Hoping someone on here can give me some guidance.
I’m 26 and have recently been diagnosed with Lupus, my Rheumatologist has not yet put me on any medication as I was only diagnosed in January. I’m really struggling to accept I have this condition and living with the symptoms is becoming depressing and putting pressure on my relationship and work life.
I constantly suffer with fatigue and have no get up and go! I ache head to toe and feel about 90 years old, some days even just walking up the stairs is an effort. My joints ache and are painful especially my knees, hips and ankles.
I also have regular flare ups of huge mouth ulcers, mostly on my tongue or inside cheeks. I haven’t yet found anything that helps the pain or reduces the size of the ulcer, I have been using Bonjela and Corsidil mouthwash which helps relieve the pain for a very short period but does reduce them.
Another symptom I’m having which I would say is the worst one for me, is my lips swell to 5 times the size they should be and are burning hot and itchy at the same time my toes also swell and are hot and itchy. I went to see an immunologist in March who thought its sounds like Angioedema and I was told to take Antihistamines (Loradine 10mg) daily and to double the dose if I felt a flare coming on. Well I did this last night and have still woke up with huge sore lips and toes! Once the swelling has gone down on my lips they blister and crack, the last time I had this in March I used a coldsore cream to relieve the dryness and cracking, well today I was told by the pharmacist that I should not be using these creams if I have Lupus and that I should go to the walk in centre to get a steroid cream. I also have itchy skin all over and rashes on legs (look like red pimples).
Every 4-6 months I also get what I think is thrush, not sure if this is related to any of the above.
I’m getting married end of September and am really worried that I’ll wake up on the morning of the wedding with a trout pout! I went to see my GP earlier this week and she advised she could not prescribe me any medication until she has spoken to my Rheumatologist and also because I’m hoping to conceive after our wedding they don’t want to put me on any strong medications.
Can anyone relate to this and offer any advice please?
Thank you xx