is wonderful for stress and anxiety.

    It took 9 months or so for the med to take effect.My husband

    is now taking several more meds.I since methotrexate and Plaq

    wasn't enough to stabilize his ra. Be patient,try and avoid stress

    like the plague and know there are many on this site with much

    knowledge and comfort to give.A word of truth on prednisone

    river is right,it is a blessing for the relief from the pain but

    you will have to readjust to the pain all over.Sometimes it is

    needed when you need a break from the pain at times.I hope

    you are given pain meds to ease the pain.Gentle hugs,Tory

  • Debkimly
    Debkimly amy77765

    Posted

    You have just begun with the medicines.  I am taking methotrexate, plaqunil, and then added the Humira after having a shoulder replacement.  During one of my flares I had the same feeling of not being able to stand the pain.It took about 3 months to see a difference and now I feel 75% improvement.  It does take time for the Drs to get it right.  I also find wearing the copper half gloves at night help with the wrists. Also I swear by lidocaine patches and the various creams with lidocaine that are available now.  
  • dena_79123
    dena_79123 amy77765

    Posted

    RA hit me like a train during a stressful situation. I thought it was the most awful

    case of the flu or something, but when I woke up literally unable to get out of bed without assistance, I knew it was more. It took two months to get a solid diagnosis. Plaquenil did nothing to help. Humira is the next step, but due to a problem with insurance I have not started it yet. My first X-rays were clear and within six months joint erosion was evident in all hand joints, some toes, and swelling around knees. I am concerned about being without medication when the damage was happening that fast. I wish I could sound more encouraging, but I think I am where you are. Waiting to find the right meds to help. It is good to know that so many have found relief with medications, and encourages me to be patient as we find the right one for me.

    • amy77765
      amy77765 dena_79123

      Posted

      It hit me like a train as well.

      I think when I look back I had it on and off. But I was told it was fibromyalgia.

      Then I had this job that was the most stressful anxiety ridden in my life and took 2 years to get out of. In the final year is when the pain and unable to move was unbearable. I guess u can say it was a flare that I had never exp and hope to never again. It took prednisone to knock it out and change work situation.

      I am a steady 5/10. Before 10. Everywhere.

      I am hoping the meds work soon.

  • freda11635
    freda11635 amy77765

    Posted

    hi Amy.

    for what it's worth I've been on a number of meds over the years with RA. my current one (gold injections) I've been on 4years. not one flare up. until September last year. I didn't say much to no-one except ' having a bad day that's all'. anyway woke up one morning near Xmas, right as rain. still am. what I'm trying to say is, who knows what is normal or isn't with this illness? what suddenly made it attack me the way it did. I don't know. what I do know is it was one blip in the history of my injections. sometimes there isn't an answer. hope you keep well. take care.

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