Conflicting autoimmune diseases

Hi - this is my 1st post though I have posted a question related to my condition. I was diagnosed with RA 3 years ago, though was wrongly diagnosed with Sjogrens a year before that so missed 12 months of effective treatment. I have gone through the usual treatments - MTX, Leflunomide, Cimzia, Enbrel and Rituximab, which I tolerated till my 3rd session at the end of December. I then had a bad reaction near the end of the 1st infusion and am unable to have it any more.

My main issue lately has been 2 doses of shingles and repeated abscesses in my groin, armpits, waist and back. I have not been longer than 2 weeks without antibiotics since August, which has meant very erratic MTX doses. My GP says it is likely to be hidradenitis suppurativa, which I have looked up and sadly it does seem to be the same symptoms as I have.

Just wondering if anyone else has this as well as RA? The treatment is long term antibiotics which then means I will be unable to take RA meds. I'm feeling very miserable at the moment, waiting to see if 2 weeks on 2 new antibiotics will shift the egg sized abscess on my back or if it will need surgery as my GP suggested. I have an appointment with a dermatologist in March. My neutrophils are also very low at the moment - not really sure what that means though. I go back to GP next Weds but am hoping to go back to work on Monday, having been off with a bad chest infection for 2 weeks.

8 Replies

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  • This sounds very sad. I am afraid I know nothing about that condition. have you contacted NRAS? they may be able to help? Some ra meds can be taken with long term anti biotics but these arent anti tnfs . they are gold injections,also hydroxyxchloroquine and possibly sulphasazaline( some anitbiotics may be a problem with sulphazaline) it is best to seek advice on this topic from either local health professionals or NRAS

  • The nhs web site is good actually google your condition and look on it it medically correct and makes interesting reading. it can also be treated

  • I haven't a clue about any of this but it sounds awful and I just wanted to offer you loads of sympathy. Can your rheumy consultant advise? Ask NRAS as Summer suggests. X

  • No help but just wanted to send my thoughts and sympathy.

    Jo

    Xxxx

  • I feel for you and I pray you get well soon.Immune suppressants used for RA treatment sometimes leave the body vulnerable and other infections come in.Dont despair be strong it will pass have faith keep reaching out for medical advice and hopefully you can find what will work for you without leaving you very vulnerable.

    Take care

  • Hi,

    I was diagnosed with RA 7yrs ago and have suffered with hidradenitis..... I was on long term antibiotics also but ended up having surgery to remove them as like you say it interferes with RA meds. Unfortunately it has meant 3 lots of surgery so far and mine have always been in the groin area. Surgery does not mean they wont come back as mine have on many occassions. To be honest i have learnt to live with them inbetween the surgical option as its not pleasant after the operation as the wounds are left open and require packing daily. Sorry if you've not eaten your breakfast but i've learnt to pop them before they get too big which is quite painfull but saves going to the GP and also don't ask for anti-biotics unless they get extremely large. They will tell you following surgery to go back if they return as unlike the olden days they only remove small areas at a time which can mean they just find another area to infect. Sorry it's not good news but I hope you get the result your looking for.

  • i was feeling down and read this,you poor thing,have no idea what it is either,but sounds nasty,and anything ele on top of RA is bad,just wondering,has anyone had really bad chest infections and short of breath,besides sickness aon mtx. sorry beaches,just wondering,i do hope you get some help x

  • Thanks for the support and kind thoughts and especially Misty - at least I know I am not the only person in the worldwith this! Maybe it will get better if I can get over the neutropenia. I go back to the Dr on Weds to see what's going on. Thanks again for all the good wishes - will keep you posted, x

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