Hi everyone I am not sure if I am writing to vent or get some great suggestions maybe a little bit of both. I have been having a hard time the last three years going from flare up to flare up. My doctor put me on methotrexate and it seemed to help for a minute then the side effects started the hair loss vomiting ( daily) and diarrhea . I lost 125 pounds in 10 months and became malnourished, anemic, and my hemoglobin kept falling to 4 I have been hospitalized several times and given blood transfusions unfortunately I have developed an anti-body to A positive blood so that is another complication. Has anyone had a similar experience with methotrexate? and what solution did your doctor come up with? As for my finances I am over 80 thousand in debt for medical bills and must file bankruptcy I am also losing my home . I recently told a friend that I feel like this sneaky trickster disease has taken everything from me and now its taking from my family. Any suggestions would be greatly appreciated.
Have they thought of switching you to a different treatment, maybe one thats a little milder? I don't know the answer I've had similar problems, I do know from my own experience its frustrating , overwhelming and down right frieghtening I feel for you and your family and all you are going through. The cost of being chronically ill can easily bankrupt the best of us, I had insurance and that 20% ran up close to 250,000 thats just the doctors and hospitals, the meds were about 1600 a month out of my own pocket with prescription coverage. You are not alone most of us have been down your road at one time or another, here you can vent all you want, here we understand and can appreciate what your going through. I hope this helps you a little remember were all in this together. take care of yourself.
Get on disability right away…also…dont worry about medical bills…give then five dollars a month…no one can take your house when your disabled…its illegal…you have squatters rights…good luck…we are here for you…
Are you sure the methotrexate is causing your blood counts to be low? I also have a hemolytic anemia that causes my Hgb to tank and the need for transfusions etc but it is an additional autoimmune disease not as a result of medication Oh and I have antibodies against all types of blood too- again part of the illness My blood has to be specially prepared to remove the antibodies prior to transfusion
Awesomed are you sure it’s illegal for the bank or govt to take your house when you are disabled?
Julie,
I am so with you about everthing…I’m so tired of this illness along with Gastroparesis and others I could just give up. Can’t afford meds, can’t afford anything. I stick with prednisone, oh I know everyone will say it’s so bad, well it’s been 25 years and I’m ok , I’m not suffering because of the steriods anyway?! Keep venting, it helps!
I would also question if everything is caused by your methotrexate. Acute anemia can be caused from many other things including DIC which can happen in many autoimmune disorders. I know it is easy to say but please don’t stress about the money. I pay my hospital $50 a month for a huge bill. We have actually been offered to pay half of it now and they would write off the rest. We can’t even afford that now but I have heard that many hospitals do that.
I do hope you are able to get disability and that you are soon on your way to better health!
I know here in florida they can and will take your house regardless of your disability, I know people who have lost their homes, the banks don't care its either pay up or get out. Deb said:
Awesomed are you sure it's illegal for the bank or govt to take your house when you are disabled? Julie, I am so with you about everthing...I'm so tired of this illness along with Gastroparesis and others I could just give up. Can't afford meds, can't afford anything. I stick with prednisone, oh I know everyone will say it's so bad, well it's been 25 years and I'm ok , I'm not suffering because of the steriods anyway?! Keep venting, it helps!
Hi Julie! I m sorry about all the problems you have been facing. I was on methotrexate a few years ago and had to be taken off of it. The medication made me very nauseous, I stopped eating, lost a lot of weight, worsened my already existing anemia, hair loss, I could barely lift my own head, had fevers of 103, and it affected my liver. They took me off it and put me on a higher dose (much higher) of prednisone. I've gotten better since then but have still not been able to find that "miracle" drug to keep me balanced. Good luck and I hope you feel better!
Thank you so much for your suggestions and just plain care. I had forgotten for a minute that I am not alone. b1007 I am making an appointment with my doctor to discuss the other options besides the methotrexate, it sounds like we could be twins in the way the medication effects us. I am shopping for a new doctor as well I had one in Dayton Ohio before ( Sanford Wolfe) that got me in remission and kept me there for five years so I know it is possible. We ( whatever doctor I choose) just need to find the right mix at the right levels before it was plaquinel and prednisone only during a flare and as I said I was in remission for five years unfortunately I am unable to take plaquinel any longer. Has anyone been in a similar position and what protocol did you and your doctor come up with. Again everyone thanks for caring and listening I really appreciate it .. PS in the state of Ohio they can and apparently will take your house even if you are disabled :(
As I read your post, my heart just broke for you and those of us who continue everyday to try to deal with the huge ramifications of the effects of this disease.
I am a registered nurse who also has Lupus. I am presently writing you from the hospital where i am having a stint of treatment for severe asthma exacerbated by my Lupus and other autoimmune conditions.I have been on methotrexate many times, but have not experienced the devastating side effects that you have had. I do have a couple of questions for you.
Are you working at all? Have you applied for Social Security benefits if not? Remember, Bankruptcy can be a new beginning for you financially and there is no shame in starting anew financially. This might also help relieve some of the incredible financial stress that you might be going through. Also, get a second opinion. Even now, when I am pretty happy with my medical team I find someone who is highly recommended and take my case to them to see if another eye might be able to give me some insight that my team and myself might have missed.
Don't give up. This is a treacherous and very sneaky desease. I have recently started using meditation as one of the tools in my toolbox to help me handle all of the associated stress.
God Bless you, take it one day at a time. one moment at a time, One breathe at a time,
Did you doc tell you to take vitamin B6 with the drug??? I think it’s B6 - check with a pharmacist. This drug can cause a severe vitamin B deficiency & you are having those symptoms (one of them being hair loss). Have you had a vitamin panel blood work done?
Have you applied for free medical??? State thing for people who don’t earn enough to pay for a medical plan? With that ins they can’t take your home or force you to sell. And, as long as you pay a portion of the bill every month (even if it takes you 50 years to pay), they cannot take your home - PERIOD
Julie since you are my Lupi-twin and our bodies seem to react similarly, let me know if you find something that works! Since the methotrexate, I've tried many others with no success bleh Good luck!
I would consult with an attorney for options - never ever put medical bills on a credit card’!!! Let them bill you & then pay on a payment plan that will be determined by your income. You can also review the bills & renegotiate costs charged. Don’t give up!
Julie since you are my Lupi-twin and our bodies seem to react similarly, let me know if you find something that works! Since the methotrexate, I've tried many others with no success bleh Good luck!
My heart pours out to you. I am not in your situation but Lupus has seemed to robbed me of my life. My kids don't have the same mom, my husband doesn't have the same wife. My work has been affected as well, I can't do what I used to. I am 30 years old. I have 2 children, 3 and 12 year old boys who need their Mommy. The financial stressors are not as bad as yours (yet- hopefully never) but you never know. It is really awful how Lupus can cause so much suffering and so little understanding from other people. I would try to get on disability asap. Or, like MiMi suggested, SSI or bankruptcy could be a fresh start if that is what it comes down to. Just remember that you are never alone. This site has been a true blessing for me. I hope you find some comfort in at least knowing that you are not alone in your struggles. Lupus can rip your life apart. I don't think God let's the weak get it. You can and will get through this. Just keep us posted and know that I will be thinking of you and I know many others here will be as well. Best wishes your way and gentle hugs.
Thank you so much for the positive words of encouragement. I am going to look at this whole thing a "do over" I am looking for a single level house to rent and its a chance ( and reason) to get rid of all the things we are no longer using some mens shelter is going to get a lot of gently used young mans clothing lol at least i'll know I am helping someone else and less to move Yay! I like you worried a lot about my son when growing up ( diagnosed while pregnant) he has never known me without SLE Lupus and hes 22 now. If its any encouragement to you my son loved that we played board games all night every Friday or on days when I was too tired to move. And if I was having a good day well we took advantage of it like bandits in the night oh btw I am already on ssi disability making much less than I did when I worked God Bless again thanks for te support. Julie Alex said:
My heart pours out to you. I am not in your situation but Lupus has seemed to robbed me of my life. My kids don't have the same mom, my husband doesn't have the same wife. My work has been affected as well, I can't do what I used to. I am 30 years old. I have 2 children, 3 and 12 year old boys who need their Mommy. The financial stressors are not as bad as yours (yet- hopefully never) but you never know. It is really awful how Lupus can cause so much suffering and so little understanding from other people. I would try to get on disability asap. Or, like MiMi suggested, SSI or bankruptcy could be a fresh start if that is what it comes down to. Just remember that you are never alone. This site has been a true blessing for me. I hope you find some comfort in at least knowing that you are not alone in your struggles. Lupus can rip your life apart. I don't think God let's the weak get it. You can and will get through this. Just keep us posted and know that I will be thinking of you and I know many others here will be as well. Best wishes your way and gentle hugs.
After considerable thought I am treating this as a do over and have decided to file bankruptcy, it wont save the house ( I am in an upside down mortgage) however that has a good side too. I can get a one level place so no stairs YAY! Sometimes it really helps to get ideas from someone that is going through the same issues Thank you so much for the ideas and care. God Bless Julie
Hi Julie,
As I read your post, my heart just broke for you and those of us who continue everyday to try to deal with the huge ramifications of the effects of this disease.
I am a registered nurse who also has Lupus. I am presently writing you from the hospital where i am having a stint of treatment for severe asthma exacerbated by my Lupus and other autoimmune conditions.I have been on methotrexate many times, but have not experienced the devastating side effects that you have had. I do have a couple of questions for you.
Are you working at all? Have you applied for Social Security benefits if not? Remember, Bankruptcy can be a new beginning for you financially and there is no shame in starting anew financially. This might also help relieve some of the incredible financial stress that you might be going through. Also, get a second opinion. Even now, when I am pretty happy with my medical team I find someone who is highly recommended and take my case to them to see if another eye might be able to give me some insight that my team and myself might have missed.
Don't give up. This is a treacherous and very sneaky desease. I have recently started using meditation as one of the tools in my toolbox to help me handle all of the associated stress.
God Bless you, take it one day at a time. one moment at a time, One breathe at a time,