People not understanding dpu and chronic urticaria
Posted , 7 users are following.
I have only been diagnosed with chronic spontaneous urticaria and delayed pressure urticaria recently. It started this February, with every day since I have been so poorly. The usual head to toe with huge chronic hives, swelling of the face, lips, eyes, so numerous hospital visits. I have bowel problems which they think is linked and been told I have not got degeneration of the spine. In the last few months I have really become depressed as I'm in constant pain in all my joints which the consultant has told me is the pressure on my bones. My hair is falling out maybe due to the medication, I constantly feel sick, extreme fatigue, and anxiety. I have changed my whole life where I keep out of the sunlight, try to keep cool, wear loose clothing etc and had to give my job up.Before, I worked full time for a charity, loved being outside, wore what ever I liked, and enjoyed life. My partner says he understands but is constantly on my back to get back to work. When I exhausted he says I'm lazy, and when I say I don't want to go in the heat he gets bored of frustrated as it restrictes me going certain places. When I have trouble walking through pain he tells me to hurry up and walks way in front of me, which puts pressure on me to hurry. This just makes me more anxious which makes my hives go crazy. He seems to think this is going to get better and everything will be back to normal. He came to the consultant with me and he explained this can be disabiling and how it affect me but he thinks it's all attention seeking. What do I do? I know there is no cure and my illness still isn't under control. I have two children, buying a new house at the moment and we are due to get married very soon. I can't promise to get better quick as I hear people with this condition have it for years. Please anyone who has been through this or has any advice, I would very much appreciate it. I can't speak to my surgery as they have said we have never had a patient with this illness so we know nothing about it. I don't have anyone to share just how this illness is wrecking my life.
0 likes, 18 replies
January20 michelle07282
Posted
Hi Michelle,
Your symptoms sound particularly brutal. So I wish you nothing but the best. I don't know how old you are, but your partner very unsupportive. Hopefully, they'll come around otherwise, drop them. As a divorcee myself, I know I ignored the writing on the wall before I got married. Just recognize that things may not get better or may take a while to get control over healthwise so the less stress you have the better. Stop doing all the things you can that are stressful. Do what you can to enjoy the fact that you are in fact . . . alive. Hopefully, you will be able to return to work soon but maybe in a new field.
The symptoms you described sound like more than typical Chronic Intermittent Urticaria (CIU) or hives, which is not associated with pain of any kind except if swollen at bendable joints. The fatigue if not due do medication is unusual, too. CIU is triggered by mast cells or macrophages due to a rogue IgE sensitivity to either a real or not true allergen. H= Histamine, the substance wreaking havoc in our bodies, is abnormally released. My doctor has not found auto-immune antibodies or immune-related chemicals in my bood but CIU is an abnormal immune response even no organ or tissue is being specifically attacked like RA, SLE, or UC. Learn as much as you can about the illness- go to American Association Allergy Asthma Immunology website or other reliable source. Better learn your medical terminology and Mneumonics- everything is on Google.
I've been dealing with CIU for 7 months and it has affected my life, health, and attitude; I really do try to find the joy in it and appreciate the small things. My hives recur monthly for about 1.5-2.5 weeks each month and do not appear to be responding as I'd hoped to Xolaire injections q4 weeks so my doctor is increasing them to q2 wks so I'll see what happens. The fight to control the disease has negatively affected my overall health due to high dose prednisone, which led to rapid weight gain (20 lbs in 4-months), bloating due to water/sodium retention and what had been an out of control appetite along combined w/bad food choices. I literally had just celebrated a 15 lb weight loss through lifestyle modification and diet and had just had a physical exam and annual labs that showed me to be in great health in 12/2016. Now in 8/2017, I am likely diabetic (increased blood sugar & glycohemoglobin), have mild acute kidney injury as my creatinine is above normal, and elevated BP >130/70 (pre-hypertension), which is all attributed to the treatment for hives or more specifically prednisone. This drug is a blessing and a curse for all its side effects. Talk about having to make significant life changes. I'm not motivated to change because I want to or have the energy too but because if I wanna stay healthy for decades to come, I have to make major changes. Fortunately, my appetite significantly decreased (no more intense food cravings) as my prednisone dose lowered to around 20-25 mg/day. I noticed that hydroxyzine (Atarax) q 6hr may also be decreasing my appetite. Anyway, I take 8 different medication throughout the day to combat the CIU - all anti-inflammatory, antihistamines (3 types), a leukotriene-blocker, H2 blockers (2 types), and low dose tricyclic antidepresent w/H1,H2 blockage; the plaquenil will make #9 (used like an anti-inflammatory) so it's not surprising there were negative side-effects beyond just sedation, dry mouth and sensitive teeth. I was already taken 4 of those 9 meds already for perinneal allergic rhinitis. The doses are higher for CIU.
My point is that this illness is a struggle for everyone and a lifestyle changer. There are counselors out there to help if I need it, and I like my allergist and her staff. I am going back on a medication whose side effects scare me a bit, hydroxychloroquine (Plaquenil), but my allergist says many pt's get good results except it takes at least 3 months to notice any difference. The drug costs me $0.88/pill and I had stopped it after 2.75 months the 1st time cause it didn't help and made my teeth extremely ultra sentitive and I'd already been usng Sensicare toothpaste for 18-20 years for this problem.
If not contraindicated, I would get the annual flu vaccine if you are taken an oral steroid to decrease your risk. More secondary infections associated with taking steroids. Otherwise, the main drug, is the anti-H once or more daily.
michelle07282 January20
Posted
Wow you really have good knowledge of your medications. It does sound particularly more educated in America about this illness. Over here in the uk we seem very behind. Well that is my experience over the 6 months. I also put 2 stone on since February and refused a few weeks ago to continue taking prednisone. Here in the uk I think it's easier to chuck you on steroids rather than try to find the right medication. Hopefully when I get an appointment at guys/st Thomas's in London things will gradually get better. I do have a annual flu jab as I have asthma so at least I can tick that off my list. When I paid to see a consultant dr gratthan he did explain the joint inflammation and pain I was experiencing was due to the delayed pressure. As even laying in bed hurts and I wake with hives on the pressure points like my hips, back, side of face. I have to say I have felt more positive recently since chatting to some wonderful people on here. I will definitely look at this sites you recommend and also look into the meds. Thank you
rose00110 michelle07282
Posted
I'm really sorry you are going through this don't let anyone make you believe its in your head continue bugging the docs until they get to the bottom of this.