Sunday, November 08, 2009 boneyfingers asks

Q: Frustrated with my symptoms, been sick for 4 1/2 weeks

Hey there.... I am soooo frustrated with some of the symptoms I am dealing with. I started out with an abdominal rash that started in mid abdomen to side and alittle around on my back. In urgent care he immediately diagnosed me with shingles, gave me a script for Valtrex and sent me on my way. I saw my primary 2 days later and the minute she looked at it she said no its not shingles (I didn't think so) I had no blisters and no pain but had slight itching. Final dx: Some kind of virus but she is honest and just said she wasn't sure. She also said (which I know is true) some ppl will sometimes get a rash and eventually goes away and we never know what it is. Mine last about 1 1/2 weeks but the valtrex did help. After that I got respiratory and flu symptoms. My daughter got a cold and thats what started the flu/resp symptoms. After 3 days I went to doc and of course its an automatic flu and no meds giving. She did however give me a z-pack and said don't take it unless you need it (this was friday). My temp was 101.5 friday and I felt worse saturday so got the med filled and started it on sat. I could tell the diff within 4 hrs of the med but was still stick. My husband and brother both got the respiratory in fection from me, and both got over it within the week. I'm still sick even tho they are better. Once again daughter gets cold same week and my symptoms worsen. I cannot seem to get rid of this grrrrrrrrr. When i went to my primary's they did a CBC on me and a week later I found out my wbc was 3.5. I was concerned about it but they weren't. they had me recheck it in 2 weeks and it had gone up to 5.5. My leukocytes and neutrophils were normal so they weren't worried. But here i am still sick since 10/5 and today is 11/8.

My question.....i am on 150 mg a day of Imuran. Is anyone else and are you having similar problems with it??? I have been on the Imuran since august 09 (approx 3 mos). Am I gonna feel like this with all the meds?? My rheumy wanted to put me on Methotrexate initially and I refused initially because of the side effects which unfortunately they all cause. He told me if I don't take anything I have increased risk of destruction of my bones and get the deformity of my hands which I don't want. Any opinions on the methotrexate??? I have two gf's on it and they say its been their best drug. Is this what we have to put up with to survive?

Need advise/ideas/suggestion

Thanks!!!!!

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Answers (1)

Ellen Galo

11/10/09 2:08pm

Hi - I'm not on the same drug but similar questions often arise. When I was first diagnosed, the dr. was going to put me on MTX and I was scared too. Then my liver enzymes were high, so he put me on one of the biologics instead. They all have risks, and yes it is scary. But actually methotrexate is considered conservative, first-line treatment these days. I know if I have an infection, I'm supposed to get antibiotics and stop Enbrel (my current biologic) until it's gone. I don't know if that's the case for the non-biologics, however.

The first drug I was given was Remicade - I got as far as 2 infusions but ran into problems with funny underneath-the-skin itchy, like ants crawling. I've been on Enbrel for 4 1/2 years, and I do have some odd skin things happen. I had an infected sebaceous cyst on my breast and took oral antibiotics for that (2 rounds to get rid of it). I notice that even when I get a paper cut on my finger, it takes a long time to heal. Sometimes I delay my shot to give it a better start (when you do your own injections, you can be in charge of your own schedule, which is nice - no having to make appointments!). I also now have some eczema/folliculitis (supposed non-infectious) on my legs, but that actually gets better with the Enbrel, surprisingly. I have a steroid cream for that. Yes, it does go on and go. I had several sinus infections too. I now use the saline nasal spring "ocean" which helps to clear germs and mucus out of the nose, etc. Can help with sinuses too, somewhat.

What you're dealing with sounds a little more difficult, and I'm wondering how the choice of Azithioprine was made - I guess it's for Crone's Disease and/or RA. Do you have digestive issues as well?

In any case, hope you also hear from someone who can match up with your treatment more closely and help you out...

By the way, my WBC was down for a LONG time - a couple of years. When it goes back up, my symptoms get worse. More inflammation. I'm also anemic, pretty typical for someone with RA.

Q: Frustrated with my symptoms, been sick for 4 1/2 weeks

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