Humira and ME

[LadyJan]

Hi everyone. It has been a while since I posted in Dec re Humira and blood in urine.

I had my first injection early Dec and then followed by this blood in urine. Stopped taking drug on Rheumy nurse's advice and reported to doctor. Then followed a CT scan, ultrasound of kidneys and bladder and pipes thereto. Nothing wrong. A cystoscopy was then done and ok (comment a healthy bladder!). My GP suggested it could have come from vagina so a scan was done. OK but lining was 4.2mm against 4mm cut off. A hystosocopy was done, but failed to get inside utereus. Done again under anaethestic. Still no go so another scan done and lining was 3mm this time and all ok so was signed off. I then started back on Humira and within 2 weeksI was bleeding again! Rheumy insists this is not a side effect (although paperwork with drug says it is!) I stopped humira again because I got cellulitis,had antibiotics and as soon as I finished that I contracted a UTI. Had 2 lots of antibiotics for that and I still have it. The sensitivty test reveals "mixed flora" so no specific bug to treat.... awaiting latest test to see if any different.

I feel pretty awful. Along with starting humira I got lower back pain too which drives me nuts. Don't suffer with my back normally. Humira has not given me any relief, in fact I feel worse than before. My foot, wrists and hands are pretty bad and useless most of the time.Saw rheumy today and he suggests I reduce pred by 1/2mg per month as that is not helping bladder!!! and he did

not give a booster jab to help me be more comfortable. I told him i was at my wits end as this bladder thing for a month was pretty painful and peeing was not good.

I asked what did I need to do for pain - no answer. I have been with this guy for 13 years and he is usually very good-but not today. He will see me in 10 weeks. Bloods ok

CRP 17.....has been 124 in the past. So I guess I will have to get on with it. Excuse the rant but OH is deaf when it comes to RD (I'm seronegative by the way) A lonely disease without a doubt.

Hope everyone is coping with their lot...I read blogs everyday.

Ladyjan

[Nessa28]

I'm sending you a hug . Hope you pick up soon xx🤗🌷

[LadyJan in reply to Nessa28]

Thanks Nessa I need it . Awoke Inn today.

Lady Jan

[Nessa28 in reply to LadyJan]

I'm feeling the frustration I ranted yesterday I'm zero negative or was told I was who knows anymore it's horrendous to keep being told you're fine when you feel so awful . Try to pace yourself . The silver lining I have now is I gave up work last time I was so ill and we've managed mortgage etc so the pressure to be a work regardless of how bad I feel has gone and that has helped . I appreciate that people can't do it but I was lucky my husband put a stop to the ride and changed the direction . Hope your day gets less painful 🤗🤗🤗🌷

[LadyJan in reply to Nessa28]

So do i as booked a short outing to a garden today ..you never know to the day how you are feeling....

Maybe it will do me good

Ladyj

[Nessa28 in reply to LadyJan]

Have a nice time being outside is always a boost for me enjoy x

[LadyJan in reply to Nessa28]

I'm back and despite feeling off colour it got me out and I felt much better. I will pay for it tomorrow but maybe I can have an easy day.

Thanks

Ladyj