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Posted 2/25/2010 6:19 AM (GMT 0)

So I am new to this type of forum.  I found by search information about CU but when I looked for the format UC is not listed so I hope allergies is appropriate.  I have had CU for 15 years with occasional remission.  I am now seeing an expert allergiest who deals with dx of steriod dependent idiopathic anaphylaxis.  I am so tired of being on steroids as the effects I am having myopathy, weight gain, bone loss, etc. etc. is really reaking it's own form of havoc on my body.  Have done what so many have verbalized.  Yes, it causes so many changes within my life.  My drug allergies is a doctor's night mare.  Seeing a new MD or an ER MD is troublesome as I am not the typical in and out patient.  I recently learned CU patients are also at high incidence of fibromyalgia and yes, I was recently dx with this in the list of items.  The cost of medicine and more importantly on a quality filled life is so frustrating.  For me the severe reactions is a matter of life...I carry epipens on me and have a couple at my bedside.  People do not understand even when they try as the severe reactions are never predictable.  Try to have a normal life and end up canceling things or rearranging and I hate to commit to anything...it has cost me my job, I have broken unhealed bones and fear more...has rippling affect and causes other health issues.  Thank you for letting me vent.  I go back to Northwestern Hospital in April....Taking an immosuppressive drug now hoping to lower the steroids.  Fibromyalgia pain has been a huge impact over the past couple of months...I live a day at a time and try to keep a smile on the face.

Posted 2/25/2010 10:22 PM (GMT 0)
((((((((((((((((((Gentle Hugs)))))))))))))))))))))))))))

I know the frustrations of drug allergies. I'm recovering from pneumonia right now and it was a nightmare trying to find and antibiotic that I'm not allergic to. My doctor hates to see me come in his office wheezing, because he knows we're in for a battle.

Joy
Posted 4/23/2010 12:49 PM (GMT 0)

How is everyone doing ? It has been rather slow on this subject. I guess everyone is just enduring.

I have been graphing my daily life with Urticaria. (1) being great days and (5) horrible (ie: take some Prednisone) Today I am covered head to toe again and at about a 4 level(pain and itching) I just took two 180mg Allegra and it has calmed the wheals down some what.

I am adding a new drug to my mix of Allegra,Singulair and Tagamet. It is Zysal (sp) The graphing I am doing gives me the ability to see if any new drugs are helping. I know it takes time for them to work. Using this method I have stopped taking Claratin and Colchicine as they are not helping.

5

4           /.

3   ./

     22    23    24    25    26

 No down slash on my keyboard so can'tdraw it well. The days are on the bottom and pain/rash conditions are on the left side. This works well for me as I am into plotting which drugs,foods,etc effect my condition. It is easier for me when I write it down this way. It makes it very clear what happens when you take a couple of small dosages of Prdnisone and the rebound effect about 3-4 days later !

 Hopefully I can find the right antihistimine /dosage combo that works for me. I am not there yet.

                      Dick

Posted 5/6/2010 12:52 PM (GMT 0)
Dick, how about seeing if your doctor would add gastocrom. It's a mast cell stabalizer and it makes all the difference in the world. My UP has deminished and my symptoms are much better controlled (well, normally, I'm in a bit of a flair right now).
Posted 5/15/2010 2:49 PM (GMT 0)
Hello to everyone. I was recently diagnosed with CU, after 5 years of seeing different specialist and after 3 different diagnosis of JRA; Still's Disease and Vasculitis. This is really difficult. I currently take Clarinex and Zantac; the new specialists want to do a biopsy with some genetic blood work.

Is anyone on this forum found a CURE?
Posted 5/18/2010 12:38 PM (GMT 0)
Sorry I haven't been on this forum in awhile. I am on the Chronic Urticaria Society Forum everyday. This is a group of people ,like ourselves, from around the world that have CU. There is a wealth of knowlege on their site about CU.
Spotted fox : I am using a Chromlyn cream that I made up from Eurcin cream and Nasalchrom (sp) The formula is on that site. It stops the pain and itching from the hive wheals like RIGHT NOW ! Good stuff. I will check out the Gastochrom. Thanks!
My continued charting of my daily condition and the drugs I take is working well. It really does help visualize what works best and what does not. I have done this now for over 2 months and have varied my antihistimine intake because of it.
I am still using Prednisone if I get a"stage 5" flare and can no longer stand the pain. (mainly from a swollen,red hot sun burned feeling face) However, I now have a method that works very well for me.(again because of the graphing) I take 10 mg of Prednisone then skip a day then 5 mg then stop taking it. My overall condition drops to a 1 (couple of welts,no pain or itching) I will then gradually be stabilized at a condition 3 (welts,little pain,liveable) as the wheals return for about 2 or more weeks before it starts getting worse and then I repeat the cycle.
I am going to cut the Prednisone dosage even further during my next go around to see how that works. The idea is to get the lowest effective dose.
According to 2 doctors this usage and very low dosage of Prednisone should not be a problem at all. My goal ,of course, is to quit using it period and will if I find the right drugs to last me until remission. (if it ever occurs)

Dick
Posted 5/18/2010 8:23 PM (GMT 0)
I take 2 medications now which are Clarinex 2x daily and Zantac 2x daily, they want to do a biopsy, have you done a biopsy and will that show where the problem originated from? What are the physicians looking for?
Posted 5/19/2010 12:17 PM (GMT 0)

They have not done a biopsy on my wheals (lumps) but a ton of blood tests.(all normal) The last testing went to the Mayo clinic. That is suppose to determine if this is an autoimmune disease in my case. If so then it is a problem with my own immune system and there is an unlikely external cause (food,mites,etc) In any case if you can't find an external trigger that is causing this then you can only treat the symptoms until/if it decides to leave. I am curently taking 2-180mg Allegra,2-Tagamet,1-Singulair,1-10mg Atarax,1-10mg Claritin (sp). Each of these drugs I am taking daily. I will most likely up the dosage as this is not helping too much.

I strongly advise you to take a look at the International Chronic Urticaria Society  (ICUS) website. You will find out everything you want to know about this stuff (all the treatmets,blood tests,drugs,etc.) There is a very active daily forum there also. Believe me your are not the only one suffering from this. I am one of the few males who has this as it is primarily a womens disease.

 After visiting the ICUS website , I presented my doctor with  a 1/2 inch stack of papers listing studies,drugs,test cases,etc about Urticaria that I pulled from that website. I wanted to make sure he was giving me the proper treatment. He was.

Hope this helps

Posted 5/19/2010 3:13 PM (GMT 0)
Does anyone have any pain in the fingers, joints, anyplace else?
Posted 5/26/2010 12:49 PM (GMT 0)

understand all that ! ICUS is a great site with actually more info then I can glean from my doctor and most importantly other people who suffer from this and how they cope.

                       Dick

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