Methotrexate is a wash
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AnonymousJanuary 18, 2008 at 2:39 am
I just got finished catching up on reading posts from the past week or two. I have been quite sidetracked lately. Thanks Stacey for asking about me. Got my splint on last Wed. and on Monday saw my neurologist who thinks I was still weak upon the muscle testing done so sent me for a comparative Nerve Conduction to see if the nerves are getting better or worse. On Wed. I got the NCT and the good news is that some nerves got better and some got worse which balances out my overall condition. Meaning I haven’t gotten worse. But I also have not improved as he had hoped which suggests that the Methotrexate is not really helping. So he wants me to try Plasma Exchange which I am not ready to embark upon right now. I can’t handle another procedure. Getting the port, dealing with possible infection, 5 days of hospital and then side affects. I just am not mentally ready for another adjustment. Even though I understand its potential for greater strength and endurance. I know that the port can be managed and that PP is not as invasive as other treatments but I just am not ready. Does that make sense? So he has compromised and lowered the Metho to 12mg instead of 15 in the hopes of lessening the 3 days of side affects and at least keeping my nerves in a holding pattern. He wants me to make a decision in the next 3 weeks. Not sure what to do. I am resigned right now to just rest, do what I can when I can, enjoy slowing down as I think it was Jeff suggested and listen to my instincts which have always been pretty accurate for me. Thanks to everyone who responded to my last post and gave me such helpful input. Any comments that anyone wants to share about PP is welcome. Thanks again you guys.
Linda -
AnonymousJanuary 18, 2008 at 2:43 pm
Linda, sorry metho didn’t give you the results we were all hoping for. While resting make a list of the pros and cons for your next journey, it might help you make an easier decision on yourself. yes there is always the slight chance of getting an infection, but then again if all steps are followed and you are the captain of your team of care givers, it really does lower the chance of infection to nil. I have been through the clots, infections and so on and made it out the otherside just fine and wiser than before. The good coming out of pp is the energy levels, ability to do more, live more etc. That in itself is a huge plus.
You have a few weeks to ponder the evidence, for now, sit back, sip on your drink of choice and enjoy your day. Good Health!:) -
AnonymousJanuary 18, 2008 at 10:19 pm
I am currently doing PP. To make a ver long story as short as I can–just took my meds and I have about 20 min before my pain meds and sleeping pill kick in. I have had 3 hosp stays. The first 2 stays I was treated with IVIG (I had a total of 11 the first stay and 5 (I think the 2nd stay). After my second relaspe my neuro warned me that if I relasped again he was going to try PP. Of course I had to go on the internet and look up exactly what was involved–scared me to death. I did not want to call my neuro when I knew I was relasping again but I had to since i could not move my arms again and my legs were weaker. I went in on Wed Aug the 29th and 15 days later I got out. I was supposed to have 5 treatments one everyother day but ended up having 7. When I got to the hospital they put a vas cath in my groin area (yes it hurt–they lied to me when they said it wouldn’t lol). I started PP the following morning. I think the 1st treatment took about 3 hours. They first gave me albulium (sp) depending on the size of the bottles get 6 small or 3 large and 3 bags of ffp (fresh frozen plasma). before I get the FFP they give me tylenol and benedryl. I take tabs for the tylenol and they put the benedryl in my cath. Two days before I got out of the hosp they removed my vas cath and put in a tunnel cath in my chest. only way you can tell I have something in my chest is if I wear something low cut. to say the treatments have given me my life back is an understatement. I am back to work full time and driving! When I went in the hosp I was using a walker, when I got out I was using a 4 prong cane. I am using a reg cane now. I did not notice any change until after my 3rd treatment. Before I could not turn door knobs. When I was in the hosp they would shut my bathroom door so I would have to call for a nurse or aid (they were afraid I would fall)(I was notorious for trying to do things myself) anyway I got up out of bed, got my walker went and opened the door –didn’t think anything about it until I got back into bed. I was so excited!!!!
After the 5th treatment I was walking around with the cane PT left me, having a ball! When my mom or my friends would come visit I would make them walk downstairs with me to the coffee shop to get a latte. When I was able to walk with the cane PT would take me downstairs–they let me walk using the cane instead of riding in a wheelchair and had me doing all kinds of exercises, I was so excited I could stand up by myself! If you want to call me and ask me anyother questions. PM me and I will give you my phone number. If you have a cell phone and have verizon you can call me free on my cell.
Oh before I forget after I got out of the hospital I was doing PP once a week for 8 wks, then once everyother week. Now I am doing PP every three weeks. My treatments now run about 1 hr 45 min. They can speed up the flow once they see that you do not have any major issues. I do break out with hives sometimes but I take benedryl once I get home. It does take alot out of you. I usually come home and sleep for the rest of the day.Good luck.
MJ -
AnonymousJanuary 19, 2008 at 11:18 pm
Cheryl and MJ,
Thanks so much. Cheryl, are you getting PP now? I am more tempted everyday to try something that would give me more energy. I hate this lethargy and exhaustion. I am just nervous about getting infections with my immune system already being suppressed with the Methotrexate and Diabetes. Just not sure. I am grateful for your input. Thanks.
Linda -
AnonymousJanuary 20, 2008 at 9:35 pm
I take prednisone and Imuran. I am extremely paranoid about getting sick (that is what started my nightmare!) anyway I am extremely careful, I wash my hands about 10 plus times a day, use anitbacterial hand sanatizer and when I am at work I clean my desk with anti bacterial wipes as soon as I get in (key board, mouse, phone, etc.) I have lysol I spray after some leaves my cube and if they are sick I ask them to stay out of my cube (I explain why and they understand) I take vits (multi,Calcium with D, B12 sublingual and a B-Complex with C). If you have any questions you want me to ask my PP Tech I will–my next one is this Friday. Good Luck on what ever you descide.
MJ -
AnonymousJanuary 24, 2008 at 1:16 am
Thank you MJ for all of your input. What is it like having the port and how long can you keep one in? Was it an out patient procedure putting it in? Is it difficult keeping it sterile? Will I have to give up swimming at the gym? How long are you going to be getting the PP? Sorry so many questions. Thanks again.
Linda
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