Rhupus Anyone?

I am new here as I have spent months under a general medicine specialist who in the end thought it was all in my mind. On my insistence he referred me to a rheumy who has told me he thinks I have a combination of lupus & RA - rhupus as he called it - and possibly sjogenrns too. Bone scan showed arthritis in nearly every joint and something starting with s in my hands? I don't go back until mid August after all the new testing and I am very chemical sensitive so can't take many drugs- NSAIDs, most pain relief etc are out. My only option given was to take fish oil which makes me vomit and panadol osteo that hardly touches the pain. I work full time and am starting to struggle getting through the day. My question is does anyone else have this combo, how does it affect you and what is the progression like. This all started after an infection after hysterectomy last April. It is getting progressively worse as the months go by so I am wondering where I will be at in another 12 months. Any thoughts please.

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  • This happens to me all the time on this site! I now copy it before I submit it so i can paste it if it doesn't show.

    Tilstongal

  • It's my stupid hands and fingers that don't work properly and sometimes I double press and lose everything! So frustrating. :)

  • Hello there, my rheumy refers to my symptoms as "Rhupus" as I have some Lupus-like symptoms like ANAs and lymphopenia. I'm being treated with Simponi (anti-tnf drug), 5mg Prednisolone and 10mg Leflunomide daily. It's works brilliantly! I am not sure what it means that my RA has "Rhupus"-aspects lol I was on MTX before and didn't tolerate it very well.

    I'm sorry to hear you're in pain & having difficulty :( Have you ever been on RA meds like MTX or Leflunomide? Rather than just painkillers? You should really be given a disease-modifying drug because NSAIDs and painkillers or even steroids just treat the symptoms and don't interrupt the autoimmune process :S

    All the best, Christine xx

  • Hi Christine, I have been diagnosed for the present with seronegative RA. I have been through nearly all DMARDS and had reactions that varied form downright bad to really scary, too many chemical sensitivities. I am now on plaquenil and enbrel. It is working somewhat, I know it is because when I have to go off it I can not get out of bed.

    I hope that you have success with your medicine regime it is such a hit and miss thing and they work for a while and then can lose their effectiveness. Oh onward and upwards.

  • I do not go back until mid Augaust so I have 5 months after waiting nearly a year to see a rheumy so I have no proper diagnosis apart from what he thinks I have and no drugs just left to my own devices. I asked if there was anythign that I could takle for the pain and he told me fish oil tablets and wants me to stop panadol because my liver is also going nuts. I told hijm no I have to work fulltime and I am barely coping now so too bad so sad I am going to keep taking them. I am going to GP to talk to him as I had high calcium in last blood work so had more tests need to talk to GP and will ask him if there is anything he can give me cause I am not going to live like this for another 5 months while they stuff around. Getting a bit angry as I hav just been jerked around so much in the last 12 months.

  • How come you have to wait so long to see the rheumy again? You say you're having tests done, what kinds of tests are they?

    Please do not put up with feeling miserable and in pain but call the hospital/your GP and demand an earlier appointment!!! I had similar problems getting a diagnosis and then getting a rheumy appointment. From the time I first went to see my GP about my swollen & painful fingers to my first rheumy appointment it took about 10 months. The first time someone suggested RA was at an Out of Hours appointment where I'd gone because I couldn't move my wrist (at that point the inflammation had progressed to my feet, ankles, wrists and knees). I went straight to A&E after that and my GP put me on some kind of priority list at the hospital so if someone cancelled I would get their appointment at short notice. Luckily someone did cancel so I only had to wait about 2 months :S Maybe they can do something similar for you?? This just isn't something that can wait!! xx

  • I went to my GP today and he tells me as I am sero- negative but have all the symptoms for nearly a year, they want to do sleep test, and more blood work and lip biopsy to test for sjogerns. I have a sister with Lupus, brother with celiac and mother has underactive thyroid. I am in a ;lot of pain I have ahd a bone scan and have arthritis in most joints. They wo n't start treatment until they get a proper diagnosis and to tell you the truth I am not keen on some of the drugs after reading what they gtreat thewse things wiht. I havehuge issues with chemicalas and have had a few very bad reactions on the past 12 motnhs to drugs. So I guess I just wait. i also have anemia and liver problems that GP toldd me today will require a liver biopsy to see what is going on.

  • Ok, I am seronegative too but I had extremely high inflammation levels and visible swelling so they made the diagnosis based on bloods and ultrasound.

    Hmm, I guess if you have a family history of autoimmune conditions it makes sense to do a thorough check of everything even though i's a nuisance! I understand why you'd be apprehensive about the RA drugs - it's powerful stuff alright! Do your sister and mum maybe have any tips for you how to deal with the pain & uncertainty until you get a proper diagnosis?

    This sounds like a real bad situation your in :( Wish there was more I could do to help!! Christine xx

  • They are doing sleep test, lip biopsy to see if I have sjogerns, more blood work, liver US as I have bad liver results and anemia going on 12 months now. GP also said I need liver biopsy. Don't know what they expect to find different in 5 months that hasn't happened in the last 12 but that is what I have to do. One of my sisters has lupus and a brother has celiac and mother underactive thyroid.I have arthritis in nearly every joint and after reading what they treat these diseases with I am not so keen to start poisoning my self as I am supersensitive to chemicals.

  • They are not very supportive and dismiss what has been going on. Curious you would think that they might actually be a bit more open to it, so I just talk to others who have it and have a great friend I offload on to. I was a guinea pig at the hospital on Saturday for the rheumys and got the opportunity to talk to the rhuemy and his offsider so that was helpful and I gave them some more background. I ahd to take up some MRI & xrays I had done 2 years ago on one of my knees and the offsider said they will meet and discuss and may change strategy. Who knows I have been stuffed around for a year what is a few more months really.

  • Heya, sorry only just saw this post now! That's sad that your mum & sister aren't supportive :( I'd have thought having similar issues they might offer you help and information :( I guess maybe you're a bit of a medical mystery (they called me that before I was diagnosed lol didn't make me feel reassured I tell you!!) and they take their time to double-check everything!

    Good look & take care xxx

  • I am philosophical about it and accepted years ago that my mother does not love me or have time for me and I am comfortable with that and so have no expectations any more. My sister is very like her so as she ages she is becoming a clone. I choose to only have people in my life that I want it is so much healthier and easier for me and that way my stress levels are minimised.

    Yes they are taking their time and are also freaked out by all my medication allergies, just had another anaphalactic reaction to an antibiotic a couple of days ago! Sheesh I am over that I can tell you. Yes I too have been called a medical mystery, my GPs bread and butter patient and various other things. I just laugh now and say Ok but when are you going to give me something I can work with.

  • I have Rhupus also. All kinds of things started happening to me. After months of trial and error in meds, I was in the middle of a flareup. The dr took many more and different tests and came to the diagnosis of z Rhupus. It may take time for your doctor to know how how to treat you.

    I did some research and found it was rare and difficult to treat. Please be patient and if you dont get any reliref I would suggest another rhuematoligist.

  • Hi Jazzsue I have been diagnosed with seronegative RA for now, mind you this may change at some stage as Rheumy thinks it may 10 years for all my symptoms to finally come out and the diagnosis may change over this time. I am currently on enbrel and plaquenil which is helping a little but I am still getting out there symptoms that no one can explain. Gee three and a half years in and counting. hahahaha Good luck with your treatment and I hope you can get some answers, it seems we weird ones are a challenge

  • I understand. Im still having syptoms show up too. My dr may change it to something different too. I am so tired of going to drs and playing trial and error with the meds. The las time i went to dr, she was hoping I didnt have anything else show up. It's been something different every vusit fir ckise ti a year now.

  • Well three and a half years down the track I am still surprising them. I look on it as an adventure and see what will pop up next.

  • You are right about that. No one, evenvsome drs, have not heard of Rhupus. It seems that some of us always get the rare ones

  • Time will tell I suppose. I so enjoy my life. NOT!!!!

  • Welcome to the site. You will find endless support and encouragement from everyone's including the nras site advisors.

    You sound like you are extremely resilient, it is not an easy thing to go through without supportive family (I know, not many of mine even want to try to understand).

    I just wanted to wish you luck with trying out treatment options. I am extremely sensitive to chemicals too. Allergic to most antibiotics, don't use any on my face now or the skin turns into scabs. Just to say I was very scared about starting treatment because of this sensitivity (nowhere near as bad as yours) and so far it really isn't as bad as I thought it would be. I had visions of throwing up all the time etc etc. I know that lots of people post about terrible side effects, however you may just find something that does agree with you, I really hope that is the case.

    Gentle hugs

    Terri

    xx

  • Ho Terri,

    I have three and a half years under my belt now, But thank you for your kindness. I have had a terrible time with drugs bit am sort of in stasis on enbrel and plaquenil which is having some good effect. I understand about the family thing I just suck it up and let it roll as it is through ignorance that they don't understand and no point beating your head against a brick wall. I just say get over it, you know I am unwell. People who don;t have any chronic illness do not understand it is not like a cold that goes away, or the life long commitment we make to assisting ourselves to conserve energy and protect ourselves form causing further problems. That;s life so I just shut my mouth and get in with it.

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