R/A with overlap of Lupus please get in touch | Lupus Forums at The Lupus Site
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R/A with overlap of Lupus please get in touch

Discussion in 'Introduce yourself' started by Maryloubutterfly, Oct 15, 2015.

  1. Maryloubutterfly

    Maryloubutterfly New Member

    Hello everybody I would like to hear from everybody who has R/A with overlap of Lupus to hear how this affects your health and wellbeing, as I have this illness myself. Take care and hopefully hear from someone soon x
  2. wolf1

    wolf1 Registered

    Hi maryloubutterfly
    I have lupus and RA like a lot of people on here, not thr other way round. At this moment and time my RA is giving me a lot of pain. I'm not walking properly because of my feet, my body feels like its been run over by a steam roller. My hands are hard to use also. Lupus and RA are both painfull, not every one has the same simptoms as others, everyone is different. ( oops sorry for ranting)
    How are you coping at the moment, what are your ailments from day to day and how does it affect you.
  3. Maryloubutterfly

    Maryloubutterfly New Member

    Hi Wolf1

    Thank you for writing back, it's nice to speak to someone who has the same. I,m really sorry to hear you are not having a good time at the moment. How long have you had Lupus and R/A ? I have had R/A for 16 years and my Lupus started 6 years ago, I know my consultant said it was rare to have it this way round. At the moment I am not to bad as I had my Rituximab infusion at the end of may and I have it every 9 months. I know a lot of people will not have this as very strong drug but it is the only thing that is giving me some life. At the moment I have pain in my hips and I am waiting for to have x-rays, I also have a pain in my right knee don't know what that is. Daily I have stiffness and look like Bambi on ice in the mornings :p also every time in get up. I have headaches which have got a little better as I have had physio on my neck has my posture is not good with my neck. Hope you feel better soon and I look forward to hearing from you.

    Hugs Louise :grouphug:
  4. wolf1

    wolf1 Registered

    I have had lupus for 4 years coming january and RA for 2 years, but it seems that only now the RA is giving me more problems.
    My specialist was on about me going on infusions but because I was allergic to the other meds I tried ( methotrexate, plaquenil and even steriods, ) they sent me lupy ( scuse the pun ) I'm not aloud now, so I'm on cellcept. They are good and have given me more freedom.
    Its not very nice having all these is it, but I hope the xrays will find out what's going on. I know how bamby feels as well lol.
    I hope your pain subsides to give you more movment and freedom.
    Keep safe
  5. lazylegs

    lazylegs Moderator

    Hi Louise,

    Since you are having so much pain even after your Rituxan infusions it may be time to speak with your doctor about having your infusions more frequently or another medication added to the mix to tide you over until your next infusion. In the case of RA Rituxan can be given every 4 - 5 months. You may not need it that often but a shorter time frame than the present one may be helpful.

    Take care,
  6. countrylass

    countrylass Registered

    Hi yes I have both plus fibromyalgia raynaunds.
    wolf1 likes this.
  7. Laranne

    Laranne New Member

    Hi I was diagnosed with RUPUS about 6 years ago. I had lupus diagnosed in my twenties after multiple and miscarriages, it took almost 20 years before it became ugly. I feel really blessed to say that. Hashimotos occurred immediately after first child in early thirties though I remember auto autobodies to my thyroid at 13 no one seemed to be concerned about. I had my first child after carpal tunnel surgery when I was on daily aspirin, go figure. RA was diagnosed after a shoulder surgery, turned out I had no tears just a lot and debris in the joint that needed to be cleaned out. The RA has mostly been confined to the hands and feet. Except for a few checks that have indicated protein in the urine off and on and liver antibodies sporadically the lupus seems pretty quiescent. Usually it's the arthritis that bothers me. I have been on a lot of meds in the last 6 years to keep things quiet. Plaquenil was first and then added Meloxicam. Methotrexate dose has varied but I never like giving myself that. I have been adamant with my doctor's about avoiding infusions until absolutely needed and have done pills or self injections. It helps that I am a DVM. Recently had degenerative disc disease diagnosed and have had disc ruptures involving two surgeries on my back in the last 6 months. Biggest advice I have is to make sure all your doctor's know about all your meds and conditions. Don't be shy about how you feel and what you want to do. Try to take as much control as you can, eat healthy and try to keep moving. I have found swimming, water walking and hot tub or just a hot shower to help a lot. Wishing you the best.
  8. countrylass

    countrylass Registered

    I have ra Sero negative and lupus fibromyalgia raynaunds. Tmj. Etc
    Ra first age 17 lupus later on.
    I don't tolerate immune suppressants.
    On hydroxhcoychloroquine.
    My hands knees are worst affected.
    Lupus I'm photosensitive.
    Nice meet you
  9. Marty H

    Marty H New Member

    I too have RA with overlap of Lupus. I have recently been diagnosed. I have so much to learn. At the moment, I am struggling mostly with balance, muscle and joint pain, skin tenderness on the back of my hands. Walking has become nearly impossible, over the past month or so.
    I have been going through a gammit of different pains and sensations and weaknesses for almost twenty years, and have finally gotten some answers.
    I look forward to learning more from everyone here.
    Marty H
  10. countrylass

    countrylass Registered

    Bless you.
    It is hard adjustment..
    Sending gentle hugs
    I'm just out of flare oral low dose steroids helped alot.
    But got 2 tum bugs while finishing them.
  11. countrylass

    countrylass Registered

    Hi that be me

    How u doing
  12. Laranne

    Laranne New Member

    Hi I'm hanging in. Just about to do my first consult with pain intervention/management. Not sure what to expect. They seem to have a lot of injections going on.

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