Phototherapy

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I have chronic/delayed pressure urticaria 10yrs now. I have tried many medications to no avail including omazibub injections, 2 courses. Been classed as hard to treat patient. Next week will be having Phototherapy (untra violet lights) for 4 months.

Curious to know if anyone has had this and if it has worked. Would appreciate any info and thanks in advance.

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  • Posted

    Hello

    For the URTICARIA did you try HYDROXYCLOROQUINE. ? This is what my doctor wants me to try next. i am breaking through low dose of PREDNISONE that I have been on for over 3 years now.....so upsetting and afraid of all the side effects on these other medications.....What can you share about these ultra violet lights......

    thank you

    Wendy

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    • Posted

      Yes I have had hydroxychloroquine. Stopped taking when eyes became problematic. Did not want to risk my eyesight, because can cause blindness in very rare occassions. A small risk but one I was not comfortable taking. Prednisone can help bringing some relief but it's long term use is not good. I myself have used and now have brittle bones. Also my body has become immune so doesn't really work for me now. I haven't had my treatment for phototherapy yet, was merely asking others about it. All i know is that hopefully it can strengthen my immune system, and as you may know this is a autoimmune disease.

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    • Posted

      Hi Ayda

      Urticaria is just awful! Just seems that all the medications that help somewhat also have bad side effects. How many years were you on Prednisone and what was your dosage? How long were you on Prednisone when you found out you have brittle bones? I was all the way down to 1 mg on the PREDNISONE WITH 2 fexofinidine a day. Then a week ago i started a bad breakout ( usually during the night).......scary as i am now trying 5mg in the am and 5 mg in the evening and i am still breaking out. I sent an email to my doctor to see what to do and afraid she will recommend the Hydroxchloroqine, dont want to lose eyesight! How long were you on that? I hope I'm not immune to the PREDNISSONE now too. its been over 3 years. I AM 67. MAY i ask everyones age. i had Urticaria 2 other times in my life much younger ...lasting 2 years then 10 years remission...again 2 years, then another 10 years than remission for another 10 years. This time it's going on 4 years and no sign of remission. i thought I was close a month ago as i was down to 1 mg! then i brokeout again big time after CHRISTMAS. I THINK MY IMMUNE ISSUES are from STRESS. I appreciate all replys!

      Wendy

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    • Posted

      Hi Ayda

      how long were you taking the hydroxycloroquine before you stopped.....and did you take it along with the Prednisone? Were you hive free while on the med? Did you experience hair loss on the hydroxycloroquine? Sorry about all my questions....

      Wendy

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    • Posted

      Hi Wendy

      To be honest was not on hydroxychloroquine for very long, stopped taking because patch of blood appeared in my eye within 2wks and got anxious in taking it after that so haven't really given it a chance. Don't ever want to take a risk like that. I have already developed a liver disease because of medication but the medical profession would not own up to that one. I have had prednisolone for many years, basically used it as back up. Caused me to now have Osteopenia, brittle bones. I've had practically every tablet that can prescribe as all those mentioned on here, guaranteed I've had at some point. I'll keep you and others updated about the phototherapy. Knowing my luck or the gambles that we take to ease this horrid disease, that I end up with an additional ailment in our quest to ease our symptoms.

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  • Posted

    By 2 courses of xolair do you mean 2 times as it took 6 months for mine to start to work..I have taken it almost 2 years and do have breakthru hives but so far allegra or benedryl is taking care of that.. I also have thyroid disease and they say that causes the hives.. i dont know anything about ultra violet lights let us know if it works..

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    • Posted

      Hi Jana,

      When I said 2 courses meant I had a gap because you can only have up to 6months. Get 1 shot a month for 6months. The following year the same. I will be having my phototherapy treatment started next week. Have not had much response on here about it, so haven't had much info if it works but will update when I've finished my treatment in 4months. Probably another failed attempt at trying to control this complicated disease.

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    • Posted

      @ayda I have had 2 sessions of light therapy 3 months per session. Being a redhead with easily burned skin my treatment started with 10 seconds and increased over the 12 weeks. It doesn't sound like a lot, but for very fair skin it's enough. Travelling all that way to hospital for 10 seconds of treatment sounds futile, but it is worth it. While i was having treatment, it helped. But for me, within a week of it stopping my breakouts return. I am a hard to treat patient, so please don't let my case discourage you.

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  • Posted

    Like you, I have delayed pressure urticaria as well as spontaneous and heat induced. Also like you I am classed as a hard to treat patient and omazilumab did not work like it should for me either. I have had 2 sessions of 3 months of phototherapy and while I'm having the treatment it does have a little effect on my outbreaks.

    I can only advise you to give it a try, it's worth it to see if it helps and find out just how much or how little it helps for you.

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    • Posted

      Hi.......my Urticaria was all over hives and did not react much to pressure until my most recent outbreak this week. When i wake up now the hives are all in my scalp, back of neck, shoulders, and outside of my thighs ( I am a side sleeper ). Also when I Took my meds in the morning...after a couple of hours the hives would go away....this too has changed.....the hives on my thighs are not going away and are painful. I wonder if my Fexofindine that I take twice a day isnt working anymore or the PREDNISONE ......?

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    • Posted

      I have never been treated with prednisone so cannot comment on that. My current episode started on 3rd July 2012, 24 hours after surgery (doctors believe the trauma of surgery Triggered the outbreak). Since that date I have had combined therapies including cetirizine, chlorphenamine, loratidine, montelukast, tranexemic acid, fexofenadine, amitryptiline, ranitidine, hydroxichloroquine, azothioprine, cyclosporine, omazilumab and 2 sessions of TL01 light therapy. I'm currently on amitryptiline (150mg) as a neuropathic inhibitor to reduce the constant feeling of skin crawling and fexofenadine (180mg 2 tablets twice a day) to reduce the outbreaks. They don't take them away completely, they have never completely taken them away.

      My breakouts are everywhere, scalp, eyes, ears, mouth, neck, back, torso, feet, hands, legs arms. Basically, everywhere, but mostly it's delayed pressure usually in areas where clothing presses or i experience constant pressure for at least 20 minutes. Sleeping was difficult until I got a memory foam mattress. It was the best purchase I made. I now manage to sleep with reduced outbreaks.

      Have you discussed increasing the fexofenadine dosage to see if that helps? It's another option than increasing prednisone. Also gabapentin can be used for urticaria, perhaps it's time for a review of your treatment and discuss other options?

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    • Posted

      Hi

      Did you have urticaria at anytime before your surgery or was it your first outbreak? These past couple years when i have been on mostly low dose of Prednisone I have been able to be mostly hive free. Prior to that my doctor started me on Cyclosporine slowly then needed to add the Prednisone for me to get hive free. My urticaria was severe as well and went through several doctors and meds including Xolair injection that didnt work. i have not heard of some of your meds so have not tried all. i was thinking of including Lexapro to calm my fears after this recent outbreak. As mentioned i also take the 2 fexofinadine. someone mention about mixing Zyrtec and FEXOFINADINE. do you take your fexofinadine together or am and pm? my hives come out mostly in the night.......and YES.....the memory foam on bed makes a huge difference! What does the gabapentin do to help. what my doctor has been hoping is to go down so slowly on the Prednisone...weening off down to 1mg like I was on last month then go everyother day and hopefull go into remission. i just found out i have had a UTI (no symptoms oddly enough) and may have caused this breakout. I was so upset that I HAD TO GO BACK UP TO 10mg for a week then slowly go back down again...thats when she mentioned about the Hydroxychloroquine which has not good side effects as well. just wish we could treat this naturally!

      Thank you for sharing

      Wendy

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    • Posted

      My first outbreak was at 9 years old I was officially diagnosed at 17 after a 3 year outbreak beginning when i was 14. I have suffered with urticaria for more than 30 years. Before my surgery in 2012 my urticaria had been dormant for more than 10 years. I don't actually know what gabapentin does for urticaria as I'm still waiting for my doctor to approve me using it. However, both my dermatologist and immunologist wanted me to try it to see if it had any effect. As for fexofenadine, I take 180mg tablets , 2 tablets twice a day, plus amitryptiline 150mg a day.

      You must be American, zirtec is cetirizine, lexapro is Escitalopram, an antidepressant.

      Amitryptiline is also an antidepressant and I take it for several reasons, its a multi purpose drug. It is given for many illnesses and for me it controls neuropathic pain, inhibits nerve sensation and controls depression.

      I have taken hydroxychloroquine and I was fine on it. As long as you are regularly monitored for eye sight issues, abnormalities and you have regular blood tests, you should be fine.

      I couldn't take cyclosporine for more than 2 weeks, I react badly to that and azothioprine, one affects my liver the other my kidneys. My doctors tried both and stopped them both before 2 weeks was complete.

      Urticaria can be helped with diet and monitoring of triggers. I have found that by reducing or eliminating processed foods and foods heavy in preservatives, that my urticaria is eased. It just doesn't completely stop. I also find that eating lots of fresh fish, chicken, vegetables and fruit helps too. I juice every morning with a slow juicer and I juice vegetables in a morning, not fruit. Things like kale, carrots, spinach, beetroot, celery. . . The list is endless.

      I eat as much fresh food as I can, it means having to make every meal from scratch, but it's worth the relief it provides. And yes, it's more expensive, but I find that the cost and inconvenience is far outwayed by the benefit to my health.

      I hope they find the answer to your issues soon

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    • Posted

      Hello

      Yes, I am in the US. Urticaria is so difficult to understand effecting the immune system. For me the three times I have had a breakout was after very stressful times in my life with decades of remission in between. Then I was able to control the hives with Claritin or SINGULAR.....one pill a day. This time i guess because Im older the only thing that kept me out of the ER was the Cyclosporine and Prednisone....was very glad to get off the Cyclosporine as it made me nervous to be on it. Before that I was on Dapsone .....it worked great until my red blood cells were splitting and had to go to a hematologist and was treated with PREDNISONE to get my blood under control. A friend of mine is on Gabapentin, I will ask her what its for.

      I so agree with you with eating well and fresh foods. I was doing well for awhile then started not buying fresh each and Organic.......

      I was in my late twenty's when I first broke out.

      Wendy

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