Do you ever stop seeing the hematologist? Other questions?

[Ellen McDonough]

Hi All,

I have been tracking along fairly steady with my counts post horse ATG for 5 years. I am on very low dose Gengraf.My counts wax and wane but are for the most part fairly steady. I have tried 3 times to totally wean off Gengraf or wean even lower.I currently take 25 mg bid. I have been unable to because every time i have tried I have had severe left temporal headaches -even going down to 25 mg every day.
I had a car accident in 2/2014[rear ended] and had whiplash with a right knee injury.Lots of stress on the body.Since then I have had a reoccurrence of some previous symptoms I have posted on here before that no one [my doctors] have been able to find the cause of. Right eye pain and photophobia, Lymph nodes swelling and aching in the groins[especially the right groin] right upper and lower quadrant pain after eating[my gallbladder is out] and diarrhea for 6 weeks.[I have been constipated for 54 years up till lately]Had CT scan which showed ascending colon collapsed and slight thickening .I had a panscope in which they found some gastritis and a dysplastic polyp in my stomach. They did biopsies for celiac and autoimmune colitis /gastritis which were all neg and also for pathogens that may be causing the GI symptoms. They saw no signs of Crohns or ulcerative colitis.So they say it is IBS.Eye Dr didn't see any iritis or abnormalities but that was 4 weeks ago.
I have never had all of these symptoms. I am very fatigued as well.Not sleeping at night due to symptoms.
When I initially weaned from high dose Gengraf it was a VERY fast wean!! I got these symptoms then as well. I have always wonder if it was some autoimmune reaction. My Primary Dr told me this am "There is no end point to your care or management." My hematologist has asked me several times to wean off Gengraf even though I have tried .Can't because of headaches every time[I had a temporal artery biopsy which was inconclusive at the time initially]

I wonder if 1.How long do aplastic anemia patients see their hematologists if stable labs?
2. I seem to have other issues -maybe immunologically possibly(had a 2 cm axillary lymph node biopsied that showed"reactive node" 2012 -any recommendations of what my next step might be? I am frustrated.Symptoms for 7-8 weeks and none of my doctors are helping me now within Kaiser.I don't think they know what to do.
3.I took Andriol for about 1 1/2 years -1/2010-7-2011.
4. I have a partial genetic deletion 1p36.Lots of autoimmune disorders and cancer in my family history.
5. I think aplastic anemia is very rare and on top of that to have taken Andriol [ anabolic steroid] plus have a genetic deletion is even more rare.My Dr wanted to put me on antidepressants.I don't want that.I am not depressed .I have asked my family members to tell me if they see signs.I just want to feel better and get rid of my current symptoms.I feel offended by my Dr for suggesting that it is in my head!!
Anyway. I am looking for help here on this website because I think my Drs just don't know about aplastic anemia .My hematologist told me last time I was in full remission. My blood counts are not normal .I had horse ATG.I can;t imagine anyone is really in full remission unless they have a bone marrow transplant.Would love to hear thoughts.
Thanks,Ellen

[Marlene]

Hi Ellen,

John still sees his local hematologist once a year as well as an annual visit to Hopkins.

At this point, he could probably stop his local visit since he is not being treated for anything anymore. All they really do for him is a CBC, chem panel and urine analysis. All which can be done by a GP.

Marlene

[Ellen McDonough]

Marlene,
How long has John had SAA and how are his blood counts?
Is he symptomatic?
Thanks,Ellen

[Marlene]

John is in a stable, partial remission for quite a while now. His WBC is 4.4; ANC 3.3; HGB 11.7 - 12.2; PLTS 100 - 120.

His chem panel and urinalysis are all normal.

He feels pretty good. Still has some issues stemming from treatment that are not directly related to SAA. He is on testosterone hormone replacement.