Taken OFF tx

[couchpotato]

Due to my husband's ongoing low platelet count his doctor has taken him OFF tx. He is not getting enough meds in his system to slay the f****** dragon! Could you people in the know, please write in and give us info and web sites pertaining to new tx's that are coming up in the future. I want to be informed as much as I can be when we go see his doc. Also, anyone else out there who's been taken off tx, what are your views on all this and do we have hope in the future for a new wonder drug and a better kick at the cat?

[audreywald]

I have a really good doc in Chicago, he does only Hep C and is head of the transplant unit at Northwestern Memorial Hospital.

He says for sure within 5 years there will be new treatments.
I hold on to that in case this does not work or I get taken off.

It will be ok.

[Dirac]

Did your husband's doctor try other medicines to treat this
side effect? In my case I had a low white blood cells because
of tx but I asked for neupogen to solve this problem. It did.
I used to take one shot every week besides my tx. I am not sure if neupogen would solve your husband's problem or not and also for red blood cells dropping there is another medicine but I do not remember its name now. Good luck.

[kennedge]

low wbc = nuprogen
low RBC = procrit
low platletts = numogena

spelling???

[DownThisRoad]

If the dr. took your husband off treatment only due to low platelet counts, then this dr. is not aggressive with the treatment and the treatment meds.

The two most common complications that the combo meds can cause are low platelet and also low rbc counts.  There are plenty of people who have to take another medicines for these low counts while on the hepC meds.  This is nothing new and many have been able to stay on treatment and be given a good chance to get this virus out of their system, with other medication assistance.  I have to take Procrit for my extremely low rbc while on my treatment.  I've been on Procrit since week 7. I am now into my 35th week.

I would search for another doctor who is aggressive with hepC treatment and up to date with not only the combo therapy medications but also the other medications that hepC patients can take in order to follow through with treatment of this disease.

As you both know, getting started on this treatment is not at all easy. Not easy for the body or the mind.  To get yanked off after starting would only be the very last resort if a patient absolutely can't handle the medicines.  The low platelet count can be common.

Call the dr. back immediately and see what he has to say about getting other medication to assist your husband and stay on the treatment.  If he doesn't suggest that for your husband and doesn't want to follow through with this, then I would definately start making as many calls as possible until I found a solution to your husbands problem in order to keep him on the treatment program.


How long into treatment was your husband?

[mikesimon]

Different doctors have different thresholds when it comes to platelet count. I have been as low as 25,000 and remained on tx without any supplementation. My platelets rebounded somewhat and now they are at 57,000. It really depends on your doctor's approach and some play it safer or more conservatively than others. Honestly, my doctors were never very concerned but then my situation is not typical. Mike

[Southernboy]

Hi,
There was just published a study done by Dr Van Thiel at UMC in Maywood, IL.  He used Rofecoxib (Vioxx), the anti-arthritis drug to treat patients who were on tx for HCV and having this same low platelet problem.  His early results look very encouraging.  Low platelets are caused by two factors, the damage to bone marrow by the tx meds and the inability of the spleen to dump into the liver when the liver is badly damaged. This causes the platelets to back up in the spleen. You can read the early study results at: www.natap.org/2003/AASLD/day7_1.htm

I hope this provides some help,
Steve

[katch20]

See if your husband can get into a trial with Thymosin instead of the ribavirin.  It seems to be easier with the sides and phase 2 and 3 trials are very promising.  My hepatologist said 3 years for new treatment/cure.

be well

[Tri-guy]

Sorry to hear your husband was pulled off tx.  I had to stop tx last winter when I developed an intestinal infection from really low WBC’s.  Now I’m on the Pegsys combo and haven’t had a problem.  This time around I was also better educated and more prepared.  

I would highly recommend anyone starting tx to talk with their doc to find out what their course of actions will be if various sx become a problem before hand.  I also found that my insurance company only pays for certain medications in conjunction with the HCV treatment so I got pre-approval on several prior to tx to make sure there would be no hold up on getting any med’s I needed quickly.

Best wishes to you.

Brian

[couchpotato]

Hi, thanks for all the responses, I should tell you a little more. His platelet count has been as low as 20 and as high as 40. This was a cause of celebration in our house! His liver is in bad shape, he is genotype 2 and would have done the 24 weeks ending Fed. 27. We are alos in Canada and have mention Neumega on many different occasions but all the quacks up here say there is NOTHING that will boost platelets other than maybe a blood transfusion.....that was never forthcoming, and just basically poo-pooed. His platelets have always run low (that is kinda how we found out about the hep), and not really what you could positively blame on the meds, but they certainly didn't make them better. Thanks for your help, we see his doc. Jan. 19 and will keep our fingers crossed as to what he tells us.  Your help and understanding is unmeasureable, I am really grateful you all there to help people like us.

[CARUU]

I'm doing 3/4 dose tx in a little while.  My WBC is down, but back up a little since last Monday.  I got the call this evening saying to reduce the dose and get tested again in a week.  Hope this doesn't continue!  As much as I dislike the tx, I really want to stay at full dose.  I'm also waiting for 12 wk. PCR results. Waiting is nerve racking!  It's so helpful to have this forum to come to.  Thanks to all for sharing your knowledge and support.

[glamazon]

I had a problem with Thrombocytopenia (low platelet count) long before Tx, partly due to complications from HIV and that Tx. After 24 weeks my doctor took me of the Riba, partly due to anemia and partly due to platelets, if I understood him correctly. I just got off FMLA after three months -- still losing my hair and am brain fogged -- but I have to get back to my job if I expect to keep it. My platelets are still low -- in the mid 30s -- but my doctor is being as agressive as possible without killing me. I've interrupted Tx twice (skipping a shot) but I'm still on it and have "only" 17 more weeks to go.

Christine