JUST NEED TO RANT!!!!!!!!!!!!!!

I am really low...had to stop Methotrexate 2 weeks ago due really high liver readings-am still on Quinoric but have gone into a really big flare, had a blood test yesterday, and although liver readings have gone down they are still really high, been told to take just Ibruprofen and Paracetomol for pain over weekend which is all over and feeling really nauseous-I have even gone off coffee (not like me at all!!!) Now the rant.......

Mangaged to do some shopping (still in the hall not unpacked-2 hours later) as I got in the neighbours' daughter caught me on the drive as I was (struggling) to unpack the shopping (she knows I have Lupus and last week told me 'oh I worked with someone who had that and she was fine'......This week (she) 'How are you now? Are you back on medication?' (me) 'Oh still pretty rough, got to wait for the liver readings to go down' (she) ' Ah its an Auto-immune thing isn't it - can't they give you accupunture for that? They do it on the NHS' (she goes 'Private' as she always likes to point out).....at this point I had put my shopping down and was having to lean on the door jamb to help me stand.....I could not even be bothered to explain how I would not be able to tell them where to begin to start putting the needles and that I would end up looking like a voodoo doll with them sticking out all over me!!! How do you explain it to someone who is just so damn ignorant??? Anyway I just said 'I have to go in now-I've got a headache' but can imaging myself having a dream tonight and in it she will be the voodoo doll with pins sticking out all over!!!!

18 Replies

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  • I'm sorry but I did laugh to myself when I read your rant!!! I have met people like that on more than one occasion. Once when I was in a pub with my husband, a total stranger asked why I was in a wheelchair. They then tried to sell me some cream saying it would cure me! Many times I have been told I don't look like I have lupus. Those that think they know say," why hasn't your hair fell out, or worse still, your supposed to look like a wolf!!" The best one yet has got to be the woman who told me that lupus sufferers have a fixed grin!!! I would love to know if anyone out there is afflicted with this expression!

  • I wish there was a like button on here.....too funny x

  • Hi, so sorry for you. You must be so worried about what meds you will go on now. It's so hard having a big flare up and can't believe you managed to shop with that going on (very brave). Big hugs to you .....being on methotrexate and placquenil I understand. Just ignore your neighbour....she knows no better (if you don't experience this it is hard to explain/understand). Can they give you a steroid injection to ease your flare up for now. Please keep in touch and let us know how you get on re what meds they will put you on. PS: I sometimes have some lupus UK book marks on me and if people ask/or are a little bit ignorant as to what it is I have used that to show what it is. Big hugs to you and hope your flare eases soon xx

  • Good idea about the book marks. I have been taken off the methotrexate for same reasons. I have been on other heavy stuff all with the same effects on my liver. Am starting monthly steroid injections in january( depo medrone) have read lots of positive things so am hoping this will sort me out.

  • Thank you both for your replies....I did have a steroid injection 2 weeks ago-and think I would probably be much worse if I had not had it, I have to ring my Rhuemy on Monday (he had left today and only spoke to the Nurse (who is lovely), to see what the next step might be, and I think they are waiting on me having a scan, but I think that's going to take up to 2 weeks to come through. I am feeling quite a bit better now, had a nice hot bath and managed to put the shopping away!! And, mstr, I did write the rant to give people a laugh, because even though, when you are in pain, it hurts to laugh, I do think that 'laughter is the best medicine!!'

    6161...when you had problems with your liver, did it upset your stomach/bowels? i.e one minute really loose, the next being really constipated? Also, my tummy (at the top, where the liver is) has been making really bubbling noises.....I have never experienced anything like it!!! Liver is not painful as such (thats just everywhere else!!)but has been quite tender to the touch, although it seems better now. Ah, the joys of having Lupus!!

    Also the Bookmarks are a great idea, where did you get them?? Might just pop one in 'her next doors' Xmas card!!!Once again thanks for your replies Julie :-) x

  • HI ....glad it's easing a bit. Yes I did see the funny side too it's like a scene from a comedy with you trying to get in and her jabbering on. But the book marks can be sent from Lupus UK. If you just contact Paul or anyone from Lupus UK office. xx

  • Hi Barn1993

    You can get the bookmarks from Lupus Uk Office . I keep a supply to give to people who need educating . I've had a lot of 'helpful ' suggestions over the years. They have to experience it to know what it is truly like. Glad your feeling better . Good Luck for the new treatment.x

  • Oh sorry...just seen your message and didn't mean to duplicate the bookmark info;)

  • Hi Julie, the bookmarks are from lupus news and views national office and are free. Regarding your scan, I presume it is for your liver?. I did have liver pain,( still do sometimes), my scan showed enlarged and fatty liver due to all meds not just methotrexate. My liver still gets inflamed from time to time and that's why I'm starting injections. I have to say that before diagnosing meds as cause, I had to convince docs that I am not an alcoholic!. I am lucky not to have had tummy upsets and I do feel for you. I would rather have pain than that. Good luck with your scan and hope they get you sorted soon.

  • Love the voodoo doll , made me laugh as I say with lupus it's an unlucky dip of you will get next !!

    I have been in bed 3 weeks with fatigue and rib pain .. Now I have raging tooth ache from sjorgens ... Back to bed to pass out again !

    Would somebody stop poking the pins in me please ;0)

  • Sorry to hear about your liver. Such a worry on the medicines! On methotrexate and worry myself silly about liver damage. Just think your getting somewhere and feeling bit better and then your back to square one. Hope they get you on some medicine again really soon. People are so ignorant! The one I hate the most even from close friends is after I have explained what I have and how ill I have been they say 'but you look so well though' I want to scream! Or they say what is it you have again? And have to go over it all again! Aghhhhhh! Haha, now I'm ranting. Big hugs to you. Hope the scan goes well. Keep us posted.

    Jo xx

  • So sorry to hear your story and I hope you get your meds sorted soon.

    I can empathise with the ignorant remarks. A work colleague suggested I just needed vitamin tablets or to eat an orange the other day. My tongue was almost bleeding from biting it!

  • Oh dear bam1993. I so understand what you mean. I hope things settle down for you soon.

  • Thank you for all the new replies.....this site is just so great and a true lifesaver and so uplifting....having so many other people that truly understand what you are going through is priceless......I will be getting some of the Bookmarks for sure!! .... I will add that I am totally Tee Total, just hope they believe that at the hospital, I wouldn't mind so much if I was a drinker-then at least I could have something to blame for the Liver-but no, it is just the meds that have done it..... p.s I did not dream about the Voodoo doll last night....but if she says anything next time I see her, all I can say is watch this space!!! Hugs to you all and I am feeling a lot brighter this morning-so Thank You xxxxxxxx

  • Just wanted to add that I am also teetotal but my docs still question it sometimes. The last time I was asked was just after new year. The doc very patronisingly asked if " perhaps I had drunk too much over the festive season". I have invited them to do random bloods for alcohol to convince them. They look startled at this and go off the subject. I understand that alcohol is a major factor in liver probs, but read the notes, don't keep asking

  • Oh, gosh, that's awful 6161, having the doc's question you like that, I can imagine how you felt-I've not come up against this, but of course there is time for that yet!!!!

    I have had a letter from my nurse this morning (copy of what she sent to my G.P) and in she states that the steroid injection I had 2 weeks ago was Depo medrone-120mg.....also my liver readings were:- alkaline phosphatase -156 ALT 151....do you know what yours were at the worst??? These readings do not mean anything to me but I am now going to look them up on the net ( and hope I don't scare myself silly!!!) But maybe the Depo medrone injections will be the way forward for me too...perhaps keep me posted on how they work out for you??? :-) xx

  • Have been trying to locate paperwork with results. All I found was a letter from rhuemy to gp. It says ALT 128 and tripling of gamma GT ! I did read once that rhuemys ignore raised liver tests in lupus patients unless they triple. I taught my GP that there was autoimmune hepatitis on top of all the other types. She is not the type to take offence. She thanked me and said to keep her involved. Do see if you can access old copy of lupus news and views, spring 2005. I would copy it if I had means and know how. Don't go scaring yourself. Hopefully it was the metho to blame. My results do increase from time to time and nobody worries too much. Just shows lupus is still active. Starting depo end of jan as I have to have some toenails removed first. Just finished 6 weeks of iron transfusion and depo would affect these. So onwards and upwards, hope your bloods settle and tummy probs too. Will let you know how I get on.

  • Thank you 6161...hope all goes well with the toenails-I won't even ask-but that sounds really, really painful!!! And yes onwards and upwards-stomach does seem settled today, but I have not done much..... basically sat on the sofa!!! I really should do a bit of hoovering-will try to tackle in a mo-and make sure I rest inbetween. And yes please do keep me informed of how you get on x

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