Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 BARBARA, THANKS SO MUCH FOR YOUR INFORMATION. GOSH WHAT YOU'VE BEEN THROUGH!! I ALWAYS GOT THE HEADACHES FROM THE METHO. THEY DID EASE OFF, BUT WERE STILL THERE AND JUST LASTED LONGER. LOL I WAS NEVER TOO NAUSEATED ON METHO, BUT HAD ALL OVER BODY PAIN. KIND OF LIKE A BAD FLU. FOUND I WAS THIRSTY ALL THE TIME TOO, FELT DEHYDRATED. SURE HOPE YOU CAN GET BACK ON TRACK AND GET BACK INTO REMISSION. PLEASE KNOW THAT I LOVE TO HEAR FROM YOU. POST WHEN YOU CAN. HUGS CLAUDIA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 To answer questions: to Dawn: I have been on prednisone continuously since Aug 1998. I have been anywhere from 20-60 mgs per day. The average dose being at 40mgs. The disease is the worst in my head - with eye pressure, ear popping and terrible temporal headaches. I went on the Enbrel in Oct 1999 and since that time have been able to keep the prednisone at 20-30 mgs., and the headaches are much better. I still get headaches on Mondays as I take my methotrexate injections on Sunday nights. : My first signs of hip pain began in July of last year - at that time I was going to Mayo Clinic, so waited to tell them about it. The doc there decided it was arthritis and gave me an injection of cortisone in my hip joint. That did make is feel better for about 3 weeks and the pain came back. I kept complaining about the pain to my local rheumy and finally in November I was limping from the pain, so he ordered and MRI. He was shocked when my scan came back with (bilateral avascular necrosis) which means that both hips were rotted out from over use of steroids. He immediately put me on crutches and I was on crutches until I had my hip surgery. The right hip was the worst and I had that one done in February. Now the left is really acting up - so will have that one done in the fall. Sandy: Yes, I am back on the metho and the Enbrel. I have been for about 4 weeks and I think we finally are going into remission again. I had been doing really well and had been in remission for about 6 months. If you count remission (being pretty much pain free on lots of drugs)!!! I take Indomethocin (for pain), Prilosec (for my tummy), Guaifen (to clear my sinus), Prednisone (to control this wonderful disease), 1200 mg Vit C, multi vit, Folic Acid (to boost the methotrexate), Enbrel and Methotrexate injections. I will be happy to answer any other questions you may have - Now I have one - does anyone else get a terrible headache the day after they take the methotrexate. I didn't get as sick on the pills as I do on the injections!! Is this a side effect that I just need to get used to??? I was also getting nausea from it until I started taking it twice a day - morning and night. Now I just get the headache. Thanks to everyone who is part of the support group - don't know what I would do with out you!!!!! I don't post much - but sure do read everyone else's post - thanks again!! Barbara from SD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 --- Bob & Barb Angerhofer angerhob@...> wrote: > To answer questions: > to Dawn: I have been on prednisone continuously > since Aug 1998. I have > been anywhere from 20-60 mgs per day. The average > dose being at 40mgs. > The disease is the worst in my head - with eye > pressure, ear popping and > terrible temporal headaches. I went on the Enbrel in > Oct 1999 and since > > > Barbara from SD > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2001 Report Share Posted May 30, 2001 In a message dated 05/22/2001 9:19:34 PM Central Daylight Time, angerhob@... writes: << - does anyone else get a terrible headache the day after they take the methotrexate. >> Barbara, I get the headache the same day as the meth, I usually spend the morning really nauseaus (?) and about the time that starts to pass (around 4 or 4:30), the migraine sets in. Talked with my PCP about the headache and he told me to take two of my pain pills (Vicoden) at 4:00 to see if we could stop it before it begins and sometimes that works, otherwise it's a totally dark bedroom and God help the person who makes ANY noise! What's weird is that is doesn't happen all of the time. I've noticed that since we started splitting the Metho up (10mg AM; 10mg PM) that I can sometimes control the headache with just Tylenol - sometimes. But, hey, that's better than all the time! You have certainly been thru a lot with this stupid disease, hang in there and use us, we are all here for you. I have a question for you: does this hit the bones, e.g. I have had 3 back surgeries and my back is a constant problem, but lately I've had pain in the clavicle (?) - collar bone, and it feels like the pain is in the bone. Is this from the RP? Sometimes it is so hard to figure out what is causing the pain, I KNOW what causes the pain in my spine, and the hips, knees, shoulders,elbows, feet are from the arthritis, but this is a new one. Any ideas? Take care, Love, Judy O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2001 Report Share Posted June 5, 2001 JOstry93@... wrote: > > In a message dated 05/22/2001 9:19:34 PM Central Daylight Time, > angerhob@... writes: > > << - does anyone else get a terrible headache the day after > they take the methotrexate. >> > > Barbara, I get the headache the same day as the meth, I usually spend the > morning really nauseaus (?) and about the time that starts to pass (around 4 > or 4:30), the migraine sets in. Talked with my PCP about the headache and he > told me to take two of my pain pills (Vicoden) at 4:00 to see if we could > stop it before it begins and sometimes that works, otherwise it's a totally > dark bedroom and God help the person who makes ANY noise! What's weird is > that is doesn't happen all of the time. I've noticed that since we started > splitting the Metho up (10mg AM; 10mg PM) that I can sometimes control the > headache with just Tylenol - sometimes. But, hey, that's better than all the > time! > > You have certainly been thru a lot with this stupid disease, hang in there > and use us, we are all here for you. I have a question for you: does this > hit the bones, e.g. I have had 3 back surgeries and my back is a constant > problem, but lately I've had pain in the clavicle (?) - collar bone, and it > feels like the pain is in the bone. Is this from the RP? Sometimes it is so > hard to figure out what is causing the pain, I KNOW what causes the pain in > my spine, and the hips, knees, shoulders,elbows, feet are from the arthritis, > but this is a new one. Any ideas? Take care, Love, Judy O > > DISCLAIMER!! > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2001 Report Share Posted June 5, 2001 Barb, So Sorry to hear that you are still having such a rough time of it! I will be sending good thoughts and prayers your way. Too bad that the doctors don't know our bodies as well as we do. Lots of Love Glenda I had hip pain for a long time and complained and complained but docs just put me on more pain meds - finally it got so bad that I was limping severely and then an MRI showed what the problem was. My doc was really surprised and felt bad that he hadn't taken me more seriously sooner. Take care and good luck - Love Barbara for SD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2001 Report Share Posted June 6, 2001 > > > > In a message dated 05/22/2001 9:19:34 PM Central Daylight Time, > > angerhob@d... writes: > > > > << - does anyone else get a terrible headache the day after > > they take the methotrexate. >> > > > > Barbara, I get the headache the same day as the meth, I usually spend the > > morning really nauseaus (?) and about the time that starts to pass (around 4 > > or 4:30), the migraine sets in. Talked with my PCP about the headache and he > > told me to take two of my pain pills (Vicoden) at 4:00 to see if we could > > stop it before it begins and sometimes that works, otherwise it's a totally > > dark bedroom and God help the person who makes ANY noise! What's weird is > > that is doesn't happen all of the time. I've noticed that since we started > > splitting the Metho up (10mg AM; 10mg PM) that I can sometimes control the > > headache with just Tylenol - sometimes. But, hey, that's better than all the > > time! > > > > You have certainly been thru a lot with this stupid disease, hang in there > > and use us, we are all here for you. I have a question for you: does this > > hit the bones, e.g. I have had 3 back surgeries and my back is a constant > > problem, but lately I've had pain in the clavicle (?) - collar bone, and it > > feels like the pain is in the bone. Is this from the RP? Sometimes it is so > > hard to figure out what is causing the pain, I KNOW what causes the pain in > > my spine, and the hips, knees, shoulders,elbows, feet are from the arthritis, > > but this is a new one. Any ideas? Take care, Love, Judy O > > > > DISCLAIMER!! > > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU > > > > Quote Link to comment Share on other sites More sharing options...
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