RA OA now hypogammaglobulinaemia

[8124]

hi anyone else have Hypogammaglobulineamia? My Ruhmy said I need a new left hip and so sent me to see a surgeon who agreed and went ahead with all the pre op checks, he found my antibodies were very low so he arranged for me to have some extra blood tests by the Clinical Immunology & Allergy dept where they found that my Igu level Was very low (IgG 2.4 - IgA 4.6-IgM 0.5) and recommended that I should start Immunoglobulin replacement treatment before having surgery . this took 3 sessions of infusions before my antibodies were high enough for my surgery to continue, all now done and am now pain free in my left hip, shame about my other joints. I am now told that my immunoglobulin treatment will most likely have to continue for the rest of my life so as to maintain my now near normal antibody levels, OMG whatever next???????? Neil

[Cotton79]

Hi Neil great news that your pain free wonder if low levels could be caused by medication or did doctors give any reason for low HgB level

[8124 in reply to Cotton79]

Hi thanks for your reply, there is lots of my history I have not told but here is some of it, first to note i am now 68 years old, at 48 yrs I had Pneumonia, possible Legionella not very well known at this time but I did a lot of work cleaning out water cooling towers!!!??Bowel cancer in 2005 also during my recovery I had Hsp (Henoch schonlein purpura) Vasculitis The main treatment for this was steroids (Prednisolone}, this led to possible Duodenal ulcer. 2010 diagnosed RA treated initially with Sulphasalazine and Hydroxychloroquine. renal impairment in 2014 Sulphasalazine was the possible cause and was switched to Methotrexate RA now reasonable control.2014 under investigation for possible, (wait for it) Pheochromocytoma loads of MRI plus Nuclear scans Cat scans and others but nothing found yet thankfully 2016 Pneumonia and Sepsis taken to A and E urgently one week stay in hospital with do not cross tape all round my bed on antibiotics very worrying times. It was during my recovery that my left hip became very problematic which all led to the problems mentioned in my post I hope this may give a brief (that's a laugh) history.

Neil

[Cotton79 in reply to 8124]

You really have had a very tough time. I’m sure you were told this already there is an increased incidence of autoimmune and connective tissue disorders associated with Hypogammaglobulinaemia, Immunoglobulin replacement therapy hopefully should also changed the incidence of infection.

[8124 in reply to Cotton79]

hi again slight problem here will try to explain.The doctors that try to treat me ie rheumy, endocrinologist, nephrologist, surgeon all at the Derby Royal have my records on their computers, but sadly they can not communicate with the clinical immunology and allergy department where i get my infusions at the queens medical centre in Nottingham. The main line of communications between the two hospitals seen to be (wait for it) across the breakfast table at my Derby surgeon's house as he happens to be the partner of the head of the immunology and allergy in Nottingham (would you believe it) bet the kids just love all the gory details talked about whilst crunching their cornflakes.Good job i have a good sense of humour,what? and now after explaining to the endocrin. man about my hypogammaglobulinaemia he agrees that may have been the problem all along.

Neil

[Cotton79 in reply to 8124]

A good sense of humour is needed, my rheumy is very much all for social media in his practice and FaceTimes other doctors so he gets the whole patients story unfortunately some just deal with each medical issue as a single problem but that doesn’t tell the whole story a multidisciplinary approach is needed

[Pam-51]

I too have hypogammaglobulaemia, diagnosed last year. Have previously posted about this but you are the first who has also got this condition and reported it on this site.

I have had RA for over 40 years, taken prednisolone and methotrexate for over 30 years and been on Rituximab infusions for 10 years. Also had numerous joint replacements, including R ankle replacement, L ankle fusion, R hip replacement and finger joints replaced. Now awaiting total left knee replacement.

So pleased your surgeon was so careful with your pre-op assessment and picked this up. Unfortunately I had to diagnose myself! After 5 years of recurrent infections, chest infections UTIs and shingles 6 times I began my own research and came across this condition. When I approached my Rheumatologist with my suspicions he checked out my blood results and found that my IGg had been low since 2012 and this had been missed!

Have had two series of immunoglobulin therapy via infusion since and we are now trying to balance my Immunoglobulin status along with the Rituximab treatment. Not sure if this will be the answer and I may have to change to another biologic. Apparently some have a lesser effect on the immune system.

Given the increased use of biologics and methotrexate I would be very interested to know how prevalent hypogammaglobulaemia is in people with RA. You and me for starters! Let me know how you get on.

Best wishes Pam

[8124 in reply to Pam-51]

hi Pam sorry it's been a long for me to reply how ever. new hip in now very good but now my right knee has given up on me, sod it, so now on the list waiting for new one still on the infusion for Hypogammaglobulinaemia. have you tried joining PID group, I find the info on there is very helpful-------PID uk (support for families affected by Primary Immunodeficiencies) piduk.org or 0800 987 8986 let me know if all this is of any use to you Neil

[Pam-51 in reply to 8124]

Thanks for your reply, so pleased new hip settled. My left knee still on my to do list as have spent the last year getting my immune system sorted. My immunologist has been great and I started new treatment in July which has proved very effective and no infections since then!

So, this involves weekly abdominal infusions with immunoglobulins. My husband helps me with this as drawing up the drugs into three syringes requires a strong pair of hands because the substance is very viscous. Takes about an hour or so to infuse the immunoglobulins into three different sites in my tummy. Getting used to the routine now.

This form of treatment is now preferred as it doesn’t involve hospital treatment three weekly, and is so presumably a bit cheaper. Also the weekly treatment keeps the immunoglobulin levels more stable with no peaks and troughs as with the 3 weekly therapy. This is for life but I am well now, don’t need the prophylactic antibiotics, and it is a relief to be free of the frequent infections which were ruining my quality of life.

Will check out the PID group. You can never know enough about your medical conditions, this enables you to take control. Take care.

Best wishes Pam