Chronic Urticaria - finally the nightmare is over!!!
Posted , 11 users are following.
In August 2015 I developed hives, completely out of the blue one sunny day. Starting on the soft skin on my arms and gradually spreading over time the outbreaks became more and more agressive. Primarily after exercise or being in the sun but also at other random times. I saw a dermatologist who diagnosed chronic urticaria and stated my return to excercise had caused it - just my sweat pores blocking and eventually it will be ok - keep exercising to unblock them. At one point I thought this was helping as the rash appeared to be burning itself out. However I got a rude awakening whilst on a weeks holiday for some winter sun. I had a massive outbreak the minute the sun touched my skin.
I took piriton daily as this was the only anti histamine to work (fexafenadine caused a massive reaction of hives which ended up with me in A & E) I began to do much research into Urticaria and also the possibility that it may be linked somehow to my Mirena coil. The mirena being in situ for 3 years seemed an odd culprit but there were enough reports of this side effect to warrent removal. I had the mirena coil removed a week ago and during this time my hives have almost completely gone. Day by day there has been huge reduction in severity and as the effects of the coil wear off my skin is returning to its healthy state. I am ecstatic to finally be free of this horrific condition. Any ladies out there suffering with this - check your contraception, particularly if it's the Mirena coil.
0 likes, 21 replies
beccy28511 gina27260
Posted
Could you be the answer to my prayers?!?!
I have suffered with hives for the last 5 months...I was run down and stressed at work in sept last year and thats when it started. After a horrendous Christmas of hives all over my body and face I was feelin pretty low. I seen 4 different doctors over the months all of which prescribed various ointments, bases, coolers, steroids, antihistamines and anti-biotics. The final doc who did a degree in dermatology put me on fenofexadine 4 times a day and referred me to the derm unit at our local hospital. The fex didn't do anything when an attack came, nor did the creams.
Whilst waiting for my hospital appointment I booked in with a local therapy centre for food allergy testing. They use an EAV machine and sure enough the tests shown i was reacting to all sorts of foods, soya, dairy, fruits and certain materials etc etc. I started a new diet and also changed all my products to natural, only wearing 100% cotton, come off all meds and used only coconut oil to relieve the itch and moisturise. This all seemed to help, the flare ups seemed less aggressive, still awful but not as widespread, it would either be my legs or back and only my forehead, not everywhere at once.
2 weeks ago I went for my appointment at the hospital, this specialist dermatology unit had me in there for around 7 minutes! I was palmed off with yet more drugs, day time pills which are actually used for treating ulcers and nighttime pills which act as sedatives. I had to fight for the skin patch testing which I have to wait another month for. I was told in the exact words by the dermatologist that, 'you might never know what is causing it'...How comforting! The pills seem to help last week, I was sleeping through which was a god send but then I stated reacting to something on Saturday, no idea what. Sunday was getting worse then when I woke yesterday I had to go to a&e as it was just too much. It felt like something was burning my skin from head to toe. After 3 hours waiting in a&e I was told to go home and call my doctor as there was nothing they could do. It wasn't life threatening so I was just wasting time. Fun times!!!
I'm off work again today as I can't put any clothes on only my pjs and I have to reapply coconut oil every hour. This is not a life!!! I had a thought a few weeks back, could this be anything to do with my coil? I have had the mirena for 7 years now, renewed after 5. I turned 30 last year and maybe it's my bodies way of telling me it's had enough of this alien! Now I think about it there is no ryhme or reason to the flares ups but maybe it's my menstrual cycle. I don't have periods but I do feel heavy and have swollen breasts etc so maybe this is it! I'll let you know the outcome once I'm free from it's clutches, wish me luck ?? x
gina27260 beccy28511
Posted
Hi Beccy, thanks for your interest in my post, sounds like you are going through a horrific time of it not only in the pain and discomfort but also the treatment and pills they are stuffing into you!! I think that, whilst your doctors comment does not seem helpful, i.e. they may never identify the cause, this is sadly the truth and the most frustrating thing about Chronic 'Ideopathic' Urticaria. They have not a clue what is causing it so to stuff you full of meds/treatments is only treating the symptoms and not the cause. Identifying the 'cause' is your only hope to ending this terrible condition.
I lived with this awful condition for around 18 months and like you sometimes there was no rhyme nor reason behind the outbreaks, they were always there lurking in the background, just waiting for something to trigger them. Having explored many forums and internet research in the quest for answers I stumbled upon the mirena as a possible cause. I toyed with the idea for a good few months, did more and more reading. Excluding factors like stress, job and house move (and actually testing these out to a degree by changing environments!) I eventually came to the conclusion that the mirena was the only change in my life which could be a credible cause. When I went to the clinic for removal (April 2016) they practically scoffed at me - especially when I mentioned internet forums! The nurse said 'well I've never been asked to remove one because of that' I showed her a photo of a flare up and said 'if I'm wrong then this won't clear up and I will come back for another one, but I have to try to see for my own health if I'm right'.
As per my post there was an instant improvement and this has continued over the 10 months since but it has been slow and not 100%. Throughout this time I have had a few isolated hives, really just one or two, strangely way more itchy than the full body rash but piriton has dealt with them easy and in general I would say, yes I was recovered (almost!). Then, in Jan 2017 I attempted to deal with my insomnia (mostly technology related but bad habits continue!) For about 8 days I took Nytol and guess what the bloody hives came back and with a vengence too! My heart sank! They mostly appeared after any activity - walking, running, housework even the weekly shop at Tesco! I went back to the gp and he gave me citirizine 10mg (which I never really tried the first time round) so I took one in the morning and piriton 4mg at night. Did this for a few weeks and sure enough the hives have gone again. In fact since last week I have not had ANY at all - even after activity. Have they finally burnt themselves out? I hope so!! Perhaps it was a relapse, perhaps it was a sign that my immune system is still compromised, who knows?
Well, I suppose the crux of my reply is that the start of the end was definitely removing the mirena, it certainly played havoc with my immune system and this has taken almost a year to recover fully - and even then I'm still scared they will come back!!
Have the coil removed and give your body time to fully recover, it really is worth trying and if it is not that then you can always have another one and continue with your search for possible cause.
Hope this has helped a little, I really feel for you, and I wish you luck in your recovery. Gina x
rose57869 beccy28511
Posted
Hi Beccy and Gina - I am going through the same thing. Hives for two months straight, horrible burning feelings, every time i rub or scratch myself i get hives, no relief from antihistimenes or steroids. My doctors keep telling me I'm stressed out and have prescribed anti-anxiety meds but those aren't helping either. I finally saw an allergist this past and he immediately said "get that Mirena out ASAP". I would have never thought of it as I've had it in for about 4 years, but he said he has seen these symptoms before and that I should try it. I had it removed yesterday and so far no change. Still covered in hives. I'm really hoping that after a few days I'll feel better but I'm really scared and so nervous about this whole situation. Thank you for posting your stories, at least I know I'm not alone. I really hope removal is the fix for me.
gina27260 rose57869
Posted
patricia76366 gina27260
Posted
Hi Gina,
I really hope you are feeling better now. I can definitely relate to your experience. I had the Mirena inserted in February of last year and in March I started to have hives every morning after I woke up. My face and lips would get swollen out of nowhere too. I went to two different doctors, including an allergist and they said I was probably feeling stressed or it was fue to something I had eaten, but I knew that wasn't the case because I had started a food journal and there was no pattern between what I would eat and getting hives. Finally in May, after almost three horrible months I decided to go to my country and see my doctors. My ginecologist told me to remove the Mirena asap and so she removed it that same day. The following day I was way better and my hives were almost gone. It's been almost a year now and I haven't gotten hives in a while, however, I do get itchy sometimes after taking hot showers and my lip gets swollen when I get my period. Hopefully, my body will return back to normal eventually.
I just can't stress enough to women who are thinking on getting the Mirena, please don't! It really can be a nightmare.