Been gone a bit...Seems I have Hepatitis and they believe it is drug induced from Fragmin.

[pumpkincake]

I have not been very well for over a couple weeks and moreso the past week. Lost 13 pounds...cant eat...just feel terrible. Docs checked blood tests and I have hepatitis...most likely drug induced from Fragmin. THIS makes me very sad...because Fragmin was working so well on my APS symptoms. BUT...my liver just cannot take it. I have had IV fluids three times within this week and the fatigue and nausea are just horrific. I return to the doctor monday.

Seems like you gain a little bit...then hit back a mile.

Just wanted to let you all know I am here...just not up to par at all.

Hang in there everyone...

Beverly

[MaryF Administrator]

I am so sorry to hear this, do keep us posted of any new developments and I hope you have tlc around you! Mary F x

[kathyD64]

Hi Beverly really sorry to hear you have been so unwell esp as it was working. Lovely to have you back on site you are always so positive to everyone

take care hun sending you big hugs kathy xxx

[Suzypawz]

So sorry to hear this, I hope there is some improvement for you soon xx

[Beckyl1]

Hope you feel better soon hun, take gentle care of yourself x

[Manofmendip]

Hi Beverley.

I'm so sorry to here this.

I had two bouts of hepatitis in the 1990s, before I was diagnosed with APS, and no cause was found. Prof Hughes told me that he thought that I probably had clots in my liver.

This is so sad as Fragmin worked for you for the APS.

Good luck and best wishes.

Dave

[bernieembleton]

Sorry to here you are ill with Hepatitis. Hope they get you sorted soon. Take care.

[paddyandlin]

Beverley,

I am sorry to hear you going through the mill and we all here for you if you need us

paddy

[KellyO]

Hope you feel better soon, your in my thoughts! Take care

[SueLovett]

So sorry this has happened to you I really hope you will make a good recovery

x

[Hidden]

So sorry to hear of your woe's....But I am very interested and concerned and would like to know more- I am on Fragmin- I was taken off of Warfarin ( was on it for 19 years and had over 10 clots while in perfect INR range)-So new Doctor feels that because of past history I should always remain on LMH- So I have been on Fragmin almost a year now- There has been a drop in my Vitamin D,Cand Protein, so now I take supplements...Please if you have any additional info on your Illness I would be very interested in knowing on your progression and diagnosis and how it was related to Fragmin.

Thanks

[pumpkincake in reply to Hidden]

Hi...

My doctors are working on figuring it all out as this is going on. Seems Fragmin was too hard on my liver and it caused the hepatitis. I have elevated liver enzymes, bilirubin spilling into my urine in high amounts and just plain sick. I had a temperature for 7 days and thought I had the flu or a virus. The fever never got over 102. and when I broke I thought it was the end of it. I didnt realize I still had a low grade temperature and have since then. I was very nauseated with the temperature and didnt eat. (thinking it was the flu...that made sense to me). So I still could not eat and began feeling worse quickly. I have lost 15 pounds so far in a probably 2 1/2 weeks. The worse part is I am still taking Fragmin because my docs are so worried about clotting...as am I. BUT I would rather go back on Coumadin with a really high INR then live like this.

I have been to the hospital to get IV fluids 4 times so far from dehydration. Had ultrasounds done to be sure nothing else was going on..and it isnt. I am telling today it is time to stop Fragmin. I just cannot live like this.

Clinical trials with Fragmin never showed a problem with elevated liver enzymes...or at least that is what the pharmacuetical company told me. I have read that there are those who cannot tolerate it...I guess I am one of them.

Different drugs can react differently in everyone. I just cannot tolerate Fragmin. Dont be discouraged though. Many others on Fragmin do very well....as you can see on here as well.

I had concerns about long term LWMH but we need to do what we have to do for our health. I am hoping to try Lovenox to see if I can tolerate it but the cost is so high I cannot afford it here...and I am uneliglibe for thier assistance program.

Just to let you know...on Coumadin I too had drops in Protein C and S...that can be common but I dont know if it is so with Fragmin.

Hang in there...I will keep you posted. Just remember our bodies are all different and we react differently to things.

~ Beverly ~

[Hidden]

Beverly-

FYI I don't know where you are but I am in The USA and we have here what is called the RX Outreach Program- which give free or very low cost meds to folks who need them- I too was on Lovenox before I started Fragmin-( I am on SSD and with my insurance my copay for either med would be $1900.00 a month!) So I get the Fragmin free from Rx outreach program.

Anyway yes being on the Fragmin my Vitamin C and D and protien levels so far have dropped and now are taking suppliments also I need to take a Satin drug for my cholestrol which is so high-

Because I have had atleast 8 known clots in my right leg I have prepherial Vascular disease, chronic vein insuffiency, But I am thankful I don't have to worry about the INR craziness-

I realize that this weird syndrome/disease affects so many people in so many different ways and yet it is so interesting to learn about each individual persons life story..........

Thank you for your quick response!

Be well and feel better!

Mary!

[pumpkincake in reply to Hidden]

Hi Mary...

I am in the US also. I do recieve the Fragmin for free as well. My doctors wanted me on Lovenox because they felt there were more studies done with Lovenox. I applied with Sanofi anventis assistance program but my use of Lovenox for Coumadin failure is not an FDA approved on label use of the drug...so therefore is not covered in thier assistance program. EISAI on the otherhand approved Fragmin in ONE day and it was in my hands 2 days later.

I have peripheral artery disease as well. I was on Coumadin for 12 years and just switched to Fragmin a month ago.

Did you learn you had PAD prior to of after you APS diagnosis??

I agree that it is interesting to learn about what others have been through or what we are going through.

Take care and best wishes,

Beverly

[Hidden]

Beverly-

Glad to know you are in the States! I see that most people on this site are over in England! I am in Brooklyn New York!

I do not have PAD- I do not have arterial plaque build up or any diseased arteries.....I have issues mostly in all my Veins- Similar just as dangerous but not as life threatening as PAD as that automatically implicates "Heart" issues- I guess my issues are where as I have a shut down/closure of my veins- clots in the veins PVD- I don't know..it's F'd up- but I did have all the doplers and tests for PAD and was cleared for it-

OH I can't believe the cost of these injections!! WE need them like the air we breathe!! Vicodin is only 15.00 !!! Some thing is wrong somewhere!!!!

Mary!