new labs once diagnosed?

[deanna]

Hi, Since I have been diagnosed with WG- limited, I have seen the doctor once and am to return soon. The last time I asked her about repeating the WG markers and she said that she would not do that. She will monitor me by how I feel- me telling her any aches pains etc., side effects to the medication and we will adjust the medication or change if needed. She did do blood work for CBC and CMP. I am on 75mg of Imuran. Is this the best way from what other doctors do? I am in a large university setting and feel I am getting good care. Other than hair thinning on the Imuran, and some joint pain I am doing ok. Am on Folic Acid for the hair but not doing a great job, can only imaging what it would be like it I wasn't on it. Thank goodness for hair products!
On another note, I have had hearing issues since before I was diagnosed and no one was sure what was going on. Had tube place and still in but hearing never improved. It might be out now. The ENT is finally convinced it is the WG was on steriods but did not help. Nor has the Imuran. Will this be a problem I will have to live with forever? The ENT, who is Chair of the department is baffled on what to do. What have other WG done about the ear issues?
thanks for any help
deanna

[Dirty Don]

Deanna, the ear damage may be permanent. In addition to the WG direct damage, my Eustachian tube was stuck open...ENT (Mayo) tried a new technique to fix it...poor results, didn't work...damage is permanent till next technique comes along. As for the folic, triple the dose...seriously...it's only a vitamin & the body will pass off the extra, but the extra strength will help the hair. I was losing hair while on MTX & doc tripled dose of folic, it all came back in...curly even! And, your ENT should not be baffled...there's plenty of help, advice, etc. available. Best to you.

[darl-p]

It is good that your Doc can appreciate the value of "how you feel". This seems to be the most important aspect of monitoring the disease, but the blood tests are an important factor for other findings.I have blood tests done on an ongoing basis. Several of my Docs always ask how I feel and the ones that don't, I feel they use the blood test as all knowing. This does not give me a high confidence in their opinion as there is so much that is unknown about the disease and how it affects folks differently.

[Pete]

My hearing damage is permanent also. The disease really attacked my right ear resulting in a damaged Eustachian tube. Sometimes it works ok, sometimes not. The result is that I have about a 40% hearing loss in both ears. I have hearing aids. They help with restoring the frequency ranges I can hear. Unaided, my hearing is like listening to a stereo with only mid-range frequencies audible. With aids, I also hear bass and treble better. (Operative term is "better". I still don't hear really well.) Noisy environments are difficult for me to zero in on one person speaking.

As for labs, I am now having a bi-monthly CBC, C-RP, sed rate, comprehensive metabolic panel, and urinalysis. Both my rheumy and PCP put stock in how I'm feeling. Most of the time, I feel great.

[Alias]

I believe many docs would keep you on monthly labs at least until it is clear you have a strong remission going. The standard labs are CBC, CMP, ESR, and CRP. I'm currently getting those every three months. Every case is different though. It's a good thing to talk about with your doc about again if you have any doubts.

The folate does help with hair thinning. I was saving money on haircuts for a while but seem to be pretty much back to normal.

Hearing loss is common. I have permanent hearing loss and tinitus. A hearing aid is marginally helpful for me. It would be good for you to know if you have conductive loss or nerve related loss, and what your ENT recommends.

[Gab122]

[QUOTE= As for labs, I am now having a bi-monthly CBC, C-RP, sed rate, comprehensive metabolic panel, and urinalysis. [/QUOTE]

Hi Pete,

Just wondering if "bi-monthly" labs means every 2 months or twice a month? I googled it and I guess it is used both ways. I'm guessing you get labs every 2 months? I have been wondering what my dr's plan will be for labs. I should know more at the next RA appt on 9/9/16.

Thx
Gab

[Pete]

Every other month.